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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Thursday, 14 February 2013
T -5.. Well that wasn't so bad after aaarggghh
Haven't had the Thymoglobulin yet so here's a bit more info for people in the queue.
Lipsyl or equivalent from day one is must, some time over the past two days my lips have taken a turn for the worse I can't really open my mouth too wide for fear of splitting them and they are pretty sore today. Luckily Jeannette is coming to visit a bit later on and is bringing me some stuff.
If you have a blackout eye mask, the type they give you for long haul flights you may want to bring one in as there is emergency illumination like a little green Christmas light set into the ceiling fluorescent units of each room that gives it an alien glow when everything is turned off. You may be able to ignore and get to kip or it may keep you awake, in which case 'mask up suckah'.
Later/...
19.40pm 14/02/2013
Well quality control is now going to have to take a back seat (yeah like it's been reaaallll important so far) as I'm trying the balance the need for capturing my first experience of Thymoglobulin (henceforth 'The Nasty') against the reality of typing illegible cobblers. That was tough - ever looked at a word and it's just like you've never seen it before? lLLEGIBLE Illegible is that the right word?
I'm now two hours in to my first infusion of the nasty, with four hours to go and so far have a slightly dry mouth, loss of appetite - had to send my lovely jacket spud back untouched -and the by now familiar head rush/buzz that has accompanied all previous infusions, except much stronger.
Listening to music at the moment is bloody great. I've got itunes banging out a playlist in the background and for any of you interested in making the whole procedure a bit more interactive I've reproduced it:
1. Battle of could Care Less - Ben Folds Five
2. Big Area -Then Jehrico
3. The Biggest Horizon - Clint Boon Experience
4. Black Hole Sun - Soundgarden
5. Dracula from Houston - Butthole Surfers
6. Hey Dude - Kula Shaker
7. I'm Free - Space Dragons
8. In the Meantime - Spacehog
9. The Man don't give a Fuck - Super Furry Animals
10. Not if you were the Last Junkie on Earth - The Dandy Warhols
11. One Way or Another - Blondie
12. Semi Charmed Life - Third Eye Blind
13. Shine - Collective Soul
14. Some kind of Bliss - Kylie Minogue
15. Story of a Girl - Nine Days
16. Where I find my Heaven - Gigolo Aunts
17. White Punks on Dope - The Tubes
18. 867-5309 - Tommy Tutone
If you want to make the experience REALLY interactive and you are the type of person likely to have easy access to an album by the Butthole Surfers, then I'm gonna assume that you already have a healthy stock of your own pharmaceuticals, so bung one of each colour in your mouth -whack the playlist on and join me!
Kylie Minogue may look a bit out of place in there but it's actually a pretty good song written by James Dean Bradfield.
Things aren't looking too good on the short term memory front. I just took a comfort break and peed into the measuring jar prior to recording it on the little chart, rushed back into the room to <ahem> 'rock out' to the middle eight of Blondie, finished that and then picked up my measuring jug and tipped it down the loo without noting the amount and then stood there trying to work out why I was holding the jug because I didn't need a piss and ........
20.30 hrs now and the side effects haven't materialised yet. This dose is 0.5mg per kg per day, tomorrow's is 1.5mg per kg per day (200% more) and on Saturday it'll be 2.0 mg per kg per day (300% more) and Sunday the same again. If you want a day of rest then that sounds like a pretty good way of going about it to me. I'm betting that if today doesn't kick my arse, then Friday or Saturday most certainly will. I'm going to put this up on the blog site and veg for a bit.
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You're going to love my suggestion to help with the lips and skin soreness you mentioned - nipple cream! Yes, really.
ReplyDeleteThe expensive ones like Lansinoh HPA Lanolin really help some women get through painful breastfeeding complaints, and I got it for my disabled Mum for things like bed sores. As it's completely natural, the hospital should be happy with it, too. Sorry to draw an analogy between your mouth and cracked nipples, but I really reckon it could help! Best, Kate.
Thanks for that Kate - I'm working through the stuff I've got at fair old rate (fat lower lip) so I'll whack that on the list - Nick
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