Disabled Rants

2008-05-05T14:26:00.005+01:00

The title of my brother, John's, last post, is painfully ironic (Okay, okay, I give in!!!). It is with deep sadness and regret that I have to tell you that John (jonny5) gave up his long battle with illness the afternoon of Sunday 4th May 2008.

As he always suspected, an infection quickly took hold and within 16 hours of being admitted to hospital, he passed away peacefully, surrounded by all his family and friends. He was conscious until the last few hours and was fully aware of what was about to happen. He calmly said his goodbyes to those he loved and kept his unique sense of humour until the last, joking with me that he was being a naughty boy by leaving us.

I'm sure he would want me to pass on his thanks to the army of nurses who looked after him during the last 4 or 5 years, as well as his friends in this virtual world created online. Those healthcare workers who helped brighten his life and showed care and compassion, you know who you are, we all thank you. Writing this blog was such a joy for John - almost like a special unique form of therapy. And I know he truly appreciated the comments left by his fellow bloggers.

As it should be, I will leave the final word with John. This morning, John's wife, Jude, asked me to look at his laptop to search for some documents. On the desktop, there is a folder with some instructions for his family, with the following quote...

"I am ready to meet my maker, but whether my maker is prepared for the great ordeal of meeting me is another matter. Sir Winston Churchill."

Little Sis
(Ruth)

2008-03-10T18:17:00.001Z

Okay,okay,I,Give In!!

Right I can only take so much of all this nagging by you all to get my arse (sorry Mother!!) in gear and start entertaining you all again so, just to jeep you quiet for a minute here’s a bit of an update. God this update thing is being used far too much on this blog, even I can see that with the state my eyes are in, which leads me nicely into the first topic for today. My Eyes. Since you ask ehings have not been well on the eye front, in fact they have recently caused me to spend a few days at Heath Towers where they were only too glad to see me, but strangely seemed a lot more happy when I was leaving, which I put down to the fact I had cheered them all up with my usual wit and charm!! I had got another infection in my right eye again where the tear duct had again blocked up. Thankfully a few days on IV’s and then I was kicked out, I mean allowed to come home!! They are now planning to do an operation on my eye to put in a drain tube into my nose to stop this happening again. Still have the GVHD though which is causing the usual problems with my seeing things properly, like when driving my chariot through Heath Towers with my eyes pretty much closed. You ought to try it, its great fun using peoples legs and feet to keep you going in the right direction. Its amazing how many people turn around and appologise to me when I’ve slammed full pelt into their ankles Ha Ha Ha!! Next I guess is Merlin and the Willy Wonky Light Machine Thingy. Not much progress of late apart from him saying that the head of finance was keen to see this treatment go ahead. Last but by no means least, for now anyhow, because I know you lotmoan like hell when the blogs are too long, is the Building Extention. Good news all round on that score. The grant has been approved last week so the next step is a site meeting here in Jonnys Den on 27^th March then work is expected to commence 2 weeks later. I’m off to mother dearests for the duration of the build so no bacon and cement sandwiches for me thank god. Thankfully she foesn’t live too far away so although I have to change a few things like GP’s and District Nurses and the bed supplier all the hospital stuff can remain the same. Mum and Dad have been slaving away for ages trying to get things just right for my grand arrival and it will be very much appreciated, Thanks A Million Mum & Dad.

Right then punishment over for today, for both of us I think. I’m off to rest my eyes and may I sugest you relax and help yourself to a stiff one to regain your sanity??

See Ya!!

2008-02-20T04:34:00.003Z

Okay then I left you last time with me heading off home for my turnkey and all the trminigs. I never quite felt completely fine but that was nothing unusal for me anyway. After a few days of generally the same as any other time of year the tell telltale symptoms started for a chest infection. Christmas I find is just another normal day to me as all the joy, what was left of it anyway ground to a halt at "The Princess Of Wales Hospital" where I came across this evil monster that has continued to take over my life and euduce it to the meagre existence it is today. I was diagnosed rather horribly and unprofessionally on 17^th December 2003 whilst waiting in a elderly unit that was full of poor old fonfused people screaming and shouting and crying etc as well as trying to pull their dripsout aand getting out of bed when they wern't supposed too. But back to the point, the doctor on call came in to see me with a nurse amd almost his exact were spmething like," you have Leukaemia and we are going to try moving you later over to "Heath Towers" and with that he upped and left along with the nurse who did actally give me some comfort in the shape of a pat on the back whilt heading out of my curtain prison at break neck speed. Well this is heading of in another direction now so let me get back to what it is supposed to be about . So then after my almost week of rest and recoup at home in which time the security checks as in general health, strictly on coughs and colds etc along with the most important being unless you are prepared to completely pamper to my every need and desire with no complaining then don't even try coming in because the vicious gaurd dog "Puppy" will love nothing more than to deprive you of a leg or two. I can never quite know why I never ever have any visitors etc call in to see me for a chat or whatever!!

Okay then after a couple of day I was back in to heath towers to get messed around with some more to try clear up this thing aas the antibiotics I was taking at home were just not stronger which is all too often the case and results In there always be a full ward and day unit too along with the people who are on the waiting list for a bed to come in sothat they can continue their treatment. As many of you are aware this problem of being able to get a bed so that you can start treatment has been a pretty major on my part but more seriously fatal in others sadly. In my case I came out of remission after a very short time after having my firtst dose of chemo mainly because I was unable to get back in. If I remember it correctly it was around the time I managed to pick up the dreaded Psuedomonus virus whilst in there and this has gone on to prove to be the sourse for more than about 75% of my admissions here with chest infections, each one taking away that little bit more breathing ability which is not good. So this chest infection I have at the moment is as far as we can see fom the blood test, xrays, scans etc not the psuedomonus but some other nasty little bugger. I had been feeling very lethargic befor coming in eventually wheb my temp spiked. They have put me on a course of ab's which have eventuakky started to work and have cleared up all the other symptoms but left me with chest problems. I am requiring to be on a permanent 2 litre oxygen feed to assist my lungs. I am very wheezy and still coughing a whole lot, but despite doing all the exerscises not bringing anything up in the way of mucus etc. The cough is almost relentlas and can go on for a few hours which is not only harder to breathe but because of the length of time it goes on it really takes it out me afterward physically. So until they get me a whole lot better I am stuck in here. They are attempting as well while I'm here to catch up on all he other things wrong with me that have been somewhat ignored for a while. A bit like an mot but on me, not me motor!! Starting from the top then, firstly it was my eyesight. They are hradually getting drier and drier and more and more sensitive to light. Artificial light is by far the main prob but sometimes daylight does it too. Theres also this hassle with the computer screen which simply I just can not look at it for more tha a few seconds before I am cresed up in agony. have been down to the clinic and the result being the same as last time and that is that it is the GVHD causing the gradual breakdown of my surface along with not producing adequate levels of tears etc. It is untreatable but putting inregular false tears may help to ease the pain and discomfort. They don't work too well though and only last about 15 – 30 mins. Next its the hearing. My aids haven't been doing their job and so need new ones. I went first to the clinic in the morning the other day and they had to be syringed out and then went back later for the test and the fitting. All went rather smoothe in fact and I now have a new set of megaphones welded to the side of my head, maybe I could start off a new style in headwear and go on to make a killing!! My teeth or rather my dentures will have to wait till I'm home as my dentist has been away and apart from that it is always a major problem trying to actually get over there as the general porters will not go that way so the one and only dental hospital porter has to come over and take you back later on. Thirdly my heart. They are goig to get the cariologist to come back on board who knows he might have a magic wand that works cos merlins now longer works. The chest consultant is being contacted to come see me and give their input again. They are chasing up the dermatology department regarding the sample they took some time ago where the areas on my face covered with this sort of rash is spreading. This is all along with the skin condition as in GVHD and the treatment in Birmingham which I will try writing that in a day or so as a lot has been said when he came and had a chat for an hour or so one thing I will say is that IF it goes ahead then it wont be brirmingham because they don't actually have the machine there it all fell through. The nearest one now I elieve is in "Guys" in London, but not sure exactly wherer but definitely London.

Okay then I am completely knackered now after doing this so I'm off to sleep. See you all in the morning and thre better be some breakfast in there!!!

See Ys!!!

Just a little update for now!!

2008-02-20T04:25:00.001Z

Well folks contrast to public opinion I am still in the land of living, or somewhere near to it at least. I wanted to say a huge thanks to all of you for your kind words of support and encouragement. I am progressing slowly but surely and a minute improvement is seen every day pretty much which is known around these parts as Onwards & Upwards, the words of a wise man indeed. I will hopefully successfully post a couple of blogs I did just before leaving hospital for you to get on with and will try and get roind ro giving you a massive update as soon as I can engage the services of a good pair of eyes to see the screen or a willing idiot I mean volunteer to type for me. You have been warned a huge blog is destined your way soon so run for your lives or face the consequences!!

So here goes then fingers crossed the transfer works.

See Ya!!

2008-01-06T18:30:00.000Z

Still Blinking Here At Heath Towers!!

Ha Ha Ha, just when you thought it was safe to drift off for a much needed knap I decide to pop my head up again like a reoccurring nightmare. I am sort of here but I’m also not quite here, “ain’t that the truth I hear a lot of you screaming”, and to be honest I would probably agree with you. Well I was meaning more like I am trying to get a few blogs in just to keep my fingers from seizing up more than anything but. I am not here as in home rather I am back in solitary confinement at Heath Towers.

I have been home for a few days around Christmas but didn’t last for long due to my chest and also down to the blinking Candida Virus they decided to send me home with on Christmas Eve so the stay at home was only a matter of a few days. The first thing to bring me in at the end of December was a pretty horrific eye infection. I was walking around with this huge golf ball size lump next to my right eye. The GP had attempted to try treating it with Flucloxicilin (anti biotic) which sadly had no effect at all. I had an infection in the Tear Duct of my right eye. Some of it could be down to the gvhd as in the eyes along with lots of other things don’t produce tears so therefore there is no way for the eye to try and flush out any nasties that show up. So a trip up to the Day Unit was called for, hopefully to get some stronger Anti-Biotics only to be told, “Oh No, you ain’t going anywhere matey boy, your coming in for a few days at least. Damn, Damn, Damn, nice try I guess!! So after the customary questioning etc etc I was whisked away to the ward which I think I have mentioned is not C1 anymore but B4 which seems much nicer. I hasten to add that as I was not intending to stay in I was ill prepared to say the least, in fact I had absolutely nothing with me and as we live a fair way from the hospital it was too far and too late for Judith to go home and get my travel trunk because I don’t travel light anymore. It was my fault because I should have known that once they had their claws in me they wouldn’t let me go that easily. Anyway, surprisingly “Joe 90” a relatively new registrar to me anyhow managed to get a Venthlon in first time and pretty much pain free too. They started me off on the same anti biotics the GP had given me but were much higher dosage. As far as stay go at Heath Towers it was pretty uneventful. The anti biotics started working more or less straight away and when I managed to catch a scab that had appeared on the lump and made a right mess everywhere the pain and pressure diminished a lot and the infection and the eye itself had more or less cleared up by the time I left for home on Christmas Eve. They did decide though to give me a nice present to go home with, some sort of Flu Virus which is extra annoying as I had only had the Flu Jab a couple of weeks back, fat lot of good that did for me!!!

So as I said I managed to escape on Christmas Eve just in time for Christmas dinner cooked perfectly by Judith, which is usual in that it’s normally either, a joint effort or I cook. It was pretty damn good too. I even managed to allow myself to be dragged screaming and kicking to the golf club for a little aperitif in the morning whilst Judith did her thing.

Right then, this blog has gone on far too long already so I am going to cut it short now and I will write up the next instalment later on. I am hoping that the latest little gadgetty thing my little sis has, a mobile broadband modem and connection will work in here or else it was pointless writing this stuff and in fact you would not be here reading this would you? More to the point though, “WHY ARE YOU READING THIS???” you must all lead dreadfully boring lives if all you can do is read my ratings on.

Oh yes, just in case he is in tonight, I did promise that I would give a BIG UP!! For Howard, (the phantom raspberry blower of London town) along with his night job nursing as well as spending an obscene amount of time pampering to my every wish especially in the Coffee at 2am department. I must add though that even with all his experience and patience, well he must have some to put up with me, he doesn’t even come close to the reigning Champion Cappuccino King, John or should I say Friar Tuck!!

Okay I’m really off now before I hang myself even more.

See Ya!!

Whoops!!

2007-12-11T17:09:00.001Z

Well, here goes. I am going to try and catch up on all thats been happening of late and let me tell you its been yet another roller coaster o fhell like only I could have,

It all started back a few weeks ago, when as you will probably recall I was excitedly heading off for a week of pampering and indulgence at Jane Hodge Respite Hotel. When I arrived there on Monday I wasn't feeling 100% but thought it would pass. I settled in and got to know the great staff and most of all the amazing choice of food available such as steak with various sauces and some nice fresh salmon etc etc and the huge cooked breakfast on offer each day too, well I had to keep up my bacon intake!! Sadly by Tuesday morning I began to have some pain along with problems having a pee. I put up with it till Wednesday by just sleeping realy not even getting up for food, but I called the doctor out on wes morning. Thankfully my gp's main practice is nearby in cowbridge so one of them came out to see me. He confirmed what I pretty much knew anyway, that I had a kidney infection and put me on Cefelexcin. I wasted no time in starting them when they arrived from the chemist a couple of hours later but almost immediately they caused horrendous sickness. I persevered for another day or so but ended up getting them to change them to a less sicky one which I started on Friday. In the meantime Judith had contacted mr to say that puppy was back home from the baby (puppy) sitters, Jason, Cathy and James as he was not very well too so I decided to go back home early insyead of staying there till Monday. Okay then, you still there and not fallen asleep yet?? By around Tuesday the antibiotics were having some effect. However, when I got up Tuesday morning and Judith saw me I had turned a lovely shade of Yellow all over and as Halloween had been and gone I thought I might just need to see the doctor I think. 1 hour later I was sitting in the surgery discussing with Dr Pardoe how I was going to get myself into B4 at Heath Towers. (I know it used to be C1 but the buggers thought they could escape from me by moving when I wasn't looking, the fools...) still, it has been a year since I was last there. They knew something must be wrong with my liver to cause this and the blood results did indicate this but all the various sacns and x-rays etc showed nothing was wrong. After a few days they decided that it was most probably a reaction to the original antibiotics given for the kidney infection even though I had only taken it for a couple of days about a week earlier. So after a weeks internment actually in a four bed ward and not the usual solitary confinement which was a real bonus as there were other humans to talk to, thye let me come home, not before giving me a stinking cold to come home with which as usual has gone straight on my chest causing me all sorts of grief and yet another 10 days of antibiotics. It has taken ages to start to feel any benefit and only the last day or so have I managed to drag myself out of bed and into the chair, apart from having to drag myself to the day unit for my immunoglobulins last Thursday which have hopefully helped things along. Serves me right I guess for not managing to get my flu jab last month, but I wasn't well the day it was due so had no choice realy.

There, I managed it even if it did take me hours to do. Whilst in heath towers they did check out my eyes and as usual its not looking too good. The GVHD is slowly deteriating the surface of my eyes thus causing all the problems. It will just continue to gradually get worse as no treatment is available.

Hopefully Santa will bring me Dictaphone I have asked for and that way I can get to record my blogs for the trusty volunteers to type up and maybe even delve into the podcast arena, who knows??

See Ya!!

p.s thanks all of you for your kind thoughts and words whilst I've been away and I do appologise if I managed yet again to scare some of you!!

Disabled Rants Is Proud To Present!!!

2007-11-09T19:25:00.001Z

As promised earlier I am proud to introduce the latest victim/volunteer Just William, my new pair of hands. Hopefully I won't manage to scare him off on his first appearance.

Right then, on with the job in hand. This week I've pretty much had a full service. It started off at the beginning of the week with a trip to the grooming parlour otherwise known as the chiropodist. Nothing much to report other than the usual clipping and general tidy up. Tuesday, as I explained in the last blog I went up to see The Butcher and if you read the last blog you will know what that is all about. I actually managed to have a day off Wednesday although most of the day was spent nursing my wounds from the nasty horrible man the day before. Thursday, as the regular readers of this load of tripe will know was my monthly visit to see Merlin at Heath Towers. As usual I arrived early to try and jump the queue but as many of you know this never works out in my favour, however this time it did and within half hour and I must say in the first attempt, was hooked up and slowly making my through the three bottles of sherry/immunoglobulin. After asking a few times if Merlin was actually going to appear he eventually did not long before I was due to finish. I was beginning to think after what we talked last month that he was avoiding me. I was wrong although I am not totally convinced because he did say that he had contacted the commissioner of finance and was waiting for him to write back. I also showed him some changes with my skin condition which is causing some concern at the moment. The two patches of skin on each of my arms where the pigment has gone and left a kind of tea stain behind have got bigger and the edges have become a lot darker. Also, I've noticed a kind of wart on my right hand (like an alien trying to escape from my hand). He was not too sure what this could be although he seems to think that it is probably some sort of fungal infection but is going to contact the dermatologist to get them to look at it. As you all know with Merlin's past record I won't hold my breath although you can be assured that I'll be kicking his ass next month if he still hasn't done anything. I did pass on Peters and my Favourite Cous' comments on to him too which seemed to fall on deaf ears. I also reminded him about contacting the Eye clinic to try and sort out this annoying problem with my sight and he did his usual trick of looking all innocent and sayings "haven't they sorted that yet". So after three hours or so it was time remarkably to make my way home which is a bit of a record for them as it usually five or six hours. Today was just the usual Day Care work and to be honest a pretty boring one at that. So nothing much to report on there.

Ok then, as you will know I'm off on my hols next week but I will try and blog before then but if I don't manage it you can all have a weeks rest from my rants as there is no internet access at the hotel, aren't you all lucky??

So then, what do you all think of William's first performance? Please be kind because if you scare him off I'll be coming after you to take his place.

See Ya!!

The Tooth Fairy.

2007-11-09T18:12:00.001Z

Well in fact I mean the cause of the tooth fairy having to come, my other favourite healthcare professional, "The Dentist" or as I like to refer to them as "The Butcher". As the few followers of this blog will recall I had to, in the run up to having my Stem Cell Transplant, have a lot of teeth out at once due to them being a high risk of infections. If I remember rightly it was something like, 7 out in one sitting and then 5 out in another sitting a week later and all under Local Aesthetic as I was too weak to be able to have a general. Not something I would recommend as a hobby for anyone. Well since then I have been left with 4 teeth and 2 dentures. 2 teeth on bottom in front and 2 on top at the back. The front ones were ground down a while ago and have not caused me any trouble but the top 2 however have been slowly crumbling in front of my eyes. Well finally after 2 previous attempts I managed to get in on Tuesday to have them out. It took some arranging as I needed to have steroid cover, anti-biotic cover and also some oral sedation because to be honest after the mess they made of me when they pulled the others out just to get me in the chair would not be possible without it. So, I arrived as asked a good hour and half before my appointment time because they need to give you these things an hour before treatment and sat there waiting. After 30 mins when I asked the receptionist why I hadn't been seen yet she just said "ell you are a good hour and half early, so you will just have to wait". I politely told her, in my own subtle way of course, that they had in fact told me to be here this early for the treatment so it was THERE FAULT!! A few minutes later I was called in. There I was faced with this foreign, I think she was from the Middle East somewhere due to the accent, student dentist, who I could not understand because of the accent and the fact that she spoke really quietly. I'm afraid that when she asked for my medical history she pushed just that bit too hard. Why is it that when nearly all doctors are sat there with my notes in front of them and after having read them too, want me to tell them my medical history. What, can't you read for yourself then??? Thankfully she did eventually say that a fully paid up member of the dentistry fellowship would be doing the extraction, which did bring a bit of a sigh of relief. So tablets down the neck and off to wait some more. After a rather painful Hydro-cortisone injection in I go to be faced with another Middle Eastern dentist, but at least he spoke a little better English and a bit louder too. 3 more injections including that awfully painful one in the roof of your mouth that makes your eyes water and a load of pushing and pulling and out they came in a few pieces though with one last stubborn root holding on for grim death before finally been brutally ripped from its hiding place. Because of the problems in the past he thankfully put a couple of dissolvable stitches in to close up the gap a bit which should help. It has been giving me a bit of pain since then but nothing major and besides the size of them told me it wasn't going to be plain sailing, but I will add that it has not managed to stand between me and my bacon sandwiches which would be simply outrageous and unacceptable.

Okay I'm off for now, but hopefully the next blog on here would have been typed by one of the willing victims, I mean volunteers from the cadets who will be over later. His name I believe is William but everyone calls him Bill or Bob and I think he's not keen on William. So guess what he will be known as around here?????? HA HA HA!!!!!!! He is the second Lamb to the slaughter this week as I had someone turn up earlier in the week, but I was not too well on the day and as a result we never did one. Still there's always next week, if she comes back that is, because she did sit there and have a read of the blog and has probably scared her for life!!

See Ya!!

Back down that old trodden path again!!

2007-11-03T06:13:00.001Z

This last few days I have once again strayed from the "Normal", if there is such a thing for me??, path and headed down the other one, you know the one I mean, where all things positive turn miraculously into negative and where trivial little irritations get blown up out of all proportion. In the scheme of things this is quite minor but none the less equally annoying. It's not been brought on by anything in particular but more so a culmination of lots of small annoyances such as the car and the lack of a bedroom/bathroom still and there's obviously the hot topic at the moment, your friend and mine, the one and only, Spell caster Of The Year 1978, Merlin. I guess if I had the time and felt extremely annoying then I would list all the tiny little other things that all together end up directing me down this bloody road but I don't particularly want to scare off anybody that's still remotely interested in reading about my rantings. Do you know, I wouldn't mind so much if the view along this road was halfway descent but it is far from it. It's more like driving through a dark, damp, dead straight, humungously long tunnel, but every now and then you can see what looks to be a light at the end of it. I seem to then go in slow motion towards it, in anticipation of this being the chance I have to break out, back into real life. Quite often though things are not always as they seem. It's a bit like the oasis in the dessert, because as I get nearer and nearer to the light and I begin to ready myself for normal life the damn light speeds up and then very quickly zooms past me, leaving me in this bloody tunnel for some more turmoil with only a view from my internal rear view mirror of some poor soul's backside screaming off down the same road I've just travelled. Occasionally though I do manage to get to the end and re-appear back into society a changed human being, not always for the better though as some of you might say, but changed from the experience none the less.

So, where does this leave me now?? Well, I suppose another couple of kicks up the bum from any interested parties will eventually do the trick and jettison me back to reality, let's hope hey??

Some good news too so life's not all doom and gloom, I am booked in for a spell of the old favourite, "Respite" in a week or two, but this time with a huge difference. I am going to stay, for a week, at the lovely "Jane Hodge Hotel" in Cowbridge which is not only a Hotel and Leisure Complex instead of all the other respite centres which are set up more like Hospitals, but this place is absolutely outstanding, so I am very excited at the prospect. I will hopefully write a piece on it in the next few days as we went to have a look around the other day and in fact Judith said to me, "You can blinking stay at home and I'll come in here instead".

See Ya!!

2007-10-31T07:17:00.001Z

You’ve had your warning!!

Okay then. I guess if your name isn't Merlin then this first part is not meant for you really but if you would like to participate in your own special way you can always leave your comments HERE. I am giving you fair warning Mr Merlin that I am due to see you next in 2 weeks in the Day Unit and as I'm sure I mentioned when I saw you last that would expect you to have made inroads into this treatment on my behalf. Therefore even if nothing has been done till now at least I have reminded you in time so that you can do something about it. I suppose equally if any of you at Heath Towers are reading this maybe you can pass on the reminder for me?? For the rest of you maybe you would like as I say to give him your own little reminders HERE.

So, what's been happening recently then?? Well to be honest my chest has been a blinking nightmare again. From around Thursday last week and now still although it has eased a little, it has been really tight and quite phlegmy for a change. The pretty much constant, at times, coughing makes breathing quite difficult as well as causing bloodshot eyes which might come in handy to scare the kids off when they come round Trick Or Treating soon although I seem to have the same effect without even doing anything. It's been one of those times when nothing works whether it is the puffers or nebulae's or oxygen. It ruined my weekend plans to go to the food festival as I mentioned and then basically has tried to completely ruin everything since then. I did manage to get out for a couple of hours Sunday just to remind myself what the outside world looked like but paid for it later on alright. Still no raised temperature which is a good indicator that the immunoglobulin must be doing their job in helping my immune system to fight off infections etc.. I hasten to add also that we rapidly approaching a whole year without any admissions to Heath Towers which for those regular readers will know is a remarkable thing considering the amount of them prior to the immunoglobulin starting. I think it was easier to have said the dates that I wasn't in there rather then the ones I was as there were far fewer to remember. I've lost count of the number of times I have been brought home by ambulance transport after a couple of weeks of punishment at Heath Towers only to be taken back in literally a couple of hours later because my temperature had gone up again and then spending the next 2 weeks all dripped up again and that was if I was lucky. Still hopefully those days are gone now and for those on C1 reading this, I love you all to bits and do appreciate your care but I hope the hell I don't have to come and see you again. What's that Penelope?? Ah, you feel the same way too!!!

Right I'm off then. Please feel free to comment as I said as I'm sure he will appreciate it and I know I will too.

Thanks!!

Ooops!!!

See Ya!!

2007-10-27T12:11:00.000+01:00

See what I mean about planning??

The regular readers of this blog will have heard me rant on about not being able to plan ahead anymore due to my fluctuating health which can change from one minute to another never mind one day to another. This weekend is going to turn into yet another time that I have tried to sort of loosely plan to do anything only to find that my health, more specifically my dodgy chest, has scuppered any hope of going out. This time, just to add to the misery of failure the weather has turned out to be rainy all weekend which may have stopped me from going anyway, but at least it would have been more a point of choice and not dictated to me. Ah yes, the old story of being robbed again!!!!! There’s no hiding the fact that I love all things food especially the delights of a juicy bacon sarnie, much like fellow blogger Peter, a man with impeccable taste I must say. Well this weekend is “The Cowbridge Food Festival”’ just down the road from here. It has become a really big affair over the years attracting thousands of visitors over the 2 days. It’s a great place to not just feed yourself up with all the freebies being handed out at all the stores but a chance to meet up with all the local suppliers and to get some inspiration too. There are lots of stalls lining the street and it seems everywhere you look something foody is going on such as chefs showing off the expertise or the latest in must have kitchen gadgets being demonstrated and the smell is just worth going for on its own. I have been looking forward to going there for months now and although I haven’t actually planned anything in stone o had every intention spending some time there only, yet again to fall at the final hurdle. My chest has flared up yet again the last few days. It is very tight at times with a constant tickle in the back of my throat which nothing seems to be able to relieve but at other times it is like I am 60 a day smoker coughing up all sorts of unexplainable goo both of which are playing havoc with my ability to breathe which you can appreciate is not good position to be in. The oxygen concentrator has been on an awful lot the last few pumping me full of the magic gas which does help at times although it comes with its problems too such as it makes your mouth really dry so you drink more and then you pee more etc etc also it causes problems with my eyes too. What are you on about I hear you ask?? Well, for those of you unfortunate to have had to have one of those blue oxygen mask on, have you noticed the way that a lot of the oxygen, despite there being holes in the sides of the mask to stop it happening, comes out of the top of the mask, which is like holding a fan directly in front of your eyes, which when you consider that my eyes are doing a great job all on their own at staying as dry as they can be this extra help from the oxygen is not a good idea. A lot of the old masks used to have a sort of little piece of metal that went over the bridge of your nose and when pushed together stopped a lot of this happening but I rarely see them anymore, maybe its down to the fact that this little bit of metal did come off eventually and could be a hazard to small children I guess. So I have to sit there for hours with either my eyes closed or squeezing the top together and holding it there all the time. The cause of this lamest flare up is I think down to the changing weather which always causes me problems. At least my temperature is staying normal which is good indicator at least there is no fever, so it’s a case of see what happens over the next few days and then it might be a trip to see Merlin, or more likely a phone call to get him to tell my GP what to prescribe as my GP bless her is too scared to play around with any of my medication as she puts it, “I’m a Special Case”!! and she would rather leave it to Merlin.

Okay all this thinking about food has started me stomach off so I had better go and feed it. God, I miss Kya, one of my carer’s not coming on the weekend as she makes a mean cooked breakfast for me during the week but I’m left to fend for myself on the weekends and it’s not the same.

See Ya!!

2007-10-24T17:46:00.000+01:00

When is a salesman not a salesman??

When he’s the Managing Director of course. Now I know there are lots of you staring at the screen with rather blank looks on your faces and I don’t blame you to be honest but to clear things up I will let you know what I mean. It is in fact all about one of the loves of my life or should I say, one of the nightmares. That’s the car. When we went, all those months ago to the Motorbility Roadshow to check out what was available for me and my chair to travel around in we arrived at the stand of “The Automotive Group” a vehicle conversion specialist from Newcastle. We were met by this, what appeared to be a really nice man who knew his stuff. He explained the vehicle’s advantages etc perfectly and even suggested having them fit an older model ramp to the new model car so that the ramp was even lower, a problem we had with nearly all the other vehicles we tried out incidently. He explained that he could get a hire vehicle down to me in 3 days and that they would take away my old one. The new converted one would be here then in 2 weeks. He never once mentioned the small fact that he was the M.D. we decided to go away and have a final look around before making up our minds but knew that we would go back there mainly because of his attitude and approach and willingness to help. So after a walk around we did return there and although he was tied up with another customer did pass us on to one of his salesmen to fill out the forms telling them what we had discussed about the ramp and delivery etc. well as you all know the 3 day delivery on the hire car turned out to be just over 2 weeks and the 2 week delivery of the new vehicle turned out to be around 6 and that’s only due to Motability coughing up the deposit to get the metallic one instead of the no deposit plain one I had ordered. Well then, the new one arrived eventually and as per usual not without it’s faults. First the retaining belts were really complicated to work out. Then the spare wheel has just been dumped loose in the back with nowhere to attach it either. The fuel gauge is eratic, showing full one minute then empty the next. The exhaust sounds like a tractor and is spuing fumes back into the car when the windows are open due to the fact that where they have had to re route it because of the lowered floor it now only has 1 silencer instead of 2 and comes out the side of the car not the rear as before. I booked the vehicle in to my local main dealership to look at these for me and when the eventually booked it in they refused to touch it as the faults were all down to the conversion company and not Fiat and in fact that this was probably the worst conversion they had ever seen, which was very reassuring as you can imagine. Oh yes, I forgot to mention the other that happened too. The drivers door decided to lock and refuse to open at all whilst Judith was sat in the drivers seat and me in the back I must add. She tried everything including brute forse and eventually thankfully managed to clamber out via the passenger door. The rac came out to have a look and eventually after about of ½ hour of trying the handles etc it just popped open as if nothing was wrong at all, bloody annoying. So after contacting Motability again about these faults they had got Automotive group to ring me to sort them out. Lo and behold the M.D rang me back straight away and was very apologetic indeed. After explaining what the problems were he promised to carry out the work but would need to come and take the vehicle away. He told me that he would have a hire vehicle brought down to me on Tuesday (Today) but would ring me Monday to let me know what time. I told him that to be honest it would be a novelty if anyone from his company actually rang me back as they haven’t ever done so up till now. He said I am writing it in my diary now to remind me. Surprise Surprise, when I rang them at 4.45 Monday as he hadn’t rang I was told he was not actually in the office today and noone else knows anything about it. I told the woman on the phone that unless they got hold of him urgently and rang me back they would be having the vehicle back on their doorstep in the morning and a cancelled order to boot. I did get a phone call a short while later to say though that the vehicle they are hiring me would not be ready till Wednesday not Tuesday and I can’t repeat what I actually said as my mother reads this, but I can assure you there were lots of £%^*&%$%^&%^%%’s. so they are supposed to be ringing today to let me know what time they will be here but don’t hold your breath, and the same goes for Wednesday too.

Time to give my eyes and fingers a rest too as all this blogging is hard work you know. I am sill looking into the Volunteer Typewriter.

See Ya!!

2007-10-23T19:57:00.000+01:00

I’m on a roll now!!

Well guys after the severe lack of blogging of late I am on a bit of a roll at the moment what with a few in just a couple of days or so. Now I know there are some amongst you who have been glad of the rest but there are numerous sad, lonely, depressed, often suicidal people who have missed the charm witty banter that has be the trademark of this blog for the now, what must be about 2 frightening years.

I’ve thought these last few days about what to write about and to be honest have struggled a little for any inspiration. Isn’t it amazing, when I can’t write because my eyes are bad my mind is constantly churning out idea after idea, but when I can just about manage to type a few words or two it refuses to play along. I tell you what has been coming out though are those little sayings like for example if you buy something new and it doesn’t work properly, they will often say “It just needs to bed in a bit” or “It needs to settle”, WHY DOES IT??? IT’S BLOODY NEW!!!! Surely it should work right from the beginning?? Would you put with a say, a brand new car breaking down every 2 miles with the explanation given that “it’s new and needs time to settle in” would you hell!! But we all just accept it, me included. Why don’t the make everything already settled/bedded in right from the start, or is that just too difficult??

I might have been offered a good solution to the problem of writing the blog with the state of my eyes in the shape and form of one of a volunteer from one of the countries finest upstanding group of young men and ladies, “The Royal Air force Cadets 1100 Squadron” of which Judith is a civilian instructor. I have been asked if I would like one of them to come over and type up my blogs for me if I dictate to them. They can apparently use this to go towards one of their awards I believe too which means we all benefit in the end, although I think you lot will probably have the short straw, as you know you, the more blogs I do the more your brain is going to be bombarded with all my junk. I think this is a real nice gesture and appreciate it a lot. We will have to look at how exactly we can do it because I guess not many of them will be up to typing at the speed of light which is often how quick this rubbish flies out of my brain but you never know I guess?? Just think though, the opportunity to clone my own little Jonny5, brainwashing her/him with the thoughts that travel through the otherwise empty void between my ears constantly.

Right I’m off to write up my master plan.

See Ya!!

2007-10-21T08:21:00.000+01:00

Off To See The Wizard !!

Well as i had promissed earlier here is the details of my latest meeting of minds with Merlin. For one reason or another i haven't seen him for a few months now instead i have been seeing his lovely registra Thumberlina, (Rachel). I try to not think he is avoiding me although there may be an element of truth in that thought. After missing him yet again the week before Rachel suggested that it would be an idea to book a Clinic appointment rather than just waiting in the day unit for him to see me when i am up having my Immunoglobulins and that due to the pronlems i wanted to sort out with him, the sooner the better and am appointment was made for the following tuesday.

So the day arrived and we turned up the usual 15 mins early just in case!!!! but should have thought really that the way Merlin works he is running behind when he gets up in the morning, so a 4pm appointment means you are in for a long wait. The nurse who'd drawn the short straw for the day called me in to have my blood taken and was sadly met with a resounding "Get Knotted" although i was polite, but after being tortured by them only 4 days previously, nearly 10 attempts to get a needle in i said they will have to use those results. She did however with a lot of pursuation by Judith with comments like "Do it, or else you are walking home" and "I'll give you a slap" convince me to be weighed. I have been saying for about the last year now that i am 15 1/2 stone much to Judiths amusement but Hey Ho!! i was bang on 15 1/2 stone, a stroke of luck. Merlin finally come out of his cave and grabbed my notes saying he just had to make a phone call and will see me then, maybe the "Wizard get out of corners helpline"!!! So finally in we go ready for battle. No sooner were we in and he went to start, so i stopped him in his tracks because as far as i was concerned this was my opportunity to have my say. I have been thinking for some time that i have sort of been forgotten about ny him and his team. I told him straight that i wanted answers and no bulls--t this time. "What has he been doing about securing this light treatment for me for what now is exactly a year on"? I told him that i had no faith in him anymore and was not at all happy, thats an understatement, in the way i have been treated and i now want action. How dare he rob me of a year of my life waiting around thinking he was fighting my corner to get this sorted for me. I know that he has done a few things but the bottom line is we are no further forward than we were last october yet my health is a great deal worse. This Extracorporeal Photosynthesis treatment has the ability to not only stop the GVHD nut also to reverse some of the damage already caused by it and in some cases with remarkable results. A year ago i was still driving and walking around around. Spending lots of time on the Computer and Cooking ect and had lots of independance so the reversal effects would have made a huge difference, whereas now the GVHD has progressed so far that the same results will no longer be possible and who is to blame for that??? He informed me that the phone call he had made was to the Commisioner Of Finance regarding funding for this. Merlin had explained to him that as the treatment was very new and somewhat experimental the ammount of data available to judge it by was small compared to other treatments that had been around for a longer period. He explained that they will usually turn around straight away and say "Non" however the Commisioner was extreemly interested and asked Merlin to Email him the details available and he will have a look to see what he can do, which a bit of a shock all round. Merlin explained and in fact looked rather pleased with the fact that one of his patients had just successfully sued to PCT to get the treatment she needed but had been turned down due to funding. Now i am obviously pleased for this lucky patient but what about me? Don't i deserve the same level of support?

I guess i could go on and on about this much to your dismay but i think you and Merlin alike get the picture, that things are going to change from now on. No more easy touch Jonny5. I want what i deserve, with interest, from now on. Merlin has said that he will sort this out for me and that he will get back to me when i next come into Day Unit in a couple of weeks if not before. We will have to wait and see although judging on past performances i don't have much faith.

Righty Oh! I'm off to make some breakfast as Little Sis will be here soon to drag me off into Cardiff to go to the market and a bit of Retail Therapy too with hands firmly glued in pockets and wallet left at home to prevent and silly spur of the moment purchases, you know the stuff you just have to buy, "Because you need it"!!!

See Ya!!

2007-10-18T07:25:00.000+01:00

What Have I Done??
Sadly i have been a little down for a few days. This road through life can, and in fact is, very twisty turny. For those of you who have followed, through the blog and other means you will have some understanding what i'm on about and quite frankly if you haven't been keeping up then it's shame on you and 100 lines, and think yourself lucky that they have banned the cane!! The main cause of all this is pretty much down to the way my health has been lately, more so the problems with my eyes. As i have explained the pain involved in looking at say a computer svreen or the Teletext on the TV etc is unbearable and has resulted in me very rarely summoning up the courage to even turn the computer on, which bearing in mind before this pain started i was on there about 10-12 hours a day and in fact it was a real lifeline to me. I feel that YET AGAIN this damn thing has robbed me of that pleasure and bit of independence i had. Why has this thing got it in for me?? What have i done to deserve this constant fight to retain any resemblence of independance?? I know i have never been a saint all my life as my family can well vouch, but surely nothing that could stir up this sort of determination to make my life so difficult? Energy is a precious comodity to me and i begrudge using it all just to fight things like this when it could be used for some of the happier things in lfe, such as living!! I suppose in a weird way it has taught me something though and that is I could never see myself coping if i was blind.

Okay then i'm off for now, so just a short one this time, which i know is about as rare as Rocking Horse poop on this blog. I still have to get on with the whole Merlin blog thing too which might appear later, but i just had to get this out of my head and on to here while it was still readable.

See Ya!!

2007-10-16T19:47:00.000+01:00

Some Updates For You!!

Well here goes. Let’s see how far I get writing this before me eyes pack in again. I have found that for some reason if I just look at the keyboard and not at the screen I can go on for a while, but as soon as I look at the screen it goes all pear shaped. One problem though is that you can go on and on thinking it is okay only to find when you look at the screen that you have clicked on something by mistake and opened up lots of windows instead of typing anything.

Right enough of this bull, on with the blog while I got the chance. Health wise all is sort of ticking over I guess. The chest is about the same as it usually is this time of year, up and down with the weather. The skin is just at tight and causing some pain and lots of discomfort at times. It’s getting to the point now that I am having to shuffle between chair and bed etc instead of standing and swivelling if you get my meaning. This is becoming a problem in getting into the toilet which sadly will end up in me having to give up yet another fight I have been having and that is to have a commode in the living/dining/bedroom/prison which used to be our lounge many moons ago. Hopefully though the new extension might hurry up and get built before it comes to that but it will be a close run thing I think. Things are progressing at a steady pace there though. The final plans have been drawn for the extension and the kitchen alterations too, such as the lowered hob and worktop and eye level oven etc.. He has also been told by the grants department to put the work out to tender and has said that he has given the builders a deadline of Nov 3^rd for all quotes to be in, so progress indeed at blinking long last. Now I guess it’s on to the two other big issues in my life that I know you all just love hearing me rant on about. Any ideas??????? Yes, you at the back!!!.......Well done, give yourself a gold star. The Car and of course Merlin, both of which deserve a complete blog all on there own but I’m afraid my eyes won’t take it at the moment so this will have to do. Seeing as I have been at this for a while I am doing quite well and my eyes are holding out okay for now, but mustn’t speak too soon. The car then. As you know the new mobile arrived now a couple of weeks ago after they had firstly blamed me, ME!! For deciding to chose their No Deposit vehicle advertised which they had decided only came in red or blue both of which were not easily available in this country and in fact pretty much the rest of the world by the seem of it with the struggle they were having trying to get one instead of the £350 deposit metallic paint version which they just happen to have a few of in stock waiting to be converted etc. So when Motorbilty decided to pay the deposit instead of all the rental payments they would have to make they delivered the Shiny New Gold Car in 10 days. Sadly though all is not well as only you would expect from me. Firstly it took us about an hour to work out the restraining belts as the instructions were naff. Then after a week, we arrived back home only to find that Judith could not open the drivers door and was stuck inside. Luckily she managed to scramble her way out through the passenger side door else things could have been very dangerous. The RAC came and had a look and after about ½ hour of trying the handle inside and out and lifting the door etc it just popped open just as much a surprise to him as it was to us. It’s been working okay since then too so still remains a mystery. Next on the list of faults is the exhaust which is blowing quite badly making it sound like a tractor. The other problem with the exhaust is that where they have had to re route it out of the side of the car instead of the rear because they have lowered the floor it is causing lots of fumes to come into the car. The fuel tank has been changed too I think as the fuel gauge is extremely erratic, showing it full one second then a quarter tank the next which is not a good idea at all. That’s not the end of it yet I’m afraid!! The spare wheel which obviously used to be underneath is now just sort of sitting there loose in the back with me and not attached anywhere at all, which if would make a right mess if anything was to happen and we had to brake sharply. Thankfully all of this is going to be looked at by my local dealership later this week instead of having to be sent back to them useless idiots up in Newcastle. If first impressions are anything to go by the local dealership are a welcome change and seem very helpful. God this is going on a bit isn’t it.

I tell you what, I will leave the stuff about Merlin for the next blog as it will also go on a bit as there is quite a lot to say. A general picture is that he bore the brunt of a years waiting for this treatment last week with a few good and a few bad results. If it sounds intriguing to you, you are not wrong at all.

Right I’m off to rest my eyes for a bit and then I might have another go.

See Ya!!

2007-09-18T07:25:00.001+01:00

It’s Me Again!!

Hi one and all. Hope you haven’t missed me too much?? I do have a genuine reason for not blogging for a while and before you all start howling it’s not the Lazyitus returning again but instead a really annoying eye problem. As some may remember I mentioned that the good old GVHD had managed to attack my eyes along with all the other places it’s managed to get too. This has been causing a lot of pain and discomfort for a while as they become very very dry. Sometimes the eye drops help but not always. For the last few weeks however I have noticed that whenever I try to look at the computer screen or even the prog information on the TV after one or two minutes my eyes become extremely painful. No amount of eye drops has stopped the pain either. This has and still is, as I haven’t managed to get to the eye clinic yet to get it looked at, a right pain in the you know what as I spend most of my time on the computer.

As far as the rest of my aches and woes are concerned it’s pretty much business as usual. The odd glimmer of a chest infection looming ready to pounce at any given notice and the Boa Constrictor I have wrapped around my body trying its best to strangle what life there is left from me, oh yes, and the depression I seem to have been up and down with of late. As I have mentioned on other blogs the depression is very often triggered by the state of my health and as things haven’t been too good it just proves my point really.

On the car front it looks like there is a chance I may have my new one in about a week or so now, thanks to a lot of help from Dave Bushby from Motorbilty who has been on my case for me all along. When I finally get my hands on the new one I will have to write a separate blog on all the problems I have had getting this thing but in the meantime if anyone reading this is thinking about using a company based in Newcastle called “Automotive Group” DONT!!!!!!

I have managed to write this blog off and on over a weekend away at Marie Curie’s Holme Towers Hospice in Penarth where I have been for a weekends respite whilst Jude has dragged Tara and Kya and a load of other hormonal women to Butlins in Minehead for the weekend. This too will need a blog all of its own to give you some details but overall I guess it wasn’t the best of experiences but still I needed to know.

Right my eyes just can’t take any more now so I am going to have to go. Maybe if I dictated I could get someone to write a few blogs for me until I get my eyes sorted that would make it easier and probably for you lot, a lot shorter too as I tend to drift off at times as you all know.

See Ya!!

P.S I have an update on the Car and it's being delivered on Thursday so i would appreciate it if you all stay off the road then and tell all your freinds too!!

2007-08-23T17:29:00.001+01:00

Self Punishment

Well at last after much speculation Tim Henman has announced his expected retirement. Now I guess I could not be described as a sports addict at all, actually I would strongly deny any such association vehemently, but it makes me wonder at times like this how we in this country set our hopes of sporting success so low, that we then are happy with any little win here or there. Here we have a tennis player who no doubt has some talent, but he is being made out to be some great player along the lines of the great Fred Perry which I find quite amusing as he has never won a “Grand Slam” but he has made it to 6 or 7 Semi Finals!! He hasn’t even managed to make it to a Final yet he is the best we have to offer?? Could you see the Americans putting up with the likes of Serena or Venus Williams just making it to the Semi Finals?? I think not!! I don’t want to make a big issue out of it but I suppose seeing as the government are about to waste, I mean spend a load of mine and yours hard earned cash on staging the debacle known as “The Olympics” I see us yet again making a damn good laughing stock out of ourselves yet again, but this time we will be skint in the process.

Okay on a more cheery note, I’ve been out and about over the last weekend and since too. Saturday I dragged my sister into Cardiff for a bit of retail therapy and a nice slap up breakfast of course, well it seemed a waste in not trying out the local fayre. It proved to be more bad than good though as we got well and truly caught in the rain which resulted in a severely bad chest for day afterwards, in fact it still is not right now although it is getting better. The weekend saw me struggling quite a lot just to get enough oxygen in to keep me going and to be honest at times I thought I was rapidly heading, with the blue light disco on the roof to a stay at Heath Towers but thankfully managed to stay put and resist the temptation. I think the thought of all that Savoury Mince, Bran Flakes etc that they pass off as food there gave me the inspiration needed to get my arse in gear and get through it. I did as a result of this take it easy for a day or 2 but there is no tying down Jonny when the sun comes out. I’ve had a few days out shopping etc and generally out and about seeing how many people I can annoy by taking up their space on the pavement with my Wheelchair. I find it amusing to see some people’s faces when they walk straight in front of me until they realise, at least most of them do anyhow, that I am not going to move my joystick for anyone to get out of their way, it’s a case of shock and horror and pain too if they’ve not managed to avoid the nice heavily clad metal front on the wheelchair. Back into Day Care tomorrow too as I had to miss Tuesdays session so a chance to catch up on the goss.

I’ve got a few outings planned this weekend too which I’m looking forward to as well. Saturday I’m off to a local Village Show, full of the usual Sponge Cakes, and Runner Beans and Marrows of alien proportions and let’s not forget the Dry Flower Arrangements too. Sunday if a little different in that I am going to drag my poor old sister out again, this time into a fabulous Farmers Market in Cardiff which is excellent you will find details of it here if you are ever in the area looking for something to do. Hopefully we will get to go for a walk around down in “The Bay” or if like me having being brought up not far from there, The Docks.

An update on the building/grant work too. I had a phone call this morning from the council explaining that I had to now go ahead and employ an architect and after giving me a list of ones they have used in the past I did just that and he is coming out next Tuesday to start the ball rolling. So more progress again which can only be a good thing I guess, I HOPE!!!

See Ya!!

2007-08-13T10:03:00.000+01:00

A Lesson Learnt

I have learnt a valuable lesson this week which is closely connected the reason I haven’t blogged all week, tut tut naughty boy jonny!!! I had a bit of a disaster with the power cable for the trusty old Laptop. Well to be honest my beloved daughter decided to see how long she could stretch the non stretchy cable before something give in and eventually it did. Thankfully it didn’t damage to Laptop at all just completely knackered the power lead ending up costing me £23 blinking robbery to replace, no pocket money for a year for her, oh yeah, I haven’t given her any pocket money for years, maybe I ought to keep quiet on that one!! Well, this is where the problems started. There wasn’t much power left in the batteries as I haven’t charged it for a while so when she finished what she was doing on it, using up the remaining battery power off it went till I could get the replacement. Never mind I thought, I will just have to use one of the other 3 computers set up around the place, more so the one I have connected up to 32” Widescreen LCD TV in front of me. Have you ever tried playing games on one of these, its soooo much better!!! So I switched it on as I needed to write a few emails etc and realised I had to go through all the setting up process as I hadn’t ever done it on this computer. Right then, where did I put them details and passwords etc?? Then the penny dropped. Noooooooooooooooooooo!!!!!!!!!!!! All my passwords for everything I do in cyber space is sitting nice and quietly in a file on my Laptop and I have no way of getting to it. Of course Mr Organised here had kept putting off backing up this sort of thing too so I was left high and dry till the new power lead made its way to me on Friday. So my friends the lesson today is “back up, Back Up, BACK UP”

Anyway, catch up time. I had an extremely busy week. As Judith was away for the week with the cadets in Wittering I had been planning the week military fashion for some time and it all pretty much went according to plan. The pa’s both did extra hours, even some unpaid too, but then she is my sister and she loves me. My family have been great and have been around most of the week too helping out where they could. I have sampled many cuisines on offer around the locality although I would say none of them have even come close to my delicious speciality Bacon Sandwich but the sampling was fun. The hire car has been well and truly christened. I will say that the weather this week has been pretty astounding too. It’s been sun sun sun all the way mostly which has enabled me to get out and about a lot more. It’s also made my chest behave itself a bit too, so much so that I haven’t needed as much oxygen this week which is a good sign. I’ve been to “Day Care” as usual this week on the welfare bus Tuesday but they sent a taxi for me Friday in the shape of a properly converted minibus with all the right equipment, at least I thought they did!! It didn’t start of well and it actually just kept getting worse and worse. First things first up the ramp which was as steep as the north face of Everest, thankfully my pa was standing behind me because at the top of the ramp my front wheels were 2 inches of the floor and I was heading for a back flip till she grabbed the handles. Phew, that was close. Well into position to be strapped down. Now for those of you who are not used to wheelchair transportation there are these straps they tie around or clip etc to the wheelchair frame which hold you down firmly to stop you moving around and also you wear a harness or at least a seatbelt of sorts, it is the law after all. There are 4 straps in all, one in each corner. Well because the driver had come totally un prepared he only put 2 straps on me, front right and rear left which mean there was nothing stopping me tipping forward to the left and backwards to the right, pretty frightening. To top it all there were no harnesses and not even any seat belts to out on. I should have got off there and then I know but for some reason I decided not to. The driver obviously knew he had messed up as he drove like a funeral procession all the way to pick up the next client and onto the centre, even so watching the back of the wheelchair in front of me moving around because he had the same set up as me was still frightening. I’d like to point out too that there was no escort on the bus either so if any of us decided to tip over nothing could have been done. We arrived at the next client to pick up and this poor bugger only had one strap on because that was all that was left and it was actually the wrong type for his chair anyhow so it was useless. After a harrowing journey we finally arrived at the day centre. I explained to the driver that he will have to put the wheelchair in free wheel for me and pull me off as I was not prepared to go down backwards when I couldn’t even see the ramp and how steep it was. He made me feel like a right baby. “What’s wrong with you man it’s only a little slope, come on, get on with it” he said. If I had the energy I would have got up and plonked one on his nose as I had lost it by now. When I downright refused to get off the bus he was forced into doing as I had asked and even he nearly led me off the edge of the ramp. So it sort of put a dampener on the day really. After a lot of complaining and phone calls from the staff at the centre who were great they apologised and said it will be different next time etc etc. Well when it was time to go back home it was different. We each had 4 straps on, there was a lift to get on and off and there was an escort in the back too but sadly NO HARNESSES OR SEATBELTS!!

Okay that’s enough for now. I will have to update you later about everything else that happened this week as this is heading for a full scale novel ha ha ha!!

See Ya!!

2007-08-03T08:25:00.000+01:00

Jonny5 Is Alive!!!!!!!!

Well after numerous days, weeks of sweat and tears and countless phone calls, on my behalf anyhow as everyone else seemed to forget to ring me back constantly my new mode of transport which I refer to as my “Cripple Wagon” as let’s face it there is no hiding the fact that its sole purpose is to ferry around cripples such as myself, with its bright yellow ramp poking it’s head up in the rear windows of the door and the other small giveaway is the dude sat there in their wheelchair often with a look of shear fright on their face having just been on a ride equivalent to the most frightening roller coaster ride on the planet, often I find too that the driver, Nigel Mansell, has this wicked grin on his face. It is only a hire car for now till mine is ready in around 8 weeks or so but it will be the same, just newer although there are a few little changes internally. Judith has packed the camera away to take with her as she heads off and leaves me in the somewhat dubious hands of family and friends as she plays soldiers for a week with her group of Air Cadets somewhere up north. Just follow the rain clouds and you will find it!! So sadly no piccies of the new motor yet but if you just can’t wait it is one of THESE, only joking, it’s one of THESE. The poor buggers delivering it down from Newcastle to me in St Athan picked the worst day to do it too as the Motorway (M4) was closed from j24 – j28 from about 2.30am to mid afternoon causing tail backs reported to be around 15 miles. It’s a hell of a trip on a good day around 350 miles, 6 hours or so, but they in fact set off at 9.30pm Wednesday night and arrived here at 12.30 lunchtime yesterday. So I am back on the road again and once more looking for some victims to inflict myself on, so stock up on the bacon peeps, I may just pop in to sample some soon. Wait, wait, hold on, why are you all running away so fast?? Was it something I said??

I’ve also had another visit from the delightful OT, Sue this week and she brought a nice chap from the grants department with her to pick his brains about this extension work. She also brought me some ramps so that I can get out a lot easier now and don’t have to rely on Judith having to slot together this jigsaw of bits and pieces of wood to do so. My Daddy will be building me a couple of temporary threshold ramps when he comes up with Mother on Saturday so all will be batter then. Anyway back to delightful Sue. After a lot of wandering around measuring everything in sight including “Puppy”, and a lot of head scratching it looks like the work will go ahead. There is no room in the house as it is to create a bedroom and bathroom for me so they will have to build an extension. It will need to be properly planned and fitted of course with things like Ceiling Hoist, Walk In/Sit Up type bath, Raised toilet etc etc. As you all know by now I have this weird obsession with bacon sarnies and all other cooking to be honest but the kitchen as it is, is not safe or at all practical for me to work in let alone even get out there, so they will adapt this as part of the works too which will make so much difference and help to yet again give me back more independence. They were saying that there is an overall budget for the complete works of £30,000, (£25,000 in England) for the D.F.G and that building the extension alone will cost more than that, which means they have to go to further committee’s panels etc to justify the extra expense but to be truthful they have seen only too well for themselves the real need for me to have this work done, if, for no other reason than to give me back SOME quality of life and dignity. So it is still some way off actually having it done but I feel we are a lot nearer the light at the end of the tunnel at last and things are moving.

Right then I’m off to continue to plan military operations for next week as in what pa or family member or poor innocent guy walking past outside at the time is doing what for me all week, so headache coming on later I think.

See Ya!!

2007-07-29T15:15:00.000+01:00

Bring Me Sunshine!!

In the words of the great double act Morecombe and Wise indeed “Bring Me Sunshine” as all this wet, changeable weather is playing havoc with my ability to breathe. In saying that too hot is not ideal either but it seems to be a whole lot better than when it’s damp.

I won’t apologise as I always seem to do for not blogging for a while because I haven’t even turned on the computer much only for the essential stuff. It seems that all my attention has been directed to staving off this blinking chest infection I have had for a while and breathing of course. I have had to spend a fair amount of time trying to sort out this new car too which although tricky and time consuming the outcome is good. I was rather concerned that as my new car would not be ready for around 8-10 weeks I would end up being unable to get out for some time as getting into and out of my present beauty is now proving almost impossible. After a lot of consultation and pleading and begging and endless phone calls I have managed to get the company, Automotive Group Ltd who are providing my new car to come and collect my present car and provide me with a hire vehicle adapted the same as my new one will be until mine is ready and what’s best of all is that Motorbilty will continue to pay for it and it should be here this week!!! So Jonny5 will be on the move again at last, LOOK OUT!!!

The other bit of I guess, “Big News” this week is the eventual OT Assessment for the grant work etc which was on Wednesday. It was quite fruitful and also a big help in the fact that at last things were actually moving. There were and in fact still are a few stumbling blocks to overcome but it looks highly likely that things will go ahead in some form or another. They of course have to firstly look into whether the house can be adapted as it is without the extension but there is no way at all. We may have problems with the water/drainage being the wrong end of the house. There are some issues over having a Bath or Shower and what type etc but nothing that I don’t think we can’t agree on eventually. I have asked to have to kitchen converted in some way to help me to safely work/cook out there as it is very dangerous at times at the moment. On a more immediate note the OT Sue Collins will be coming back next Wednesday with a couple of portable ramps for me to use to get out of the house etc until they come to build the permanent one later on and she will be bringing one of the Grants Officers with her who is a Surveyor and will have more of an idea what can and can’t be done. So after all this time things are starting to move in the right direction.

On a different tangent now, “My Health” this chest infection is continuing on regardless of any intervention on my part so when visiting Merlin at Heath Towers Friday I have got him to prescribe a different anti biotic. For those keeping record it is Augmentin also known as Co-Amoxiclav. I have taken this in the past, hell I have taken pretty much every anti biotic known to man before, with some success and some failures also but hopefully the former in this case, so again no Harveys for me for a while, drat drat and double drat!! Merlin put me on a course of Methotrxate when I saw him about 5 weeks ago to try and stop the skin gvhd from progressing further up my chest which it has been doing and it seems to have worked somewhat too, which is interesting for a number of reasons, not least of which the fact that it does somewhat prove that the skin condition is reversible and therefore this treatment in Birmingham etc may just help. A bit of positive news you will all no doubt agree. So come on then Merlin pull you’re bloody finger out and get it sorted because the clocks ticking and the meters running!!!!! Well carrying on the health route, whilst I was at Heath Towers Friday and sitting talking to Merlin actually, my breathing all of a sudden became very difficult and my chest was getting tighter and tighter and in fact had to get Judith to quickly get out my Oxygen before I flaked out. After a short while and a good old blast of oxygen I was fine although rather concerned as to what had happened. I had just moved around a little I guess after sitting still for about 3 ½ hours having my immnoglobulins and also I was sitting forward which doesn’t help as it doesn’t allow me to breathe as well. After managing to convince the staff there I would okay to get home off we headed. The journey home was fine but later on after trying to move about a bit it happened again. It soon calmed down after another shot of oxygen so after that I keep the oxygen on all night and I was fine. I did have to get Judith to stay with me all night on the chair as I was a bit scared things might get worse and even now after a day or so it still worries me a little. I had to get my Little Sis to come and sit with me yesterday whilst Judith went shopping too which was nice. I don’t help myself when this type of thing happens mind you, as all the experts will tell you, the last thing you want to do is panic as it makes it worse, so what do I always do??? You got it!! Well I suppose I will just have to keep an eye on it for now and see what happens, but in the meantime make sure there is lots of oxygen around.

See Ya!!

2007-07-20T06:41:00.000+01:00

Yep I think I’m still here!!

Well, I just realised that I have not been keeping the blog up to date. Especially as a few of the recent posts have shed a somewhat, although accurate derivation in my condition etc, so for those that have been Emailing, to see if all was well and if they could be any help, of which I think I have managed to respond to all of you, thanks a million for all your kind words and support, I do appreciate it and it also does help immensely at times like recently when things are, well let’s just say difficult.

Jeeez has it really been a week?? Sorry!! Okay on to the fun stuff now, well, maybe, let’s just see?? Things have been very much moving on in the direction that life seems to now be going, with a few exceptions of course else life would be such a bore. I have managed to pick up a bit of a chest infection (for a change). It’s a bit of weird one for me in that it has been getting better then worse, then better then worse for a few days now despite taking anti-biotics. Some days it is brilliant and appears to be completely gone then others are pretty bad and result in uncontrollable coughing fits all day. No rise in temperature though which is a good sign especially for all the nurses on C1 at Heath Towers who I guess right now are reading this thinking, “Oh No!!!!, he’s coming to stay”. Well let me assure you I am trying my best NOT TO come in and grace you with my presence for while, if that’s okay by you?? It has made things a little strained at times I guess in that some of the things I have been saying recently about regaining some control have gone out the window a little I that I have not wanted to get out and about much apart from things like the Day Centre on Tuesday, which interestingly was a great chance to have a long chat with my “Key Worker” ( although I haven’t quite worked out yet what she does with all these keys) Louise, about a rather interesting training course she has been on recently which was all about coping with the emotional side of both , being diagnosed and living/dying with a terminal illness. There has been a recent extremely successful pilot scheme in one of the neighbouring Health Trusts that has included automatic, immediate referral to a Psychologist at the time of diagnosis which I know personally would have made such a difference to me and would have made things a lot easier to cope with right from the start, instead of struggling on, trying to find this sort of support myself which, in a lot of ways, actually added to the emotional problems as it was quite frustrating setting things up. So hopefully this will be taken on board elsewhere as from the little I have discussed up till now with Louise it appears to be an innovative approach that works. I will try and get some more info from her when I see her again next week and I’ll post a few links to the sorts of things they are attempting to do etc in case anyone wants to know more.

I don’t know. Why do the blogs seem to just go on forever, with page after page? I guess at times there is a lot to tell you, but I will have to try and find some way of condensing them a little, even to help my mother out a little as I know she prints them all out and she is now having to think about having an extension built to store all the many volumes of previous posts, let alone the destruction of the rain forests to provide all the paper ha ha ha!!

Only one more bit of “Breaking News” of which I will go into more detail next time and that was a brilliant day out yesterday at the “Mobility Roadshow” at Kemble Airfield, which was amazingly HUGE and crammed pack full of every conceivable vehicle, scooter, motor home including one Winnebago which was simply awesome and a mere snip at £139,000, so more about this lot later including a few piccies of the new car I am getting.

See Ya!!

2007-07-12T17:01:00.001+01:00

What A Difference

What a difference these last few days have been, almost like a completely positive experience, not without the odd fall back or two though to keep me on the straight and narrow. I have continued on from the last blog really and kept trying, rather successfully too, to live for today and attempt to re-gain some control over my life.

I guess the positive input I have been getting from family and friends has had an impact too as they are all behind me in this new approach even if it does mean in some of the cases that they are making more work for themselves, but they loves me I know!!!!! I’ve managed to get out and about a little as well as entertaining at home too. I had a visit the other day from Fav Cous and the queen of the old time music hall days, Aunty Josie and Craig and Jessica who really can no longer be described as kids as they are bigger than me now. They come bearing gifts of Frankincense and Myrrh, well a nice warm Bloomer Loaf and some Juicy Bacon, for my Birthday which I can tell you has been going down a treat since. It was nice to see them all as we don’t meet up that often. Mum and Dad have been spoiling me too and have been up a few times. Even coming up to cook me my tea one day and Dad has done a grand job at fixing my back gate for me. She also brought my prezzy down which turned out to be a Bread maker which just happened to be exactly the same one Judith had bought me too apart from the colour ha ha ha. Maybe I will have to increase my bacon sarnie intake to use up all the extra bread.

I’ve noticed too that the work to put slopping curbs around the estate didn’t in fact start on Monday as was promised but after a few phone calls to investigate and having got a huge apology they have started the work today which is good and should make a difference.

“BREAKING NEWS” I have just come off the phone from the Occupation Therapist. The assessment that most of you will know has been the thorn in my side all this time and has resulted in all the various people fighting on my behalf is actually going to go ahead on 25^th July YIPEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE!!!!!!!!!!!! The lovely and really helpful OT that I had 2 years ago has just returned from maternity leave and has been handed my case. I remember she was so helpful back then and really did attempt to move mountains for me so I am hopeful of some movement at long last. I will keep you all informed of what happens. I did say I will give her a big kiss when she comes but I’m rather worried now that I might have put her off coming???

I’m off to celebrate with a nice cold orange juice with maybe a little something slipped in if I can find where they have hidden it all.....

See Ya!!

2007-07-07T07:21:00.000+01:00

I Could Get Used To This!!

Surprisingly I’ve had a really good couple of days. When I say good I don’t mean it as in the sense of what most people might associate it with such you know that feeling you get when you have come back from a long walk in the countryside admiring the beauty of nature, when your legs are aching because you walked a bit too far but it doesn’t come into it at all and you feel like this glow all over and a sort of sense of satisfaction. Well that’s the feeling I’m having at the moment.

My breathing has been somewhat under control although I guess it hasn’t changed a great deal medically just an emotional thing. I have felt a lot happier in myself and wanting to get out and as I have mentioned in the last few posts actually “Live My Life”. After what seems like a lifetime of obviously not doing this it is a bit of a novelty I guess but having been enjoying it so much it will hopefully continue on. I have started to ask for help a whole lot more too and not attempt to kill myself and in a strange way I am enjoying that now. Doesn’t everyone want to be waited on hand and foot after all if their honest and I suppose I am just taking it one step further. Yes, I have lost the choice aspect of it in some ways but I have gained back some of the control side of things too. The choice is still there too just maybe a different one that’s all.

As a result of this new found approach I have started to return to doing a few things that I used to do a while back such as cooking a lot more. Nothing too adventurous, things like the Bacon Sarnies which goes without question but I have also done what I think is actually my first attempt at a Caramelised Onion and Mushroom and Bacon Quiche which was divine and I also made a couple of Seafood Pies topped with Parmesan Mashed Potatoes which were equally as nice, in fact I’m going to have the last one for lunch later on. It’s the good old favourite, Liver, Bacon, Mushrooms, Onion and Gravy for tea later on which I actually adore.

I also noticed when we went out on Wednesday that the slopping curbs that I had been promised would be done around here by the end of last week had still not been done. So I rang the director and was ready for a fight. To my surprise he stopped me in my tracks. He was saying, after passing through the area the other and noticing this himself he was furious and got straight onto it. As a result they are doing them on Monday and Tuesday next week and he has apologised profusely.

I had a visit to the Dermatology department yesterday too which although I knew was going to be a bit of a waste as there is not a lot that can do for me as in treatments etc except to say carry on what you are doing, I thought that I would at least be able to get the consultant to write a letter in support of financing this Extracorporeal treatment which he is all too pleased to do for me. I’m not expecting that he has any more weight in this than probably the cleaner who I always see moving the mop around in exactly the same spot in exactly the same corridor at Heath Towers every time I go there. I think she might be trying to dig a tunnel out of there maybe??

As part of this new era I have decided too that unfortunately the car is going to have to go, well get changed anyhow. I am finding it now, quite hard to get in and out apart from the fact I haven’t been able to drive it for some months now as I am no longer safe I guess. Some people may say mind you that I never was safe in the first place. I rang Motorbility to enquire what the implications would be as I still have 2 years to run on this contract and they were wonderful. I can change it no problem at all. There is a small penalty charge of £100 but I found out that the £500 deposit we paid when we got the car is refundable pro rata and as such they will just take it out of this and I will get what’s left back to spend on me!!!!! Now where did I put that list???? I didn’t waste any time and got straight on the web and started looking for me new motor. There are loads to choose from. I need a vehicle which is Wheelchair Accessible and also has ample head room inside as some of these vehicles seem to be very cramped. I don’t particularly want to spend any money on a deposit or else I will not get to buy any prezzy’s for me. I have settled for this one HERE. It is the only one that I can find that has a high roof as standard anyhow and the view from the wheelchair and overall space looks good. It should make a big difference all round not least of all for Judith or whoever is with me who will no longer have to lift the scooter in and out and set it up for me. There’s always the fact that I get in such a mess just getting to the car and then getting in and out. All that will change now, well as soon as I can try and get my Dad to come and fix my back gate and build me a bit of a ramp down from the decking outside the Lounge French Doors. That way I can just drive straight from my armchair around the house and up the ramp into the back of the car and all without the need for pit stops and tyre changes too.

Okay I had better get up and pop some pills now I think as no one else seems to want to take them for me, spitefull buggers!!!!

See Ya!!

2007-07-03T09:28:00.000+01:00

A Fresh Outlook!!

Okay then after the recent, lets face it, pretty dismal news regarding my present and more importantly future, which I say with some uncertainty, I have sort of discovered that there needs to be some pretty major changes in I suppose all aspects of life to a fashion, whether it be Physical or Emotional.

I have discovered that whereas I thought that I was plodding along trying to live each day to the full and also living for today I have actually been living for the future really. What I mean for example is that say I had an appointment at the hospital in a couple of days time and nothing really planned till then, I would be looking forward to going that I would not make use of the days leading up to it at all, such a waste, especially when faced with the possible future in store for me. So “THIS HAS TO STOP RIGHT NOW” and I have to start to living more for today. And making use of times when I have a burst of energy and knowing when to take a step back when all is not well.

As many of you will know, I have always had this issue with always pushing too hard some times more seriously than others and to be honest I haven’t done myself any favours in that department and have, although unsuccessfully, tried my best to kill myself off whilst doing so on far too many times to think about. Now though my approach needs to be along the lines of thinking, if I was to have someone help me get from the chair to the car, thus taking all the strain out of the action, then I wouldn’t get into such a state as usual and then not actually enjoy going wherever it is I am going. Simple isn’t it?? Well maybe not that simple as I have lived with this for some time now and as they say habits are hard to break. But after all, what do I have to lose?? Only everything to gain. There are after all, always ways to change things to make it easier, say moving an item of furniture out of the way that was blocking my path etc, well you all get the picture I think.

So here goes, I’m gonna give it a try at least. I really want to say, “What have I got to lose” but somehow that sounds quite negative it should be more, “I’ve everything to gain” or in the words of a World Renown Expert in all things Porky especially the Low Salt Breeds, “Onwards & Upwards”

See Ya!!

2007-06-29T13:02:00.000+01:00

To Breathe Or Not To Breathe??

I hope you are sitting comfortably as this post is quite long although it does delve into some major thoughts later on which I think would not be explained rightly in a few words or so.

I dragged Judith and my P.A (Kya) to probably my most hated place yesterday, (Llandough Hospital) for an appointment with I would guess my least favourite consultant in the Chest Clinic. I haven’t actually seen him for I guess around 8 or 9 months now as I had cancelled my last appointment as I could not see any point in attending to be put through hell on the various breathing monitoring machines, those of you that have had this experience will tell you it is not a good experience and always leaves me coughing and spluttering and generally shorter of breath for the rest of the day, and when I do eventually get to see the man he doesn’t tell me anything that I didn’t know previously, that is unless he has a brainwave and decides to give me another diagnosis to add to the 10 he has already given me to date. Merlin had suggested when I saw him last week that it might be an idea to go this time to at least have these lung function tests done to get yet another new “Base Line” figure as to my lung capacities etc.

As I had mentioned in the last blog I believe it was the gvhd had in fact risen now up to nipple level causing yet more of an obstruction to my lungs being able to expand and if left to just continue un abated it would eventually starve me of oxygen. This, of course had stirred up all sorts of visions and subsequent emotions afterwards as you can imagine. Well I know, and to be honest you would have to be extremely stupid if you didn’t, that my results would be considerably worse than previously but when faced with the facts in black and white it is at best very startling and at worse downright frightening. The machine used to collate the results of the tests have just been changed so when I was in there having them done they could not access the previous results for me to compare and had to wait to see the consultant before I could get them. Well in we went. After a bit of searching back through my notes which is no easy task as there are hundreds of them and some twiddling on the computer he came up with them and the results are as expected not very good reading. They are split up into two main categories. One figure is given as to the overall capacity of my lung and the other which is more important in some ways as this more or less determines the efficiency of the lungs too, Is the capacity of the small airways in the lungs so here they are.

Previous: Overall Capacity 1/3rd Capacity able to be used and Small Airway: 1/5th Capacity able to be used.

Yesterdays: Overall Capacity 1/5th Capacity able to be used and Small Airway: 1/10th Capacity able to be used.

The second result highlights not only the deteriation of the lungs overall but the seriousness of the lack of efficiency too.

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WARNING!!! THIS NEXT SECTION CONTAINS THOUGHTS AND FEELING WHICH SOME PEOPLE MAY NOT BE COMFORTABLE WITH SUCH AS DEATH. I DO NOT APPOLOGISE FOR THEM AS IT IN MY OPINION IS A MAJOR PIECE IN THE OVERALL PICTURE THAT HAS TO BE DEALT WITH.
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I know this has been getting worse for some time but for all sorts of reasons I guess I had just tried to not think about it as in the long term progression. Therefore it has brought on new discussions with Judith and some of the many other millions involved in my care in some way or other. Things like would I like to be taken to I.C.U to keep me alive on a machine of some sorts if I was to get say a serious case of Pneumonia? Or any other reason for me being taken there. My thoughts and wishes are fairly clear I guess in this matter although I will say that up till these last few days I had not given it much thought. My approach to this would be that if, by being treated they can give me assurances that my “Quality Of Life” would be better than it is now and not just used to prolong my life then at this moment and with the level of Quality Life I have now then I would accept treatment. If, or more likely, when my condition deteriorates to the stage where I am Bed Bound and reliant on other people to do everything for me then I will not accept treatment which I would just see as prolonging the inevitable end result, Death. There is no denying the fact that for me the future is not too bright and although various things are being done to at least stem the flow of the onslaught of the various problems the reality is that I will just continue to get worse and worse and the skin will get tighter and tighter and the lungs will eventually not be able to keep me going with enough oxygen and I would like to at least I guess be comfortable in the fact that Judith, more than anyone else isn’t faced with the horrendous decision of allowing them to treat me or not and also what I can only begin to imagine must be the hardest choice of all that many people are faced with on a daily basis and that’s, when is it time to say enough is enough and switch of the life support machine? There is too another important thing that I would like to happen and that is that I would like to “catch the last bus” or “Drive off into the distance” or “DIE” if you like, whilst at home and not in some grotty hospital connected up to all sorts of things making constant beeping noises and hidden under a mass of spaghetti like tentacles stuck up and into every available orifice. This does seem one area of Cancer Care in particular that is very good, palliative care. They seem to be very efficient in their approach and do a great job in supporting not just the Patient but all the family and other relatives and friends etc which is great relief.

So you see there will be a lot of discussion needed over the next few weeks etc and no doubt a lot of maybe more thought provoking posts as things arise. This may sound kind of strange, in fact it feels kind of strange, but in talking about Death and everything leading up to it so to speak I am feeling almost positive about it if that’s possible. Maybe uplifted might explain it better but it most certainly is not a negative feeling at all.

Okay then I am off to have a bite to eat, alas, not a bacon Sarnie as I’ve run out of a somewhat important ingredient. Bacon. Have to make do with some noodles or something.

See Ya!!

2007-06-24T12:59:00.000+01:00

All Clear!!

I guess it doesn’t take an idiot to work out that I have been a little quiet at the moment and I suppose there are a few out there who would have been glad of the break, a chance to regain some sense of sanity, but there has been a lot on my mind of late, much of which I have talked about in the last few postings. Stuff like the worsening mobility problems and the breathing etc ect.. I would be lying though if I was to say that this is all that is causing me some concern / distress. Just when I thought there was nothing else left out there for me to experience and I don’t mean things like Bacon Sarnies and nice juicy steaks and also the latest delicious addition to my varied diet, King Prawns in Batter from the local Chinese, which are to die for and really not fattening at all!! Back to the point, see just the thought of food sets me off on a totally different angle. About 2 weeks now I noticed a lump in that very delicate area between my legs, no not my wallet, it was in my, well , do you want me to spell it out for you?? Jeeeez, why do I find it difficult to write “it is in my Scrotum Sack, where my Testicles or Balls as they are commonly known reside”?? it is quite mobile and doesn’t appear to be connected to either testicle which as I have subsequently read is good news if there is such a thing, but as you can imagine all sorts of things spring to mind. I was thinking back to the very early days when I started out on “Chemo Highway” and remember being told then that the risk of contracting other forms of Cancer after being diagnosed with Leukaemia was a lot higher. I will admit that at first it was a case of burying my head in the sand and refusing to accept there was anything there at all, so much so that I didn’t look again for a few days. Sadly though the odd little twinge of pain and slight soreness was there to confirm that something was not right down there and I needed to get it at least looked at. I did my usual trick and kept it to myself, not even telling Judith for all the old stupid reasons which I seem to cling on to such as not wanting to be a burden or not wanting people to feel sorry for me etc etc it has appeared to have grown a little over this time although the pain felt is still the same if not maybe a little less not that this has eased the worry. Anyhow, I decided that as I was to go and see Merlin last Friday I would hang on till then and have a word with him. I obviously had to tell Judith before then which was quite hard actually. She has been a real rock for me to cling to all through this and just seems to always have the right things to say at the right times. No matter what I put her through she always bounces back. I could probably write a whole encyclopaedia on what she has done for me, especially these last few years and I love her to bits, well, what’s left of me does!! So when I went to see Merlin Friday he sent me for an ultrasound scan as a preliminary check to see what was happening. When I finally managed to get myself in a position that the radiologist could examine me due to my breathing being exceptionally bad that day he had a good old poke around. He assured me that I had a perfectly fine, normal pair of Testicles and that the lump was nothing to be concerned about at all. It was most probably some kind of cist or swelling around where they has tied up the tubes many years ago during the vasectomy. I must admit I did have a feeling of relief, as although I had pretty much convinced myself it was nothing by the time I had got there it did help to get a more, lets say, professional diagnosis. So just basically keep an eye on it and if it continues to grow or become more painful to arrange to go back.

Between Judith and myself I think we put Merlin straight in the sort of major problems I am now having to cope with. Up till now the skin gvhd on the lower half of my body has started at the level of my belly button and gone right down to my toes. Now though, on examination he found that it has moved over the last 2-3 months up in line with my nipples, a change of around 7-8 inches I guess, quite considerable. The obvious main problem with this is that this tightness will have a direct effect on my lungs being able to expand as the room available will be less. The seriousness is also that left uncontrolled the result will end up me not being able to breathe in enough oxygen to sustain life, which as you see, may cause a few complications. As the ongoing squabbling over who is going to fund the Extracorporeal treatment continues on, some 9 months after it was suggested that it would be of benefit for me, we are pretty much struggling to find other forms of treatment. Merlin has decided to put me on a course of Methotrexate once a week, which should have the desired effect of at least slowing down the gvhd army’s onslaught I have had a dose or two of this in the past but then it was as part of the overall Chemo regime and much higher doses too. He has put me on 10mg once a week which should keep me out of the sickness zone so to speak. There are as usual the same old side effects such as sickness and stomach problems, but the main one with this drug is Mouth Sores of which Peter explains all on his postings lately even forcing him to for go the odd Bacon Sarnie which is deadly serious indeed. I am hoping to not be able to compare notes on levels or soreness if that’s okay by you Peter??

I feel like Michelin man at the moment due to the dreaded water retention which seems to be pretty severe at the moment.

Right off for a surf around as I think I have bored you all quite enough for one day.

See Ya!!

2007-06-20T15:57:00.000+01:00

Wrong Or What??

How wrong is this?? An elderly resident at a nursing Home, whose rights are not considered to be covered under the European Human Rights Act, yet some bloody religious fanatic, who decides to take it upon himself to strap a bomb on his/her back and set it off in a crowded place killing possibly hundreds of innocent people in the process is!!! This surely is not morally right. I know that in this country the present day, almost unhealthy obsession with all things being “Politically Correct” is to a very minor, in my opinion, needed but is it just me that believes we have already gone way, way, way too far? I thought we had gone too far when children were no longer taught the great old classic, “Bah, Bah Black Sheep” as it was now considered racist, but the finishing straw for me was recently when they have now stopped pupils from putting up their hands when wanting to answer questions in class. Are they having a laugh or what??? I have had this thing for a while now that the various Disability Action Groups etc, who’s intentions are quite honourable, standing up for equality and peoples rights etc, all of which are so badly needed, but so many of these seem to spend so much energy on what I would consider a trivial matter what Disabled People are called. To me, being disabled myself, I really couldn’t care less what you call me, be it “Cripple”, “Spastic” etc etc, but I care a whole lot more about being given equal rights to Employment, Education, Transport, Bacon Sarnies etc etc, isn’t that what is important after all??? I guess it may not grind on my nerves so much if it didn’t change so blinking often. It seems that every year or two we have to now refer to Cripples like myself as something new. Maybe the next one could be something like “Bacon Muncher”, but I guess saying that might offend the Muslim population because of the whole pork thing, oh yeah and all the Veggies out there too. Back to the drawing board then!!!

I think I must have mentioned somewhere in the deepest realms of the many previous rantings my issues regarding having a bed downstairs in the Living Room. as you will know, I haven’t actually slept in a bed, apart from the many stays in “Heath Towers” that is, for far too long to remember now, despite almost continuous hinting and more recently attempting to beat me into doing it from all concerned such as District Nurses, Doctors etc. Well, on Monday I finally caved in to all this pressure and asked the District Nurse to arrange it for me to have one of the All Singing, All Dancing Hospital Beds delivered, which is actually coming tomorrow morning. I am hoping it will at least help somewhat in trying to sort out my sleeping pattern by actually allowing me get some in the first place, might help. My main concern was that I just didn’t want the room to turn into a hospital like room for all sorts of reasons but when you get to the stage I am at, not sleeping more than about 1 to 2 hours on a good night that is, I actually had 20 mins the night before last, which made me into a right mess all day yesterday, and actually stopped me going shopping which I was really looking forward to after day centre, it is time for a change I think. I suppose even if I wasn’t to sleep much more, because of the control over the positions it will be able to go I will be somewhat more comfortable than the already fairly comfortable reclining chair I am using 24 hrs a day at present. The one major downside is that poor old Judith is having to do some major furniture shifting to be able to fit it in, and it will unfortunately leave me with just 2 chairs including the recliner and the bed to sit on and no sofa due to lack of space, but we will just have to get used to it.

Dentist today too which wasn’t too eventful. They just ended up grinding down a few stumps which used to be teeth, but are now damaged down to almost just roots that are left in readiness for having a complete denture to replace the almost complete one I have already in place in the bottom. The next step is to do the top one which will be a little different as they need to take out 2 back teeth before changing the denture, OUCH!!!!

See Ya!!

2007-06-18T16:45:00.000+01:00

Deep, Deep Down!!!

Oops has it really nearly been a week since I last inflicted my rantings on you lucky things. Think yourselves lucky as it hopefully doesn’t happen too often.

I guess a lot of my time has been taken up, trying to get my head around the changes that are happening in my life some of which as you may have gathered by now require a lot of getting around so to speak. I have been finding more and more that the old negative demons that have appeared from time to time in the past, trying their best to drag me into their pit of depression are screaming more loudly than usual and I would be a liar if I was to say I have not at least spent some time in their company. I’ve had many a thought such as, “Is it really worth fighting on”, “Was it all worth it?”, “Woe is me”, you get the picture.. It has been and no doubt will continue to be a real fight to not follow this route as however much you know deep down that it is not the way to go it is so tempting to take what many will see as the easy option, if there is such a thing and just give up. But, as I’ve pointed out on a few occasions I am a stubborn bugger and will continue to fight till the end. One thing that always seems to come to mind at moments like this is that, if I was to give up now what has all the suffering and punishment I have not only put myself through but all my family and friends as well as all the professionals involved including people like “Merlin” and also one of the registrars “Hagar The Viking” who stayed at my side treating me for hours after he was meant to be off duty, then coming back in to continue on after just a few hours rest, when I was pretty much in a continual seizure for quite some hours and pretty damn close to popping my clogs for the first and sadly not the last time, to name just a very small few. They do say that if I was a cat I would have used up all my lives by now!! So you see when you add into the equation the thoughts of letting others down too and not just yourself it kind of makes you want and need to fight that bit harder. One other thing too. Although I am by know way seen as a church going Christian I quite often have this phrase floating around in my mind which I know comes from a hymn I used to hear and sing too all those times when I was dragged along to church as a child and that’s, “Fight the good fight, with all your might”. Which does ring true. See mum it was all worth it in the end.

It is quite well documented, although I guess, always quite impossible to measure the effects of positive thinking. Take for example the number of elderly people who after loosing a partner after being together for years will then pass away themselves quite soon after, having in a lot of cases been in a state of good health all their lives. Just the thought of life without their loved one combined with just giving up in reality is enough to bring this on. We all just seem to put it down to as they say “A Broken Heart”. So the power of positive thinking is not to be underestimated in my opinion.

Okay then I will leave it there for today, jeeeez I feel like a teacher or even a preacher reigning down my sermon on you all, ha ha ha!! I’ve seen a few scary examples of each over the years too let me tell you!! Enough to scare you into confessing to anything whether you did it or not.

See Ya!!

2007-06-12T22:22:00.000+01:00

The Eyes Have It!!

In the words of the Speaker Of the House in that Dream World where all the puppets go to play, the eyes very much do have it indeed. Before i drive you as insane as me i must point out what the hell I'm on about. I finally got round to attending the Eye Clinic at Heath Towers after months and months of waiting and countless appointments being canceled by them, not me i must add. The original reason for the appointment was to investigate an apparent infection i had at the time which obviously has long gone since. In fact i have probably had 2 or 3 since then but as my eyes are still pretty bad at the moment it is a bit needed. It didn't start off too well. I was shown into a room to check my eyesight and placed in front of this kind of mirror, reflecting a series of letters which i guess a lot of you will have experienced before. Well, after placing this kind of cover over my left eye she asked me to read out the letters. I was looking and looking for them but said that i couldn't see any at all which was true. She looked rather confused and alarmed and after a little maneuvering of the mirror the penny dropped and i realized that she wanted me to read out the letters being reflected in the mirror and that they were not in fact printed on the back of this cover she had put over my eye. Ha Ha Ha!!! What a plonker!! In to see the Registrar then. He set about poking and prodding around in both eyes before giving me his expert opinion. He has said that i actually have Graft Versus Host Disease of the eyes, something i never knew you could actually get. It results in you getting large areas of dry dead skin on the surface of your eyes causing all sorts of irritation. On the plus side at least i don't have an infection, but the downside is that i have to put in Lubricating drops every hour to keep them moisturized. This may reduce a little in time as the lubricant will build up some sort of layer but even then i will probably end up needing it about 4 times a day and for life sadly as it is a permanent thing. So just when i thought i didn't have anything else left for this lurgy to attack yet again i was proven wrong. The pain has eased a little thankfully but i just have to put up with everything being sort of blurry for about 20 minutes every hour which is fun whilst it breaks down a little. I must just add a note on the usual hassle involved with such an outing as this and thats the amount of bloody waiting around involved. The actual time spent in the company of the doctors or nurses and then on to the pharmacy was maybe around 25 minute yet i was up there along with my p.a for about 4 ½ hours. Very frustrating in the least.

I had a great day today again at the New Horizons Day Centre or as the beloved daughter calls it “Day Care”, cheeky git!! i haven't said a lot about them yet i know but they won't escape the blog for too much longer I'm sure. They're a lovely bunch and so friendly and talkative too, which all helps to make you feel settled, and the foods nice too. I think i will begin to make my mark soon in corrupting their minds with all the drivel I've inflicted on all of you for so long long now, i think they may be about ready now for some hard core Jonny5 Ranting!!! Wish them luck poor souls!!!

Okay more eye drops needed as i cant see the blinking screen anymore.

See Ya!!

p.s HIYA LOUISE If YOUR READING THIS!!!!!

2007-06-07T10:58:00.000+01:00

A Change Of Direction!!

I've come to the realization over the last few days that i have appeared to have turned a corner on the windy road I've been following all these years and a pretty sharp one at that too. It has been blatantly obvious not just to me but family and friends that things like my breathing is getting worse and i don't seem to going be out as much. It was after all, only a matter of maybe 3 or weeks ago that i was able to make it out the kitchen in one piece, most of the time anyhow, whereas now if i attempt it at all it takes me ages and i have to stop a few times to catch my breath before finally arriving in such a state that i am useless. It's almost as if my security blanket has been taken away from me or say, my dummy because for so long it seems like i have been treading water. Everything that seemed to come up as in changes in my health etc i had experiences to some degree previously so i sort of knew what to expect, whereas now this really is uncharted territory and i suddenly feel quite lost at times. I'm the sort of person who wants to know what to expect i guess and as you will probably have read throughout this blog have struggled like a lot of people i guess with the feelings of say, giving up more independence, being a burden etc etc.. so when you get down to the last few bit of independence you have left they suddenly become extremely precious, and you tend to fight even more passionately to keep hold of them, but in doing so i think you actually make things harder for yourself in the long run as far as dealing with the emotional side of things is concerned. In saying that though, how many times have you heard that someone who had been fighting to stay alive gave up in the end and they died very quickly afterwards, implying that if you fight you can prolong things which i do believe is true to certain degree. So yet again h'm placed in blinking no win situation.

In saying all this though i seem to be coping with things fairly well and h'm even trying to think that bit further ahead to when i will be permanently reliant on some sort of wheeled contraption to get me round the house etc yet it seems i can't think past that to when, heaven forbid, i could end up being bed bound as i think at the moment that thought is very much of loosing all independence completely and IT'S SCARY!!!!!

Also a whole new world has been opened up to me, that of the Palliative Care side of things. I have obviously had some dealings with some of the services around as they do tend to overlap somewhat but the last 2 weeks or so it has been much more prevalent. In order to give Judith some respite and also enable her to carry on as a Civilian Instructor for the Air Cadets a few evenings a week i have been having a Marie Curie Nurse coming to sit with me for around 4 hours or so of an evening. When it was originally discussed we were looking to maybe have 2 evenings a week but it has worked out a bit different than that as they have been here every evening except Sunday. It's a sort of sitting service i guess and i have been very lucky in that the women that have been have all been lively, chatty and easy to get on with. I have also managed to book a short spell of respite care in the summer for a break away. I have been told that i should be able to get up to about 4 weeks a year respite which will help considerably i reckon for all concerned. It is something i had not even considered before in fact i never even knew that this sort of thing was available and to be honest just the thought of it would not have appealed to me at all, whereas i am really looking forward to it now.

Sadly the main hurdle to my keeping my independence as long as i can and to a big degree is having an effect on my physical condition worsening let alone the mental pressure is that of the works to be done around the house such as the Bedroom / Bathroom extension along with the Kitchen alterations and the Ramp etc etc etc all of which are hopefully going to be done under the DFG IF???? the local council ever pull their finger out and actually get on with doing something about it. But i really don't hold out much hope of ever even getting to the top of the so called priority one waiting list that h'm on let alone them actually doing the work. I've got more luck in winning the London Marathon.

Right time for some grub. Take it easy.

See Ya!!

2007-06-01T10:02:00.000+01:00

Look And Learn Mr Smith MP!!

I had a visit yesterday from Local Councillor John Thomas and Ken Evans (Officer For Highways) from the Local Council, to view the situation regarding the lack of sloped curbs around the area. As some of you may have read a while back, John Thomas had already visited and indeed came for a drive around the area to see first hand what I meant and did say at the time that he would get in touch with them to try and sort this out. Well, bearing in mind my experience recently dealing with MP’s and Councillors has not exactly been an enjoyable one, in fact it has been very tedious and pretty much a complete waste of time, I was not putting much faith in him actually being able to do anything, that is if he could be bothered to try in the first place. How wrong could I be??? I will explain why now. He has replied to every single email sent and promptly too. He has made contact with various people he said he would to sort It out. He has actually been to see me personally to try and get an accurate picture etc etc which sadly NOT ONE of the, dare I say it, HIGHLY PAID MP’s has done. Okay back to the visit. We had decided that at least to start with, it may be an idea to have a look at the places where a sloped curb will make the most difference for me in particular as after all we all know it comes down to funds being available or not to actually do the work. The first area we got to in a couple of minutes was I thought going to be a tricky one as the pavement on one side of the road had not been adopted by the council and therefore was not their responsibility. Well blow me!! After a quick look the response from Mr Evans was, “No Problem. We will have that done within the month”. I couldn’t believe it. No having to fight or anything, just a straightforward no problem. Well we carried on to another couple of areas which again would be very much needed to be sloped in order to allow me and others of course to get off the estate all of which came with the same reply. In all 3 areas are to be sloped consisting on 5 slopes, I know this seems weird as there should be 6 but for some strange reason a slope was put in earlier on one side of the road but not on the other. A ploy I recon to get you out on to the road so they can run you over. Ha has also agreed to come up with a long term plan to slope all the curbs into the village, therefore making it accessible to people, which I guess will involve about 20 odd slopes and even I don’t expect that to happen overnight, at least he is aware of the problems and is willing to try and address them, which is a refreshing change after all the negativity of late.

So may I take this opportunity to THANK YOU, Councillor Thomas for at least partially restoring my faith in the Political / Local Government system.

I really must learn to bloody sit still. My chest has been fine this morning up till now, until I decided to go to the toilet a marathon of some 6 steps or so. By the time I got there I was a blubbering wreck, struggling for breath again and then I had to eventually return which made things just that much worse. After about 30 mins or so when I eventually regained enough composure to be recognised as one of the Homo Sapien species I’m left with a rattle snake chest from hell Argggggggggggggg!!!!!!!!!!!!

See Ya!!

2007-05-31T10:05:00.000+01:00

The Future!!

I guess its been a pretty uneventful few days hence the lack of a blog. I am finding more and more these days that due to my failing mobility and of course all the other many things health wise that stand in the way, my actual expectations are less. What I mean is that maybe before my goal would be to say walk out to the kitchen and get there in one piece easily and not even have to give it a thought. I would have expected to have done this seemingly trivial task even as much as up to about 3 or 4 weeks ago, no problem. Today however is a different thing all together. Well to start with I would give it a lot of thought about even attempting it in the first place. I would only expect, and then only if all was going well on a “Good Day”, to make it to the kitchen after stopping and sitting down about 3 times to get my breath back etc. Wearing the obligatory Oxygen mask, yet still a right mess when I finally got there. So as a rule nowadays I probably wouldn’t even attempt it. All this is yet again adding to the “Not Able To Do Anymore” list as well as the “Independence Lost” list. I’m going to have to get new books soon as the list are getting larger and larger by the day. As you can imagine all this increased lack of independence is having just a little effect on the old grey matter, what’s left of it. I am trying, and somewhat succeeding, I think anyhow to deal with it and try and find positives in it??? I suppose I have by now had enough experience of all this that I should be a “Grand Master” or something?? But it never seems to get any easier. I know the general direction is heading towards having to be pretty much wheelchair and human reliant 24 hrs a day, with an hour for lunch of course, well one must eat the daily bacon sarnie, mustn’t one??? No amount of fighting this on my or anyone else’s part for that matter will change this outcome so practical thinking is required now. This is where all the problems start then. “MONEY”, the route of all evil and something that the local council/ social services etc have great difficulty in keeping control of and as a result there is none!! I would need things like, and this lot is without what I have already applied for under the DFG as in the bedroom/bathroom extension, an electric chair for a start. Door widening throughout, ramp access out the front and back, adapted kitchen, such as height adjustable worktops, hob, oven, sink etc maybe even hoists for moving around, I don’t really know as this would all be new territory for me, but I think you get the picture that ain’t gonna be cheap. I wouldn’t like to say how much the overall cost would be but having seen the usual rip off prices of any other “Medical Aid” I wouldn’t expect much change from £35.000 - £40.000.

So if anyone out there has a spare few quid they would like to donate to the “Save Jonny’s Dignity Fund” feel free to pass it on, that is unless you have a lovely already adapted bungalow you would like to let me have. I’m good at gardening, well let me put that a bit more accurately whilst you all stop chocking with laughter, I’m good at watching and ordering about other people gardening. I do make a mean bacon sarnie though and you would have an open invitation to pop by whenever for a sample.

I actually don’t think I am joking this time either!!!!

Just one other thing before I go. I have been suffering for a little while with very sore eyes, so much so that I went to see the GP yesterday and he seems to think it may be either an infection or hay fever and has given me some drops to try for the infection first then if that doesn’t work to go an to the other hay fever stuff. They are extremely painfull, so much so that I am having to pretty much permanently close my eyes to stop it being painfull. The computer has been a complete no no along with the telly too. I don’t think I would be any good at all if I was blind. I wouldn’t be able to cope. This blog has taken me hours to do through squinted eyes just opening now and then, and heavily relying on the spell checker so do excuse me if it is that bad.

See Ya!!

2007-05-26T15:33:00.000+01:00

When Is A Corn Fed Chicken Not A Corn Fed Chicken?

It seems that the food industry have been in for a bashing this week, especially some of the big Supermarkets. It appears even today though that even buying Organic Veg can be bad for the environment.

There was a right howler uncovered after DEFRA revealed the results of a routine check on the Corn Fed Chickens, you know the ones that always look an alien shade of yellow, that were on sale at various Supermarket chains. It appears that my favorite out of town giant Tesco's” were selling Corn Fed chickens that had not in fact been fed on corn at all. Bearing in mind they charge pretty much double the cost of an ordinary chicken for these we've all been ripped off yet again. Of course they are not to blame, oh no they wouldn't do that would they?? it's the farmers fault as he had “Inadvertently Fed the chickens the wrong feed” Ummmm would this be the same farmer who has probably been farming chickens all his life and quite likely knows more about feeding them than anyone need know about??? It's strange also though that all the other chains passed with no probs. This comes on the back of an earlier clanger in the week from the BBC documentary “Whistle blower” where Tesco's along with Salisbury's this time were shockingly filmed selling potentially dangerous and at the very least way out of date meats etc in it's stores. It highlighted how easy it was for these supermarkets to get away with it by simply altering dates themselves and the fact that they ignored the dates anyhow and instead favored the old “If it smells okay then it must be okay” approach. I guess in some ways, those of us who have to shop in these sorts of places and demand cheap prices for top quality produce are to blame. As in doing so we are forcing the retailer to squeeze out every penny on profit they can from their goods. In saying that though they are making such huge profits that it is a drop in the ocean what they will make by doing this. It does make you think that if you do try and source cheap produce what are you actually getting??

I noticed today too that the Soil Association are considering stripping the Organic status from food flown into the uk. They are even considering a total ban on importing food produce all together. Bearing in mind that it appears that only around 5% of the Organic Vegetables consumed in the uk are produced in the uk i can see there being some problems there. So is buying Organic really the best option? Or is it more a case of trying to buy Local and also Seasonal. It seems that this day and age we all demand every type of say fruit and veg all year round and that as businesses such as the likes of Tesco are at the end of the day in it to make a profit they are more than happy to provide us with our every need. I don't have to think back that long ago to when i was a mere Prototype Little Jonny5, no sniggering at the back, when we all used to have to eat what was “In Season” and it never did me any harm!! i think if anything it probably made the food taste all that much better. Hands up all those like me who used to get excited watching the little tomatoes growing, often in your grand dads greenhouse, anticipating the first sweet juicy mouthful when they finally ripened enough to eat, or if you were lucky enough to live near the countryside going Strawberry picking in the summer and eating more whilst you were picking than what you actually purchased from the poor farmer before you left. It was just taken for granted back then. Waiting for the New Potatoes to come in whereas they are expected all year round now. I guess we, as the consumer have the ultimate power to change this back by simply not buying the stuff, but you and I both know that nothing will happen so there goes another piece of our culture consigned to the “History Files”, as even they are not “History Books” anymore as they are not in black and white anymore, instead they are on Disk.

Whats the world coming to????

See Ya!!

2007-05-25T11:36:00.000+01:00

We Have Movement!!

Over the last few days things have progressed somewhat on some of the issue's i am having to deal with at the moment.

I owe a lot of this progress to my local councilor Mr John Thomas who, since getting involved seems to have made more in roads into these things than all the rest such as my mate, John Smith MP and Jane Hutt AM, who is most probably busy trying to safeguard her political future as the fiasco that is the Welsh Assembly rumbles on, put together. He is the only one that has actually come and spoke to me face to face, responded to every Email, Letter etc unlike some i could mention.

Okay then, whats been happening?? firstly on the matter of the DFG (Disability Facilities Grant). The local council has been continually telling me for some time now that i am on the only list that is currently moving and that they will eventually get around to assessing me. What John Thomas has managed to find out by contacting the officer in charge of the department is that yes i am on that list and very high up it too. Also the main reason for the slowness is not just down to money, although there is no hiding from the fact that they are £5 Million in debt they have also been running the department on very minimal staff. They have just employed 2 new Occupational therapists who they hope will be starting the beginning of June. They are also going to concentrate their attention on this particular side of the backlog so it shouldn't be long before they get around to the assessment. So there may be some light at the end of the tunnel after all, although this would just be the first step towards getting the work done.

The next thing that Mr Thomas has been trying to look into for me is the issue about a complete lack of sloped curbs in the area. He had visited a while back and saw first hand what it was like. He agreed with me then that it was not acceptable and something needed to be done. Well, he has managed to get hold of the the Chief Executive of Highways, who would have overall control in this matter and has arranged to come and visit me along with himself of course, next week. So a chance to put across my case to the person who pulls the strings and mot the usual body hanging from the end of them.

Here goes the hat trick although this one isn't down to Councilor Thomas. I have finally got around to having a re-assessment done by my Social Worker concerning the amount of hours of Home Care they provide. Up till now i have been given 6 hours a week which is supposed to be to help with things like coming shopping with me, some sort of social outing i.e trip to the park to play on the swings and slides, ohhh i do love being spun around really fast on the roundabout, don't you?? The other thing it was given for was to do some general housework etc. At the time the last assessment was done i guess 6 hours was about right for my circumstances then although what with one thing or another it is nowhere near enough now. My circumstances and therefore my needs have changed quite dramatically. I now need more help with basic things like washing and dressing which i think should not be assumed to be Judith's responsibility just because she is my wife, also as i am not as mobile as before i am not getting out the kitchen as often as i would like. Sometimes i will wait for hours for someone to come home and make me some lunch say, instead of struggling out to get some myself and ending up in a right state. It is quite a complicated issue, funding for all this, as up to a certain level financially i think she did say it was around £250 per week, the Social Services would be responsible for paying. If the total cost of the package went over this then they would have to request funding from “The independent Living Fund” which i believe is under the remit of the local Primary Care Trust, which is another ball game completely. One of the problems with this is that i would have to hand over ½ of my DLA to pay towards it, which is rather strange when they are continually telling me that i am actually living on far less than the government says i need to live a basic existence. There are as well a whole load of issues involved in going this far not least of all yet more people to have to deal with. There was also the suggestion that in the future if it appears that my medical condition is the cause for my needing further care then they would have to seek funding from the Health Authority along with all of their services etc which would probably prove to be a nightmare. If you bear in mind that the cost for the 6 hours a week i currently have a P.A for is just over £55 it won't take too much to reach these various levels. What has been decided and indeed what will be put forward for approval at next Tuesday's meeting is a request for an additional 14 hours taking it up to 20 per week in total. The additional hours are officially to be used as follows although as i am responsible for employing my own P.A there is some flexibility. 1 hour a day in the morning for help with washing and dressing, also to make me a snack and a flask for lunch if i will on my own during the day. It was discussed about having someone in over the lunch time but the additional 7 hours a week would take it over the limit i have said. It is also for 1 hour per day in the evening again to help with washing and dressing and generally tucking me in for the night including reading me a bed time story and a nice glass of milky horlicks Mmmmm!!!! i might not suggest the rocking to sleep and the winding though as i can forsee some pretty messy problems there. It looks hopeful that i will get these changes and then it's just a case of getting on with it i guess. It should make some difference i think but we shall have to wait and see.

So as you see, things are moving in the right direction at least, all be it in short jerky movements, but as a certain person would say Onwards & Upwards, is very much the order of the day.

See Ya!!

2007-05-21T21:03:00.000+01:00

The Minds Eye!!

You will have to excuse me before i head off on this rant as to be honest I'm not quite too sure where it will lead, but what the heck, life's too short and all that, so here i go.

I've noticed lately that the blog has sort of changed direction, somewhat to do with the what might be seen as positive or negative direction my illness and subsequent treatments and symptoms has taken. Other reasons could be that My friends Peter and Elsbeth's blogs have both featured thoughts on reflection etc and that has started me thinking about what i have been through and more important i guess what sort of person i have become as a result of all this. So this i hope will turn out to be a glimmer of the type of thoughts that i and i guess many others going though similar issues have to deal with, which sadly no one warns you about and you won't find it in any text book. Now i know that i have and still do try and mention the physical aspects/problems i am having to deal with so repeating them all would be a pretty useless exercise. It's more the psychological, emotional thoughts i want to try and get to the bottom of.

I realize that this blog may well go on and on and on and on, a bit like Mrs Doyle again, and as such i may just cut it off in it's prime and return at a later stage to catch up.

So Here Goes!!!!!

i guess it all starts with the initial bombshell. No matter how much you glam it up or play it down for that matter, when you are told you have a critical illness such as in my case Acute Lymphoblastic Leukaemia it is very much a jaw dropping experience. My first reaction was “Oh My God I'm Gonna Die” which sadly the doctor responsible for giving me this great news was not doing or saying anything to the contrary to ease my worries. This then was followed with all sorts of emotional tidal waves. There is the old favorites “Why Me” and “What Have I Done To Deserve This”, which even at times rear their ugly heads today still. There appears to be a sort of thread that runs through all these emotions and that is they are nearly all connected to the feeling of loss/grief and guilt too, which i hope will become clearer later. I found by the very nature of the treatment available to me my independence was being stripped almost right from the start which brings with it a lot of anger i guess you can call it. I, depending how you look at it i guess, was pretty much off on another planet due to a combination of the Illness taking hold and the huge quantities of drugs being pumped into every available orifices and some which were previously unavailable too. OUCH!!! so i was spared some of the initial seriousness. I guess though the seeds were even then being planted that are the emotions i am having to deal with today. Where i think the Loss feeling are there are things like losing Independence. It just tends to start off small with even silly little things like because you might have mouth ulcers or similar, something i know Peter is dealing with at the moment because of the GVHD you cant eat anything comfortably unless its stuff like soup or ice cream, when all you want is nice big juicy bacon sarnie, but the point is YOU DO NOT HAVE THE CHOICE!!! it has been taken away from you by this bloody alien called Leukaemia. This has continued as you can imagine throughout this past 3 years 5 months and 4 days but who's counting?? to varying degree's. Slowly throughout i suppose it has become more long term loss that has become just part of life. General feelings that this illness has slowly and systematically robbed me of pretty much most of my independence with things like, being as my mobility sucks to put it mildly i now have to rely on someone else to help me with basics of life such as dressing and washing, even thinking at times which is scary. The point is that all these things, and i cant emphasize it more strongly have been “TAKEN AWAY” and not actually “GIVEN UP” by me. I think this has been and still is the one emotion that i just have not been able to deal with successfully and as such does cause some problems occasionally with depression etc. i just find it soo hard to come to terms with losing yet more to this bloody thing as to be honest i am scraping the barrel as to what independence i do have left for it to take away from me. Almost all activities if possible at all now that i used to, much like everyone else just take for granted i now have to rely on someone else to either help me to do it or do it for me. I guess i sometimes see it as stripping away my identity too. In that i mean, i have become a “Case” and often a “Number” or if h'm lucky maybe “Both” and no longer John, which as you would think brings with it a whole new load of emotional happenings to add to the party. I have often said that i do not actually recognize myself anymore physically as due to lots of reasons my appearance has changed beyond belief since this started. If i were to put up 2 photo's, sort of a before and after thing you will agree with me that it is not the same person at all. I did for quite some time use this as an opportunity to kind of re-invent myself. Being able to truly i guess make a fresh start. In reality though you are who you are by what you have been through in life and all those memories are as much a part of you as your skin is. So yes you may be able to fool yourself and everyone else for that matter into believing you are someone new but deep down inside you are still the same person you have always been just living a lie i guess. Even if, as i do very often wish i could change the past, what effect would it have on me and would i really want to do it, now I've seen the person i have become now?? A tricky question i think, one which i don't think i could really answer comfortably.

Right I'm going to have a rest for now but i will try and return to this at sometime soon to carry on a little as i think there are still some emotions that i have and am experiencing which haven't got a mention yet.

See Ya!!

2007-05-21T08:27:00.000+01:00

Democracy My Arse!!

For those of you who haven’t been off on Mars holidaying, you might have noticed and even , dare I say it? Taken part in the Elections that were held on May 3^rd in Wales, Scotland and England. The Differences between them was that England voted for their Local Councilors, whilst Wales and Scotland both voted on their respective Assemblies. As per usual their was the right old mess in both the collecting and counting of the votes which goes without saying. There were stories of people such as a nice man in Scotland who went into a local Poling Station and smashed up the Metal Box containing all the completed Ballot Papers, resulting in the adjudicators there having to pick them all up from the floor and try and put them in another available box.

My experience of the Welsh election was and is causing some dismay really. We were given 2 Ballot Papers to fill in. One was for the Local Assembly Candidate, who, in my case the winner was Jane Hutt the Labour Candidate who had been the previous AM but only by an 85 vote majority. She only got this after, wait for it……5 RECOUNTS!!! each of which had come up with a vastly different figure. Some were 100s in her favour and others were 100s in closest opponents favour. How can this be?? Just goes to prove how completely inaccurate the whole process is. The other Ballot Paper was for you to state very clearly which Political Party you wanted to lead the assembly. Labour won this vote again continuing on from the last 4 years but this time with a reduced majority of 26 seats out of a possible 60. This is where the lack of democracy comes in, in my opinion. The fact that the public had voted for 26 Labour Assembly Members with their nearest competitor Plaid Cymru getting just 15 and I suppose I shouldn’t leave the others out too, so, Conservative got 12 seats and the Lib Dems got 6. There was also 1 Independent elected too making up the 60. This says to me that the General Public wants Labour to have control over their affairs. In order to have overall control they officially need to have 34 seats so have had to set about trying to do a deal with one or more of the other parties to join forces or maybe even to go ahead without the overall control which is possible. The other more interesting outcome which is very much being talked up at the moment and each day seems to be the way things are going to go, is that the other parties, Tories, PC and Lib Dems join forces and take control of the Government!!!!!!!!!!!!!!!!!!!!! So in effect the public may as well not have bothered voting, as what we want as usual, is going to be completely ignored as they are going to do exactly as they please. Democracy, MY ARSE!!!!! It will be interesting to see the outcome which has to be completed by 29^th May I think it is. No wonder people are so disillusioned with politics in general as they just seem to go about in their own dream world doing just as they please, and that’s just John Thomas my lovely MP. It was nice to see him and all the other representatives who came to canvass for my vote NOT!!!! Not one of them came within a mile of here. Maybe they have read the blog and feel just a little scared, poor mites.

I haven’t even talked about the fiasco in Scotland which appeared to be 10 times more confusing than Wales, having to fill in reams and reams of Ballot Papers. It was a good result though for the people of Scotland in my opinion, the Nationalist winning control, something which has been steadily gaining mass support there for years, helped somewhat by Labours incompetence no doubt.

Ah, shopping later, my favorite occupation. Well that’s not completely accurate. I like food shopping because it’s the anticipation of getting it home and cooking it and of course there’s the chore of eating it too, especially the Bacon sarnies which I manage to force myself to eat.

See Ya!!

2007-05-19T13:19:00.000+01:00

Heath Towers Day Trip

Up bright and early, well, early anyway to head off to Heath Towers. First stop was the Dental School then onto the Day Unit for the Immunoglobulins and to see Merlin. Parking as per usual at the Dental School was a nightmare even more so as they have blocked off almost half of their available spaces by having scaffolding up all around the building as they are re-newing the windows. Thankfully Judith was with me so whilst we were parked up in the queue waiting to get into the car park she jumped out and set up my go-cart so that I could get in on time. Unusually I didn’t have to wait for more than about 10 mins before being called in. I wasn’t looking forward to the visit as I was expecting to have 2 teeth pulled out. The registrar I saw explained that this appointment was just a sort of hand over between the Perio department I had been going to and the Oral Surgery department I was visiting today. As such he took a look in my mouth and basically just agreed with what I had told him, that I needed to have 2 teeth out and then 3 needed to be filed down before having a nice new denture fitted. All in all a bloody waste of time. I could have had another couple of hours in bed. They are going to send me an appointment in the post, surprise, surprise!!

On to part 2 then, after stopping for something to eat on the way of course. A rather delicious warm herby sausage baguette. I was a little early, in fact about ½ hour early for my appointment at the day unit but was rather impressed with almost immediately being shown to my home for the next few hours, a chair in Dracula’s Lair as I like to call it. It’s a room with about 8 or so pretty uncomfortable reclining chairs where most of the people there sit around having blood transfusions mostly, being force fed Daytime Telly. I was to be looked after by Jane who is a lovely bubbly nurse but has the tendency to try and do too many things at once and as such it is usually an experience to say the least. So, first things first, trying to get blood from a stone. She set about throwing javelins at my poor hands and arms. The first 3 all ended in complete failure after painfully putting it in then wiggling it around a bit, before eventually blowing the vein completely, causing a rather nice, painful, black bulge under the skin which will make a nice bruise in the morning. After dunking my hand in hot water for 15 mins she tried for the 4th time and managed to get it in all be it very positional as they call it, meaning if you move your hand it stops, which is no fun believe me, at least it’s in though. So 1st of 3 bottles on the go time to watch some Gordon Ramsey Kitchen Nightmares on the Laptop to pass the time. Well it’s better than Miss Marple or whatever it was on the TV. I had a visit from the Wound Nurse about the latest bunch of sores on my legs so it was all change and I was shuffled off into another room so I could be seen on the bed. Another blinking waste of time as when I got there eventually after having to pack up all my stuff and then try and drive the scooter being followed closely by Jane, pushing the drip stand she only needed me to roll up my trouser bottoms, something I could have done sat in the chair. And, you guessed it all the movement had caused the drip to stop . This resulted in about another ½ hour having to cyphen stuff off, pump some fluids in etc, some of which were extremely painful, all as you can guess causing me to get even more wound up by the minute. I had well and truly had enough now and just wanted to pull the bloody drip out and head off home. I find when I get like that, all stressed out my breathing, which was already bad before I had started, gets quite worse and I can find myself extremely short of breath. Ah well back to Gordon for some light hearted entertainment. I was just settling in when Merlin’s secretary arrived to inform me that his lordship will not be able to come down and see me today unless it was life threatening as he was actually in the process of writing up the case for the people in the finance department to fund my treatment for the GVHD in either Birmingham or here and that it needed to be within the next couple of hours. I guess at least he was trying to prove he was doing something about it, but as I was having a bad day my impression was why did he leave it till the last minute to do it?? Still I got to see the ever likeable Registrar, Chris who I haven’t seen for some time.

Finally after 4 ½ hours I managed to get out from there, considerably stressed out and looking forward to getting home and chilling out. As a result of this I fell asleep not long after getting home, managing to catch up I guess on some of the sleep I never got the night before.

Right I’m off to play around with Fedora for a while. Much less stressful.

See Ya!!

2007-05-17T22:07:00.000+01:00

Freedom Of Information

After waiting what seems like a lifetime for people like the Local Vale Of Glamorgan Council and the BBC and also the Powers that be at Heath Towers to respond to requests I have made for information under the “Freedom Of Information Act” they have all seemed to reply in the last few days interestingly enough as if they have all been in contact with one another.

I guess the most boring one was from the BBC who I had asked for information regarding what they do to ensure there are adequate provisions made for Disabled people to participate in audiences they may need in both their own and outside broadcast locations. In general their response was pretty predictable and basically told me nothing new and inspiring so was a bit of a waste really.

The next was to the Director responsible for Estate Management at Heath Towers regarding the appalling misuse of 4 of the Disabled Parking Bays to place 1 Porta-cabin and 3 Contractors Vehicles which just happen to be the 4 closest to the one and only entrance into the hospital as well. I finally received a written response from Chief Executive Mr Hugh Ross after numerous threatening emails which just pretty much said that although they agree that there is a huge amount of space available around the hospital grounds that could be used in order to fulfil Health And Safety Requirements they needed to be situated so close to the hospital that they would not have to cross the paths of the General Public. How bloody stupid is that?? They refused to email their response to me so I will have to get around to scanning it and then I will post it with the others.

Then there’s the Councils!!! I had initially written to Cardiff Council following my memorable trip into the town centre on the train the other month to complain about the dreadful paving conditions then followed it up with a Freedom Of Information request asking what they are doing to enforce the responsibilities on local Businesses to comply with the access responsibilities of the Disability Discrimination Act. Also I wanted to know what the figures were for cases of physical injury compensation claims as a result of the paving conditions in Cardiff and whether settled before or after a court hearing. You will see that it appears that they either didn’t read the question right or just don’t want to give me the information. As far as the access issue is concerned you will see that the respondent just goes on and on about the upcoming planning regulation change requiring businesses to supply a statement of their intention to supply access which does nothing to enforce the many many business who are flouting the law right now to do what is required.

So all in all a pretty pointless exercise although I will not let it drop just yet and have responded to each of them in my usual polite manner and requested yet again the information I first asked for although I don’t hold out much hope.

I also have the ongoing saga of the Disabled Facility Grant which is becoming more and more depressing each day but to be honest that is a whole blog on its own so I may get round to it on the weekend.

I’m off to see Merlin tomorrow and to have my Immunoglobulins. Sadly though I have an appointment at the Dental School there first to have two more teeth out which I really enjoy NOT!! I suppose the good thing is I might get to have a bit of a sleep whilst the Immunoglobulins are going through over about 3 hours, we’ll see!!

I will have to work out now how I can post their responses to the blog so you van see what rubbish they have been saying.

See Ya!!

2007-05-16T14:05:00.000+01:00

Another Day In My Life!!

Well as the heading suggests, it has been just another day in my life. I spent the day at “New Horizons” in Barry which is a Day Centre for Physically Disabled People. My social worker had mentioned it some time ago as she felt it might help to integrate with other people in a similar position to me, she must be brave letting me loose on the poor old people there, what was she thinking?? Anyway I went a few weeks ago with Judith to meet with some of the staff and have a general nose around to see what was on offer and after that it was suggested I visit for the day to get a real picture of things. I think the swaying decision mind you was when they mentioned that they provide good “Home Cooked” food and at such a low price too £1.85 including all the Coffee’s during the day too. I met up with Sue who I think I’m right in saying is the Manager who is lovely and she set about introducing me to everyone. I must just point out straight away though to those of you that have dropped in to see what it is all about, as I couldn’t miss an opportunity to publicise my blog could I? I am dreadful with remembering names so the chances I will mention you by such are pretty slim. This however will not last as everyone gets a mention sooner or later on here as the other poor devils will tell you. I felt like a little boy on his first day in high school, in a strange area where I didn’t know anyone, but all the staff and clients made me feel really welcome and spent lots of time getting to know me. I seemed to sort of hit it off with another guy called John who even I can manage to remember his name ha ha!! and spent a lot of time putting the world to rights which as you know is one of my favourite hobbies next to harassing MP’s and Consultants, Social Services, Local Councils etc etc etc. There was a number of activities on the menu for the day such as Relaxation Classes and Massage and a sort of Keep Fit and also Bingo in the afternoon but I decided that I would sort of just chill out and generally try to get to know people a little which was really useful. Dinner was gorgeous. I had a lovely piece of Ham and Mushroom Quiche and lots of nice salad made by the resident Nigella Lawson called Debbie and look forward to many a hearty meal to come in the future. The plan at the moment is for me to try and go one day a week although things may change I guess in the future depending on needs and available space I guess.

Health wise things are changing somewhat at the moment. My chest is generally behaving as badly as normal for me although it is being kept at bay by various pills and potions and some heavy will power but I am becoming increasingly worried about the skin problems. My legs are very rapidly getting a whole lot tighter and quite painful at times. There are a number of areas that are now very distinctive rings of tightness round them sort of like as if you put a 1 inch wide elastic band around your leg if you see what I mean. This is causing some pretty nasty swelling in my ankles especially my right foot somewhat caused by the water retention from taking the steroids. Both my legs are now so tight and the skin is so thin due to the GVHD that I am discovering more and more burst blister like things which eventually turn into ulcers and then pretty much do not heal because of the drug interactions yet again. It is getting to the point that I am going to be permanently in a wheelchair and not able to do even the smallest of walk, some 6ft which I have been managing to do until recently. The other main concern I have too is how long before my other enjoyment in life “Driving” is taken away from me too by this bloody illness. I will have no choice in the end because even I am not stupid enough to put other people’s lives let alone my own at risk by driving when I am not capable off doing so.

I am hopefully going to get some news on the Treatment of the GVHD when I go and see Merlin on Friday but then again I have learnt not to expect anything anymore that way I am not so disappointed when things don’t materialise. That’s sad having to think like that I know but after having so so so many let downs there is no other alternative.

Right I’m off to install this new copy of Fedora 6 to have a play around with. It’s all Peter’s fault for putting the thought in my mind. Okay fingers crossed.

See Ya!!

2007-05-12T08:23:00.000+01:00

Still Here!!

Yep, despite the lack of a blog for a few days I am still here and constantly on the lookout for valuable information to share with you which might get overlooked by the “Mass Media”. Things like, ”Why is it that the Leader of the Liberal democrats, Sir MENZIES Campbell, as in the huge High Street Shop with a similar name John Menzies, called anything but that. He is referred to as Ming or Minges or even as once heard Minging?? WHY???? Doesn’t he like his name or what??? Seems rather crazy to me, what do you think?

Here’s another good one too for all you Fellow Computer Nerds like myself who spend far too long sat in front of that pretty little screen. Where in the world will you find the fastest wireless network/internet connection? Well, I guess there are the obvious places like the home of the chip and I don’t mean the fried kind either although I have managed to do just that a few times over the years, Japan. Maybe it’s in Bill Gates; back yard, The United States although he seems to be not there very much these days choosing to spend most of it in far flung tropical destinations. Neither of which are remotely close. It is, of all places South Africa, still considered by many to be a somewhat 3^rd world country. The wireless technology known as HSDPA - High Speed Downlink Packet Access is in a place called Alexandra and it is somewhat a modern day version of Robin Hood, stealing from the rich to give to the poor. It is in a dreadfully poor district right next door to one of the wealthiest. Some bright young entrepreneur has tapped into this high speed connection and it is then beamed around the district by using things like “Tin Cantenna’s”, yep they are normal wireless antenna’s placed inside a Tin Can and used to condense the signal to a much more powerful beam which can be sent over further distances. It truly is an amazing thing to see and also the fact that all these poor children etc have this technology at their finger tips to maybe help give them the boost they need climb from poverty. The programme was made by the BBC “Click” team and you can find all the information on it HERE including the ability to download a podcast of the programme which is well worth a look. One other nerdy things too is that I noticed that they are using a Linux Operating System in the shape of “Ubuntu” which is an excellent FREE OS that is the closest to being able to knock Microsoft from it’s nice comfy extortionate perch.

They have the ability also to solve a few issues with lack of teachers. There is one teacher based in one location who then wirelessly teaches 3 different schools miles and miles apart in “Real Time”. Even including interactive White Boards in the schools etc it’s all pretty inspiring stuff.

I urge you to take a look at what good can come out of the Web/Internet etc instead of what seems to be a constant negative press that everyone is out to scam you and steal your identity and its all going to end in tears.

Okay I’m off to make the first Bacon Sarnie of the weekend and most definitely not the last one either.

See Ya!!

2007-05-06T10:21:00.000+01:00

PHEW!!

As the picture shows we went to a 21^st birthday party last night. It was for Tara number 1 daughter. It had been planned over the last year and was to be a surprise. She hates surprises which makes it all the more fun. It was all arranged with military precision and as their were so many people involved in getting it all together there was every likelihood that someone would slip up, not least of all as the party was in the local golf club where she works behind the bar. Judith did a splendid job of arranging it all and making sure all was going according to plan and I had the easy job of just keeping my mouth shut and not letting on, a pretty hard job for me as you all know, shutting up!!! After being chaperoned all day by a couple of her friends and after nagging at them “When are we going, when are we going????”, She thought that she along with a load of her friends were getting in a Limo and going to Swansea for a nights dancing and generally making fools of themselves and that they were all meeting up at the golf club and going from there. They managed to keep her away for an extra few minutes till a couple more arrived then they set off. When she arrived at the club she was immediately spotted and followed on the CCTV so we all knew the exact minute she would walk in. They had put up a load of Happy Anniversary banners outside and in the entrance to add to the surprise then in she came to a resounding “SURPRISE” from the waiting crowd. For once in her life she was actually lost for words and had to in fact pick her jaw up from the floor. I was greeted by “You sneaky bugger why didn’t you let on?” ha ha ha!! The place was packed to the rafters with family and friends and the odd drunk we dragged in off the street. It was nice to meet up with a lot of those that I haven’t seen for quite some time. My Favourite Cousin Jacqueline and Stuart and Little Jessica, though she will kill me for calling her little as she is nearly 18 after all. My little Sis Ruth and her hubby John were there too which for those of you that know her is always an experience. She has enough energy to power the national grid for a year, I don’t know where she gets it from. It was a shame that Mum and Dad and Adrian couldn’t make it as that would have been the icing on the cake, but Mum is nowhere near safe to be let loose on the general public yet!! Only kidding Mum, you know I loves you really!!! It was a great night and by the seem of it everyone had a good time not least of all Tara who seemed to get more lively as the night went on, maybe something to do with the amount of alcohol she was chucking down her throat. Not a bit like her Dad, I just fall asleep when I’ve had a drink. I surprised myself really and managed to stay nearly till the end. I was thinking that I might manage a couple of hours before I was knackered nut managed about 4 surprisingly. It was the first time we had left Puppy at home on his own too and were dreading what we were going to come home too. When we got in and called him he wasn’t anywhere to be seen or heard. Then I heard a thud, as he jumped of the bed upstairs. He has never been upstairs before as they must look like Mount Everest to him. He wouldn’t come down on his own though and Judith had to carry him down. That was it then, ull of life and demanding play for a couple of hours, pay back for leaving him alone I recon as all I wanted was to go to sleep. It looks like he had been hunting around everywhere as things were knocked off places and moved on the floor etc but no accidents though which is a good thing. So,making more of a fuss of him today to make up for it.

Judith has just gone over the club to give a hand in getting the place back to normal as every inch of wall was covered with either blown up photo’s or banners etc etc it did look superb. I am trying to put up a load of photo’s and some of Puppy too later today when I can work out the best way of doing it so by tomorrow they should be available, then I will have to grab some more from some of the others as, silly bugger here forgot to check the batteries and they run out after a couple of minutes.

Okay, PLAY TIME!!! Here Boy!!!!!

See Ya!!

2007-05-04T10:01:00.000+01:00

Morning All

Well we got round to taking little Puppy for a short back and sides and a real good pamper too. He waddled his way in, all dirty with long nails and scruffy hair. When we arrived back in about 3 hours or so he looked like a different dog all together. My first impression was that he looked like a little boy on his first day in junior school. Wearing his starched new uniform for the first time and hair all neatly trimmed it was a picture. The Charming lady at “Canine Clippers” In Penarth, where we had taken him said that he was the ideal customer. He just lie back and let them get on with it and enjoyed the experience. Since coming home he is a different dog. He’s even cuter if it’s possible and he knows it too by the way he’s strutting around. We are pleased too that we have had no sign at all that he is missing his brother although it is early days still and still might happen. One of the hardest things is to get him to eat as he is so used to being pushed out the way at feeding time that he just won’t eat a lot of the time, something that he needs really to put on some weight. Still, he will eat when he is hungry I guess.

I appear to still have this dodgy chest at the moment and yesterday I started to have a few sniffles too although in saying that I don’t have a runny nose this morning YET!! My rattle chest has been up and down. That sounds funny doesn’t it, of course my bloody chest will be going up and down, well I hope it is or else I’m in trouble. One moment it’s rattling like a rattle snake, threatening to chuck up all sorts of toxic stuff then it just seems to dry up the next. As usual no amount of attempting to clear it by coughing etc seems to make any difference either. It sort of sounds like I am snoring continually which can get annoying. At least my temperature is staying down so I am at least managing to stay out of Heath Towers for the time being. I noticed the other day too, that I haven’t been for stay at Heath Towers for about 5 ½ months now which is pretty damn amazing for me. I think before I started to have the Immunoglobulins around the time I left there the last time, the longest I had been “At Home” was around 2 months and sometimes, as you will remember it was more like 2 or 3 weeks between expeditions and that was after spending on average 3 weeks being poked and prodded and given all sorts of nasty stuff and that’s just the food!!!! Never mind the toxic concoctions that Merlin had given me, which incidentally all seemed to include Gnat’s Sweat, an acquired taste I must admit. Not a spot on the Bacon Sarnie’s though. Is this a sign that things are on the up? Well after having so many set backs in the past it is quite difficult to think along them lines and even if things are getting somewhat better in some departments there are so many things that all contribute to my overall failing health that the outlook is very much of the same with the usual up’s and down’s. This is my new life now and I had better get used to it, not that it will stop me fighting though.

Okay I’m off catch up on the shambles that is called the Welsh Assembly Elections. I guess it could be worse, I could be living in Scotland whose election results are in a right mess.

See Ya!!

2007-04-30T19:35:00.000+01:00

New Kid On The Block!!

We have a new addition again in the pet doggy department. Well that’s not completely accurate. We are now “Puppy’s” new home. Judith went first thing this morning to take them both back to the dogs home after yesterday’s troubles. I know we were all upset with having to let Puppy go back as we had all got really attached to him as his nature is so loveable you just can’t help it. Well after arriving there Ziggy was up to the same thing. Just inside, right there in the corridor he cocked his leg, great start. When Judith explained to them about what he had been like including the attack on me yesterday they were so apologetic. They told Judith that they had both been out to 3 other homes before us and every time they had brought them back for all the same reasons, the dominance and the peeing everywhere as well as the growling, snapping. They actually suggested that she bring back home Puppy, which up till now they were adamant that they had to be re homed together. She just couldn’t resist such a temptation, then again I wouldn’t have been able to either, one look from them eyes and I’m under his spell. One of the staff at the home is going to take Ziggy home with her to give him one more chance. She does have 3 other dogs however so I hope she knows what she’s letting herself in for. So Judith arrived back shortly afterwards and said she had managed to get another little dog. Then in walked Puppy, tail going 20 to the dozen, big grin on his face and already looking so much happier. I must say that I had never thought for one minute that I would see him again and it was a lovely surprise. He’s had loads of fuss’s and of course lots of playing with his favourite squeaky toy, the squeak drives him nuts, he seems to gain this boost of energy when it makes the noise and his tail wagging almost lifts him off the floor. I guess we may have a few problems with him missing Ziggy a little, although if this afternoon is anything to go by then we have nothing to worry about. It will be a novelty for him to have so many fusses’s as, like I said before, Ziggy used to stop him getting any if he could.

So in a lot of ways it is like having a new dog around the house, BUT BETTER!!

See Ya!!

2007-04-29T16:52:00.000+01:00

Sad News Unfortunately

As I said the other day we picked up what, at the time were 2 little bundles of joy, Ziggy and Puppy from the dogs home. Well right from the start there was no mistaking who the dominant one was as Ziggy was continually trying to stop Puppy getting any attention from all of us. He would use his added build to get in the way and on top of this he was constantly trying to mount poor old Puppy. He has been trying his best also to pee over everything that doesn’t move around the house despite the door constantly being open for him to get out. Sort a scent marking thing. We have been trying to stop him from being such a bully including a rolled up newspaper and a sharp hit with it whenever he does these things but he is one stubborn bugger and it has had no effect at all. Well this morning he was mounting Puppy and I gave him a tap with the shoehorn I had to hand on him bottom and he just ignored me and carried so I gave him another one and with that he just lunged at me biting and pawing me and growling relentlessly. In the melee I stumbled forward onto the floor from my chair where I had been perched on the edge and he just kept coming and coming at me despite me probably getting in a few punches that would have floored Mike Tyson to try and get him away from. Thankfully Judith was only out the back garden and came running when I shouted for her help. He was even going for her and she had to use one of my walking sticks to manoeuvre him out the garden and then shut the door. In the meantime because of all the stress etc my heart was racing like a F1 Engine and I was rather seriously struggling for breath. Judith came back and immediately got my oxygen out to help. I was very very close to the edge where just that little bit worse and you fall into the realms of panicking and loosing control. It probably took me around an hour or so to get my breathing back into control.

The upshot and the bad news I guess is that there is no way they can stay here any longer and Judith will be returning them to the home tomorrow morning. I will not feel safe around him any more. What if Judith wasn’t around I dread to think what would have happened. He is uncontrollable. It is a real shame as Puppy is such a loveable character. Happy, Playful, always wagging his tail with excitement, always pleased to see you and Ziggy is the complete opposite. I can’t believe that whoever had them before they ended up in the dogs home, for 8 years just let this behaviour go on un challenged. The behaviour is ingrained in him now and I guess he will never change.

So with a lot of regret they are going. Judith will have a look when she is there to see if there is another suitable little pooch. Gluten for punishment I know!!

I think I am on the verge of a looming chest infection too. Some of the usual signs are starting, increased coughing, slight sore throat, more wetter cough than the usual dry one. My temperature is just fine though which is a tell tale sign that all is not well. I may get an appointment at the GPs early in the week, but will try and get hold of Merlin or one of his minions more likely to get some advice and maybe get them to speak to the GP with regards to medication etc as I know what will happen, my GP will just send me up the hospital as they are somewhat scared of giving me any new medication as Merlin is the one who has had complete control over that all along. In fact I have only been to the GP a couple of times and that’s mainly for repeat prescription.

Okay I’d better go take my temp again as I’m feeling a little clammy and warm.

See Ya!!

2007-04-28T10:31:00.000+01:00

The Week That Was!!

So what’s been happening this week all together, I don’t hear you ask? Well it’s tough I’m gonna tell you whether you want to listen or not.

The week started off just great. Remember I had said earlier about being given 6hrs care at home? Well we had employed a friend of ours to come and do the work etc. All was going fine for the first 2 weeks until she turned up on Monday only to quit and walk out. She had some emotional issues regarding my illness that she wasn’t comfortable with apparently. So it’s back to square one there. We have managed to employ another Personal Assistant who also is a friend and she starts next Monday, so hopefully this will work out a little better this time.

Tuesday was quite a busy day in all although I never went out of the house till about 6.30pm. The re-enablement team came back for a 3 month assessment in the morning. They could see that all is not well in the health and mobility department, so much so that I am in a worse condition than before they started working with me 3 months ago. They left, a lot more depressed than before they cam that’s for sure. It was nice to see them again though. They are hopefully going to see if their OT can do anything about this grant etc I have applied for as well as all the other bits and pieces like the Door Intercom, front ramp etc… We then had a visit from the newly employed Welfare Rights Officer from George Thomas Hospice to try and sort out all the problems with the benefits etc. Although it was a useful visit it was a bit of a waste for him. When we had arranged this some 2 weeks ago all was not well with the benefits. We were waiting on the Social Service and the Local Council to get their acts together and make a decision but on Friday last week both of these decided that we were entitled to the benefits and paid up at last so he wasn’t needed so much. Still at least we know now that we are getting everything we are entitled too at the moment. The local Labour Councillor, John Thomas came in the evening to have a look and discuss the complete lack of sloping curbs where I live. I had hoped to be able to get around on my scooter with him but of all days it decided to blinking rain, so we had to go in my car. He marked down all the places I had pointed out to him and others I hadn’t also as we made our way around. We have some problems though as because the estate is Ex-RAF and we have a management committee for which we pay a maintenance charge for stuff like lighting and grass cutting etc, not all of the roads and paths have been adopted by the council. There are a number of places which just happen to be at Key crossing areas where the slope one side is the responsibility of the Council and the opposite side is the Estate Managements responsibility which is going to be difficult. Although meeting him was of some good though as he is also one of the many people I had contacted hopefully to help with the OT assessment I’m trying to get. He could see first hand my condition etc, so much so that I think I had scarred him to death with my breathing difficulties in getting out to the car etc. He did say that he will get on to the people who can chase things up to pull their finger out.

Nearly there honestly. Wednesday was a trip to Heath Towers to sort out my dodgy Hearing Aid. It was pretty uneventful really. I turned up ½ hour early, sat in the waiting room till 5 mins after my appointment time, went into his room where he gave me the new pre programmed one then I was off home. All over in 20 seconds. I wish all my appointments were like that. Sometimes just getting blood from me can take longer than the overall time it took from when I left home to when I got back.

Wednesday as well, as you know we went and picked up the loveable pooches from the dogs home. They’re settling in great. We’ve managed to get them booked in for a pamper session at a beauty parlour nearby next week. They’re getting the works done. Shampoo, conditioner, hair and nails clipped, glands emptied, ears cleaned and probably will come out with neat little bows tied around their necks too. The week after though, they are having their bits done and I have this impression that they won’t like me as much after that, not that I blame them.

Apart from a trip into the local shopping centre for a few odds and ends yesterday that was it this week really. The Immunoglobulins are hopefully doing their job and keeping infections at bay although I haven’t felt quite right for a few days. My chest is somewhat wheezy and a bit phlegmy and I am feeling a lot more tired than usual. Both Judith and Tara have had colds for a while so I think I most probably have picked it up from them. I really must try and make sure is doesn’t get any worse as it’s Tara’s 21^st birthday on the 5^th May and she’ll kill me if I’m in hospital again as I was for her 18^th birthday.

So it’s no visitors, no going out the door, no eating in case I have something dodgy……..NAH!!!! Boring bugger!! Life’s Too Short.

See Ya!!

2007-04-26T21:20:00.000+01:00

My New Furry Friends

Just a short blog today, to introduce a couple of new members of the Jonny5 Household. I have wanted a small dog for a while now as some company really more than anything and when Judith said the other day about maybe getting one I didn't hang around. I was straight on the phone to the local Dogs rescue centre in Cardiff to see what they had there at the moment. They told me about these 2 little Shit-Tzu's that were up for re homing. They are brothers and around 8 yrs old and as they had never been apart had to go together. Well they brought them out for a little walk around etc and we just all fell in love i guess, it must have been those sweet innocent eyes, I was fluttering!! So £80 lighter and 2 dogs heavier we headed off home. They are such characters and are very much chalk and chese. Lots of fun and games ahead i recon!!

So i have to get back to throwing the ball for them although only the smallest one "Puppy" chases it and his bigger brother "Ziggy" just stands around and watches.

I'll try and blog tommorow on all the things happening this week although not a lot has.

See Ya!!

2007-04-23T20:53:00.000+01:00

Singing In The Rain!!

Well it took a long time coming. It’s been chucking down the wet stuff all day today. I can’t actually remember when it rained last, it must have been months ago. Although I don’t totally agree with the probably, soon to be ousted Leader Of The Welsh Assembly, Rhodri Morgan AM, he did have a point in what he said about there being advantages to Global Warming. Purely from a selfish point of view, health wise there is no doubt in my mind that the recent period of warmer weather and lack of rain has gone towards keeping me out of Heath Towers. I am yet to be convinced of the whole Global Warming /Ozone/CFC Gas thing all together. There is some pretty good evidence of the fact that the Temperature has always fluctuated throughout the lifetime of the planet and none of it really is in connection to mans abuse of it so to speak. Anyway that’s a blog for another day I think.

I’ve been thinking for a while now that I really wish I could read. What I mean is actually sit down and read say, a novel or a biography etc etc. It’s something I have never been able to do for a number of reasons I guess. Lack of concentration etc. I have tried al ways to do it but it always seems that I am forcing myself to do it and as a result it just doesn’t sink in. I could read a chapter some time just a few versus and I could not describe what I’ve just read. I think you will probably agree there is nothing wrong with my imagination after reading some of the drivel on here so it’s not that. On occasion I have really wanted to read something and all starts of well. After about 10-15 pages my interest just dries up and no matter how many more attempts I make I never get back into it. I feel at times that I have missed out on the whole atmosphere and stimulation etc that reading can give you as well as all the other reasons for reading such material. I have been toying with the idea for a short while about maybe trying out a Reading Book, which although not the same, is somewhere in between where I am and actually reading a book and if I do actually get round to it I’ll let you know.

Okay, health wise all is about the same I suppose. Everything that even as short a time as a month ago I was managing to do, such as washing, dressing, walking to the toilet or kitchen or even to the front door is now either not possible, or at the very least extremely difficult and requiring assistance to do. It is not looking too good right now and it’s at the stage where I am more and more not even attempting to do some things as I know that they will either be impossible, or cause me so much discomfort such as severe shortness of breath bordering on panic. There is no apparent reason for the downfall over the last month or so. It might be down to reducing the steroids too much. The other idea being banded around is that the GVHD is progressing a little as it is now affecting areas of the skin, previously untouched. Hopefully Merlin will manage to get the funding sorted out for the Extracorporeal Therapy and the OT department will pull their finger out and get this extension built so that I can bath and maybe even sleep too both of which are now dim and distant thoughts of the feelings both bring. There I go dreaming again, I really must stop that!!

See Ya!!

2007-04-21T08:18:00.000+01:00

Boccia Or Bust!!

I dragged Judith out yesterday for a few hours, screaming and kicking as usual. I do wish she didn’t do that as it’s so embarrassing when we’re out. It Was suggested by my Social Worker a while ago that I might like to try out some of the facilities on offer at the nearest local, some 10 miles away, Day centre called “New Horizons” so yesterday we went and did just that. It is set in this rather nice Grade 2 Listed Building which used to be an old Teacher Training College. It brought back so many memories of the schools I had been to when growing up with the Parquet Floor throughout and that distinctive smell. You know the one, it’s kind of like a medicinal, almost Detol like odour. We had a good long chat with the Day Centre Manager Sue, although she, like everyone else will soon have to change her name so she is more in keeping with the rest of the characters on the blog, I’m sorry!! I guess if I hadn’t kept opening my mouth she could have told us all about whets on offer etc in about 20 minutes but you know what I’m like, give me an audience and I’m away, blabbing out my life story. If you read this Sue I am sorry for inflicting myself on you like that!! She took us on a tour of the building then to see first hand what there was to do as well as meet up with some of the other “Service Users” as they refer to the other Crips like myself. They all seemed like a right jolly, easy going bunch of people and right up my street. They have a load on offer too. Things such as, Exercise classes, good for the mobility, relaxation, much needed after the exercise classes ha ha!! A whole list of alternative treatment sort of like, reflexology, massage etc. There is what most people would think of things like craft making, Bingo and they do have trips out for lunch etc. They also take part in a sport called “Boccia”, very similar to the French game Boules, and they are very good at it by the look of it, having won various competitions. I can remember playing this game probably around 14=15 years ago when I was supporting people with learning difficulties in Cardiff as they used to play in a local leisure centre. The sport was very young then and the very little I remember of it was that it was more of a therapy/social thing than a competitive sport although it was fun. I will look forward to having a go at this, who knows I might just be good enough to take place in the Olympics one day. Isn’t Boccia an Olympic sport then?? I’m heading back there in a fortnight for the day hopefully to try out a bit more so I will have to brush up on my Boccia Skills.

I think there are a number of things I might like to do there and not just eat the food as some might think, as they have a Bistro there and the food is pretty good and cheap too so I’ve been told. I’ll have to convince the chef to try out the delights of the various Bacon Sarnie concoctions that have discussed on here and Peters Blog too lately. Then there are the Chinese dishes and the Suet Puddings, not to mention the Faggots and Liver & Bacon etc. I must stop this as its no good for my waistline. Oh yes!!! Did I tell you about being weighed when I went to see Merlin the other day?? Well, they had to weigh me as I hadn’t been weighed since I came out of Heath Towers the last time 5 months and 3 days ago but who’s counting? I was 12 ½ stone then. Well as I’ve been feeling a little, say, and plump of late, I thought that I had maybe put on a few pounds or so. When I got onto the scales the moan of displeasure that came from them should have told me that all was not well. I now weigh……………………..wait for it…………………….. 14 stone 13 pounds. Nooooooooooooooooooooooooooooooooooooo!!!!!!!!!!!!!!!!!!!!!! Fat Git!!! I guess it’s gilled bacon from now on and also no more Chinese. We will see how long that lasts, I don’t hold out much hope. At least I can still have the odd packet or 3 of my favourite snack of the moment, Quavers as they are surprisingly low in calories, around 180 a packet I think. I could always try and give Mum some of my excess as she is still loosing lots of weight as she’s not eating much at all, but at least she’s home and not having to face the Hospital Slop they serve up. Dads tempting her with Cream Scones and stuff too, naughty but nice, and like Peter she is on the Supplements too, to at least stop the loss.

Right then that’s enough for now. Time to get up and watch some more cookery programmes just to wind me up!!

See Ya!!

2007-04-17T20:54:00.000+01:00

Visit With Merlin Update.

Just got back from visiting Merlin at Heath Towers and what a day it was too. After arriving the usual 15 mins or so early it was looking good. I was called almost immediately to have my blood sucked for all the usual routine stuff. This all sounds good doesn’t it, but when you think what happened on Friday at the day unit you will understand why I was rather apprehensive. Justine shied away from taking it thank god as she is quite new at doing it so I guess has less chance of hitting the bulls eye first time. She handed over that responsibility to the steady handed Charlotte. She went straight for it, no hanging about for niceties. She ended up having to wiggle it around, always a rather unpleasant experience, but did manage to eventually find the old geezer, just!! By the time I got back out into the waiting area it was looking rather busy. The receptionist was giving out the usual message that “He is running a little behind today”. He’s always bloody running behind, it’s in his genes I recon. Well finally he called me in and only 1hour 45mins late too, wow that’s a record. He must have caught up a little!! He had a couple of young students, in fact VERY young students with him. They looked like they were just out of nappies, literally!! Well after all the usual poking and prodding and questioning etc etc which I wont bore you with as you’ve heard them all before, it was onto the nitty gritty, well what I would call the nitty gritty anyhow. Both myself and Judith, as she had come in with me as usual, didn’t hold back in letting him know that we were not at all happy with the level of attention and care I have been getting with regards to the Extracorporeal Therapy the he said I would be having back in January. Predictably he did say that it was in a lot of ways out of his hands and that it was yet again down to the various people who hold the purse strings. He informed us that they were in the middle of changing over the way that care is funded and that this problem should not occur again in the future, you’ll forgive me if I don’t have as much faith as you?? He was due to meet with the bankers so to speak on Friday this week anyway for a general chat but did give us his assurance that as this was now becoming a rather serious matter that he would contact them directly beforehand to discuss my case personally as well as pre warn them in preparation for Friday. A somewhat heated and in some instances comical debate took place too whereby Judith was stating hers and mine too for that matter impression that this is just another of the “If we left them wait long enough they might just die, so we won’t have to pay then” situations, to which Merlin feebly attempted to reassure us that this was not the case. There is no doubt nothing written down but the general feeling and verbal instruction passed between the people who have control over such things is very much along this wavelength. His face was a picture when I ended up telling him straight that it has now got to the point that I have given up and have no fight left. I am now on anti-depressants, I can sleep properly, my skin is getting rapidly worse with my lungs paying the price too, and need I go on?? He was gob smacked. First time I have seen him speechless I recon. Well this is the real life me, Merlin, not the same old happy go lucky, not a care in the world guy you have known all this time. Those days are gone, it is time for you to start fighting my corner again and getting things done. He did say too that he would contact the Chiropodist and the Eye Consultant directly as they have both been messing me around cancelling appointments etc, going on months now.

Well after all that, the usual 45 mins wait in Pharmacy for the usual potions seemed stress free in comparison. Back to the car only to find they have done their usual trick and left off one item, thankfully it was just the shampoo for the dodgy scalp which I can wait for. Blinking incompetent buggers!!! Grrrrrrrr!!!!!!!

I did manage to console myself by stopping off at our favourite Chinese Restaurant to pick up a take away on our way home as we were so late. It will have to be the last for a while though I recon as I had the shocking news today that I have put on a whopping 2 ½ stone since I got out of hospital 5 months ago. I was now banging on the door of 15 stone, well 14 stone 13 to be precise. So its lettuce leaves and beans and pulses for me for a while, god help anyone standing down wind though!!

See Ya!!

2007-04-15T08:50:00.000+01:00

Top –Up Successful!!

6 weeks has finally come around and time for the usual dose of Immunoglobulins at Heath Towers. However much I don’t particularly like this visit, mainly because you have to sit connected up to the Drip Dragon for 3-4 hours. I have noticed the last few months that around a week to 10 days before the Immunoglobulins are due I start to feel a little run down and my chest is a little worse and quite often a runny hose too, so have decided to have the next dose in 5 weeks time and not 6. Merlin doesn’t know this yet, unless he reads this I suppose, but I will be seeing him on Tuesday anyway. He has in the past said I could have them every week if need be so there shouldn’t be a problem.

Okay then the visit…. Arriving just a little early for my appointment I was greeted by the lovely receptionist Hazel in her new little office. They have changed around the layout, not for the better I think really, as she is now somewhat cut off from the rest of the day unit which is very much open plan. The delightful Jane was going to be responsible for chucking the obligatory darts at me today, god help her, AND ME!! As usual there was no room at the inn and ended up slumming it in the old treatment room where you have to sit next to rotten corpses and other skeletons of past patients who went in and were never seen again. The skull & crossbones on the door and the huge vulture sat in the corner should have put me off I guess, but I took my chances. Right, sitting comfy??? Ummm NO!! Time for Jane to get some target practice. So, arrow in hand she picks out the only feeble vein stupid enough to poke up, aims then fires,,OUCHHHHHH!!!!! Bloody missed it, so a little wiggling around and then the inevitable happened, she popped it, so a nice huge bruise to look forward to tomorrow. Okay 2^nd time lucky. After a damn good beating on my hand, Jeeeez she’s got a heavy hand, I pity her kids when they were growing up being smacked by her, she aimed, shot and………….BLOODY MISSED AGAIN!! Another bruise after she popped that one too. This was beginning to irritate now as I don’t like them at the best of times but I’m not too bad if they get it in first or even second time. After 4 more attempts she managed to get one in the back of my hand. Phew!!! After connecting me up to the Drip Dragon we set about trying to get me a little more comfortable if that was possible. The odd pillow ruffle here and there etc. Whilst doing this I caught something out the corner of my eye and had to look twice. Arggg there was blood squirting out my wrist, where the Venflon, that sat there on the bed next to me, used to be. I can tell you I used some rather strong language to express me feelings at that time. Right then I thought. This is your last chance. If you don’t get one in now I am going to ask for a change of archer. So a quick wipe of the specs, and crouched down ready for the kill. I could see the outright concentration on her face. There were beads of sweat running off it and dripping down onto the target zone but it didn’t phase her in the slightest. She waited for exactly the right moment then let go her arrow. We were both praying for success as it hurtled through the air. Success it in, well sort of anyway. It was the most awkward place right in the crook of my elbow and it would only go in halfway until it hit a valve and refused to go any further. She flushed it to make sure all was okay and then started the first of the 3 bottles I was having. Because of the dodgy situation the Venflon was in I had strict orders to absolutely NOT MOVE MY ARM!!!!! What, you think I would move it and risk having to let you try and stick another arrow in me somewhere else?? After all the hassle getting going the rest of the time went off without a hitch, thankfully and 4 hours later we were off home.

So, back home and time to read through the latest correspondence from Mr Smith. Yes he has actually written to me eventually. I will have to let you know what he said later when I’ve taken it in.

Some other good news too. Mum’s home at last. She is not too good still as in she is still getting out of breath on very little exertion etc but her blood counts are all stable now. She will need to have some physio etc at home to build up some strength and lots of sit ups and press ups which I know she will love doing. “No Pain, No Gain Mother”!!!

See Ya!!

2007-04-12T09:26:00.000+01:00

Why should I have to??

Why is it that I have to continually badger and harass people to even attempt to get anything done, I keep asking myself. I have as you know been trying to get this Grant for what I think is critically needed alterations to the house that will enable me to actually go to bed and most just as importantly, have a Bath or Shower. Due to my worsening condition I haven’t been able to get upstairs to where the Bedroom and Bathroom are for probably 8-9 months now and as a result of this it is and has been, causing so much stress and pressure not just on me alone but also on my relationships with my Judith and Tara. Just the whole psychological effect of not feeling clean at any time, although I quickly add that I am strip washing every day, but this isn’t the same is it?, is playing havoc with what little amount of brain cells I have remaining.

It seems all I get from people when I do eventually get to either speak to them or they reply to a letter or Email etc, or in the case of Mr Smith MP, NOT REPLY!!! Is the well practiced automated response that “We are looking into this matter and will let you know when we have heard anything”. My interpretation of this phrase would be something like, “BULLSH*T, BULLSH*T, BULLSH*T, BULLSH*T”, etc etc , I think you get the idea. Then it’s the 2-3 week wait or more in so many cases before you contact them again to pretty much be told a completely identical reply. This just goes on and on and on and on and on and on and on and on and on and on, Jeeez I sound like Mrs Doyle, “Do you want a cup of tea?”.

There is another phenomena that never fails to absolutely irritate me, that’s is apart from “Patientline”, which talking about them day light highwaymen you should all head off to visit, after finishing reading this of course, Peters new Blog called “PaytientCrime” on all things “Patientline” as well as anything else that causes hassle for patients/families etc. It will no doubt attract a lively debate as has his original post and comments on the subject which you can read on the new blog or on his “Peters Hospital Diary” blog. Okay lets get back to the rant shall we?? Oh yes “The Phenomena”!! It is The Benefits Agency, in all its guises. Whether it is The Benefit Enquiry Line, The Income Support Helpline, and The Carer’s Allowance Help centre etc etc . THE WHOLE BLOODY LOT OF THEM!!! I tried ringing yesterday to chase up a claim which has been ongoing since January now. They have already managed to conveniently lose one of my forms in the meantime as well as all the other hassle they are causing. I started to ring at 9.30am and finally after around 20 phone calls or so and lots of banging my head against the wall I got to the person I needed to speak to who was dealing with my claim at 12.45pm. What has been happening is that locally as in Wales I think it is, they have been moving responsibility for assessing and paying out benefits between one place and another and are happily using this excuse as to why things are taking their time. I know just from various people who have rang to confirm one detail or another on the forms that my actual application has been in offices in, Bridgend, Barry, Penarth, Cardiff, Aberystwyth and Newport and that’s just the ones I know about. The poor thing must be knackered by now. So when I asked the million dollar question, “What’s Happening With My Claim?” I sat there waiting for the dimwit on the other end of the phone to find the relevant response card entitled, “The Bullsh*t Answer” and recite off his part with the usual gusto. To my surprise he didn’t actually do this, instead he told me that all they have been waiting for is a phone number for Judith’s past employer as I never put one on the form and as I had spelt the company name ever so lightly wrong they had difficulties finding the number on the internet too. A BLOODY PHONE NUMBER!!!!! Is that all you want a lousy phone number. Why didn’t you ring and ask like all the other drones who have hassled me for information. He hadn’t even felt the need to write to me requesting the number either, so until I would have eventually rang they wouldn’t have done anything about it, which would have meant having to start the whole process over again. In about 2 mins flat I gave him the number which I got from the internet by changing the slight spelling mistake, (all it was, was instead of it being Synergy I had put Synergie) They were the only business in the area with any name that even resembles it in all the searches I did. Well, he gave me the usual assurances that the claim will now be processed, which will probably mean being sent to yet another department and area, “I hear it’s nice in Rhyl this time of year”. I am however not as optimistic as he is that it should all be straightforward now. Well for those of you mere “Normal people” and the odd few “Crips” like me, you will now, through bitter experience haw the whole system works or rather, like Mr Smith MP, Doesn’t Work!!!!!

Oppps!!! That’s 2 digs at the completely useless, hopeless, ignorant, pointless Mr Smith. I really must control myself!!

See Ya!!

2007-04-10T23:41:00.000+01:00

Unusual Artists

I was watching a re run of a Billy Connolly series last night where he travels around the world. It was based around the north of England. One of the things he came across was an exhibition of artwork done by Miners and Ex-Miners in Northumberland. They were somewhat primitive although depicted the scenes of the era with some accuracy and were full of feeling and to be honest very well painted/drawn too. I know my father in law Ray, who was a Hard Working Steel Worker as well as a part Time Roofer all his life till he retired a few years back had taken up painting and sketching etc quite a few years ago and to be honest some of his work is pretty amazingly executed. I think what amazes me most is the thought of the typical shovel handed burly manual worker, fag in one hand and pint of ale in the other even attempting to do such a thing, but in reality I guess art in general is all about interpreting and putting to for example canvas your thoughts, experiences of which I guess this generation had experienced first hand. I will have to convince Ray to let me publish a few of his gems as an example as he is even after all these years still a bit embarrassed about it although he is getting better.

Health wise my blinking chest has decided it is going to play up again. I seem to be coughing a bit more than usual and it is a little tight at times resulting in having to use the oxygen a little more. I’ve put a lot down to needing to have the Immunoglobulins which are due this Friday thankfully. The skin is still extremely tight too and in my opinion is definitely not getting any better despite Merlin thinking it is. I hope to try and get some sort of movement on getting this new treatment started when I see him next week as it seems to just be going on and on now.

On the complaining front, due to the bank holiday and the fact that the local council need 1 more day off than anyone else, they are not back in work till tomorrow so nothing to report there although I am hoping to chase them all up at the crack of dawn of course.

Okay off to catch up on some well needed shut eye,

See Ya!!

2007-04-09T09:53:00.000+01:00

The Easter Lull!!

Another day of twiddling with the blog layout and things I recon today. I’ve actually got a quiet week as in the only appointment I have is for the Immunoglobulins on Friday which are about needed now. It’s strange that it always seems about a week before they are due, (I have them every 6 weeks) I start to feel a little run down and not myself. It had been discussed in the past about playing around with the timings of them so I think I will mention it to Merlin when I see him either on Friday or next Tuesday when I am due to see him next.

It wouldn’t be a proper blog at the moment unless the good old Patientscam got a mention. I don’t like this idea that Patientline has on its web site referring to services offered, and that’s Electronic Patient Records being accessible from the bedside unit. There is no way that this will be secure at all and open to widespread abuse. What if a doctor just walks off and leaves your details on the screen for all to see. Once they are in there it will be easy to gain all sorts of information. Being able to put up surveys is a good idea though. Maybe they could take the lead and put up a “What do you think of the Patientline service?” as a starting point. Now that really would be fun!!!! Check out the ensuing debate taking place on Peter's Blog at the moment on the whole Patientline issue, which even has contributions from some Poor Employee’s of theirs.

Did anyone listen to The Five Live Report: Cancer Care Unplugged will be broadcast on BBC Radio Five Live at 1100 BST on Sunday, 8 April.

Another couple of alarming stories broke this w/e all in the cause of cutting waiting lists for cancer patients. You will find the stories Here and Here and you can also listen to an interview with an Oncology Consultant in Hull, explaining the reasons he is having to give patients totally un-needed treatment just so that they all fall into the nice and neat 1 month waiting list requirement. The other story is all about hugely expensive radiotherapy equipment not being used for around a year after being installed new in some instances. There was an interesting discussion about the state of cancer treatments which I did miss, yesterday on Julian Worrickers’ Radio 5 Live programme. It was called Cancer Care Unplugged and follows on from an in depth look into the treatment of cancer patients by reporter, Simon Cox. You can listen to it HERE and click where it says Listen Again: Sundays Show. The item starts at about 1hr 5 mins if you want to skip right too it although the whole show was worth a listen too.

Okay then I’m off to see what the day has in store for me. Lots of nice tasty grub I hope!!

See Ya!!

2007-04-07T16:57:00.000+01:00

All Change!!

Hiya. You might have noticed that the blog has been transformed into its new guise. I decided on the change after being inspired by fellow Blogger Peter who has changed both his and Elspeth’s designs recently over to very Spring like themes they are nice. You can find Peters HERE and Elspeth’s HERE. It will no doubt change further over the next few days/weeks as I play around a bit more so bear with me if you encounter any problems. I have tried to brighten it up a little too. To match the current heat wave we are having. Judith sat out the garden for a while yesterday afternoon and she actually got Sunburnt, ha ha ha!!!! IN APRIL!!!! Check out the links to some of the videos on Google and You Tube. I’ve tried to make them all a bit amusing etc but the odd dodgy one is sure to appear eventually as it is out of my control.

Okay then I’d better get on with some more twiddling while I’m still awake as my eye lids are getting heavier by the second and don’t hold much hope of fighting it for much longer.

See Ya!!

p.s I just noticed something really funny. I use Microsoft Word to write my blogs and then copy and paste them to the Blog server. I just spell checked this before sending it and it queried Google and it wasn’t in the dictionary ha ha ha!!!

2007-04-06T10:34:00.000+01:00

Chocoholic season is upon us yet again. I prefer the little Easter chicks myself or rather what they lay and what they become after a bit of fattening up, it has to be Free range of course as I have found this is one particular food product where there is significant differences in flavour etc between Battery and Free Range chickens. I tend to go for the Corn Fed variety. They can look a bit like they are need of a Liver Transplant with their bright Yellow skin but the intensified flavour is something else.

Okay on to business. As I’ve mentioned a number of times on the blog in the past I could not be accused of singing “Patientline’s” praises by no stretch of the imagination. They’ve made it into the news again this week and I think as it is a bit of a quiet time at the moment, somewhat due to Parliament having a rest, and I’ll come onto that subject later, it was covered by virtually every news channel all day and night. I know that this is a subject close to many peoples heart and also too close to many people’s wallets. Peter had written a rather good, straight to the point explanation of these conmen that masquerade as Patientline. You can get straight to it HERE or read the blog that he had written on this same subject the other day as the news was breaking HERE. He really does have his finger on the pulse, either that or he’s got “An Insider” leaking info?? In a nutshell they have decided that they are not ripping us off enough and as such have raised the cost of calls for Patients to Ring Out from 10p min (min 20p connection charge) to a whopping 26p min (min 20p connection charge) a mere 160% increase. They are mind you, being very generous and lowering the cost of their super efficient??? TV/Radio service from £3.50 per day to £2.90 per day, but it looks like the over 65’s, who would I’m sure mount up to a pretty large number are no longer entitled to a Half Price offer. The excuse they have used for the increases is that they have never made a profit in all the years of running the service and need to recoup their cost, (at the expense of vulnerable people) their Radio Service is actually Free although you do need to phone to activate it, which is also free for now but who knows what the future holds there, so if you were to purchase the TV which has around 8-10 channels although does change depending where in the country you are, it will cost you a staggering £78 per month. If you compare this to probably the most expensive home TV provider SKY TV which charge for their Full Package (Sky World) inc endless movie channels and sports channels etc etc and of course the terrestrial channels too, in comparison a meagre £43.50 (£34.50 Cheaper) you can see why people get so wound up by this. I guess for me what with the laptop and mobile they won’t be having any more of my money, not that that stops me from being outraged though.

You’ll be glad to know too that my friendly MP was again in the area this last week or so and I have the many (3) pictures from the Local Free paper to prove it. It did come as no surprise though when I read what he was actually here for. He was handing out Veteran’s Badges to a few local Ex-Servicemen in recognition of their gallant service for the country. I strongly agree that these men did a great job and I owe them all a debt of gratitude but sadly it just adds more fuel to the fire regarding John Smith and the way that he appears to be very blinkered the issues he will try and deal with. If it is to do with anything like RAF St Athan or servicemen or Flying in general, although he has spoken a few times on Deep Vein Thrombosis, which was though in connection to flying, then he will bend over backwards to help but anything else and he’s not interested. I emailed the other day to get an update on what he was doing regarding my problem with the council and I know he, or at least someone from his office, read it 10 minutes later but sadly no reply again and what with the bank holiday I won’t get one till at least Tues, if at all. This last week alone he could have attended the Local Citizen Awards recognising Local people for their hard UNPAID work in the community or maybe the opening of the new Heritage Centre and that’s just in the very immediate surrounding area let alone the rest of his constituency. I wonder if he will show his face when they come around canvassing for the upcoming Welsh Assembly Elections?? I do hope so!!!

Jeeeeez all this ranting is making me thirsty. I’m going for a cuppa and quite possibly I must just indulge in a light snack of bacon, bread, butter and mushrooms while I’m at it.

See Ya!!

2007-03-30T20:22:00.000+01:00

Hiya guys. I want to start this posting off by both apologising and also asking for your patience. I know this sounds a rather strange start but then again they don’t come much stranger than me as you all know, but I hope all will become a little clearer as it progresses.

Recently, say around the last 3 or 4 weeks it seems to be, although the feelings have reared their head over the last 3 years or so, I have found myself becoming more and more depressed and generally upset all the time. I have written about the issues I have been having with the Local Council and Social Services etc I know and it would seem by the general overtones of the posts that I am quite enjoying the ride. This is quite so in some respect however the underlying problem is that “Why should I bloody have to keep fighting for these things and also, WHY ME”? I guess there is a limit to how much fight someone has “in them” so to speak and I have probably used up more than I had in the first place. The upsetting part of it is that I seem to constantly be banging my head against a brick wall. What with the, completely ignoring you even exist, not returning Emails/letters, blaming other people, condescending shop keepers who are oblivious to how it is they are discriminating against disabled people by making them sit outside and shout in and beg for some assistance like your unclean or something, you get the picture, I suppose it has all come to a head recently. I don’t want you to think that I’m on the verge of ending it all, as you wouldn’t be further from the truth, but it is all getting a bit too much to deal with in one go and I need a rest or at least for things to start going my way for a change. Is it too much to ask for people to be honest and upfront and also not pass the buck.

Let me tell you this example. On the estate where I live there is an estate management committee which we all contribute too as being Ex-Military accommodation not all roads and paths etc are covered by the Council and obviously require maintenance etc etc, Anyhow, the I contacted the Maintenance Company as they have retained a seat on the board as part of the arrangement, asking if they could Email me the list of Directors (all Local Residents) and addresses as I wished to make contact with them regarding an issue on the estate. It was to do with the state of the pavements etc etc although I did not tell them that. They answered the Email within 15 Mins of me sending it as I have a reply to prove it. “IT TOOK THEM A BLOODY WEEK TO SEND IT TO ME”. I got it today a week later. Now I don’t think it would even take 5 minutes to get this information and it is not subject to any data protection laws, so why make it so frustrating for me?? I could have, I guess asked any of the neighbours for there addresses and most of them would know but that is besides the point as I asked them and they just messed me around. “BLOODY INCOPETENCE” I can’t stand it!!

I expect by now you are getting the general picture as to why I am feeling like I am. Although I have some wonderful family and friends etc who are always there for me I guess in things like this they are probably quite helpless although they do help. What I mean is that what I really need is someone to grab these people and box their ears a bit, or in some cases A LOT!!

It’s at times like this that in some ways I wish my mind wasn’t so active as it is now as until recently I have not been concerned with trying to sort out these things, but I soon wake up and realise that in a lot of ways I need to do this for myself and not just others.

Ah!!!! Harvey’s!!!! My Old Mate. Well a little won’t hurt will it??

See Ya!!

2007-03-25T10:01:00.000+01:00

Argggggg!!!! This blinking tight / itchy skin caused by the GVHD is really getting on my nerves at the moment. Apart from the odd wheeze from my chest I guess the only “Health Problem” I’m having at the moment is this skin thing but it’s more than making up for all the rest. I have a number of sores on my legs and stomach etc caused by it breaking down in places and the steroids etc stopping it heal properly and although they are very good the skin underneath them, and some of them are about 6”x3”, is extremely itchy and no amount of rubbing relieves it. I will have get back on Merlin’s case when I see him in a couple of weeks, to try and get him to hurry up who he needs to hurry up regarding the extracorporeal photochemotherapy treatment I have been waiting to hear about as in am I having it in Birmingham or are they buying the machine and giving me the treatment here. He is, at the moment convincing himself and others too that the GVHD is actually burning itself out slowly and spreading further down and out of the bottom of my feet so to speak, but I’m afraid I don’t fall into this group of people, as living with it daily, with the tightness and the constant itching it is nowhere near giving up the goose. Besides he did say before Christmas that he should have a decision for me in January and it’s now rapidly heading towards April.

Maybe he is related to “You Know Who”, who also seems to have a problem with dates and stuff. Now Now John!!!!! I really must learn to not be so sarcastic!!! Nah!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

On a much lighter note then I thought I would let you know my experiences yesterday when I decided to do my little part for the Local Economy as we are always being bombarded with requests from the local council and shop keepers etc to “Buy Local”. Well I went into Barry, a medium sized town centre where they are currently spending millions of pounds renovating the roads and pavements etc and although there are some horrific, dangerous obstacles for the less mobile person like myself to overcome at the moment I can envisage the end result being quite impressive. Okay then after hanging around a while to try and get into one of the Disabled Bays which as per usual 3 of the 5 available are taken up by that breed of “Lazy Arse Gits” who need to park there because the packet of fags and bottle of bud they are buying from the shop is so heavy to carry they need to be close to there. Tara put the chariot together and she headed off with her mate to do a bit of shopping for her “Girly Stuff” and left me and my chariot free to “Ride The Wild Wind”, well do what I came into town to do. I only wanted to go in 2 different types of shop although the 2 shops would probably end up costing me a fortune as I know what I’m like when I start. They were a Butchers and a Green Grocers not much to ask is it? For those that don’t know the area and I guess that’s pretty much all of you, Barry Town Centre is pretty much one road with smallish type shops on either side. There is an area of it that has been pedestrianised with the slightly larger shops like Peacocks, Boots etc etc which is paved but annoyingly they have this like really steep 2” high sloped curb either side of the middle section so that it sort of defines the pavements for when vehicles are allowed down there in the morning. In this area I found the one and only Green Grocers in the Town Centre. It looked well stocked and the staff looked like they would be really nice and helpful. All those bright coloured Veg and fruit looked so inviting from where I was sat. “OUTSIDE ON MY BLOODY SCOOTER” because there was this huge step into the shop and when I asked or rather shouted into the shop from outside to one of the “Lovely Assistants” to enquire if they had a ramp or maybe another entrance that was flat and I could use I got a resounding “NON”

Okay then deep breaths, calm down, you know what you get like when you get all flustered!!! I travelled on past all the shops which I would have been able to get in like Herbalists, Cards and toys, Banks etc even a bloody tattooist!! In search of a Butchers. After going all the way up one side then the other there was only one Butcher too. I’m sure there used to be about 2 or 3 along there?? Never mind. I must say the meat looked really nice and fresh and well presented. The stereotypical Old Butcher shop handed down from father to son etc “BLOODY HUGE STEP AGAIN” so I enquired/shouted from the door which thankfully was left open as I wouldn’t have even been able to do that if it was shut, “do you have a ramp”?? “Why”? Was the reply. Ummm now let me see?? Could it be something to do with what I’m sitting on and the Mount Everest of a step standing between me and you??? Oppps there goes the sarcasm again sorry!! “No, sorry we don’t get much call for it round here. What do you want I can bring it out for you”? For one I want to see what looks nice and makes me want to buy it, so if you start on the left and work your way round bringing me ALL of your product to look at outside in the street we might just about be done by next Tuesday sometime. He couldn’t quite understand that he had to make arrangements for people like me “BY LAW” and not just because he felt like it, so I promised to send him a copy of the Disability Discrimination Act highlighting the points I was making. Aren’t I a nice man?? With that, Oh and the old “2 Finger Salute”, renown world wide I headed off back to the car to meet up with Tara to go to the Huge Out Of Town Supermarket to buy the stuff I was hoping to buy from a Local Supply. Instead I am having to eat this week, Chicken from China, Liver from New-Zealand, but the Beef is British although it does come from Scotland.

These supermarkets are all geared up for us wheelie dude’s, well pretty much anyhow, and I guess as a result of this they must be taking complete advantage of the market share that includes the disabled and elderly etc etc as the Local Shops sure as hell are not doing anything to stand in their way. In fact I would go as far as to say that they are handing it to them on a plate and all for what, in most instances, at least the 2 I mentioned today about £50 to sort out. Not much is it?? Think of all the extra business and therefore profits you WILL GET!! As I’m sure that a lot of people like me would support your local businesses much more regularly if they were to at least try and help themselves.

There you go then, rant over for today. I can go back to sleep now!!

See Ya!!

2007-03-22T05:42:00.000Z

Hi there folks. I’ve just realised that I have been naughty and not blogged for a while now. I’d like to say it was because I have been so busy or even, heaven forbid that I’ve been so ill that I haven’t turned the computer on, but it would all be a lie.

I’ve been just plodding on doing pretty much the mundane things in life like, breathing, eating and the obvious side effects caused by eating as in, by product disposal if you get my meaning?? Oh yes you will be pleased to know that I have kept up, well intensified actually, my confrontation with all the various agencies that are responsible for providing a suitable service for disabled people etc. and not just the Lip Service at best that most of them are guilty of.

I think it’s very much like the Train situation I was talking about and which “A Fellow Crip” had commented on too as in the service you can expect is very much down to individual areas / councils, MP’s even and their approach to such issues. My small experience of just some of the problems faced by Disabled People in particular, although I am aware that they are sadly not the only discriminated section of society, has really opened my eyes to the wide spread, blatant even at times, Non-Compliance to the current regulations contained in “The Disability Discrimination Act 1995” and subsequent revisions since then also. Its not as if everyone has had this sprung on them, although I must say that a fair bit of tinkering has been done up till around 2005 but nothing too major, nut even so there is absolutely NO EXSCUSE why people are not complying with the various aspects of the Law. Businesses were given a couple of years to make changes for example to make there business / service provided etc, accessible to Disabled People yet 2 years on there is still Blatant abuse of this almost to the effect that they are sticking two fingers up to everyone and as well as that they are happy to miss out on the business they may get from all those dodgy geezers in their wheelchairs and their huge circle of family and friends all of which will not be using their service etc. Good Business Sense?? Mmmm!!!

I guess in my own small way, by harassing the various people I need to harass to try and bring about change I at least feel in myself that I am doing my bit to improve things, although I am under no illusion that I will make much of an impact into this huge problem. I cant help thinking at times though if I was say, a Muslim or maybe from the Middle East, and played the Racism Card that things might get done quicker, which although I can’t even begin to think what such people have to face on a daily basis in the way of abuse and discrimination I cant help but feel the my voice and that of the Disabled Community is not heard.

On an interesting point too, I have actually had contact with Guess Who?? Yep, you guessed it; the illusive Mr John Smith MP had stuck his head up over the parapet. It was just a coincidence mind you that he happened to write to me 4 or 5 days after I had written to not just his, Chief Whip, Party Leader, Party Chairman, Welsh Secretary, Health Secretary, Social Service Committee Chairman etc etc but also the Opposition’s equivalent too, by mistake I must add, but interestingly enough it is the opposition MP’s that have mainly responded and most of them are appalled surprisingly with the conduct of my MP and offered to have a word with him which I have interpreted as to mean “Take him round the back and rough him up a bit. Maybe break a few fingers, or better still the Horses Head in the post usually does the trick ha ha ha” Well as for the letter from Mr Smith it just said that he has passed the matter on to the relevant department at the local council, which incidentally I have done myself, whoopee dooo!! He also did say that he has no record of receiving the previous Emails I had sent. Well Mr Smith, I DO!!! And find it some what strange that you had replied to an email sent to you at that same address I had sent all the previous Emails. Just call me Mr Cynical I guess. So I will have to wait and see what help, IF ANY??? I am going to get from him. I am hoping to meet my local councillor in the next week or two to discuss the serious problems with the paving around my area too which hopefully should be fun. There are absolutely no dropped curbs within about ½ mile of my house so getting around on the scooter is impossible unless I break the law and drive on the road. Well that’s another subject for another day I guess.

Okay then I am off. But before I do just a little note to those that may be interested. My mum’s not too good at the moment, in fact she is in the Local “Miners Hospital”. She has some pretty serious problems including Fluid around the heart and blood clots on both lungs making breathing really difficult let alone anything else. The condition is quite serious although she is quite stable and comfortable. It all stemmed from a chest infection she has had for a number of weeks. I think they never helped the matter by moving her via ambulance from one hospital to another knowing she had 2 blood clots and the risks involved, in fact her heart did stop on the return journey and she had to be resuscitated, sort of proving my point really. Anyway she is comfortable as I said and would appreciate yours thoughts (and prayers if you are that way inclined) that doesn’t quite sound right does it but you know what I mean don’t you?

See Ya!!

2007-03-16T11:59:00.000Z

Question Time!!

Well did you watch it then??? I hope so. Last night was the filming of Question Time and as I had said earlier myself and my Little Sis had been invited on as Panellists, Only joking, wouldn’t that be a laugh?? No, we had been invited on to the audience.

After picking up my Sis we headed off to Newport, just as every man and his dog were coming out of working and simply getting in my way on the road, inconsiderate buggers, don’t they know who I am?? Well we arrived all flustered and having pretty much debated every current political issue and my favourite MP of the moment of course. It was here that I came across the first problem. When I rang earlier they informed me that I would be able to park right outside due to the wheelchair etc so when I was confronted with a barrier and a rather nice lady on the other end of the intercom telling me that I will have to park some ½ mile away you can see that I was in for some fun. Anyway I explained the position as in I had rang to sort this out and that her offer of letting me get dropped off at the entrance, but my Sis would have to move the car to the other car park was not possible as she was not insured to drive as is no one but me and Judith. So she asked me to drive up and someone will meet me. So as she had said a nice man was waiting to try and explain things to me face to face but to be honest he had no chance from the beginning I was going to park there if he liked it or not. Well he did actually say that it was okay for me to park there anyway which I thought was a good start to the evening. Inside after a short wait we were all ushered into a queue to be searched etc which again could have been a problem but went as smooth as could be, in fact they never checked me at all and I must have been the only person who had managed to take a drink into the theatre as they appeared to be taking bottles off people when they were searched. The main problem I guess would have been “how do you use one of them portable scanners on someone who is sat in a wheelchair surrounded by metal”? After a short wait I was given the “Royal Treatment” again and was led in first to the auditorium due to me having to manoeuvre a bit to get into place which I must say Ruth did with great style and poise. Much to her relief too they had put me almost right at the back on the left and not in the front as we were thinking it would be. By the way if you were watching I was the one right at the back as I said on the left in rather loud to say the least Lime Green Shirt, just so that I blended into the background you see. They do this sort of warm up before hand which they say is help relax people before the actual filming which incidentally to my surprise is not edited at all and is shot straight through. Well I happened to come up with a few maybe controversial comments which I think resulted in my not being chosen to have my say during the filming despite me sitting there with my had up pretty much constant throughout, not that I’m bitter at all as the whole experience was great and that would have just been a small part of it, besides my little Sis Ruth got chosen to actually ask one of the questions. It was the one about Blair’ intervention in Zimbabwe or rather lack of intervention.

We were both rather impressed with 2 particular panellists who were, Lembit Opik Lib Dem MP and Clare Short Independent MP. They both had pretty much the same opinion on the matters debated throughout the show and I found myself agreeing vehemently with them both on many occasions. Poor old Mike O’Brien Solicitor General, Labour MP was determined to make a right fool of himself most of the evening and to be honest he over succeeded completely in that department and to be honest I think that Labour had probably made a huge mistake in putting him forward for the show last night in the first place. The Conservative representative so to speak was actually pretty much a nobody. Priti Patel (not an MP) had actually stood and lost the seat for Nottingham North in 2005 so is not an MP as such although she is involved in the Tory party somewhat although she did have a change of heart between 1996 – 1997 when she went to head up the Press Office for The Referendum Party, a great thank you for being put on the A-List don’t you think? That just leaves Mail On Sunday columnist Peter Hitchens who can be a bit of a loose cannon at times. He is strongly of the opinion that we, as in “Humans”, are not responsible for Global Warming. HUH????? He does have a few opinions that I vaguely agree with such as the stupidly over the top Political Correctness that is becoming normal and accepted these days. Things like an English Church School renaming the Children’ Story Book Classic, “Three Little Pigs” to “Three Little Puppies” because some Muslim people for example might get upset with the reference to Pigs and Pork. Jeeeeeezzzzzz. I guess the Animal Rights will spout up next and complain about the reference to Poor Little Puppies.

Well if I start on that subject this will be an extremely long blog, Hell it already is so I just noticed.

Just one more little thing, I actually received a Letter from you know who in “The Commons” this morning, in fact I received 2 from him and one from Cheryl Gillan Shadow Secretary Of State For Wales, not that they tell me much mind you, only that he has started to investigate on my behalf and will be in touch soon, Ha Ha Ha pull the other one. Isn’t it strange that when just after I wrote to his Chief Whip and Party Chairman, Leader, Welsh Secretary etc etc he suddenly responds? Maybe I’m just a cynical old git???

If you managed to miss Question Time last night you can watch it again by clicking HERE

See Ya!!

2007-03-14T15:44:00.000Z

They Don’t Know What They Are Letting Themselves In For!!

I had a rather interesting phone call yesterday afternoon from “The BBC” of all people. It appears that they want me to be in the audience this coming Thursday Evening for the “Question Time” programme being filmed just up the road in Newport. I had applied a couple of weeks ago and never for the life of me thought they would allow me loose on poor old Mr Public. Although I have always quite fancied taking part in this particular programme I have been finding that through one reason or another I have become more politically aware over the last couple of years, maybe as because of the whole disability thing I can see the more direct impact these people (or Alien’s in the case of the ever elusive Mr J Smith) have on me and my family etc..

They had asked me what my position was regarding a few matter that are “Hot” so to speak at the moment e.g. Iraq, Trident etc and also was there any questions that I would like the panel to address. Well, how long you got??? I said. I made my point about the lack of accountability of Local Mps quite strenuously I think along with the lack of action on behalf of councils to enforce the workings of the The Disability Discrimination Act such as the appalling lack of access to business in a wheelchair etc.

What’s needed I think is a big news item to do with disability over the next 24 hours, that way I might get my chance to shine. In saying that though I will also have my say regarding the other issues being discussed too after all what’s the point going if you don’t take part?? I’m dragging along my Little Sis too so she can have her say as well as maybe push me around a bit in the chair that is!! She’s quite political too so will no doubt enjoy the whole thing as much as I will.

So people look out for Jonny5 “Super Star” on Question Time on BBC 1 Thursday 22.35 (10.35pm for the thickies like me). You won’t be able to miss me. I will be the bald bloke in a wheelchair sat in the front next to a stunning blonde. My sister will probably be near there too Ha Ha Ha!! Sorry Sis!!!

See Ya!!

2007-03-10T13:45:00.000Z

It’s all in the mind!!

I can’t help but notice that I seem to have a bit of a spring in my step of late. Well that sort of feeling if you understand me. I think it is down to no end of different things that have all seemed to fall into place, more of their own doing rather than any intervention on my part.

I seem to be a lot more positive than I have been in quite some time, but in a number of ways there’s no reason why I should be that way. I mean, my chest has not suddenly cleared up and I can actually breathe properly, and my skin has not overnight turned me into Mr Bendy, although Merlin did say the other day that he thought the GVHD was diminishing and maybe even burning itself out, although the jury is out on that one as I am not totally convinced. My heart has not started pumping my blood around at warp speed, need I go on? I think you get the picture. It’s predominantly I think a mental attitude reaction brought on by a number of recent events. They would be things like “The Train Journey” obviously, the lack of visits to Heath Towers which would indicate that all is well and they don’t want to see me, the weather has been pretty good of late too, with lots of sunshine. Don’t you find that waking up in the morning with the sun flooding in through the window, filling the room with its invisible “Happy Rays” makes you glad to be alive? I know I do. Then there is the matter of the Local Council agreeing to give us some Home Support at last which will make such a difference and the fact it will be free is a great bonus. My appetite is rampant again and I’m cooking like there’s no tomorrow especially the House Special, Bacon Sarnie’s, and I think all the talk in certain quarters, who shall remain nameless, of the delights to be found in devouring one is merely making me want even more. There’s also the fact that I have over the last couple of days started to get out and about on my scooter, just around the immediate area and to the shops and so on. I have however come across some major obstacles that are stopping my from going much further, well in fact some quite literally stop me getting further than about 100 yards from my door without breaking the law and driving on the road, but I will save that thought for another time.

So you will see that yes, I do have a lot to be happy about and I do strongly believe that it does make a difference if you can think positively. It proves to me that the mind really is a powerful tool that you can use to your advantage when you need to and it pays to smile and be happy and positive.

So I ask you all to do just one thing to brighten up your day every day. You can start right now in fact, when you’ve finished reading this Blog, SMILE like you’ve never smiled before, I promise I won’t look honest!!

See Ya!!

2007-03-08T20:27:00.000Z

My Day Out!!

The First Obstacle A Rather Steep Ramp To The Platform.
A Bit Slow But No Problems.

Llantwit Major Station. 1ST Stop On My Adventure.

No Turning Back Now.

The Man Who Can.

If You Look Closely You Can See My Legs Trembling.

My Favourite Shopping Haven.

See I Did Get There.

George Thomas Hospice's New Home. Isn't It Nice!!

You Know You've Made It When They Name A Railway Carriage After You!!

There you go then. I hope you enjoy them as much as i did when taking them.

See Ya!!

2007-03-07T16:33:00.000Z

Well I did it!!

I was up bright and early yesterday morning to set off on my adventure off into uncharted territory, well Cardiff anyway!! As I was saying the other day I was a little apprehensive to say the least having not used the train for what must be about 15 years or so as an able bodied person let alone in a wheelchair/scooter. I arrived on the deserted platform 10 mins or so before the train was due and found just one other person waiting. Well they must have all been waiting in their cars or something as about 2 mins before the train was due you couldn’t see the platform it was so full. A really nice man came up and started chatting to me asking if I had been on with the scooter before and after telling him no he said “don’t worry son, it’s really easy. When the train arrives I’ll go tell the driver and he will come out with a ramp and you can get on and park it up in your own special area in the carriage”. What a nice man I thought. Well he kept his word because no sooner had the train arrived but the ticket collector was standing there ramp in hand. He put it down and on I went. All the other passengers moved to make room for me to get the scooter in position, or maybe they had just seen my driving before, ha ha. After asking where I was getting off he went and rang Central Station to get them to have the ramp to hand when we arrive. Off he went and left me busy nattering away to a few people around me who were all nice and chatty considering it was an ungodly hour of the morning for me as I’m usually still asleep now. When he came back to sort out a ticket for me he was having a right time of it getting the right discount which incidentally is a whopping 50% off if you remain seated in your wheelchair etc. He found it eventually after lots of playing around just in time to arrive in Cardiff. As planned the man with the ramp was there ready for me. After helping me off he showed me where the lift was to get downstairs and I was off into town to met up with sis and a bit of retail therapy and of course a bite to eat in the shape of a bacon buttie obviously. For research purposes you understand. Bearing in mind up till now I have had the best treatment possible by all the staff at Arriva trains, but it sort of stopped when we went into Maddisons in St David’s Centre Cardiff sadly. Oh, they were great at taking your money, well actually my little sis’s money, but when the Bacon and Mushroom Sarnie’s turned up it was not a pretty sight at all. Between us we had no more than one small mushroom, that’s 2 slices each, and 1 ½ rashers of Bacon. Well if that wasn’t bad enough it was absolutely stone cold. Well after complaining I sent mine back demanding at least a warm one. Well it duly arrived a few minutes later 2 nice big rashers of Bacon and Heaps and Heaps of Mushrooms and it was nice and hot, much to my sister’s annoyance as she had gone ahead and ate her’s ha ha!!! At least the coffee was nice I guess. I tell you what I found driving around on the scooter in Cardiff is the state of the pavements are horrific and downright dangerous in places. Every crossing they have put the obligatory ramps but there is still a step of around 2 inches to get up or down making it very difficult to negotiate. The other thing which in some ways is a bit more serious and that’s the number of shops etc that are absolutely not accessible by wheelchair at all due to steps etc. How are they getting away with it still since the introduction of the revamped Disability Regulations?? It’s disgraceful and I have told the local council amongst others today of exactly that fact today. If Mr Smith is anything to go by though I won’t get any replies.

Okay it was back on the train now to continue on my way to Coryton to George Thomas Hospice for my Relaxation Session. Yet again this went as smooth as clockwork. Ramps ready staff really helpful etc etc the only thing missing was physically having the Red Carpet to drive on but I sure as hell had the service. I had a bit of a nightmare when getting out of the Station at Coryton because of the state of the old paving etc but that was not within the realms of Arriva Trains and was soon overcome. I arrived just a little early for my session but was going to have a cuppa while I waited. Well I’ll be buggered!! The session had been cancelled HA HA HA!!! After all that I stumbled at the last hurdle. They had attempted to ring the day before apparently to let me know but I had changed my phone the other day so they had the wrong number. So back to the station to start off on my way back home after ringing Judith to let her know the good news that I will need picking up a bit earlier. The return trip was actually even better, if that’s possible. I guess it felt a bit better just because of the fact of staying in the station in Cardiff for the connection to get me back home to Llantwit Major. The last ticket collector actually sat down and had a natter pretty much most of the way back as the train was quiet. Another very very nice man!!!

So back at home and in 2 minds as to how to feel the day went really. On the one hand the service from Arriva Trains and meeting up with my little Sis and the eventual hot Bacon Sarnie was all great but the overall state of trying to negotiate my way around the obstacle course that is Cardiff Town Centre was to say the least a huge let down. After the fact that they are seen to be a very progressive, forward thinking council this was completely unacceptable. I think though it was a great adventure all in and I know that it won’t be another 15 years before I use the train again, in fact I was thinking on the journey back of all the places I could go even locally and at 50% discount would probably work out cheaper than putting fuel in my Gas Guzzler and also safer if I was to use Tesco’s or Morrison’s filling stations.

I will try in a while to post a few piccy’s of the journey, but I need a bit of a rest at the moment and you probably do too after reading this mammoth post yet again!!!

See Ya!!

p.s “Arrive In Style, Arrive By Train” my new motto.

2007-03-03T12:58:00.000Z

Helpful Chappie!!

Remember I was saying that I had recently written to my really helpful Local MP, well I have posted a copy of it here for you to read if you like. You will notice that my usual blend of subtleness flows throughout the message.

===================

Dear Mr. Smith,

I have Emailed you now on 2 occasions, they being 10/01/2007 and 15/02/2007 regarding a problem i am facing in regards to a Disabled Facility Grant application with the Vale Of Glamorgan Council. I enclose a copy of this letter at the end of this Email.

I am quite disgusted and annoyed that although you are supposedly my Local MP you have not even so much as acknowledged receipt of these Emails let alone actually done anything in relation to looking into this matter. I find it hard to not think that if it was a matter to do with, say, the RAF Base across the road from here you would be all too willing to fulfil your obligations as my MP to look into this matter for me. Seeing you over the recent weeks and months raving about the welcome new Training Academy has just added fuel to the fire sadly. In the scheme of things my problem is insignificant although to me it is very dire.

Thankfully the local Councilor Mr. John Thomas and Mrs. Jane Hutt MP are both trying to help me with this issue as you seem to not be interested.

Unfortunately i am not able, due to mobility problems, to get along to one of your Local Surgery Sessions to see you face to face so am reliant on other ways such as Email etc to contact people.

Well, as i said i will attach at the end of this message another copy of the original letter that was sent out to you back in the beginning of January just in case you are remotely interested.

Yours

John Eidmans-Ford

P.S A copy of this letter has been forwarded along with an explanation of your total incompetence to:

The South Wales Echo

The Western Mail

The Barry & District Gem (Free Paper)

The Cowbridge Gem (Free Paper)

The Daily Mirror

The Sun

The Star

The Daily Telegraph

The Guardian

The Daily Express

The Independant

The Observer

The Times

Prime Minister Mr.Tony Blair MP

Rt Hon Patricia Hewitt MP (Health Secretary)

Mr Ivan Lewis (Parliamentary Under Secretary of State for Care Services)

Mr Rhodri Glyn Thomas (Chair of Health & Social Services Committee Welsh Assembly)

Mr Brian Gibbons (Health Minister Welsh Assembly

Pope Benedict XV1

Rt Rev Archbishop Of Canterbury

Mr George Bush Jnr

ANY ONE ELSE WHO IS A LOT MORE LIKELY TO RESPOND TO MY E-MAIL THAN YOURSELF!!

Oh Yes, I have also posted a copy now on my blog for anyone else that might be interested.

Yours,

John Eidmans-Ford.

==========================================

So there you go, you an see for yourself exatly what has been said, lets see whether I get a reply, YEAH Right!!!!!

See Ya!!

2007-03-01T20:56:00.000Z

"Every Little Helps" And I Don't Mean Tesco's

Just a small rant I think today as to be honest not a lot has happened in the 15 hours or so since the last post.

I have a bit of good news today though. I had a visit from a Financial Assessor from the Local Council, to do with the Application I have made for help around here, not just for me but for Judith too, as she needs some respite at time too after all. The main reason for her coming was to see whether I was going to at least have to pay something towards having the service, despite one of the governments manifesto pledges was to make this service free at the point of need, as they called it. I seem to think that the devolved Scottish Parliament has actually introduced this and they are having the service paid for. Well the upshot is that according to her assessment of my income (well lack of it to be more precise) minus the odd few outgoings they take into consideration such as water, gas, electric etc we are actually entitled to help “FOR FREE”. I was gob smacked actually when she told me as I was thinking of at least having to pay something towards it. On the other hand though if you saw what we actually pay out versus what we have coming in we are left after paying all the bills etc with around £100 a month to pay for food, petrol, clothing etc, so I wouldn’t know where they would have expected me to get the money from.

So a bit of help from them for a change, which is more than I can say for my Local MP John Smith. I have been emailing him along with others for the last 2 months to see whether he can give me any help in trying to if nothing else, speed up the assessment process for the Disabled Facility Grant I have applied for as they have told me that I will not even be assessed for probably around 10 months or so and that is only the first hurdle I need to overcome as there are a number of assessments involved in the process. As for John Smith he hasn’t even had the decency to acknowledge receipt of them let alone do anything about it. all the others I have asked for help have all started the ball rolling thankfully as if it was left up to him, who as he is my LOCAL MP should be acting on my behalf, then I would still be here 3 years time. The grant is actually going to be used to build a much needed single story extension comprising of a Bedroom and Bathroom on ground floor level as I have not and will not be able in the future to get upstairs. A stair lift is unfortunately out of the question and other than this we just don’t have the room to adapt the floor plan to accommodate the extra rooms downstairs as it is. The other option I guess is to move to maybe a bungalow. Well why should I have to move from where I am happy living and besides we would want to stay in the area and the bungalows are around £50k dearer than our house and that would mean a new mortgage which I wouldn’t get anyhow due to not being able to work. So I guess you can understand the need to get this grant sorted out for all our sanity. I have written AGAIN to Mr Smith today this time, shall I say that I was pretty up front and pulled no punches in what I felt about his lack of support and help in this matter and wait eagerly for his reply although I have the impression that I will not receive one, what do you think??

Okay I better get my beauty sleep as I want to look my best for Merlin tomorrow don’t I?

See Ya!!

2007-02-28T20:26:00.000Z

Relax & Enjoy The Ride!!

Hi there fellow blog land people. I just thought I had better write something as I’ve been a little quiet of late I know, but to be perfectly honest my life has been somewhat boring lately. What I mean really is that my health has not been causing me many problems, if any and I haven’t really been back and fore Heath Towers for any poking and prodding although in saying that I am up there at the end of this week for a double whammy!! I am having my usual 6 weekly dose of Immunoglobulins then I’m going straight in to see Merlin afterwards although I am hoping that I may be able to see him whilst I’m at the Day Unit having my infusion as that will save no end of time, or at least get them to take all the usual bloods that he wants whilst I’m there. So fingers crossed for me then pretty please!!!!

I’ll tell you what I have been doing this week and that is having my usual Reflexology with the delightful Judy. I actually have a session every other week and the other week I go to same place, “George Thomas Hospice” but go to a Relaxation class instead. I have always found both of these sessions extremely helpful and I guess although they are very similar I seem to feel quite different after each one. Usually after the Relaxation session I come away feeling quite alive and if I could walk I guess I would have “a bit of a spring in my step” as they say. It doesn’t quite work the same in the scooter though. After the Reflexology session though I usually come away absolutely shattered and weak. All I want to do is curl up and sleep, which as you can guess might cause a bit of a problem if I’m trying to drive at the time. Thankfully Judith comes with me to most of the sessions so at least she can drive home afterwards. I have had a number of strange feeling / experiences whilst having Reflexology which thankfully have all been nice ones although I know you can also have the opposite too, I’ll have to stay away from them!! I actually had one this week. We were probably half way through the session and I was very relaxed with my eyes closed and I guess bordering on the edge of falling asleep or staying awake when all of a sudden I felt this like very fast spinning at the base of my spine, somewhat like a small Catherine Wheel, it was really warm too. Then in a matter of milliseconds it shot up my spine and felt like it had just disappeared out of the top of my head. I think I might have startled Judy a little as I sat up bolt upright with eyes wide open ha ha ha!! It was a really nice feeling all warm and somewhat tingly. Most of the other feeling I have had in the past have been quite similar as in they have felt either warm or comforting or even the one time made me shout out with laughter much to the surprise of the poor woman treating me at the time. Next week I am going to have a bit of a day trip to get to the session. I am going to get there by train on the scooter which is something I have never done; well in fact I think it must be about 15 years since I even went on a train. I have looked into it and it is all possible such as access etc and besides that I can stop off in Cardiff on the way for a little retail therapy as I will have to change trains there anyhow. I’m quite looking forward to it now, I know it sounds really sad but it’s like a whole new exiting adventure for me. I was thinking of maybe taking pictures along the way to prove that I have managed to do it by myself so I may well be posting them next week so keep a look out.

Okay then I is off to watch “Dragons Den” and maybe a Bacon Sarny or two.

See Ya!!

2007-02-22T20:44:00.000Z

The Good Old Bacon Sarny!!

There have been a lot of references recently both on here and on Peters Blog too. Its one of the great British dishes that is pretty much loved by all and I think if a poll was done of Vegetarians the one thing that would make them return to eating meat would be the Bacon Sandwich at least the ones I know would anyhow. It has started me thinking of all the many ways of cooking and therefore eating one.

I guess there are huge varieties of various Breads ect in which to serve the Bacon, although my particular favourite is a nice warm fresh baguette with lashings of naughty Anchor Butter, the Full Fat, Loaded with Calories version obviously. As for the Bacon there are so many different flavours along with the obvious Smoked / Unsmoked argument there are hundreds of forms of smoking treatments available, most of which I have probably eaten at some time or other over the years. In this respect I don’t quite have a favourite really. Then there is the minor point of “How To Cook It”. This is purely down to individual tastes I guess although for some I suppose there is the health implications that frying food may cause. So, do you Fry or do you Grill?? I used to Fry all the time and still occasionally still do, although I have recently discovered way of cooking the Bacon that really enhances the flavour of the overall sandwich to an amazing level. The other advantage of cooking it the way I do is that it is works better with the cheaper range, you know the stuff that’s usually pumped full of water to increase the profits.

Have you guessed what it is yet??

Give In??

Okay, I’ll tell you. I put it on a smallish plate and Microwave it. “That’s not exactly that unusual” I hear you cry and yes I agree to a point but let me continue. If you use a cheaper type of Bacon that’s “Full Of Water” what happens to all that water when you microwave it?? You guessed it, it comes out and stays on the plate. Okay, following so far?? Okay then, after micro waving your Bacon for just around 1 minute for 3 slices then removing and turning over and cooking for a further 1 minute you are left with 3 slices of nice cooked juicy bacon and if you are lucky and have followed the advice and bought cheap Bacon you will have a load of deeply flavoured Bacon Juice. What I do is spread the Anchor on the Warm Bread which obviously melts in, then, this is the thing that makes all the difference, I pour all that lovely juice onto the bread and then place the bacon in and Munch away in a heavenly bliss, savouring every Bacony mouthful. You really ought to try it, you won’t be disappointed honestly. I just had a thought for those that like their Bacon a little crispier than I do, you could always cook it this way first to suck out all the juicy goodness then pop it under the grill to crisp up.

All this talk of Bacon has made me really hungry I’m gonna have to go and make one now to alleviate this urge. Sorry!!

See Ya!!

(I can’t believe I just wrote a blog on Bacon Sandwiches, I really must get out more)

2007-02-19T14:47:00.000Z

WOW!!!!! Check out this ground breaking thinking by “The Man Who Can” Mr Blair. The story’s HERE. He has used the single brain cell that was left following his Lobotomy Operation in the George Bush Memorial Hospital last year to come up with an amazing idea to get the NHS to work more efficiently. The idea is to use things like the Operating Theatres in the evening and weekends to try and cut down waiting lists etc. Now you may call me “Mr Cynical” or quite probably something much worse, but I was thinking this very same thing when I first popped my head out into this cruel world all those years ago. It has always seemed senseless to me why operations are only more or less done Monday – Thursday 9-4 and some occasionally on a Friday, that is obviously apart from emergencies. As you know I have ranted on about this on quite a few occasions as I think it is such a waste and with no real excuses why it can’t be done, well apart from the darling Consultants beauty sleep being disrupted or more like reducing the time they have spare to see to their Private Patients. If you think of it mind you, the consultants Private Patients are mainly NHS Patients that are not prepared to wait to sometimes months or even years to have the treatments needed, so it is in the consultants interest to not push this longer, more efficient use of services forward is it? Why should they think they have this overall power over how the NHS is run just because they are the ones doing the things like operations etc as the way I see it they are only another cog in the wheel along with all the others like nurses, porters, cleaners, catering staff etc and should have no more clout.

The main problem I can see which will almost certainly stop this revolutionary thinking going ahead and that’s the funding from the Primary Care Trust as at the moment they are having to cut back on some non emergency operations etc due to lack of available funds, so where the money is going to come to pay for all this extra work etc is a complete mystery. Maybe a huge hike in Income Tax or there is always the route of Private Insurances being used to contribute towards the cost of operations, at least that way the fairness will be that the people actually using the service will have to pay for it and if you don’t use it you don’t pay for it. I admit this will cause all sorts of other problems but you show me a system that will not cause any??

Ah well!! On a lighter note my appetite appears to be well and truly back much to the Local Tesco’s stores delight. They were beginning to worry about the loss of takings resulting in my not buying much food of late. They don’t have to worry no longer, it’s my turn to worry now as I have to find the money to pay for it all. You don’t think of things like that until you come across them. I recon that all people on Steroid Treatments ought to receive an allowance to use towards the extra cost of food needed to satisfy the maddening rampant appetite you get whilst on them. My ailments are all behaving themselves too at the moment which makes a change, so not a lot to report their either. I’m not up to much this week either as Jude is on a first aid course all week and so getting out and about becomes a bit difficult to say the least if not impossible at times. I am going to another session of Relaxation tomorrow which will require me having to try and put my scooter together when I get there which although I have seen done a few times I have never attempted it on my own so that should be lots of fun. At least if I get stuck there should be plenty of people around in the centre to lend a hand if I need it.

Okay off to try and hassle the Social Services again, wish me luck!!!

See Ya!!