Tuesday 25 June 2013

Pumped out

Put the needle on the record when the drum beat goes like this. Pump up the volume. Pump up the volume. Pump up the volume. Dance! Dance!
Pump Up The Volume - M|A|R|R|S

Proved a few things to myself, and maybe to others, and had a good time doing it.

I no longer have any hesitation about feeling old. I am 40. And relishing it. I'm also quite proud to have hosted two parties in two days this weekend, and survived. We proved that 90s dance music really was the best; that everyone likes a sausage; that even if you are working really hard to pace yourself all evening, you can't avoid the consequences of being plied with sambucca on the way out of the bar. And then we proved that Lyndon isn't quite the bad weather omen we thought he was, and that 15 children really can be occupied all afternoon on a trampoline - without anyone needing to go to A&E either. We also proved that us oldies find it pretty tiring if we don't get in until 1:30am, and are woken by out littlies at 6.

On the subject of tiredness, I also proved conclusively that, despite feeling much better than even a few weeks ago, I still have limits. By Sunday evening I was back in the familiar, if less often visited, land of Canhardlygetintobed. And yesterday, having spent the day looking after Lyndon (the hokey-cokey at playgroup very nearly finished me off), I was beyond even mild conversation by the time Marisa and the big boys got home. I had to retire to bed again by about 7pm.

I continue to find my experiences of fatigue very difficult to describe. It is always as though suddenly - when the adrenaline that has sustained me wears off - I am simply empty. Physically and mentally void. It's not even about sleep, it's about nothing at all. Still, it's getting easier to handle - I made it through most of yesterday before wiping out, and I was up with Lyndon at 6am again today. Only a couple of months ago this would have been 2-days-in-bed stuff.

Rest is a rare and precious commodity in a young household. Last night all 3 of the children, in turn, woke me up for one reason or another. The most pithy explanation of a problem was from Gyles.
"Ben snoring," he said, "is doing my head in".
And you mine, at 4am, my dear little boy.

Can you feel the passion, running through my veins? Driving me insane, running through my veins
Passion - Amen! UK

Thursday 20 June 2013

How do you do?

You're twisting my melon, man. You know you talk so hip, man. You're twisting my melon, man
Step On - Happy Mondays

Is it all of us, I wonder? Or is this little issue just me?

I promised a few more taboos. Fear not, no gruesome photos on this posting. I was reminded today, by Emma Jones of something that regularly irks me. This taboo is so trifling really that I feel almost self conscious mentioning it. Which is exactly why I must.

It starts the moment we meet. You say - not unreasonably
"How are you?"
You do this, I guess, out of a mix of habit, and a genuine interest in my health. Like as not, I'll reply simply
This is because mostly, these days, I do feel good. And anyway, I'm English.

What's annoying is the cracks this little word plasters over. The very next moment, I'll wince or groan or some other thing will give off a signal that maybe I'm not quite as OK as the simple answer implied. And as soon as I've done it I worry that I've made myself look like a faker.
"Hmm" I imagine you're thinking "is he so used to putting on the moans and groans that he does it now out of mere habit? Or, alternatively, is he just so jolly English that he says he's good when he's quite definitely not?"

Here's the taboo - and I don't even know how other people with myeloma really feel about this, because we've all got a vested interest, at any one time, in talking our situation up (if we're just trying to get on with life and not be dominated my myeloma) or down (if we're feeling in need of sympathy). But here's the reality. My bones don't feel like they used to. Things ache that didn't ache before. It could just be age, of course. But I have another culprit in my sights.

I asked my doc about residual pain last week. He said sometimes it takes a while to go. Sometimes it never goes. Is it just me? I suspect not. Personally, I'm only groaning about achy bones. I know other people who are dealing with the legacy of neuropathy from the anti-myeloma drugs. The sensations would be different, but the story much the same.

I'm increasingly concluding that the only intelligent course is to just get on with life, and not worry about it (I think it hurts less, when I think like that too. I've been thinking enthusiastically ever since I got my CR, and I've hardly even needed to take any paracetamol.) Now, you might be thinking, reading this, that I'm in terrible pain. I'm not. Sometimes I have little moments, that's all. They are nothing compared to what I've experienced. Nothing to complain about at all really.

In fact I'm not complaining... Except to say this is an awfully long, convoluted, circular and unsatisfactory answer to that simple question "How are you?" But it's the best I can do, so forgive me if I mostly skip it, when we next meet up. That's assuming you were asking how I am on a physical level. Maybe you were thinking about my mental health? On that front things are a bit more straightforward. I am the me I always was. Except sometimes I remember I've got myeloma (normally when my bones ache), and that messes with my head, a little.

This is all a bit complicated, isn't it? I wonder if you understand what I'm trying to say? Perhaps it would be easier if I'd never brought the whole thing up.

With 2 major social events in the diary, I'm going to see lots of people this weekened who I haven't seen for ages. I realise now, that none of you will know how to greet me, having read this. May I make a suggestion?  We could revert to the English of times gone by, as epitomised by this little exchange from Oscar Wilde's Lady Windermere’s Fan

Lord Darlington: "How do you do, Lady Windermere?"
Lady Windermere: "How do you do, Lord Darlington?”

This has the wonderful property of not actually involving anyone answering the question. How do you do? And how do you do? And we'll look each other in the eyes, and know that we are both, basically, fine.

Friday 14 June 2013


Don't let the walls cave in on you. You get what you give. That much is true
Where's Your Head At - Basement Jaxx

Day 99 : ... Haemoglobin 11.1 ... Neutrophils 3.1 ... Platelets 110 ... Kappa FLCs 70 ... Plasma in bone marrow 2% ...

My fortieth birthday begins with a quick trip to the hospital for my "day 100 review".
"How are you?" asks the doc.
"You tell me" says I.

For those of you not fluent in myeloma measures, the numbers above translate as follows: My light chains are more than 95% reduced from when I began treatment, and have been stable for 2 months. And the amount of plasma in my bone marrow is <5% (it was >30% when I was diagnosed - i.e. a third of my bone marrow was cancer). These two factors between them, mean my response qualifies as complete remission.

CR. CR. CR. Hurrah!

It's been a long time coming.

And the other counts are all OK. My immune system is back to full strength and although I'm still anaemic, there's time for that to recover yet too.

A good birthday present, then.

I also nipped into the chemo unit for my monthly zometa (bisphosphonates) to strengthen my bones. I've had a few months off, due to my transplant. I'm glad to be back on. I'm also glad to be in the chemo unit as merely an occasional visitor, rather than a regular.

From here on I will be having monthly zometa treatments, and monthly light chain tests. And we'll wait and see what happens. Hopefully, nothing.

Thursday 13 June 2013


That's all that's left behind: the skies, and a sweet caress. He's the invisible man. Catch him if you can
Invisible Man - The Breeders

A plea for recognition and a howl of indignation

The BBC has reported several deaths from cancer, this week. Henry Cecil (racehorse trainer*) died, according to the BBC, "fighting stomach cancer". Iain Banks (author), we were told, "had gall bladder cancer". Meanwhile, the BBC said, Rory Morrison (newsreader) died after "suffering from a rare form of cancer". That made me sit up and google. Rory, I discovered, had Waldenstrom's macroglobulinemia, a rare form of non-Hodgkin lymphoma. You can easily see why the BBC opted simply to say "rare". But let me spell it out. Rory was 39 when diagnosed with a cancer in his B-lymphocytes, a type of white blood cell. He was told it is treatable, but incurable. Treatment of the disease would consist of a range of pretty savage and exotic chemotherapies, and potentially stem cell transplants.

So was I. Blood cancer.

"The father of two had been suffering
from a rare form of cancer"
And yet, Rory and I have mysterious diseases with cryptic, unknown names. There isn't even a wikipedia page for "blood cancer" - it redirects to "hematological malignancy". There are pages for stomach cancer and gallbladder cancer (and lung cancer, breast cancer and so on), with no such obfustaction ("alimentary malignancy", anyone?). Blood cancer accounts for around 10% of cancer diagnoses. That's by no means rare. The 3 most widespread cancers - those affecting lung, breast and prostate - each account for around 15%.

Bloody blood cancer.

It's Myeloma UK's "Myeloma Awareness Week" next week. I think we need that, but we also need more awareness around all cancers of the blood. Myeloma could very easily, if the course of history had been a little different, have been classified as "indolent plasma cell leukaemia", and it occurs in the lymphatic system (it is lymphoid, not myeloid, despite it's name), so maybe it could have been "Kahler's lymphoma" (after Otto Kahler). Sure, there are differences. Rory had hyperviscose blood, which won't be a problem for me, but he didn't have bone lesions. However, maybe it would be better if all leukaemias, lymphomas and myeloma were recognised first and formost by what they have in common.

Bloody bloody blood cancer.

There are euphemisms too in the words "suffering from". Rory had several courses of chemotherapy over almost 10 years, to put his cancer into remission, and to put it back into remission when it relapsed. In the end, he had a stem cell transplant with his brother as donor (a more serious undertaking than my stem cell transplant, where I acted as my own donor). He died (I believe) of graft-vs-host disease - where the grafted (donated) immune system attacks the (host) body's organs. That is a major risk of stem cell transplantation - indeed to some extent it is the aim, since it is the mechanism by which the cancer might be eradicated. Willingly taking that course of treatment is, in my mind, more brave and tough than mere "suffering". We too often draw a veil over the things people with cancer have to subject themselves to (a veil ripped aside in a heartfelt post by my friend Lori Puente). Rory, who had young children, will no doubt have made a calculation that he would rather take his chances, in the hope of a long remission. I admire the courage in that. When I see my doctors tomorrow, I will be telling them that if my own treatment plan doesn't produce a long and deep remission, then I too would want to consider that route, for the sake of not making my children live indefinitely in the shadow of bloody, effing, bloody, blood cancer.

Most of all, of course, my thoughts go to Rory and Iain and Henry's families. I saw a news report this week which said the NHS consider any death before the age of 75 to be early. Rory, Iain and Henry, and their families, were all deprived of time they could reasonably have expected to share. Any death is sad, but Iain Banks was 59 and Rory Morrison only 48. How bloody unfair.

*Remarkably, Dial M is as widely read in the US as in the UK. These names might mean less to an American audience, hence I thought it helpful to identify them a little.

Wednesday 5 June 2013


I am more than these bones. I feel love, I feel alone
Flesh and Bone - Keaton Henson

Day 90 : The indelicate subject of bone marrow biopsy

There's a small taboo in myeloma circles about talking about bone marrow biopsy. We tend to just brush it off. "It's not so bad. You get through it". There are, of course, larger taboos, such as around the meaning of "incurable", which is somewhere I don't want to go right now, though brave souls such as Pat Killingsworth do, and I commend them for their frankness (though I find it difficult reading). I've decided to post a few times over the next few weeks on taboo subjects. I've thought long and hard about this - as an anthropology student I spent a while studying Totem & Taboo, so I don't go there lightly.

Let's start with a fairly harmless taboo. You might want to skip this if...
...you've had a BMB yourself. You'll know all this.
...you are about to have your first. It's not so bad! You'll get through it! (This isn't untrue, and sometimes you are better off not dwelling on the future.)
...you are merely squeamish. It's up to you.

So why write it at all? Quite simply, part of the motivation behind Dial M is that I don't see why we should keep quiet about all the indignities of myeloma. So I'm not going to. Taboos are, mostly, better honoured in the breaking (except the ones around incest and morris dancing, to mash up several cliches at once).

The only way to get at myeloma directly is to go where it is, in the bone marrow. This is in some ways less accurate than a blood test, since it detects myeloma at one location, rather than throughout the body. But it enables genetic analysis of myeloma cells, and since myeloma can secrete at different levels, it helps to calibrate the blood test readings. My myeloma doesn't secrete much, compared to most people's, and there's some likelihood that as it mutates genetically over time, it will secrete even less, or stop secreting at all.

So, long and short, the docs like to get a sample of the real thing, from time to time. Today was the 4th, for me, in the last year. At King's there's a forlorn little room off the side of the therapy unit, especially for BMBs. You can ask to be sedated, but this requires 3 medics, takes much longer, and at King's it has to take place behind a curtain in the main unit (because the little room is too small). I've decided I prefer, on balance, to get it over quickly, in the little room where no-one can hear my moans and my "oh fuck!"s.

I go in the little room, with a doctor who is in the impossible position of trying to make small talk when we both know what is coming. She goes through the consent form. The main "risk" of BMB is pain. Risk? More like raging certainty. And she (always) makes sure to warn me that one risk is that it might be "unsuccessful" and need to be repeated. Oh joy. Then I sign the form, and lie on the bed, facing the wall, curled in a foetal position, with my trousers slightly lowered, waiting politely to be violated.

I've always had my biopsy in my sacrum, which is the triangular bone in your pelvis that attaches the hips to the spine. If you feel round from your hips towards your back, you'll feel two points of bone, just below the small you your back, either side of your spine. These are the corners of the sacrum. The doctor starts by feeling to find one of them, where she applies local anaesthetic, not just at the surface, but all the way down to the bone.

There are two parts of a bone marrow biopsy. First comes the "aspirate", which involves a needle right into the bone, from which about 5ml of liquid bone marrow is extracted. This is by far the most painful bit of the process, because one can feel the sensation all through the sacrum and down the leg too - like a sharp twang of sciatica.

Second is the "trephine" which involves a needle taking a sample of solid bone marrow. This uses an instrument with a cylindrical blade - it is driven into the solid marrow, twisted, and pulled out. This isn't so much painful as uncomfortable, because it means having one's bones directly pulled on.

Next, my favourite bit, is the moment when the doctor tells me that my solid sample isn't very good. Indeed, today, I can feel the trephine slipping as she extracts it, presumably because the site she is extracting it from is full of holes. There follows an entirely unwelcome conversation about myeloma bone disease, and the state of mine, and then the trephine process has to be repeated.

Then, once the bleeding has been stemmed, and a dressing applied, I am able to walk home, and wait for the anaesthetic to wear off.

And that's it. According to something I read recently, we're not very objective in our assessment of pain during an experience. We tend to perceive pain as the average of the most painful moment, and the pain at the last moment. And we tend to discount completely the length of time it went on for. As a result, we tend to perceive a very short experience of significant pain, as worse than a very drawn out experience, which may have long periods of high pain, but ends with pain gradually reducing. Part of the fear of BMB, I think, is due to this, because for a moment or two it really hurts, and then it's over. Ironically, if the doctors spent another half an hour inflicting minor pain, we'd probably view the whole experience so much more favourably. Knowing that little distortion of the mind helps me to grit my teeth through the process. Today's was a breeze. But then, I've had practice.

Monday 3 June 2013

Swimming and cycling

I'll swim even when the water's cold, that's the one thing that I know*
Even When The Water's Cold - !!!
(the name of the band - if you can call "!!!" a name - is pronounced, I'm told, "Chk Chk Chk")

Day 88 : Two fat ladies! The fun we could've had, bingo calling my recovery, if only I'd thought of it earlier... "Man alive! Day 5!" and so on. Or perhaps not.

We spent half term in Somerset (this photo was actually taken in Devon). The weather was nice. We went to the beach. We went cycling - twice. One day we cycled 12 miles, which is an impressive feat for Gyles' little legs, and for my weak ones. We swam most days. We visited a castle/ rode a steam train/ had cream teas/ fed the ponies/ paddled in the river/ ate ice cream.

Sounds pretty normal? For me, that is a big achievement. There are aspects of normal which I find very aspirational!

I'm clearly getting stronger - I have suffered less and less from muscle exhaustion, and only resorted to an afternoon nap once all week. Sadly though, my new covering of hair wasn't quite enough to stop me burning my head the first day the sun shone!

We're getting precipitously close to the magic "100 days" since my transplant, which marks the first formal milestone in my recovery. As well as acting as a benchmark point for my response to treatment, it will also mark the end of the period of time which I pledged to focus on recovery to the exclusion of all else - i.e. not to do any work. I will need to think about what happens next - I can't remain in this recuperative lifestyle forever, much as I am grown accustomed to its charms. But there are a few hurdles to get over first - starting with a bone marrow biopsy later this week. So a few more gritty posts will follow shortly.

But just for now, I can almost pretend I am normal.

*Figurative swimming, that is. We had a pool at our holiday cottage, but I didn't go in the sea, which was proper cold, this week, though I did paddle in the river. As a general rule I do like swimming even when the water's cold. Marisa would consider it one of my frustratingly English foibles. Bracing dips in Lago Gutierrez in Argentina, Lake Solitude in Wyoming and Lake Atlin in British Columbia all spring to mind as exotic examples of the urge. As do sea swims in Tasmania in September, New Zealand in April or the Isle of Coll even in the height of summer. I even swam in Antarctica once, though that was volcanically assisted. I'd have been straight down Minehead beach, into the freezing Bristol Channel, really I would, if only I had a little more haemoglobin pumping around me. I think it won't be long now before I'm ready to open the pages of "Wild Swimming" again.