Had a good long chat to Merlin yesterday after he had shown the Students his vast knowledge. Most of the time he brings them to see me in particular, apart from the obvious reasons like I’m so well behaved, and good looking and a completely perfect patient, is the fact that as far as they are concerned I am a great if not perfect example of what skin GVHD is like. He generally asks the same sorts of questions and as I’ve heard it so many times before I feel like sticking my hand up and shouting “Me Sir, Me Sir, I know the answer”. He usually asks this one that always creases me and that’s, “Do you think the skin condition has impeded my ability to walk properly?” Right next to the bed are a Zimmer Frame and next to it a Wheelchair. Ha Ha Ha. It is quite worrying mind you the amount of students that are not sure and usually gets them to ask me. My usual answer is to point at the Zimmer Frame and Wheelchair saying, “What do you think”? Anyway, after our chat where I took the opportunity to bring up my feelings about the next step in the treatment plan etc and also to make the point that things seem to have slipped behind again. What I mean by this is that quite often in the past my treatment and in general the approach to my case so to speak has been going on at great speed. Then every now and then things seem to slow down and there is not much involvement and it’s almost as if you’ve been forgotten about although I know this is not the case at all. I did say that I was not too happy that thing to be put on a hold yet again till next Wednesday’s Pow Wow before a decision will be made on the light treatment etc and he did apologise about last week which I accept as I know unforeseen things can come up which are out of his control and I don’t have a problem with that at all. It’s just that it all seemed to be heading in the right direction lately. The new pro active approach with the Immunoglobulin and the physio etc etc I just don’t want it to fizzle out before it has at least had a chance to start to work as has sometimes happened in the past.
Okay then the outcome of this little chit chat was that they will continue on with the now correctly prescribed nebuliser and hopefully the wheeze will settle down in a few days. If not they will investigate further from Monday onwards when they turn the power back on downstairs, I mean when they actually open up all the other departments that have been closed because the saintly consultants require the weekends off for there shooting parties and reading the Sunday Times etc etc. “I’m Not Bitter”!!!!!!! As the physio at home can’t begin till the 20th November they will keep me in till at least next Friday maybe Saturday so that I can continue having physio in here and there will be more of a seamless transition when I do leave. Also by staying in that bit longer it gives them the chance to discuss my case again on Wednesday and then if need be start to arrange whatever the treatment for mainly the GVHD will be before I go home. It does all make sense I suppose although it does mean another week stuck in here, bored stiff.
In some ways I was rather hoping that this first visit into Heath Towers since April really wouldn’t be such a long one, it will be about 5 and half weeks this time. That’s enough punishment for any one to take. I just hope that this immunoglobulin treatment makes a difference and does help keep the infections at bay, that way I might just manage to stay out a bit more this winter. Although I know when I have to come in, I do have to come in, but it is in all fairness not the healthiest place to be and I’ve lost count of the number of times that I have gone home only to come back in almost straight away because of some bug or other that I have picked up when I was in here. Oh that reminds me, I must ask them to give me my flu jab before I go home too as it’s due.
Right then, better go unpack the suitcase again as I aint going anywhere quite yet. The one blessing I guess is my bestest favourite slop stirrer Sue is on all weekend so the food should be lovely. She spoils me rotten too with loads of Milky Coffee’s and she goes hunting for Bacon for me now and again for breakfast or for sandwiches at supper time. She really is a sweetie and a great credit to the service. I wish they would learn a thing or two from her. She works with the same food and cooker and trolley etc etc as everyone else yet she makes it taste so much better somehow. Mmmmmmm, I wonder if she is related to Merlin as he comes from a long line of magicians with extraordinary powers??? That might explain it??? I will have to investigate further I think.
See Ya!!
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