Had a pretty shitty night's sleep last night - from 2am to about 5am there was 'essential maintenance' on the ward above me which seemed to consist primarily of what sounded like a bunch of 30 stone blokes in hobnail boots frisbeeing steel dustbin lids around the place then trying to bash them flat with baseball bats - essential indeed. So it's back to catnaps to catch up.
Morning obs and tests have escalated again - 11! yes 11 separate vials of blood taken, more swabs and also my old favourite, the giant Q-tip up the bum. Then to top it al off I was kicked out of my room for four hours and sent to sit in the visitors lounge whilst my room was resterilised as the fella in the (now empty room) next door was found to have something contagious and there was a possibility that the lurgy could get into my room so both had to have a deep clean for safety.
I leant something new though, each of the rooms had to undergo high intensity UV sterilisation - a machine looking a bit like a skinny Dalek without the head or arm probes is wheeled into the room and left to run through its' cycle. I'm guessing this must nuke any nasties in the air or on surfaces. I was also able to sneak into the empty room in the early hours and nick the TV remote, they're like gold dust in here!
Went down for a CT scan yesterday afternoon/early evening and sat around in what looked very much like God's waiting room with up to, at times, ten other people all in hospital wheely beds and looking like haggard stringy shite. The more time I spend as an inpatient the more I appreciate my time at home - there are some poor people with chronic conditions for whom the NHS (bless it) is a way of life and I know it's not one I'd choose in spite of the organisation's best efforts at geriatric care.
If in 25 or 30 years things get too sticky for either Jeannette or I we've agreed that whichever one of us is the burden on the other will neck back the necessary lethal dosage of tablets and move on with some dignity and grace - I would hate myself for just hanging grimly on to life for the sake of burning oxygen and for being a drain on the resources and quality of life of those around me. Jeannette cheerfully reassures me that I've been doing this since the day we met - but I have to believe somehow that she's probably joking.
Haven't had any change in my meds so far, I'd like to think that a labful of keen eyed super boffins are at this instant rubbing their chins knowlingly, murmuring away as they work on my 11 vials of blood and botty swabs down in the basement of KCH - all frantically seeking the cure for my shitty chest/lung infection. An alternative scenario is that the tests have been subbed out to a firm with head offices in a cow shed in Uttar Pradesh and are making their way by bullock cart to a research team consisting of 8-10 year olds on a Yorkie Bar and half a samosa a day and that my results will be back in this country done dusted and complete for the princely sum of 19p in about 6 weeks.
Hmmmm - wonder which?
Before I close off this entry I thought I'd share with you a recent exchange between Milo (age 4 and a half) and me (nearly 52) whilst getting him dressed for school the other morning. Walkng him into the bathroom to brush his hair and clean his teeth, when he looked at the closed lid of the toilet where I usually sit to be on his level which was wet from (actual) shower spray.
He: Don't sit on there Daddy there's wee.
Me: No it's not - it's water from the shower - I just had one.
<I sit down>
He: No you didn't
Me: Yes I did
He: No you didn't
Me: Er yes I (to self f**king) did.
He: How do you know?
What a left field question. Then it dawned on me - he may not even be five yet, but he can see the matrix - he's the chosen one. Either that or the dirty little git sneaked back in to the bathroom after my shower and pissed all over the lid of the loo after I was done.
Hmmmm - wonder which?
Friday 30 May 2014
Wednesday 28 May 2014
T + 461. Encore de Equine Urine.
28/05/2014
Back in Kings College Horse Piddle again finally got a bed at 23.30hrs last night after rocking up at just after midday for my appointment. This time to try and put the kybosh on a respiratory infection that I've been carrying for a good few weeks now. It started off as just a tickly cough but has progressed to the point where I have damaged what remains of the muscles in my stomach and back from hacking so hard- bloody painful. Most of the symptoms from my previous whinge are still in play to a greater or lesser extent, but manageable for the most part. One bonus is that the Les Dawson auto-detune has finished and my hearing has returned to normal.
Probably someone has done them already, but I can't be arsed to trawl through Youtube to search them out.
It's 14.00hrs now on my first full day and apart from seeing a couple of registrars and nurses I've not started on any treatment yet other than the stuff I was taking at home, some saline to flush my kidneys and magnesium for the claw. But I've done the full range of swabs and blood tests so I guess they are waiting on test results before deciding on a plan of action.
Back in Kings College Horse Piddle again finally got a bed at 23.30hrs last night after rocking up at just after midday for my appointment. This time to try and put the kybosh on a respiratory infection that I've been carrying for a good few weeks now. It started off as just a tickly cough but has progressed to the point where I have damaged what remains of the muscles in my stomach and back from hacking so hard- bloody painful. Most of the symptoms from my previous whinge are still in play to a greater or lesser extent, but manageable for the most part. One bonus is that the Les Dawson auto-detune has finished and my hearing has returned to normal.
I will also be getting some tasty tasty new blood as it looks as though the anti-CMV treatment I have been taking (Valganciclovir) has been stepping on my Hb level which is a tad low at 8.9. Bang on cue my silly sleep patterns have re-emerged so I've only slept from midnight til 04.30hrs, but am determined not to start on the Zopiclone again so will try to normalise over the next couple of days - hoping that this will only be a stay of 5-7 days max, but then again we said that last time and it ended up being 3 weeks.
During my efforts to get back to sleep last night my mind was off all over the place and ended up on music. For some reason I got to thinking about - ahem - mashups - which is when two or more separate songs are digitally tweaked so that their rhythm or melody lines can be overlaid or dovetailed to make a new sounding piece of music. The first commercial instance of this that i can recall was Billy Jean/Do it again back in the late 80's. I started thinking about the most unlikely couplings that might just work and came up with these;
Isley Brothers - Summer Breeze and Pearl Jam - Alive
Abba- Does your Mother know? and The Sex Pistols - Pretty Vacant, also I reckon that Michael Jackson - Billy Jean would fit pretty well with The Doors - Riders on the Storm.
Probably someone has done them already, but I can't be arsed to trawl through Youtube to search them out.
It's 14.00hrs now on my first full day and apart from seeing a couple of registrars and nurses I've not started on any treatment yet other than the stuff I was taking at home, some saline to flush my kidneys and magnesium for the claw. But I've done the full range of swabs and blood tests so I guess they are waiting on test results before deciding on a plan of action.
Tuesday 13 May 2014
T + 447. Tales of the Entirely Expected.
Thought it was about time I did an update here as word got back to me that a former colleague thought I might have popped my clogs as things had gone so quiet.
Truth to tell apart from managing to kick the use of the Zopiclone sleeping tablets, I haven't really made very good progress with my health since I last blogged. I worked out that since the beginning of this year I have spent just under a third of my time as a hospital in-patient and a quarter of the remaining time either receiving photo-pheresis or attending blood tests or consultations - all the while still taking a shitload of immuno-supressant medication every day.
The upshot of all this treatment is that I still have GVHD mouth ulcers, have still not managed to rid myself of Cyto Megalo Virus on a long term basis and have now developed GVHD in my eyes which means they are incredibly sensitive to light and resemble a couple of rissoles in the snow - I wear sunglasses most of the time even on overcast days and look like a complete twat pushing a trolley around Sainburys in 3 layers of clothing a scarf and sunnies even on a warm spring day. My eyesight is due to be checked out as it is deteriorating and things that I know are straight lines now appear as wobbly when viewed solely through my left eye - add to this high blood pressure caused by my meds, constant cough and cold and breathlessness on anything other than a level plane and I'm a bit fucked up and shot away at the moment. So Kings College are scheduling a day of tests to check me out.
I'm told that GVHD eventually burns itself out, my photo-pheresis course has now been extended until September, they would usually have expected some kind of improvement from a patient in my position by now, but it seems my T-cells may be proving unusually resistant. Once the GVHD starts to show some improvement then the immuno-supressants can be reduced, which will allow my immune system to start working again thus allowing me to fight off further infections and maybe deal with the ones I'm carrying.
Probably the most frustrating thing about my condition is the feeling of weakness and not being able to do much. Prior to the transplant I was physically pretty fit and strong and happy with the way I looked - now not so much. Steroids have given me the jelly bean shaped face and any muscle I had on my body has atrophied and although I have managed to get my weight back up to 10st 4lbs, most of that is middle aged bloke gut. I can't even run to catch a train. I kind of had to laugh the other when I considered that my Dad dying from heart failure at the age I am now was the trigger for me to make major lifestyle changes a few years back and to get myself in shape. The big joke is that physically I'm not in such a different condition to his at the same age - with the skinny chicken legs and the gut! Six years of work in the gym down the toilet.
I think I am innately an optimist though - because I know that the transplant from my sister has worked and saved my life and that all this other bollocks is just short term (well maybe medium term) hassle that should eventually resolve itself and given time I am confident that at some point in the future I will have a quality of life if not equalling, then at least approaching that which I enjoyed prior to the onset of the MDS in 2007.
Truth to tell apart from managing to kick the use of the Zopiclone sleeping tablets, I haven't really made very good progress with my health since I last blogged. I worked out that since the beginning of this year I have spent just under a third of my time as a hospital in-patient and a quarter of the remaining time either receiving photo-pheresis or attending blood tests or consultations - all the while still taking a shitload of immuno-supressant medication every day.
The upshot of all this treatment is that I still have GVHD mouth ulcers, have still not managed to rid myself of Cyto Megalo Virus on a long term basis and have now developed GVHD in my eyes which means they are incredibly sensitive to light and resemble a couple of rissoles in the snow - I wear sunglasses most of the time even on overcast days and look like a complete twat pushing a trolley around Sainburys in 3 layers of clothing a scarf and sunnies even on a warm spring day. My eyesight is due to be checked out as it is deteriorating and things that I know are straight lines now appear as wobbly when viewed solely through my left eye - add to this high blood pressure caused by my meds, constant cough and cold and breathlessness on anything other than a level plane and I'm a bit fucked up and shot away at the moment. So Kings College are scheduling a day of tests to check me out.
I'm told that GVHD eventually burns itself out, my photo-pheresis course has now been extended until September, they would usually have expected some kind of improvement from a patient in my position by now, but it seems my T-cells may be proving unusually resistant. Once the GVHD starts to show some improvement then the immuno-supressants can be reduced, which will allow my immune system to start working again thus allowing me to fight off further infections and maybe deal with the ones I'm carrying.
Probably the most frustrating thing about my condition is the feeling of weakness and not being able to do much. Prior to the transplant I was physically pretty fit and strong and happy with the way I looked - now not so much. Steroids have given me the jelly bean shaped face and any muscle I had on my body has atrophied and although I have managed to get my weight back up to 10st 4lbs, most of that is middle aged bloke gut. I can't even run to catch a train. I kind of had to laugh the other when I considered that my Dad dying from heart failure at the age I am now was the trigger for me to make major lifestyle changes a few years back and to get myself in shape. The big joke is that physically I'm not in such a different condition to his at the same age - with the skinny chicken legs and the gut! Six years of work in the gym down the toilet.
I think I am innately an optimist though - because I know that the transplant from my sister has worked and saved my life and that all this other bollocks is just short term (well maybe medium term) hassle that should eventually resolve itself and given time I am confident that at some point in the future I will have a quality of life if not equalling, then at least approaching that which I enjoyed prior to the onset of the MDS in 2007.
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