Rituximab

Ah yes RITUXIMAB reallly does deserve its own little detour, even if nobody reads it.

For those of you for whom it was a success - congratulations.

This sidebar is for those of you for whom it might not have been such a stonker. I’d be interested to hear if we had shared experiences. I’m told that it’s a kind of shock tactic thing - an anti-body therapy used to hit cGVHD with a real blast to knock it out of existence. It is administered over a 4 week course of IV infusions,  done at your usual out patient clinic. I was given mine October running into November. It takes about an hour and leaves you spacey and tired and rest is given as the the best thing after - on infusion day.

Then you wake up the next day and everything is different:

 a) your body is now a shell.
b) it’s had all its insides taken out with a giant ice cream scooper.
c) you are some kind of ghost thing for the day but you can talk.
d) there’s a hangover lurking in the vicinity
e) you still look the same to other people

The Groke - a pretty good analogy for how you may feel on R+1.

Thoughts take a long time and things happen very slowly because the ice cream scooop thing took your brain off somewhere. There tends to be a lot of standing still and staring. I spent most of R+1 getting out of people’s way - until I copped on that the safest place was back in bed again,

Getting subjective it was the weirdest non recreational drug I’ve ever had - it really does applecore you then fills the void with vague uneasiness and a touch of hangover. You’d have just about recovered and got your self back together as a functioning human - when the next Wednesday would roll around - so you probably get 3 days of relief a week for four weeks.

 I finished the 4 week course as I was hopeful that I would be one of the lucky (38%?) for whom it works, unfortunately I was not.

There is a (my) tendency to think - Christ what a stupid twatfaced bolloks waste of time and unneccesary aggro, which sadly I must admit was the first port of call for me - but then you get to realise that this stuff is not cheap and I am grateful to the NHS for the opportunity to be given the therapy in the first place. And what if it had just worked out eh? What if it just had....