Cloudy intervals

Cloudy. The sky is grey and white and cloudy. Sometimes I think it’s hanging down on me
Cloudy – Simon & Garfunkel

A follow up on the path ahead, and my state of mind

I thought I’d share a few excerpts from my most recent take home reading matter – the pre-read participant information sheet for the Myeloma XII (ACCoRd) trial I am heading for. It might help give definition to the cloud I’m under.

Firstly, here’s the synopsis of the treatment duration. At a minimum it would be 5 months. But, depending on how I respond and how I am “randomised” it could be 7, plus 2 months recovering from the SCT, plus 2 further months “consolidation”, which would be 11 months. So, I don’t know how soon I’m starting, and I don’t know whether I’m in for less than half a year, or a whole year. And that’s without considering whether I will end off taking “maintenance” drugs indefinitely. Last time, I was so ill that time hardly mattered. This time, a year is tangible children’s milestones, holidays, work schedules. All of which are up in the air while I don’t know when treatment will start or end.

Next up, here’s an opening salvo on the treatment medications and potential side effects…

“The risks… are not well known”. Never forget: you’re on a clinical trial, not a tried and tested treatment. No-one knows how this will work out. And, assuming there are no unanticipated interactions to consider, then at a minimum, here are the likely side effects of the three drugs in the protocol. I’m reasonably phlegmatic about all of this. Still, it’s hardly a reason to smile in the morning.

That’s what’s clogging up my head, preventing me making any plans, clouding my future beyond the next few weeks. I guess some of the dialm audience – myeloma survivors and others who’ve experience of recurrent cancer – will understand this. For others, it might be hard to truly take in.

When I was diagnosed, I was haunted by fears of dying. These days, that bothers me much less. Partly because I’ve got used to it, and partly because I know that I’m not actually that likely to die, in the short term. It’s the process of living with myeloma that I have to reconcile to, now. Like anyone grappling with their own mind, I have experienced troughs of deeper darkness, and periods of greater positivity. Right now, I’m fine – I can put it all in perspective.

I don’t know if writing this up will elicit horror, pity, compassion fatigue or what. I’m putting it here for one reason only: that I want dialm to be an honest, unfiltered account.