Right - so I've been readmitted to Kings College Hospital London as of 04/03/2014 with on-going gut and (now) minor oral GVHD. I've resisted being an in-patient again for as long as possible, but was making everyone at home's life a misery what with being so grouchy and short fused. The out-patient treatment I've been receiving hasn't proven heavy duty enough to hit the GVHD with the coup de grace, so once Jeannette was able to arrange cover for school runs and had a clear stretch of time ahead of her (ie no out of country business stopovers or extensive travelling) we decided that it was time to stop fannying around with one foot in and one foot out of the door and for me to commit to getting back in my body's driving seat (as it were).
I'm back on Waddington Ward in the room immediately adjacent to that in which I spent my chemo/transplant stay just over a year ago - with (I can freely admit now) much more rosy expectations of what was to come. Not only does it not seem like a year has elapsed, but I also find myself occasionally and irrationally asking 'what has the past year been for?' The only workable rationalisation I can come up with is that it has happened and it's done - that's all that can really be said without getting maudlin - which is deffo not the right frame of mind for the current set of circumstances.
05/03/2014
I have a new buddy since I checked in yesterday - it's called IV Buscopan it gets jacked straight into the catheter on the back of my hand and so far has worked for gut and GI pain. It seems to be very much associated with the passage of food and/or waste through the digestive tract and previously the only way I'd found to avoid the pain was to avoid food - not the sensible option if you're looking to provide the body with the resources to heal. So the deal now is that I get a shot 30-40 minutes before mealtime which (so far) has helped greatly.
The staff here have already taken blood, urine and stool samples, with further tests to be done later for nutrients absorption and I think there's also an endoscopy, bone marrow biopsy and CT scan on the cards which will be nice. I've bravely decided on the full English for brekkers today and it's just arrived so I'm about to find out how much of a good buddy the Buscopan is going to be.
Later...
Well that turned out not be such a great success as whatever was working before to stop the pain packed up pretty soon and breakfast was just plain nasty. Unpalatable school dinner sausage - not a curly cumberland one as described, crusty baked beans, greasy luminous yellow hash browns and fishy powdered egg omelette it's almost as if it is served up as a bet to see which patients are desperate or separated from reality enough to go for it. I know that chemo therapy can strip away your taste buds and a year ago, when I had a tongue resembling a radial tyre with about 2 taste buds left, I might have even been able to eat it - blindfolded. It actually beggars belief that a fellow human being could be given the budget, foodstuffs and facilities to cook, yet still come up with something so manifestly vile, if this were a cafeteria I very much doubt that the creator of this crap would be able to look you square in the eye whilst serving it to you. It's back to coffee and croissant for me tomorrow.
I had a visit from my consultant Victoria and her colleague Clare late morning today, they got straight on the ball once I'd described the level of discomfort I was experiencing and prescribed a sub cut morphine jab which has been a revelation leaving me pain free all day for the first time in ages - it's currently being dosed every 2-3 hours for which I am grovelingly grateful - I would expect that the dosage will be titrated down as the other measures kick in and am trying to leave as long as possible between jabs.
I had a chat with a counsellor called Phil earlier today and was actually surprised at how much I had to say. The gist is that I've fully accepted my situation and have no false expectations of a miracle happening any time soon. I mentally refer to it as being 'entrenched' - but not in a negative way, it's just a state of being that has to be temporarily tolerated until the day comes that I don't have to tolerate it any longer - at which point I can emerge from 'treading water' mode ready for the next phase of life proper. So this time out is for some heads down, no nonsense, no visitors all out blitz on what remains of the overactive GVHD causing stem cells that don't yet realise their time has passed and that they decently should turn their toes up sharpish and exit stage left - not unlike the Lib Dem element of the government alliance really...
All the little old rituals have to be observed again, measuring and recording fluid intake and output, two hourly BP checks, temperature and O2 saturation observations, wearing DVT stockings and trying to remember not to cross my legs when laying on the bed. I think I must have been a little dehydrated on arrival as I've had 2 bags (litres) of saline since I came in as well as a bag of magnesium - and that's discounting oral intake which isn't far off two litres today.
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