Had a look at the stats for this inane drivel and it has passed 22k page views. Which I find a bit suspect especially as one of the sources was lesbian sex chat room - I kid you not.
Just been given the wonderful news that I’m moving on from Kings College to Rye/Winchelsea General Hospital at 7pm tonight to start my rehab course. Overjoyed and excited doesn’t come close to explaining how I feel - the hospital is only half an hour away from my home. I’ve had a look at it on Google - it looks like a large country house that’s been converted and built on to and stands on top of a hill overlooking Rye and the sea.
My only concern is that I’m shipped out with sufficient suitable medication to manage my joint pain. I’ve had a hard time convincing the consultant here, but I’m pretty sure that GVHd has returned to aggravate the joints on both sides of my body. Wrists, shoulders, elbows, hips and knees on both sides are now exquisitely painful. I’m pretty much immobile when I first wake up as I can’t even use my elbows to lever myself up prone. A combination of paracetamol, slow release oxycontin (?) and oramorph kick in after about 30 minutes and rather like a lizard after a sunbath, I’m ready to start moving.
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| Are my meds on their way? |
My weight during my hospitalisation bottomed out at 54kg and change. Coincidentally this is what I weighed when I left hospital after my transplant in 2013 - although I was only in for a total of 7 weeks that time. I currently weigh 58kg and the trend is up - I just hope the food isn’t shitty at Rye and if it is will they allow outside food to be shipped in to patients? Talking of which I’m going to buzz now and get one of the staff to heat up my evening meal Tesco beef stew and dumplings yum.
My mobility is improving, I get around on crutches now rather than a Zimmer frame, my calf muscles and hamstrings complain like buggery as they are not used to being stretched but it gets a bit easier each time. I had a look at myself in the mirror after a shower today and I’m shockingly thin. My knee joints are double the size of my thighs and my shin bones stick out like cut throat razors. My face consists mostly of nose (friends might say no change there) and I’m deffo getting my Dobbie look on. The only positives I could glean is that, having been weaned off predisnolone whilst at Kings, I’ve lost my hump (Pred users will understand) and far from having moon face and Richard Nixon jowls I’m starting afresh with a skinny fat free konk face. I’ve also got rid of the big round belly I was sporting which means the dozen or so pairs of shagged out Levi’s I own will fit again. No more elastic band across the top button for me Daddy-oh.
So I’ve arrived at the rehab hospital, I have a lovely new sunny room on the ground floor with a view over a courtyard garden. Plenty of room to move around - no disrespect to the KCH people but my isolation room was so tiny that the nurses were constantly playing Tetris with all the pieces of kit just to get to me. No cooked outside food allowed here, but I'm told the food here is brilliant and fresh cooked on site every day so I’ll give it a go. So it’s all unicorns and rainbows so far
I’ve started to try walking without my crutches, just back and forth around my bed my gait has now developed into that of Buster Merryfield who played Uncle Arthur on Only Fools and Horses, proper cockney.
I left KCH with three bags of meds and one bag of personal possessions. The nurses at this end looked wide eyed at this and spent at least an hour coming to terms with this cascade of drugs so I had an anxious wait for my painkillers before trying to turn in for the night. They seem to have got their heads around it, because all my usual meds were in place this morning. One thing that slightly concerns me is that during my stay at Kings they seem to have dropped aspirin and amlodipine from my drug intake. I was given to understand that as a I have had two cardiac episodes (with three stents now in place) I would be taking these drugs long term. So it’s either a miracle and I should fall on my knees in gratitude or a fuck up by one of the registrars. I’ll find out on Tuesday when I have an out patient appointment at Kings.
