09/03/2013
Hb: 10.0 (+1.8)
Wbc: 3.14 (+1.41)
Ntl: 2.62 (+1.19)
Plt: 87 (+69)
Weight: 79.8 kg
10/03/2013
Hb: 10.3 (+0.3)
Wbc: 1.31 (-1.83)
Ntl: 0.92 (-2.7)
Plt: 64 (-23)
Weight 80.2 kg
Apologies for being out of touch for a bunch of days, but to paraphrase Billy Ocean 'When the going gets tough, the blog can piss off' this is not reality poop hot from the from the frontline and I am not in the business of suffering for my <ahem > art.
WANKER I hear you shout - or is that just Jeannette?
Before I go any further - look at my lovely, lovely figures, 10/03 is without any recent top ups of blood or platelets or injections of GCSF - so I think I'm pretty much doing this myself - I couldn't be more chuffed. I know that some a re down a bit here and there, but the overall trend is good. If I can stay infection free and keep my temperature down, there's a real possibility that I could be out a lot sooner than expected.
Anyway I've had to write myself a bunch of headings so that I remember to include everything because so much has gone on. The first thing I want to say is that I'm stopping with the self-deprecating James Stewart type 'if that's the worst that this is going to get - then I think I'm going to be fine' spiel. I mean I still think I'm going to be fine, but every time I say OK folks THIS is the bottom, THIS is as far down as things are going to go, it appears to be the cue for the great Cosmic Bod to fuck with me some more - a bit like when the Gods stir the water in the font and mess with Harry Hamelin in that 80s Greek Gods fillum. So things have been shit, have got shitter and they may get shitterer still (or not).
There's a T-shirt logo for you.
Somewhere along the line I messed up my internal clock and my sleep pattern got very screwed over. I switched from a couple of dozes during the day and between 3-5.5 hours a night to 30-40 minutes every 2 hours throughout a 24 hour cycle. I wasn't too concerned for the first two days, but by day five I was a mess. The lack of sleep, combined with fluid retention and a bit of GVHD (Graft Versus Host Disease) rash had conspired to make me look like Darth Vader's guvnor with the hood pulled down <see pic> in fact I think if I didn't have such a trippy, happy colourful dressing gown I probably could have pulled it off. Be thankful it's a low-res pic...
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| Luke, Luke, - I know what you've got for Christmas... |
Roughly in middle of this period, about last Wednesday or Thursday it was decided to give me a go at an antibiotic called Ambisone - the first night I was given a taster dose, quite low and took to it ok. The next night, before being given it again, I'd had really bad headaches, still had some mucusitis and severe rigors so had been dosed up to the gills with Paracetomol, Codeine, Oramorph and Pethedine (the latter to stop the rigors). When the Ambisone was infused I felt some faint twitches and tingles but really had too much of a good thing going on behind my eyelids to be bothered.
Come the next night I pretty much went into it clean - ie no painkillers on board. This stuff is a sickly, pustular looking yellow and is apparently very effective at wiping out hard to track down infections - so basically it was aimed at the cause of my rigors and temperature spikes - which were hitting 40 degrees. It was a busy night on the ward with only 2 of the 3 usual staff on board (which I didn't know at the time) so the infusion started as usual with the machine chugging away and me laying back and wondering how long it was before my next painkillers were due for the ever present headache and with my nurse dashing off to another patient. After about 5 minutes I started to feel the familiar screaming kidneys band across my lower back and didn't think too much of it but within a further 3 minutes I knew some thing was up, the belt of pain kept tightening and flexing, my stomach started to churn violently and pains were starting to snake their way through my buttocks and down my legs.
Now, as the nurses here are no doubt damn sick of hearing, I am not a pussy when it comes to pain - I've been stabbed twice, been through a couple of windscreens, taken my share of beatings, had fingers/nose broken, had multiple bone marrow expirations, sliced the tips off most of the fingers on my left hand, fallen off ladders from silly heights and had teeth removed with insufficient local without a peep. My high pain threshold is a matter of pride with me - it comes from all the WWII and cowboy films I watched as a kid in the sixties and seventies.
Those guys could take a bullet - usually to the upper left arm (good guys) or the gut (for the baddies). Something that would normally have ricocheted around off the bone and rendered the entire upper arm into a bloody skin bag of its' own pulped components was treated as nothing worse than a bee sting. Cliff Robertson hauling his burnt and wounded body from the shattered cockpit of his Mosquito after his little ferret faced radio op has just passed on at the end of '633 Squadron' - I'm filling up remembering.
Christopher Plummer and Michael Caine in the Battle of Britain plummeting from the skies to strafe the crap out of Heinkels or Me109s with that Der Da Da Der Da Da Der Der Der Da Da Der Der Derrrrr music going on in the background. Men of a certain age know as well as I do that it's impossible to skip past this this film if you are channel surfing - no matter how much of it you've already missed. Mind you Christopher Plummer let the side down a bit when he let out that girly scream as his face got burnt off. Oh and Susannah York in that film lordy- but she was a bit nuts in real life I think.
This is part of my model of what comprises a man, so I though OK, I'll hit the call button and until the nurse comes, control it with breathing which is what I managed to do quite effectively for the next 25-30 minutes with this little mantra;
Breathe in deep and long for count of 5
Breathe out deep and long for count of 5
Breathe in deep and long for count of 5
Breathe out deep and long for count of 5 while saying 'FUCK YOU PAIN YOU FUCKER'
and start over...
Although I'd just made it up on the spot it worked pretty well and concentrating on keeping the rhythm and trying the make each 'FUCK YOU PAIN...' sound more menacing than the last took my mind off what was happening from the hips down. But I came to the point where I knew it wasn't going to work any longer, I'd over ventilated - my lips were numb and face was all clammy and lightly pins and needles. I had to break my pussy code and call for help - I tried a couple of loud groans at first - pretty much as soon as I stopped the breathing I was swamped with pain from the hips down, stabbing, burning disco lights of it dappling over me and my back arching upwards off the bed - crying freely now. I transgressed the Pussy code again and further this time by yelling 'Nurse' a couple of times. I realised that a nurse wouldn't come anytime soon - if she could have she would have by now. OK what next? - turn the machine off - I couldn't see to press the buttons - I reached down and fanned my hand around on the floor looking for the mains lead - found a bunch and bodily yanked the plugs out of the sockets across the room. Fell back on the bed - the pain didn't disappear instantly - but the relief was instantaneous.
Within 10 minutes my breathing had returned to normal as I could feel the concentration of Ambisone lessening with each circuit of my body made by my blood. 10 or 15 minutes after this the nurse was freed up enough to come and see me - I'd got myself together by then and explained what had happened and we mutually agreed that I wasn't going to be having any more Ambisone that night and to her credit as soon as I explained all this to Doc Anita the next day she got on the case and discontinued it immediately. Now it might just have been me in which it engendered such a severe reaction, but let me put a marker in the sand for you here queue people if you hear 'Ambisone' the next words that leave your mouth might need to be - sweet as you like 'What measures of pain control do you normally give with that?'
I woke up dead the next morning. Worst headache of my life so far (this is bearing in mind that I'm a recovering alcoholic of ten years standing and have expertise in this area) and karma had decided to diddle me just a little more by turning my mouth into a fleshy parrot beak, half man half herbivore dinosaur with quadruple peeling lips and vermillion eyes set deeply in a pouchy red ruined looking face. It was almost as though the intervening ten years of sobriety had never happened and I'd spent them on that same accelerating spiral of drink and drugs which I battled so hard to quit. If you don't get the 'Karma' reference pls do me a favour and go back and read 'T + 6 Karma's a bitch..' because I seem to be the only person that thinks it's funny - hardly any other bugger has read it.
In these situations the solution is age old and obvious and really the only way to go - you sleep and let your body take over - weaving you whole again strand by miniscule strand. I tried to sleep and just plain vegged for the next two days my eyes and face gradually looking more and more 'Picture of Dorian Gray' as it became plain to me that I couldn't sleep properly (just to give you some perspective the pic above is before the Ambisone episode). I caved and asked for some sleeping tablets to be prescribed that night (Saturday?) I'd had a bit of a tricksy experience with getting off sleeping pills called Zopiclone when I was first diagnosed back 2008 and was reluctant to go down that path again, but realised this would be for days rather than 12 months and what alternative did I have? - having just passed my sixth night without proper sleep I knew I was out of choices.
I'm writing now on Monday night after two nights of Zopiclone and I cannot begin to tell you how much better I feel. I got about five and a half hours the first night and maybe even as much as 7 hours over two spells last night. I even briefly had some white in my eyes before the infusions started today. I'm beginning to get some of my bounce back and feel that I can face the days head on now with an element of confidence that at least- at the very least I should be able to sleep at the end of it - and I'll cope with getting my clock sorted without pills when I leave hospital.
I just read this blog back to myself and was very tempted to delete the lot as self pitying whiny shite. There are pretty much guaranteed to be people within a 50 metre radius of where I am laying now who've had worse pain and worse sleep depravation and worse diseases and are Fugly as well. Then I decided well you go and write your own fucking blog - this is mine.
Well I'll just do a bit of housekeeping and give you the local news before I pack in.
In other news, a combination of water retention, possible infection and maybe just being sat on for a month has caused union member Mr Jolly-Bagge to swell by up about 30% in size, turn blazing red and become quite sore. Whilst the appearance is considered to be an overall improvement by the committee, we are currently in negotiations with the staff at Kings on 3 principal points;
- Curing or toning down the nuclear pink colouring
- Eradicating the itchiness and soreness
- Keeping the size.
Right that's mostly caught up - I'll try for some more tomorrow - one final bit of local news is that my NAC and Ciclosporin are being reduced to once a day and I've been told that I have to go and have do some special kind of drug respirator or inhalator to prevent lung disease. Now that sounds to me like pre-checks before going for a release back in to the wild - doesn't it to you?
Anyroad - more hot poop from our man on the spot when he can be arsed to report it to you from Kings College Hospital in the London Borough of Phones, Loans and Chicken Bones.
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