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)

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!!

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!!

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!!

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!!

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!!!

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.

 

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!!

 

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!!