Wednesday 26 November 2014


I'm all by myself, as I've always felt. I'll betray myself to anyone
Soma - Smashing Pumpkins

Forgive me while I go off on one, again

Safe to touch?
As my sons could tell you, there are two kinds of nettles, growing along the side of our twitten. One is the well known stinging nettle, which has evolved a nasty eponymous ability. But the other, less well recognised, is the dead nettle, which has simply evolved to look like a stinging nettle, and so gain much of the benefit, without so much effort on its own part. (It's called Batesian mimicry).

As so often, this is a bit like myeloma. No, really, it is. Hang with me for a minute...

I try to keep it together, up top. It's one of my core personality traits, I like to believe. Indeed, my inability to keep it together in 2012, when the sky fell in; the experience of losing control, was like losing part of my identity, for a while. And, since I got my shit back together, I feel sometimes normal, despite myeloma, even if others sometimes find my ability to be caustic and flippant about it unsettling.

But don't be fooled. I have not found coming to terms with myeloma easy. I do not find its lurking presence easy.

Sometimes it feels as though myeloma pollutes every facet of my life. And for that I hate it. So I was letting off steam, to one of the wonderful people the NHS provides for the explicit purpose of giving me an audience to whom to say the unsayable. Something he said put an interesting thought into my head, about the tendency to implicate myeloma in everything. Maybe some things are actually not about myeloma, except to the extent that these days everything is about myeloma.

With myeloma, I'm walking through a field of nettles. Every pain or difficulty (mental, not just physical) appears myeloma-shaped. It is easy to blame everything on myeloma. But some of these woes are not actually myeloma. They are of different origin. They have only grown to look like myeloma. They are fakelomas.

Once you know the difference between a dead nettle and a stinger, you can crash through the former much more easily. So I'm going to hunt out some of my fakelomas, and try to expose them for what they are: mere ordinary trials of life, which I would have faced anyway. Maybe that way I can trample on them a little more courageously.

I won't stamp on the real myeloma stuff though, if I can avoid it, for fear of getting stung.

Wednesday 19 November 2014


You've got to lift yourself up so high, you can't see the ground, you don't hear a sound. You've got to move it up so slow, you see it all, you'll probably fall
One Way To Go - The Verve

Checkup... KFLC=75 

Wish I'd kept my ticket *
My clinic appointment clashes this month, with dropping Lyndon at nursery (somewhat tearfully, he's still getting used to the separation) and then watching Gyles' class assembly. (Did you know that around 13,000 houses, and 89 churches, were destroyed in the Great Fire of London? Gyles does.) I break it to Gyles over the breakfast table that I can't come to assembly. He is crestfallen.

And then I think about why I go through all the hoops and loops of MM in the first place. My priorities. So, I go to nursery and then assembly. And then I am very late for clinic, and in a hurry because I must get back to nursery by 12:30. After waiting for a while, I ask the myeloma nurse to help me jump the queue.

My light chains are just a little higher. Rationally, I know this is still meaningless, and even if it is an established trend, it means nothing of itself. My light chains could rise at the rate, of a few points a month, almost indefinitely without becoming problematic. It will be the point where increase accelerates that counts. And the numbers now give no indication of that. Still, emotionally, I'd love it if next time round the score hasn't gone up again. Here's hoping it is still less than 80, come January.

I'm sure the consultant could say all these sorts of things to me, along with a thousand other platitudes, but I'm in a hurry, so I don't wait to find out. 75. Yeah whatever. See you in 8 weeks.

On the way out I ask the receptionist to change my regular appointment time so I don't have to hurry up the hill from nursery. 10am would be good.
"I haven't got 10am", she says, "how about 9:55".
Anyone who has regular hospital appointments will understand why I struggle to stifle a giggle at that.

* Seeing The Verve at The Astoria (RIP), in 1995, was one of the greatest gig experiences I ever had. As it turns out, it was only weeks before they split up (and then reformed 2 years later, and promptly made it big). If I'm passing the Crossrail building site on Charing Cross Road, where the Astoria once stood, I'm always reminded of that night. Their sound was so all encompassing and cool, the lighting was fantastic and the crowd was totally wrapped up in it. I'm glad I gigged so much in my 20s, because there were so many amazing experiences - such as Thom Yorke, in 1994, sitting on stage playing acoustically some of the songs that would later appear on Radiohead's breakthrough album (The Bends). There was a lot of crap too, but we thought it was good at the time.

If you think that you're strong enough. If you think you belong enough. Nice dream
(Nice Dream) - Radiohead

Tuesday 4 November 2014


Calcium - The Future Sound of London *

Calcium = 2.16. Apparently that does matter. Who knew.

In the melee of figures that go with having regular blood tests, I've learnt to focus on the few that really matter. Normally, that means the indicators of blood cell types, and of course indicators of myeloma. Every now and then, my attention is drawn to something else (I had a crash course in liver function indicators, many moons ago.) One number I have consistently ignored has been my calcium level. Active myeloma can cause hypercalcemia (too much calcium in the blood). But my calcium has been consistently low (hypocalcemia). This is almost certainly a consequence of the bone strengthening drugs I'm still on (though next month may be my last, with a bit of luck).

Every time I go for treatment they tell me my calcium level is low, but treat me anyway. I then take calcium supplements for a few days, before forgetting all about it for another month.

Since the summer, I have been having consistent abdominal muscle pain. This has been a site of much unpleasantness in the early days (spasms due to vertebrae damage in the beginning, and then sporadic flare ups during my initial treatment), so its recurrence has been disconcerting as well as painful (though nothing like the pain of old, when I was unable to stand up without searing agony).

I tried to put the "what if..."s to the back of my mind and focus on addressing the symptoms. After a lot of (yellow) English mustard (turmeric, which is yellow, is good for muscle spasms - among many other things, so English is better than less-yellow-French or more-added-colouring-American!), some amitriptyline** (short term relief), and a bit of stretching exercise (if anything, this made it worse), I seem to have settled on an answer... increased calcium. I've been getting through a lot of chalky calchews.

Sure enough, today's test results shows higher calcium levels than ever - actually in the normal range - and at the same time my muscle pain has gone away. The nurse today agrees the two could easily be connected. Not that anyone volunteered this fact to me until I'd worked it out for myself. Apparently - she fills in the science bit for me - mineral imbalances between in-cell and out-of-cell levels can lead to pressure, and so pain, across stressed muscle areas... so for me to experience it in my abdomen is not really that surprising.

Having myeloma is a bit like switching the body's blood machine from automatic to manual - things which used to auto-correct themselves now have to be actively managed. What a pain. Or not a pain, actually, right now.

* I was unsure whether I am allowed to put an instrumental in as my lyric quote. And then I remembered it is my blog. So I am the arbiter of the rules, as well as good taste, in this space. I can see it will pose a little problem for those of you who don't know it... So here's a link to listen on youtube. And of course, it is today's contribution to RadioM. for those on spotify.  Seminal early 90s ambient techno. And the first album I discovered while at university.

** Google's spellchecker doesn't recognise the word "amitriptyline" and wanted to correct it to "pantyliner", but I haven't tried those, so I can't tell you if they are any good for my muscle cramps, I'm afraid.