A Myelodysplastic Syndrome blog dealing with how totally fucking groovy life with GVHD can be, given the judicious application of stupidity.
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Wednesday, 13 February 2013
T - 6. Stuff you should know if you're in the Queue...
Well I've been here for nearly five days so it stands to reason that I'm now a complete expert at blood and chemo and stuff so I thought I'd give you the benefit of my vast experience.
If you're in the queue for a BMT and you're reading this for a heads up, well here we go - I would be totally shafted without a laptop, although I'm only five days in, I've come to rely on it as my window to the world, it makes me feel far more in touch than a mobile or the telly. It's used for games, communication, news gathering the lot. You're going to be here a while so load up on distractions.
So far the chemo hasn't been too onerous. For every bag of cytotoxin infusion I've had, there have probably been two bags of infusion and a fistful of pills prescribed to counteract the side effects - or at least minimise them. I've also got Cordosyl type mouthwash and anti thrush throat drops - and finally there's this stuff a bit like Milk of Magnesia (but sweet) which is to protect the lining of the stomach and has to be taken with food.
I'm just about halfway through the chemo course now, at the start of day five and the worst that has happened to me thus far is a bit of intestinal discomfort, a feeling of bloatyness and the need to pee about every 15 to 20 minutes - you have to record how much liquid you take in and expel, which means peeing into a measuring jug and recording it on a little chart. So I say damn well done to the team that have formulated this regime because I reckon you could fill the iv bags with a Friday Night Biryani and get side effects no more grievous - and it might even do a fair job of finishing off your bone marrow. The message here is so far so good.
While we're on the subject of curries I suppose I should warn you that you will most certainly get the trots from the chemo - I was OK until about halfway through day four, I might even have been at the opposite end of the poo spectrum at the start of day four but at this moment in time I can tell you that I'm more than happy with the fact that my room is of a size such that I'm never more than eight feet away from Messrs Armitage and Shanks. I've been asked to provide a couple of samples for testing, so I'm saving that for this afternoon when there's a bit of a lull in the quality of daytime TV and I might need a bit of excitement...
Having said all that, I'm probably about 2-3lbs heavier than when I came in, which can only be due to the very sedentary lifestyle. I mean sitting on your arse all day getting free grub and having drugs pumped into you non-stop - it's a bit like the 1969 Rolling Stones US tour.
I keep remembering little things just when I think this entry is done with, BUT you will almost certainly want to bring a Chapstick or Lipsyl as the air conditioners and filters leave the air very dry and you will find that your lips will start to crack around the mouthline. Wet wipes are another useful addition - just for freshening up during the course of the day and as I discovered yesterday, an air freshener of some sort for the room.
With the chemo and the bloaty feeling comes fartyness. I must have been left to myself for about an hour or so - all hooked up to the infusion delivery and parping away happily, when one of the poor nurses opened the door to check on me and I swear I saw her head rock backwards as she broke the seal on the door. It's funny now, but I was just soooo embarrassed yesterday. So deffo get an air freshner, I'm getting one of those glass bottles with the sticks sticking out jobbies.
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Well I'll see you in a couple of hours...I'll bring a clothes peg with me Johnny Farty Pants...
ReplyDeleteGood to hear you've still got a sense of humour, will be reading with interest. Best of luck
ReplyDeleteKeep coming back - I hear he lives!
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