steroid noun BIOCHEMISTRY Any large class of organic compounds with a characteristic molecular structure containing four rings of carbon atoms (three six-membered and one five). They include many hormones, alkaloids and vitamins. Say what? The above, I imagine after choosing a life of easy culture and civil service instead of biochemistry, is a fairly crude […]
It’s been two months since I last published a blog and let me tell you this, it has been quite the two months. After having this wretched disease for over five years, I thought little would surprise me. Well, I expected the whole looming death part to have a different trajectory to the routine I […]
It has been a mere 16 weeks since I started my trial, which now consists of fortnightly doses of Daratumamab, steroids and an antihistamine. I say ‘mere’ in an attempt to justify the fact that there have been no blogs for nearly that entire period. On the one hand, mere sums it up nicely. The weeks […]
Last Saturday was a huge day in my life history calendar. Six years ago I was diagnosed with multiple Myeloma. Each year that passes makes that day, 4 Feb 2011, more and more significant and makes me more aware how lucky … Continue reading →
I didn’t realise how long it has been since I last wrote. Christmas was quiet but very good. My levels continues to rise. I did more Revlimid and my consultant added in the dreaded Dex at 40mg. But to no avail. We have decided that I should go on Pomalidomide. It’s the next iteration from […]
“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, … Continue reading →
I have been pondering in recent months the following question, it’s a question that goes round and around my head until I am down the well worn A road wondering about the point of my existence. It is a question that comes without innuendo despite the way I have decided to word it. It’s a […]
Yet again it has been so long since I last posted that I am having to play catch up. Time has passed so quickly, the exceptionally mild winter moved as swiftly as the swallows and swifts arrived into an early … Continue reading →
Swim – Madder Rose
Previously, on Dial M…
Chapter two: The heroic bit (Recovery! Set backs! Perseverance!)
Chapter three: The euphoric bit (“Normality”! The wonders of living!)
We pick up the plot…
Chapter four: The confusing bit.
|Foggy on the beach (Camber Sands)|
Since I started to relapse, late last year, its been hard to work out where I’m at. I’ve suffered a range of pains and symptoms which could be myeloma, or as much my own imagination. Two weeks ago I had what I can only describe as a grey-out. I guess the cause was viral, and it left me feeling lethargic, weak, despondent. Recovered now, I can at least be certain the experience was real – I genuinely do feel so much better. But of whether it was myeloma, or man-flu, I’m less sure. It’s no fun for me – and none for Marisa either – to keep lurching, like this, towards the precipice. I’m increasingly daunted by the thought of going back in to treatment – reminded of what it will entail, and of how crippling it is for me, and my entire family, when I cannot function fully.
Sure enough my light chains are creeping up. But we knew that, and DrC doesn’t think that’s even very meaningful, because we don’t know what number we’re waiting for. My κ/λ has dropped again – because the lambda number is back up. DrC says he thinks the κ/λ is not worth worrying about. We’re simply waiting for symptoms. I ask him to hazard a guess how long we’ve got to wait. Among all the usual “could be tomorrow” caveats, he suggests at least 6 months. Which is quite a long time.
Last week (when the blood tests were taken) I was really quite neutropenic. We’re repeating the tests today, working on the presumption that last week’s result reflected the aftermath of my infection, in which case they should be going back up again by now. He’ll let me know, and I’ll let you know, if this week’s result is going even further down, in which case we have a problem. But I’d be surprised if that’s where the story is going.
So I’m going to take my neutropenia as evidence that when I felt grey, I was not imagining it. And that instead of disparaging myself with “man-flu” I should rename these episodes as simply “m-flu”, and just accept them as a plot device.
DrC says something nice this morning (I don’t think it was intentional). He says
“You are only at the beginning of your myeloma journey”
Which I find quite a compelling thought.
When I was diagnosed, I read that median life expectancy is 4 years. Which was sobering. Of course that number is bogus for two reasons. Firstly because it is out of date. All the drugs from velcade onwards have improved things enormously. And secondly because the myeloma cohort is mostly aged 70+. It is not news that some people die in their 70s.
Maybe we’re not on chapter four at all. Maybe this is all just the prologue?
Just over four weeks ago, on a Wednesday evening, I sat on my sofa brimming with excitement. I really do mean brimming. My cup was running well and truly over. There was so much excitement in my belly that I felt almost giddy. In me, giddiness general manifests in mumbling to myself and occasionally rubbing […]