Popped up to the Dark Side for a catch up with Prof today. Still no identifiable results from the back biopsy, so that turned out to be a very damp squib in a Petri dish. Might still grow something, but I suspect it's going to be a bad case of garden coriander – lots of hopes pinned on it but nothing ever emerges from the pot.
I love the way he keeps asking me if I think it's the steroids or the antibiotics that have improved my back pain – how on earth would I know? I've now started saying 'it's probably the steroids' or 'I think definitely the antibiotics' on separate visits, just to cover both bases, well he doesn't really listen to my answers aanyway…
Agreed that we would start to reduce the steroid mountain, so am moving from 60mg to 50mg for 5 days from tomorrow, then down to 40 then 30mg before I see him again. Amazingly, my face hasn't yet expanded into the usual steroid hamster chops (famous last words, I'll probably wake up looking like a bloody cannonball tomorrow now).
And also, poo pants, begrudgingly also agreed that I will start the maintenance treatment next week. So once a month I will have a full day at CCL having an IV infusion of the chemo drug Dara that I was on for 4 months at the back end of last year, as this is seen as the best way to lengthen the remission period post transplant. Obviously, anything that keeps me healthy for longer has to be a good thing, but it's still a brasser that after my first SCT I basically came off all drugs and treatment and was 'free' for the 6 good years afterwards, till the shit 2 years then kicked in and stuff snowballed, all going wrong on the health front. And now I have to keep going on the drugs, there is no 'walking away' this time.
So, I will have to bite the bullet and find out what the peripheral implications are. What drugs do I need to take before and after the Dara day each month? I'm very much hoping it might just be a day here and a day there – what I most want is to chuck my hated daily tablets box to the back of the cupboard and not have to start each day with a pile of drugs, like some poor old pill-popping granny. I will ask next week and have fingers crossed it will be a few steroids here and there and not a pile of stuff every day.
Hey ho, here we go… still on the Myeloma roundabout but hopefully just for a few days a month and no more x