Wednesday, February 20

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 17th 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!!!

1 comment:

Anonymous said...

I don'yt know about an MoT - sounds more like a 100,000 mile service!!! Still, good to hear that (at last?) many digits are being extracted and something is being done. The photo phoreses (if that is waht is being discussed) is at St Thomas's (ggod views - I had a look at the unit - top floor)in London. Hope it all happens this time.

O&U