Pre-SCT

Bet he feels like an elephant, shaking his big grey trunk for the hell of it
Elephant - Tame Impala

Welcome to Dial M. This won't be a blog of the minutiae of my life. Just a record of my experience with myeloma. If you want the rest, you'll have to take me out for a drink. And we can both promise, on those occasions, not to mention myeloma at all.

In 9 days time (if all goes to plan), I will have a stem cell transplant. One friend has already pointed out that this sounds quite "whizz bang". In fact, it will just be a bag of blood, attached to a drip. I've even seen the bag before, because it's my blood, and I was there when they took it out. Actually, in fairness, the apheresis machine they used to do so was quite whizzy. You don't often come across centrifuge jokes. So that one was a technical novelty, even if it's not very funny. Hmm. I'm getting distracted here. Focus. Where was I? Oh, yes. Cancer. How could I forget.

In 8 days time (if all goes to plan), I will have a massive dose of chemotherapy, which will destroy all my bone marrow. And hopefully, with it, most (though sadly not all) of my myeloma. I'll need the stem cells in order to grow new bone marrow. I'll need the bone marrow to produce new blood cells. Simple really. I'm going to be laid up in a hospital ward for 3 or 4 weeks, and probably laid up at home for a couple of months after that. I thought it might be useful to keep people up to date on what's going on. Saves you phoning Marisa and asking her.

Do phone Marisa though, but talk about other stuff instead.

I've put some backstory on here about the last few months of my life (the months leading up to diagnosis, followed by front line treatment). I'll be updating on here while I'm in hospital, when I'm bored, which might be quite often. Leave me comments!

Vertebroplasty

What I've got you've got to get it put it in you. Reeling with the feeling. Don't stop. Continue
Give it away - Red Hot Chili Peppers

No-one can really understand what myeloma is like unless they have it. But some of those near me now have a pretty good idea. Sorry about that - one piece of insight we could all do without. So here's an unmitigated good news story.

Since I broke my back I have become increasingly debilitated. It was at its worst when I was in the midst of treatment - full of tumours and chemicals. But even as things have calmed down considerably, I'm left with difficulty standing straight, pain if I stand up for any significant period of time and problems sleeping. I'm also still getting through quite a lot of painkillers (oxycodone these days, a synthetic opiate, and a controlled drug.) Much of this is due to the many fractured vertebrae in the middle section of my spine.

Tonight it feels like I've been released from one of my cages. I've had vertebroplasty on my spine today - acrylic cement to fill in some of the worst holes and (hopefully) alleviate some of the pain. It's done as key hole surgery. I spent only one night in hospital and was able to come home the same day as the operation. Amazing. I can't say how grateful I am for the awesome things modern medicine can do. And for the NHS, which does them all for me.

It struck me this morning quite how much I had invested in today. How down I would feel if nothing had changed tonight, or not enough. How I'd feel if I thought that it was never going to be better than this. But the good news is that, right now, I feel like I've got something back that I didn't know I'd get, and I can believe that I really can be fit and healthy again.

I read something online which suggested that the benefits of vertebraplasty might all just be a placebo effect. I don't think that's true, but even if it is, I'll settle for that.

Consent

I feel better now I've seen you, but deep inside my bones feel like timber, and I, I am shaking from the tension
Galaxy Of The Lost - Lightspeed Champion

Consent forms. Whose benefit are they for anyway? It's just the system covering its own back. So you can't say "I never knew". You know you need to do it, whatever the risks.

I've had a few of these by now - where they tell you what could go wrong, and then you have to sign to say you know the risks but you want to proceed. But the transplant consent was in a league of its own.

"Graft failure" means 5% don't pull through. But as a young, fit person, I'm unlikely to be in the 5%.

"Secondary malignancies" means 5%-10% likelihood of developing leukemia, some years hence, but I'm at risk of that anyway.