Tuesday, 19 February 2013


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.


  1. Hindsight update! Last week, someone ins a similar position to where I was last year, asked some quite specific questions. Here's my reply...

    1. Hi!

      It doesn't feel great, does it? I found both the physical impact on my posture and my mobility, and the long wait before we were able to fix it up, frustrating (to use a polite term). I recognise your description of typing. I has all sorts of coping - leaning on things, mostly - the kitchen work surface, the edge of the bath, ... I found standing was my big problem. I couldn't stand unsupported for any length of time (walking was OK, stationary was not). I used to have to sit down even to brush my teeth. I still have some issue with standing - I often lean on the bin at the bus stop, much to Marisa's horror that it's not clean. (She's right, of course, but needs must.)

      I had vertebroplasty - not kyphoplasty. My neuro surgeon said kyphoplasty with my myeloma was too risky because it would just cause other collapses. So the surgery was targeting my pain, not changing my posture. I was a bit disheartened about that, at the time. I had it after my stem cells had been harvested, but before my SCT. I had to argue quite hard for this... the transplant team were worried about what wounds it would leave, and whether they would heal in time before SCT (I had the SCT about 3 weeks later). In reality it left tiny puncture marks on my back. I've had worse wound sites from bone biopsy! The procedure was straightforward - they brought me in to hospital the night before (but only so they could get an early start in the morning), and I was home in the afternoon. The reduction in pain was immediate and dramatic.

      By then though I had lived 11 months with pain that was preventing me from rescuing my posture. I wish I'd been able to persuade them to fit the 'plasty in sooner - and although my hospital were adamant about not doing it during my chemo, I know other people who have.

      Now I have very little pain in my back - as a consequence of the 'plasty and of having got my myeloma into remission. But my spine still isn't properly supported, and I came to realise that ultimately my posture will come down to how hard I work on it. I began with some relatively gentle exercises (all on Dial M), and have worked on it progressively - I do hyperextensions these days, which I couldn't possibly have done, a couple of months ago. I lost 4" of height, and that isn't coming back, but I find that now I can get my back in a good (ish) shape in the morning by exercising. It gradually deforms during the day, so I quite often work on it again in the late afternoon, which is always harder to do (I guess it's been compressed all day). If I do this, I get long periods where I can stand unsupported without too much discomfort. And I can see in a mirror that my posture is much better.

      Personal vanity is a valid reason for me too. Yes, I think living in pain did make things worse. I would, in hindsight, have wanted to be able to do a little to keep straight - even lying flat would help - though I suspect I wouldn't have been able to, due to pain. I used to sleep supported by several pillows. Sleeping flat might have been better for my posture, but I don't think I could have done it.

    2. I decided during treatment that if it took oxycodone in the evening to enable me to loosen up a bit and stand a bit more straight, then I'd rather get addicted to that than make my back even worse, so I took oxycodone often simply to make me feel a little looser. And I didn't have any problem coming off it again), anyway, so that was definitely the right choice.

      I just walked crooked, I never had an aid. Actually, I just got driven everywhere - even to hospital (which is a 10 min walk for me normally). I went through a long period of getting chauffeured. I went to the Olympics last year and resorted to the mobility transport. I went to Centre Parks and had to had a car collect me each time I wanted to go from one place to another (while Marisa and the kids were cheerfully cycling). If your reaction to chemo is like mine then, while in treatment, you won't have the energy for much walking anyway. But maybe I should have got a frame. I imagine a zimmer would have been the right shape for me (if not the right image).

      I did buy a back supporting camping chair" which I still take with me anywhere that I might otherwise have to stand around or sit on the ground. It's brilliant. I can go on picnics because of it! Or music festivals. Or camping. And I have a "back friend" which I use in the car, and which I used to take anywhere I was suspicious of the chairs - such as university lecture rooms. I went to the theatre yesterday and really regretted not taking it. I have my grandfather's old one - so I can't say the best place to buy them, but this link is at least the right product.

      I did a month's teaching when I'd finished chemo - so my pain was better and my energy was returning - but before my vertebroplasty - so my back was still pretty bad. I don't know whether standing up for days on end was a good idea or not, in terms of posture (and I wan't prepared to be on oxycodone while in the classroom). I was always a wreck by the end of the day (could hardly walk).

      What a tale of woe - I hope that's useful information, without being too depressing. To cheer you up, I should say that things are so much better now. I'm back on my bike. I swim a lot. I went camping a couple of times and could cope with lugging stuff in and out of the roof box. I can stand without discomfort, as long as I've recently done my back extensions. I take very few pain killers. I can almost stand against a wall with my bum and shoulders on the wall - not quite (yet), but I'm getting there.

      How's your treatment progressing?


    3. Linkrot repair... Gelert don't seem to sell the strongback chair any more. The manufacturer's website is here: http://www.strongbackchair.com/