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!!