Epilogue three

You’re taking the fun out of everything
There’s no other way – Blur

Pain in the head

One’s body has three types of pain receptor (mechanical, thermal and chemical), but the pain itself is a construct of the mind. Acute pain serves a specific purpose, to act as a warning. Chronic pain (pain which goes on for months and doesn’t end), which doesn’t serve a useful purpose, is really a failure of the brain to reset, to accept things for how they are.

It is no surprise at all, when I look back at the most recent months of my life, to note that my mood tracks my physical experience pretty closely. It is hard to be upbeat, when one is in endless pain. Even last week, when I was suddenly feeling a bunch better, and making a series of plans, I was knocked back by one of my, not infrequent, bouts of acute rib pain. It was much harder to be upbeat the next morning, with my rib screaming. Mind is dependent on body.

I said to Marisa, some time ago, that I yearned for the day when I could do something as nonchalant as to flop down onto my bed. For a long time now my body has been so stiff, and sudden movements so (acutely) painful, that I have been forced to make every move a controlled, deliberate one. But just this week, for the first time in a long time, I achieved something approaching a flop. My whole body tingled for about 10 minutes afterwards, with the physical shock of what I had done. But there was no pain. It is no surprise then, that I am also finding more positive mood, a sense that there is light ahead of me. The physical and mental are entwined.

So… chronic pain is a big problem. Chronic pain brings almost inevitable loss of drive, and is highly correlated with depression, anxiety and sleep disturbance. Myeloma is painful, there’s no way around that, and some of that pain may even be “useful”. But the majority of it, especially the fact that it lingers so long, is not.

Having just finished six cycles of chemo, and with my light chain levels back where they were a long time ago, I’m keen to shake off the pain I’m in. I have experimented a few times recently with what happens if I stop taking my (opioid) pain meds. At the moment the results are mixed. It is not immediately painful, and that’s a big improvement on the last few months. But after a few hours I find the accumulation of aches creeping up on me, my body hunching over.

DrC was laughing to me, last week, as he wrote me a new painkiller prescription about the paperwork and procedures involved, because these are controlled drugs. He has classically illegible doctor’s handwriting and is fairly informal with his terminology. The pharmacy like to read the words “prolonged release…” in the description, and I have been sent back to get the prescription amended when it says “slow…” or “extended…” Plus we regularly disagree about how many pills I need, with him writing 60 while I say (for the umpteenth time)
“Write 56, it’s much easier”.
Finally, this week, we at least resolved the last of these issues.
“Why is 56 so important?”
“Because they come in boxes of 56. So if you prescribe 56 they just give me a box. Whereas if you prescribe 60, they have to make up a special little extra box for the last 4 tablets. It wastes about another 30 minutes.”
He seemed genuinely surprised by that. You would have thought it would get covered in medical school. There’s a reason for knowing your 7 times table.

Anyway, asides aside, he was laughing about the need for long hand prescription and whether this is assumed to act as some kind of disincentive to overprescribing. I responded with my anecdote about being given my opioid meds in hospital and the nurse standing over me until he has seen me swallow it, in case, I assume, I’m saving them up to give to a friend. But then, I say to DrC, I do understand what all the worry is about, with the alarming stories one reads of people becoming addicted to prescription opioid drugs.

He tells me, there is no evidence at all of addiction occurring among cancer patients. One consequence of all of the fear, he says, is that doctors – particularly GPs – often under-prescribe the dose of painkillers for the people who need them most. Far more important to have enough to ease the pain. Which is not to say these things are consequence free, even without worrying about getting hooked. I recognise a certain fuzziness of the head, when I’m on too much morphine. And I am so much enjoying being clean and sober now I’ve stopped taking my chemo for the time being. I do hope to be able to stop the painkillers too.

So, I will persevere with reducing my dose, and endeavour to reset my brain’s pain perceptions.

Maybe the broader lesson is one about recognising pain in other people. I know how hard I find it to smile, be upbeat, when I’m full of aches. Worth bearing in mind.