Thursday, 12 December 2013

Melodrama

His body abused, but his mind is still free. Are you so blind that you cannot see?
Free Nelson Mandela - Special AKA

Two trips to hospital this week. The first an "emergency" (see below), and the second for my monthly tests and bone drugs. In all the excitement, I forgot to ask for any of my results, beyond that they are "OK, no different from last month"

It was Gyles' birthday party at the weekend. But I'd been brewing a cold all week and woke up with a temperature of 38C. We agreed I should phone the hospital.

Does this sound overcautious? It does, a little, to me. But... well, I'll spare you the scare stories (you can imagine how they end). I know that my immune system is still compromised. My neutrophil counts are good, but neutrophils are "non-adaptive": they fight generic infection. If I happened to get something my neutrophils couldn't deal with, I would be reliant on my adaptive immune system (the bit that learns and remembers), which is led by lymphocytes. My lymphocyte levels are still very low (myeloma is a disease of lymphocytes).

On top of that, if just so happens that last week I'd certainly been exposed to more infection risk than normal, as I spent half a day digging out a blockage in the pipe to our septic tank (of which, best no more said).

Still, I was reluctant to make the call, because I knew what would follow. And sure enough it did: a trip into hospital, three hours sitting in a ward having blood tests and waiting for results, in which nothing particular showed up, being prescribed antibiotics, and sent home.

One of the nurses managed to alarm me a little further by saying it was good I'd come in now, because at least if anything flared up and I needed to be admitted, I'd probably be home again for Christmas. I'm not sure if that was meant to be reassuring?

Having by now missed the party, I got home and went back to bed. I've learnt this last years that it is usually better to rest when I feel ill, rather than battle on. And sure enough, on Monday morning I felt much better.

Better except for the frustration at missing the party, and the lurking suspicion that I've just had a textbook case of man-flu. It's ridiculous, really, for me to accuse myself of hypochondria, but that's what it feels like. Not that anyone else has accused me of hypochondria, I should clarify. The doctors all took me perfectly seriously. My parents – who had come for Gyles' party – were helpful and sympathetic, and poor Marisa, on whose head it all fell, as ever, got on with everything with the same grit and determination as always. She's had practice, of course, but that can't make it easy. Certainly doesn't make me feel any better about the whole pathetic charade. Even the children take it in their stride – Gyles seemed totally unphased by my absence from his party.

I hate myeloma, in the little things as much as the big things, that it does.

Monday, 25 November 2013

Equals zero

I remember seeing someone dressed in a suit, looking like a lunatic. And we all fall down. There's not enough hours in our trip
Whippin' Piccadilly - Gomez

Check up (from 11th Nov tests): ... Haemoglobin 12.3 ... Neutrophils 2.31 ... Platelets 215 ... Kappa FLCs 69 ...

My head has just about recovered after my last trip to clinic 10 days ago (see Crapulous). What was worst about the whole thing was the unexpectedness of it. Sorry if, via DialM, I inflicted some of the same impact on you. The consultation started so abruptly:
"I'm involved in a clinical trial of allogeneic transplants. I wanted to see you because..."

Given that I was there to get my monthly numbers, I inevitably finished that sentence in my own head
"...your myeloma is relapsing"

What transpired, after a bit more waffle, though, was that his thought process was actually proceeding
"...you had a transplant recently, and that's my recruitment cohort"

In order words, he wasn't thinking about me at all, really. Which is quite annoying and insulting. But it's hard to complain, because I certainly would prefer that doctors want to discuss things with me. I don't want "grumpy, do not disturb!" on my medical notes. Still, I wish doctors had more training (in some cases any at all would do) in what we in the trashy trade of marketing would call "consumer-centric" thinking.

In the end, the conversation was a good one. But I would have loved it if he'd started up front with what matters, most immediately, to me
"The good news is, your light chain scores are still stable"
He never said that, though they are.

Even better, he could have emailed me in advance
"I'm conducting a trial on allogeneic transplants for people who have recently had auto transplants. Given your disease profile, and your current stable remission, we will probably decide that now is not an appropriate moment for you to have an allogeneic transplant, but I would like to discuss this with you..."
That would have been really good. But I think I will be a long time dead before the NHS achieves that kind of patient management.

In the meantime, I have to be grateful that they are thinking about all the possibilities, and just roll with the punches.

Anyway, in my rush to get it all out of my head, I forgot to pass on the crucial information to you. My blood counts are stable – improving actually. And my light chains remain low: they seem to creep up 3 or 4 a month, which is well below the threshold for any significance. So hurrah for that.

News equals zero. As all good equations should. Though sometimes, it doesn't quite feel like that, does it?

Friday, 15 November 2013

Crapulous

We’ve been dancing with Mr Brownstone. He’s been knocking. He won’t leave me alone. I used to do a little but a little wouldn't do it so the little got more and more
Mr Brownstone – Guns 'n Roses

Find myself discussing the area under a curve today. Gets me thinking about my sixth form maths lessons, and "crapulous" as we used to call calculus. We were so very droll. We had mutated song lyrics for all our teachers. For Mr Brown, who look applied maths, it went "We've been working with Mr Brown / He's been teaching but we don't understand / I used to do a little but a little wouldn't do it, so now I don't do any at all" and so on. Ha ha.
Gyles informed me, with some conviction, the other day, that all maths is easy. I explained that the wonder of maths is that it just goes on and on, so no matter how good at it you are, there comes a point where you have no idea what they're talking about, any more. Which is a bit like myeloma

"You have interesting cytogenetics", says today's consultant.
Interesting, in this context, means complicated and unusual. It is not a compliment. Myeloma cells have damaged DNA (otherwise they wouldn't be cancerous), but not everyone has the same mutations. To add to the confusion, there are increasingly sensitive tests, and more sensitive tests will show more things up (because myeloma cells are actually not all clones, but are colonies with different mutations, and they continue to mutate, for the worse, as the disease progresses). Something which is significant when found using an insensitive test may be less significant when only found using a more sensitive one. Testing capabilities have come on so fast that these tests produce more data than anyone can interpret, but there are a number of regularly found mutations, and for a few there's evidence to show they are associated with poorer outcomes. Of all the common mutations, two are particularly seen as risk factors: "t(4:14)" – where bits of chromosomes 4 and 14 have swapped, and "del(17)p" where part of chromosome 17 is missing. I have del(17)p meaning (as my test results bluntly put it) that my myeloma is:
"high risk, associated with shorter OS". Where OS means overall survival.
I did know this already, but today is the first time I really discuss it with a doc.

On the other hand, we look at my beta-2-microglobulin levels today. I've read other people's discussions of these before, but never known the significance. ß2-M, I learn, is involved in protein turnover. More of it indicates more protein activity, i.e. more myeloma. Mine, at diagnosis, was 2.6mg/l. That's not normal (which is <2), but it is nowhere near the thresholds for the International Staging System of myeloma. So I am "stage 1" on this measure, with a median OS of 62 months (vs just 29 months if I was "stage 3").

So we don't really know what kind of beast my myeloma is – aggressive or indolent.

We go on to discuss my remission. He measures my light chains vs pre-SCT, rather than pre-chemo and so assesses I've had only 90% reduction, which he calls "very good partial response", which is not "very good" at all, when I've been considering mine a "complete remission". But it does depend on where you measure against – the last time I had this discussion we measured vs my levels at diagnosis, which represents a much bigger fall. It occurs to me that, given myeloma's continual progression - meaning it may secrete less over time; and the amount of treatment - meaning there's no longer a meaningful baseline; that we can never really know what we're measuring against, any more. So all the percentages are unhinged. The other test of my myeloma activity – from the bone marrow biopsy – is clear "morphological remission".

So we don't really know what my myeloma is doing, right now. Except I don't seem to be suffering, and nothing seems to be changing.

Finally, we discuss treatments. He's involved in a clinical trial about "mini-allo" transplants. I ask about the difference between that and a "full-allo". Basically, it comes down to how you think transplants work, and why donor (allogeneic) ones might be curative when "auto" ones are not. If you think, as some do, that the aim of an allograft is to destroy all the myeloma in the body, and then put in "clean" stem cells, then it is important to really blitz what's there – we're talking chemical warfare (high dose melphalan) and nuclear warfare (total body radiation).

But if you think that these treatments rarely eliminate myeloma completely; that the problem isn't that one's own stems cells are contaminated with myeloma; and that the benefit of a donor is that the "graft vs myeloma" effect may be what cures, then it's less important to be so aggressive. There seems to be evidence emerging that a mini-allo can be as effective as a full one, provided that consolidation treatment is taken in the months while the immune system is suppressed, to keep the myeloma down until the graft takes hold. (That means having the transplant and then some chemo – probably bortezomib or lenalidomide – in the months immediately after, but let's not dwell on the practical implications of that.) The long and short is he reckons this can deliver similar long term outcomes, at lower risk. (Lower, not low.)

At this point all I can observe is that we've clearly articulated that we don't know how stem cell transplants work. Not bad for a course of treatment every bit as traumatic as an organ transplant or an amputation. We don't really know how bortezomib or lenalidomide work either, come to that.

What a holy trinity! We don't know what my myeloma is, we don't know what it's doing, and we don't know how the treatments work.

Yet that is the basis from which we must make treatment decisions (which brings us back to the area under the curve). But I think that must be the subject for another post, once my head has stopped swelling.

As light relief, let me tell you about Laplace transforms, and Green's functions...
A Laplace transform is a linear operator that transforms a function f(t) to a function F(s) with complex argument s, given by this integral:
By contrast, a Green's function, G(x,s), of a linear differential operator L(x) acting on distributions over a subset of the Euclidean space Rn, at a point s, is any solution of the Dirac delta function:
Taken together, they represent the point at which university maths got too hard to me. I have absolutely no idea what either of them means. You may feel much the same, after reading all this.

I get up around seven; get out of bed around nine. I don’t worry about nothing, because worry’s a waste of my time
Mr Brownstone – Guns 'n Roses

Wednesday, 16 October 2013

Bucolia

Then off goes the bell ringing through my head. Signifies that all's been said
The Bell - Villagers

Check up: ... Haemoglobin 11.9 ... Neutrophils 1.87 ... Platelets 184 ...

My test results from Monday much as last month. No plans to find out my FLCs this month, so just presuming my myeloma continues dormant.

Sitting in the hospital this week for my bone drugs, I can't say I've missed it. Each visit I notice fresh changes. The corridors have been recently refurbished. More than half of the staff in the chemo unit have come and gone. Being here is very much standing still, for me. Standing still is a lot better than going backwards, or downhill, of course. Nevertheless, losing more than half a day every month, sitting in the chemo unit, is a tangible drag. Even with my headphones on I can't help overhearing unwelcome snippets of other people's woes. She had an adverse reaction to velcade. He waits endlessly for blood results. Her chemo must be attenuated. He needs assistance to walk to his seat. And then there's me. Healthy, happy, and incurable. Fiercely independent, yet dependent on endless tests and therapies. There are charities - I can't ignore it because there's a poster staring me in the face to remind me about it - set up to "support" me and "help make life better" for me.

The bone drugs, this week, leave me feeling a bit shabby for 24 hours - for the first time in ages, I retire to bed. And then I have yet another hospital appointment - this time with a physio who is going to try and get my spine fit for running again. This is a great goal - but what a drag to have to keep working on my back day in, day out, probably for ever.

Sitting in the hospital makes me think about my progress. If you'd asked me, 15 months ago, where I'd be now (or even if you hadn't asked, because it was almost a fixation for me) I'd have painted a picture of completing my PGCE (which I have not) and then backpacking the children across Asia, before setting up home in New Zealand. A carefree existence like that is simply incompatible with myeloma. It's a tricky thing for me to even think about now, and Marisa and I don't discuss it much. A year ago we had photos up on the wall of our kitchen of our "destination". For a while they were simultaneously difficult to look at and impossible to take down. They are long gone now, replaced with pictures of happy children and holidays. It's a kind of bereavement, I suppose. We are grieving for a life that never was.

Instead, where am I? On holiday, if at all possible. After the summer en famille, kicking back in France, we just took a luxurious, romantic, child-free, weekend in Venice. We're off to Turkey next, for some autumn sun in a couple of weeks and (barring something awful happening in the meantime) planning a jaunt round The Philippines in six months: Marisa and me, our wonderful children, and some of our dearest friends. In between, I'm working, but also making time to do a share of our child care.

Oh... And we recently got the keys to a little place in Sussex, and are throwing ourselves into rural weekends. A beautiful view. A wood burning stove. Easy access to the seaside, to country walks. We've been blackberrying, shell collecting, castle climbing, bird watching. Bliss.

I feel a little uncomfortable with the new self image. Holidays in the south of France? A lifestyle job? (To use the term with which an old boss used to disparage anyone who prioritised family instead of graft.) A second home? Yikes. On the other hand I defy anyone to look at Marisa and me and even think - let alone vocalise - anything along the lines of "it's alright for some". The rest of my immune system may be compromised, but I'm largely immune to feeling guilty, any more.

Many people have warned me that it can be the time when intense treatment has ended, when life returns to "normal", which can be the hardest on the mind. Seems ungrateful really - I have much to be thankful for, after all. But when I was ill I had a clear focus - getting well. Now I keep asking myself the purpose of being healthy. Am I making the most of it? Am I being responsible, but not too earnest? Am I enjoying myself enough, but not being too frivolous? Where's the optimum balance?

While I went through the intense period of my treatment I could whinge to my heart's content about bone pain, nausea and fatigue. After months of being concerned on our behalf, it's nice for people (that's you) not to have to worry about us. So I'm reluctant to inflict my existential uncertainties on you. (I may need all your empathies again, one day... can't afford to give you compassion fatigue!) Easier, therefore, to write it. (And now I have.)

Friday, 20 September 2013

No news is

Courage to carry on. I’ve got to be oh so strong. ‘Cause it’s a long way home
Home - Rudimental

Check up: ... Haemoglobin 11.9 ... Neutrophils 2.04 ... Platelets 208 ... Kappa FLCs ?? ...

I spent much of August ignoring – not even really thinking about – my myeloma. Fatigue snared me just once, which is remarkable given the amount of cycling, canoeing and swimming I did. Not to mention the long drives, hot weather, late nights (courtesy of good friends and French wine) and early mornings (courtesy of Lyndon).

My myeloma symptoms, as I told my doc today, are largely non-existent right now. My back is still improving, though it does require regular effort on my part. The aches get less, the mobility gets more. But I'm certain it is mostly a musculoskeletal consequence of all those fractures, as opposed to being directly attributable to myeloma, any more. I do think there's a residual amount of myeloma pain in my hips (I guess that's what it is, since it doesn't seem to be going anywhere). The doc asks me about it and I explain. When I go on to say that I'm taking no painkillers, I can practically see him scratching out the notes he's been taking. Myeloma pain at a level that doesn't need medicating? Doesn't count!

It would be nice if I could completely ignore myeloma. But that is something I'm not allowed to do. I had a conversation with someone a few days ago, who I'd only just met. At the end of my sorry tale (I don't often choose to tell it, face to face, but it sort of came up in conversation) she fished hopefully for an "it's alright now" epilogue from me. Well, it isn't aleffingright. I've still got it. It still impacts my life. In very tangible ways now, my life – all our lives – are different from how they would have been without myeloma. Aside from the massive interruption while I was ill, we are making different choices, different plans, from what we would otherwise have done. Different doesn't mean any less good, but it does mean I can see the imprint of myeloma all around me.

I had my bone strengthening treatment on Monday. Things were going very slowly, and I had a school pick-up to get to. A year ago, I wouldn't have dared to unplug myself from the drip. Now, I figure I can make these decisions for myself . (I should point out that I'd had all my drugs, it was just running saline at the time.) I did give the nurse the opportunity to remove my canula for me, though to be honest, I'd do that myself too, if I needed to. I feel like an old lag in the chemo unit these days.

Clinic this morning. The dreaded numbers. The monthly tick-tock of living with myeloma. I haven't spent the week worrying about it, but it is always a distraction, nonetheless, in the days between them taking the blood and me getting the result. My blood counts are all moving in the right direction. Nearly normal white blood counts, and less anaemic. But I knew that already. What I am trying not to fixate on, this morning, is the magic number that is my free light chains, the pollution that my myeloma deposits in my blood and which tells me whether my myeloma is on the move. Not a healthy fixation. So maybe it is a good thing, when I get there, to discover my light chain result from this week isn't up on the system. Right now I don't know my light chain score. Unease, for a moment, and then calm. After all, you probably don't know your light chain score either, and that's OK, isn't it?

I feel good, therefore I am good. I just need to keep believing that my myeloma is dormant, and I can get on with my life. The doc clearly thinks so – he's told me not to come back for another 2 months. Maybe by then I'll have forgotten all about it. (Ha, ha.)

You know I said it's true. I can feel the love. Can you feel it too?
Feel The Love - Rudimental

Monday, 5 August 2013

Unobtainable

When the world surrounds you, I'll make it go away, paint the sky with silver lining. I will try to save you, cover up the grey with silver lining
Silver lining - Hurts

Dial M is off the hook

I had three more posts drafted (in parts). One about cytogenetics, one about posture, and one about grace. But they will have to wait.

Over the last week, for the first time in a long time, I've not wanted to visit myelomaville. Another friend died last Sunday, reminding me - yet again - that I have an urgent need to live.

And I've been making plans, and booking flights to all sorts of destinations (New York, Venice, Turkey, the Philippines!), all of which is easier if I avoid worrying about blood tests, light chains and tumours.

And tomorrow, we're chucking the bikes on the back of the car and heading for France.

I hope your summer is as relaxing, and free from stress, as I intend mine to be. For now, I'm dialling off.

Tuesday, 30 July 2013

Snap

There she stood, in the street, smiling from her head to her feet
All right now - Free

Sometimes, 1 in 4 chances come up

My sister and I went for tissue-type testing to see if our stem cells are compatible. These tests are looking at specific antibody generator proteins (antigens) found on the surface of cells to see if we have the same ones. Big differences would mean our stem cells would be more likely to perceive each other as "other", and attempt to kill each other. The most important ones in this context are the human leukocyte antigens (HLA). Your HLA tissue type is different from, and more complicated than, your ABO-system blood type. Indeed, I know my sister's blood group is different from mine (though if I ever did have a transplant from her, my blood group would change to hers).

One's blood group depends largely on whether one produces blood antigens "A" or "B" (determined by genes in the ABO-system) and/or "D" (from a gene in the rhesus system). There are actually at least 30 blood group systems working in our bodies, but matching for those 2 is sufficient for transfusions. I have "A-" blood because I have "A" antigens but not "B", and no "D" antigens (the "-" representing "RHD-"). In contrast, my HLA type includes my specific combination of antigens from groups HLA-A, HLA-B, HLA-C, HLA-DRB, HLA-DQA, HLA-DQB and HLA-DPB (phew!). Ideally, you want to match them all. It's why finding a stem cell donor is more complicated and rare than finding a blood donor.

When people need unrelated donors, they talk about the percentage match. You want a pretty high percentage to minimize risks. With sibling donors it is less complex. We each inherit one "set" (haplotype) of HLA from each parent. If two siblings inherit the same sets, they will be a match. If not, they won't be. So you've got to toss a coin twice and get heads each time ("Heads we inherited the same haplotype from Mum, tails we didn't" / "Heads we inherited the same haplotype from Dad, tails we didn't") - so the chance is 25%, 1 in 4. Or looked at the other way, 3 in 4 against.

But 4 to 1 runners sometimes come in.
(Do you like the way I nonchalantly blend my chance metaphors, with playing cards morphing into coin-flips before casually turning into racehorses? What's the chance of that?)

And... drum roll... the winner is...



Not sure why my sister was notified, rather than me. But fortunately, we're on good speaking terms.

And now, in all its glory, the actual test result...



"No detectable HLA mismatches"
I hope I never need it, but it's nice to know.

This gave me an interesting puzzle in confidentiality. My usual rule of thumb here is to publish my own medical details and test results, because they are pertinent (but not my IDs and patient numbers). I generally try not to name other people (unless they are online already), and I specifically try to avoid identifying my doctors by name. (However, I use my immediate family's first names where appropriate, because otherwise I'd end off endlessly repeating "my wife" or calling her "DW" for "dear wife", like all those pseuds on Mumsnet do, which would irritate us all, I reckon.) I wouldn't want to reveal any personal details about anyone else, because it's not my right to do so, and not my information to share.
So should I publish my HLA profile? I decided, on the basis that I've already told you my sister's is the same, not. My genes are not all my own.

Friday, 26 July 2013

Providence (of a sort)

I'll bleed just a little bit too. I'm an animal, just like you
Providence - Foals

Check up: ... Haemoglobin 11.2 ... Neutrophils 1.85 ... Platelets 140 ... Kappa FLCs 65 ...

These are my scores from tests last Monday. I had my monthly bisphosphonates (Zometa) at the same time, followed by my monthly clinic appointment on Friday. The usual drill.

Interpretation of results: no change since last month. My myeloma is going nowhere (though still detectable). My immune system is not quite normal - appears to still be stabilising. I am still (as ever) anaemic, which will become an issue if it doesn't improve in the next few months. Not exactly a clean bill of health, but the best I can, realistically, hope for.

Tuesday, 23 July 2013

Time and tide...

She makes the sign of a teaspoon, he makes the sign of a wave. The poor boy changes clothes and puts on after-shave, to compensate for his ordinary shoes
Diamonds on the Soles of her Shoes - Paul Simon

Time and tide... and toe nails

It sounds grand to say I had a stem cell transplant. But some transplant - what with them being my own cells. What I really had was a gargantuan dose of chemo and the stem cells merely saved my life. Melphalan (a nitrogen mustard, not dissimilar to mustard gas) is truly awesome stuff. We know it successfully bleached my bone marrow. It also frazzled all my hair follicles (on my head and everywhere else). It didn't do much for my digestive tract either. And I think it left a damaged layer in my skin - which would account for the period of itching and flaking I went through a month or so ago. It even left an amazing tide mark in my nails - which has grown out of most of my nails by now, but is still quite visible as a gnarly line across my big toes. I guess the line represents the nail growth which was disrupted by the chemo. I wonder if there are similar tide marks through every tissue in my body? My organs? My bones? My brain? I rather fear there might be!

It would be so difficult to keep accosting people in conversation and saying "look at what it's done to my toes!" But on Dial M, I can simply upload, and voila! By the time you realise you didn't want to see, it's too late. The power of a blog.

Saturday, 20 July 2013

Last taboo

Through this new frame of mind, a thousand flowers could bloom. Move over and give us some room
Glory Box - Portishead

This really is the last taboo. I feel uncomfortable saying this one evern to myself. It's about my own relationship with myeloma

I hate myeloma. It is painful. It takes up a lot of my time. It makes me, and people who care about me, sad. It prevents me doing some of the things I love the most. It makes my children's future precarious. I wouldn't wish it on anyone, though I'm quite tempted by the biblical image of it being driven, like a demon, out into a herd of swine. I guess I'm saying I'd wish it on a pig, if that would set me free.

And nothing would cheer me more than to be free of myeloma.

But if I were offered a System Restore to where I was last spring: a life where the x-ray showed up nothing, and a little bit of physio put me back on my feet; where this had never happened; would I take it? Honestly, I don't think I could.

There. I said it. What a disgusting thing to say. And before I attempt to justify myself, I'd like to qualify it by saying I'd gladly turn back time, for the sake of my children, my wife, my family and my friends. But not, in itself, for me. If that makes this any less unspeakable.

You see, through the pain, and the anguish, of the last year, I've learnt a lot, about myself, and about what matters. Forgive me going pious on yo' asses, but I am a better, fuller person for my experience with myeloma. (Mentally, that is. Physically, the only things I am fuller of are chemo and cement.) Both Marisa and I have been forced to re-evaluate everything, been forced to think about what really matters. I know Marisa would say the same as me, that overnight our lives went from having many "purposes" to having just one: to provide a nurturing environment for our children. And you know what, you can build a lot on that. It leads to a much better set of priorities.

We've also learnt a lot about our response and responsibility to others. So many times, we've had experiences where someone who either doesn't know our situation, or doesn't understand, has done or said something that leaves one thinking
"I'm finding this hard enough, without arseholes like you".
But then one looks at other people, and wonders about what issues they are dealing with, in their own lives. Maybe the rude man is having a hard day. What do I know about the trials and tribulations that other people face? Maybe the grumpy woman has a very good reason for being grumpy. One becomes less judgemental. (Though not to the extent of excusing the inexcusable - we all owe each other a basic level of respect, whatever we're going through. And I still recoil at the acts of casual, callous child abuse one sees far too often from self-centred parents in Camberwell.)

So myeloma has made me a better parent, and a more tolerant and compassionate person. The honest truth is I don't think I could give that up: I don't think I could permit myself to un-learn all of that, if that were the price of never having come in to contact with myeloma.

Fortunately though, we get to keep our memories, so I will retain all that wisdom long after my myeloma has been boxed up and vanquished, or driven down a hillside and into a lake. :-).

Wednesday, 17 July 2013

Anno pugnandi

When the day that lies ahead of me seems impossible to face. When someone else instead of me always seems to know the way. Then I look at you and the world's alright with me
Lovely Day - Bill Withers*

One year on. Still me

A year ago today, my doctor called. She introduced the word "myeloma" into my vocabulary, and told me she suspected I had it. I looked it up online and learned that it is incurable, and median survival is about 5 years (these two facts stood out from the rest). I can't really explain what it was like, to discover all that, what it was like to have the sky suddenly fall in on me. Not that I think my experience is special, or even ultimately unusual. The sky falls on us all, someday.

At first I rejected the concept of "fighting" myeloma, because the physical battle took place in my blood stream. My role was merely to take the drugs as instructed - on days 1, 2, 3, 4 and so on (I don't think they deserve to be called medicines, if we're honest). But over time, I've come to realise that the real fight is the one in my head. I'm no longer terrified by the statistics. I know that, if past outcomes are anything to go by, I may win many physical battles with myeloma but I am unlikely to win the ultimate physical war. I also know that if Andy Murray believed in the hegemony of the past, he wouldn't be Wimbledon Champion.

But the mental fight is something I can win with certainty. Because no matter what happens to me, I'm still Alex. I'm still Daddy. I've still got interests and ambitions. I've still got my friends. I've still got my sense of humour.

So happy anniversary, myeloma. I took all the drugs. They weren't so bad. I'm still here. I know you'll call again. I'll take all the drugs again, or maybe some different ones. And I'll still be here, while I can. I'll be me, regardless. You lost.

I'd love to claim to have come up with the following statement myself, but I didn't. Sums up how I feel, though:

* Thank you to my fantastic family for bringing this lovely Bill Withers lyric back to mind. We had our annual camping weekend together this month. This year's evening ents opened with renditions of Portishead's "Glory Box", Candi Staton's (or maybe Florence and The Machine's cover of) "You Got the Love" and Bob Marley's "Wings of a Dove". Campfire singing, raised to a very high level.

Wednesday, 10 July 2013

Gang culture

Floating in and out of time, in and out of space. No one else can touch us now. We're in a different place.
In a Different Place - Ride

I've been struggling, for weeks, to get my thoughts together on the taboo topic of death in myelomaville.

I mentioned, in a recent post, that it's hard to get rest in a young house. That's just one of many ways in which my myeloma experience is not "typical". If I were, as most people with myeloma are, 70 or older, I'd not be worried about rest, or children, or work. And although the "5-7 year median life expectancy" message wouldn't be welcome then either, there's all the difference in the world between wondering if you will get to meet all your grandchildren, and wondering if you'll see your own children through primary school.

Dealing with myeloma throws up all sorts of issues. The medical system addresses the most acute physical ones, but that's only a small part of the whole. Very early on, I realised I had a choice to make – do I involve myself in the "myeloma community"? For while I knew it would bring a lot of comfort and support, I also realised it would expose me (continuously) to the ravages of what myeloma does, to other people even when it is not doing it to me.

There are several myeloma forums. Myeloma UK operate a "discussion board". It's an open forum - you can visit it if you like. This is full of friendly people, and helpful advice and support. I wouldn't wish to denigrate it. But as it's a public space, one can only open up so far.

There are several groups on Facebook, which are closed and so a little more private, but they are also a little impersonal because they are big communities; because they are (statistically) older than me; and because (due to sheer weight of numbers) they are American in character. There's nothing wrong with being American, of course (and lots right. Some of my best times have been in America, as are some of my dearest, oldest friends). But American forums are prone to woot-woots and "God's plan" analyses, which don't come so easily to an Englishman.


Myeloma buddies *
And then there's the "MyelomaUnder50" club, another closed (i.e. private) space, created by a group of younger people, in the UK, living with myeloma. In the Under50s it is easy to talk about the challenges of parenting, and the pressures of work. It's acceptable to say "fuck" and "bugger". And it's OK to medicate with red wine. If it weren't for the Under50s, I'd probably have lost my mind. Emotional support is a valid form of medication in its own right.

About 4 people per 100,000 are diagnosed with myeloma each year. But only 2% of those diagnoses are among the 50%+ of the population who are under 40. There are around 50 diagnoses of myeloma in people under 40 in the UK each year. Your likelihood of getting myeloma before you are 40 is, in total, about 0.005%. It is very in character, for me, to get a rare, complicated disease. I recognise that. But it's quite lonely too.

But with the support, comes the exposure. To let you into one of the nasty dirty secrets of myelomaville, every now and then someone in one of these communities, who I've exchanged messages with, and been inspired by, dies. It's not an easy thing to respond to. Part of me is full of grief. Part horror. Part guilt. Part relief. ("I've lost a friend"/ "That could've been me"/ "It wasn't me"/ "Thank goodness it wasn't me" respectively.) Part of me wants to put my fingers in my ears, shout "LA LA LA LA LA" and pretend the whole thing isn't real. Part of me wants to walk away from the myeloma community, so I can kid myself that this miserable shitty disease isn't what I know it is.

But another part of me knows how futile that would be, and how much support I get from knowing other people are living with - and through - difficulties alongside me. (And I sincerely hope no-one will ever walk away from me or Marisa, just because we're too much to cope with.)

I've been trying for weeks, to think how to put this into words. Thinking of Hugh, Pamela, Paul, Steve and their families.
Steve's death was almost the first thing I read about on the Under50s club forum. You don't get a gradual, gentle introduction, with this disease. I never knew him – he died a few weeks before I was diagnosed. But I still feel a bond.
Paul was an optimist, and went by the wonderful tag of "Outdoor Paul" because he loved doing outdoor things. He had an SCT, and appeared to be in recovery. On the day he was taken ill the last time, he'd just enjoyed a 5 mile walk on the moors. And then he got an infection and died.
Pamela lived with myeloma for years. She was a devoted mum of small children. Her myeloma was unrelenting. She took every treatment regime imaginable, but got only short remissions each time. She knew what was coming.
Hugh was in full remission from his SCT, and getting on with life. And then one night, without warning, he died.
They were all my friends in need. They were my brothers and sisters through myeloma.

I can't do any more, really, than to pay tribute to the strength of their human spirit. Here's to those living with pain and tribulation, myeloma or otherwise, in life or in grief, and doing so with grace and fortitude.

I'll be honest and confess that all this was so much easier for me, a even just over a year ago, when I still thought I was invincible and didn't really give a shit.

Even if I live another 40 years, and my myeloma proves less powerful than modern medicine (which I fervently believe it might), I'll always carry the scars of my mortality, and the friends I have made and lost, along the way.

Our church has a corner for lighting candles - it was not part of my own tradition, but I have grown to love it. I've taken to lighting two candles each time I'm there. One for people with myeloma, one for people enduring other horridnesses. One for people I know, one for those I don't. One for people I'm thinking about, one for those I've forgotten. One for me, one for you.

* These myeloma buddies were designed by Paula, another "Under50". Sadly, Paula died last year.

Tuesday, 9 July 2013

Alive

If you miss the train I'm on, you will know that I am gone. You can hear the whistle blow a hundred miles
500 Miles - Peter, Paul and Mary

A plug

There's a documentary coming up next weekend: "The culture Show - Alive: Rankin Faces Death" (10:10pm, Saturday 13th July, BBC2), about the photographer Alex Rankin and his most recent exhibition "Alive in the Face of Death". Not light subject matter, I grant you, but interesting, and taboo busting, which as you know is a big thing for me.

The Alive project happens to involve three people I "know".
Phil Kelly juggles the twin challenges of a young family and myeloma, as I do. Phil set up an "under 50s" group for people affected by myeloma, which has helped me enormously.
Lou Page (pictured) was a friend of a friend, who died of bone cancer a few weeks ago. Her writing and talking about living with terminal disease has inspired me, both for her honesty and for her ability not to be consumed by anger.
Ben Brooks-Dutton, I don't really know at all, but he lives very locally to me, has a young child and works in PR, so we share some superficial aspects of lifestyle. When his wife was killed by an out-of-control car it made the papers and put my own issues in perspective.

I know Dial M has a mixed readership. Some are looking for practical stuff on myeloma, some just checking I'm OK. And that's cool - all are welcome! But those who (like me) find this journey opens up all sorts of other complicated thoughts, might find "Alive" interesting.

Thursday, 4 July 2013

Kicking kyphosis

Whatever, whenever, however you like, 'cos this is good this is cool this is nice and tight. I mean, I like it when the vibes make my stress flow free, and keep me calm and in my centre, like a sanctuary
Whatever, Whenever - Groove Armada

11 months of severe back pain left me with substantial deformation of my spine. Locked muscles meant I couldn't straighten my lower-mid back (couldn't lean flat against a wall, for example). And my shoulders were pushed forward, restricting the movement of my neck. As someone who has a very low personal tolerance of physical imperfections (as a teenager I once cut some warts of my elbow with a pair of scissors), I'm greatly troubled by this. I've built up quite a routine of back straightening and loosening exercises (having consulted no less than 5 physiotherapists). I thought I'd post up what I've learnt, since I know posture is a not uncommon problem with myeloma. I do a combination of these, each day.

Each of these exercises should be repeated 10 times. Do them in a sequence that suits you. And do the ones you think help your posture most - I don't do all of them all the time. If you can't do them all at first, start with the ones you can do. If you can't do them fully, or can't do them 10 times, do what you can. Over time you'll be able to do more. Exercise to the point of stretch - which will make your muscles ache a bit - but not to the point of pain. I'm a work in progress myself: I'm better at some of these than others.

I am not a physio expert, just a patient. I have found these exercises helpful, but you must make your own judgement, reflecting your own situation, at your own risk. Be sensible. Myeloma bodies are fragile.

Ex1: Arm stretch
Helps open up the chest muscles
Either: standing, raise the arms forward in a circle until they are (if possible) above the head. Hold and release.
Or: lying on your back, raise the arms in a circle until they are behind you – if possible flat behind you. Hold and release. If you can't reach the whole way, simply reach as far as you can.

Ex2: Windmill
My latest permutation of Ex1 - a more pronounced stretch
Lying on your back, rotate both arms out to the sides like a windmill, until they meet behind your head, keeping your hands on the floor as far as possible, and then as near to it as you can, with elbows straight, until they meet. Then bring the arms up in the air and over until they are by your sides again.

Ex 3: Chest extension
Helps open up the chest muscles
Standing, hold both arms straight out in front of you, palms up. Bend each elbow 90 degrees so from shoulder to elbow stays horizontal but from elbow to hand is pointing upwards. Move the elbows apart, as far as you can so that each arm is moving round to the side of the body. If possible, move your arms so that your elbows are level with or behind your shoulders. If you can't go that far, go as far as you can. Hold it there for a few seconds and release.

Ex 4: Chicken head
Helps loosen the upper spine
Standing with your shoulders and arms completely relaxed by your sides, move your head forward, keeping your chin level, so that only your neck is moving. Then move your head back, again keeping your chin level and shoulders relaxed. Then release.

Ex 5: Resistance band
Strengthens the muscles between the shoulder blades
To do this, you need a resistance band – like a big rubber band – attached to something strong (such as round a door handle), so that you can pull on the other end.

With arms so that elbows are by your side and hands out in front of you, hold the free end of the resistance band in both hands, with the band taught. Pull your elbows back, so that you are stretching the band. Hold and release. The trick is to keep your shoulders loose and down, so that the pulling is happening from the muscles across the middle of your back between the shoulder blades (you can feel it when it's right)

Ex 6: Lumber roll
Helps loosen the lower spine - one of my physios said we should all be doing these
Lie on your back. Raise your knees up so that they are directly above your pelvis. Your feet should be off the floor but pointing downwards. Keeping your pelvis reasonably flat, rock your knees to one side as far as is comfortable. Hold for a few seconds, then rock your knees to the other side as is comfortable. Hold for a few seconds, and release.

Ex 7: Restricted rotation
Helps open up the chest and loosen the mid spine
Stand in a door way, facing into the room, with one arm out to the side, raised and bent so that elbow is level with shoulder and the hand is pointing upward, with arm from palm to elbow resting against the outside of the door frame. Rotate your upper body away from the arm that is against the frame, keeping your pelvis stationary. Your arm will therefore be unable to move because it is restricted by the door frame, and so pull the shoulder back and open the chest, as you rotate. Hold and release. Repeat for other arm.

Ex 8: Arching the back
Helps regain lost lordosis (curve of back)
Lie on your back with your knees raised but feet still on the ground. First gently raise your bum off the ground – this rotates your pelvis forward. Hold and release. Then lower your bum and gently rotate your pelvis backward so that you arch your back – lifting the small of your back off the ground. Hold and release.

Ex 9: Pelvic rotation
Helps loosen the pelvis - similar movement to Ex 8, but potentially easier to achieve
To do this, you need an inflatable exercise ball that you can sit on.

Sitting on the ball with both feet flat on the ground, rotate the pelvis forward gently so your bum moves forward on the ball – but keeping your back stationary. Then rotate the pelvis backward, so your bum moves backward, but still keeping your back stationary.

Ex 10: Doggy style
Another way to practice rotating the pelvis
On hands and knees, alternately rotate the pelvis forward, raising the middle back upwards, and then rotate the pelvis backwards, lowering the middle back downwards. The trick is to try to isolate the movement so that only the pelvis and spine are moving (you are not trying to do press ups). A physio friend long ago told me you know (as a man) when you are doing it right because the motion is similar to sex!







And... relax!

Tuesday, 2 July 2013

Exposed

You may not see things my way; like my methods or my reasons; but you can't tell me that I'm wrong
Bluetonic - The Bluetones

A bit of introspection, about my exposition

Another week passes. I recovered from my fatigue, and I'm feeling pretty chipper. I'm going to write a separate post about the continued diligence needed to put my spine back in shape, but enough of the physical stuff, for today I am mostly in my mind.

At the weekend I had another two social events (quite the whirl, aren't I?). On each occasion I had the unusual experience of conversations with people who were a lot more genned up on me than I was on them. I'll be honest, there were a few moments where I was frantically trying to patch together our shared histories, at a slight disadvantage because the rest of the world hasn't been posting up the finer details of life online. Or if you have, I haven't been reading.

I do wonder - and I know Marisa does more than me - about the merits of having put my balls so firmly on the table (sorry to disabuse those of you with purer minds, but that is not a ping pong metaphor). Writing my myeloma down, and up, was intended to diffuse conversation, and I think it has been successful in that. I guess it's inevitable, now I'm able to get face to face with so many people I haven't seen for a while (and believe me, that's wonderful), that Dial M becomes, for a moment, the trigger of conversation. Such are the perverse consequences of our actions.

Why have I done all this? Because I've learned a lot about honesty, and the perils of sweeping unpalatable topics under the conceptual carpet of euphemism and awkward silences. And I say "Poo!" to that. (Don't worry, I haven't forgotten, I owe you more taboos... a little one now, and two more coming soon.)

Yesterday, I took my sister to the hospital for tissue type tests. We're doing this now because she is in the country, not because there is any plan for me to have any treatment. The tests will tell us if our stem cell types are compatible, should I ever need a stem cell donor. It's a 1 in 4 chance, so we should all be expecting the answer to be no. I felt I needed to say to her now - so that it doesn't go unsaid - that one of the purposes of stem cell donation is to induce a "graft vs host" effect where the donated stem cells would kill off my myeloma. And that the risk is that overzealous donated stem cells get carried away and kill off me. I think that's better said than ignored, because ultimately, we (souls) are not the same thing as the DNA which sustains us. My sister's stem cells are no more her spirit than my myeloma is mine. And she is no more responsible for what they do than I am for the stupid tumours which destroy my bones.

She seemed very calm about the whole thing. I've been surprised by how much it affected me, when I thought about it afterwards. This is all such serious shit, and much of the time now I manage to forget that.

This little exercise of mine in exposition (and I think it is that, rather than exhibitionism, but really, you should be the judges) takes me to surprising places. (But most often, it takes me to hospital.)

Live

Turn off your mind, relax and float down stream
Tomorrow Never Knows - The Beatles

What was the theme of this blog again? Was it "Alex yacks on endlessly about music"? No!?! You mean I've actually got to slip myeloma into this somewhere? Really? Well, if you insist, here goes...

Went out to a gig last week (thanks, bro). Only the second concert I've been to since things went pear shaped last summer (oblique reference to disease there, in case you missed it). Last time round (The XX, Brixton) I was standing, and had to simply wait for my whole back to go numb (another hint, for those in the know). I was also packed full of painkillers (nudge, wink). And I had trouble moving the next day. This time (Tame Impala, Hammersmith) we were seated. When the tickets were bought, who knew what state I'd be in by now (ahem).

I fared much better this time, and it was a better gig too (sorry Romy, but it's true). In fact, it was an awesome gig - the best I can remember since I saw Local Natives 3 years ago, but I digress (this doesn't appear to be directly relevant to disease - Ed). These events all come with extra layers of meaning for me now - in this case, pleasure that I'm just doin' stuff.

For an encore they played a song called "Nothing That Has Happened So Far Has Been Anything We Could Control". It's felt a lot like that, this last year. But less so now.

The point I am making here is it is very easy to talk about myeloma all the time. But increasingly, it is easy not to, too.

Nothing that has happened so far has been anything we could control. I have just been waiting for the perfect time to tell you that I know. Every man is happy until happiness is suddenly a goal. I'll just be here waiting 'til the doctor calls and then I'll let you know
Nothing That Has Happened So Far Has Been Anything We Could Control - Tame Impala

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
"Good."
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

99...100

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

Invisibility

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

BoMB

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.

Tuesday, 21 May 2013

Born again

Good shit's all around, good people. Don't let it get you down, good people. Good shit's all around. It's all about
Good Shit - Cornershop

Day 75 : Are we still counting? (Yes, obviously)

Has it really been over a week since I blogged? I'm not sure what to say.

There are two amazing things about feeling better.

The first is that it can compound on itself. One month ago, when I unplugged from the hospital, I was feeling good, except for the fatigue. But there is really no comparison between then and now. If I felt better then, that was nothing compared to how much better I feel now. I have energy now (most of the time). My  muscle ache is diminishing. I can swim 40 lengths. I can run, tentatively (on a machine, I haven't tried the unforgiving earth yet). I can go out and about largely as I please - even spend the day looking after Lyndon (we went to a play group yesterday). Even my back is much much better (though still a work in progress). But I suspect I still don't yet feel anywhere near 100% of what I can - I guess there's more dimensions of better coming.

The second amazing thing is, looking back, if I feel so much better, just quite how bad was it before? Thank goodness I was never really aware of how bad the bad times were.

It is like being reborn. I'd encourage you all to experience it - except to really appreciate it you'd have to go through the whole build up - broken back and bone pain/ velcade, steroids and high dose melphalan/ sickness and side effects/ loss of hair and digestive tract/ fevers and no immunity/ anaemia and transfusions/ fatigue and muscle weakness... Maybe not, eh?

As a celebration of rebirth, here's a pic of my azalea. In a normal year it is the first thing in our garden to flower - often before the end of March. This year it, like me, has been feeling the cold, but it is just beginning to turn heads.

Sunday, 12 May 2013

Dancing on

We live to dance another day, it's just now we have to dance for one more of us.
Long Live The Queen - Frank Turner *

Day 66 : I can feel myself improving physically, week upon week. I need mental strength too.

Not much new news in my life this week. Feeling stronger. Have been to the pool twice - once for exercise (swam 32 lengths, which I'm quite proud of) and once to lark about with the children. Even managed a few minutes running on the machine at my gym group. The first time I've run in over a year (and my skeleton didn't collapse, I'm pleased to report). Still getting a lot of back ache, but also finding it just a little less difficult to lie flat when I try to. Getting increasing capability to do things that bend and twist my torso without suffering too much as a consequence. Fatigue is still an issue. Spent all of Wednesday and half of Friday lying down. But that really is par for the course, I think. Still having some issues with my skin. Crazy itching (I think this is my body hair beginning to regrow). And unannounced attacks of lizard-face from time to time. So that's me.

I discovered on Tuesday that Hugh Sutherland, a friend and fellow traveller in myelomaland, has died. I knew Hugh only through communication online - but I feel an inevitable bond with everyone fighting myeloma, which accentuates these friendships. Hugh was in remission after a stem cell transplant, so as well as being horrid, sad news about a friend, it was also unsettling news for me personally, in remission from my own stem cell transplant. I've been thinking about it a lot all week. I'll try to describe my feelings to you, but you'll have to wait until I can sort them all out in my head and express them eloquently. Right now my thoughts are with Hugh's wife Karen.

* Another friend with myeloma shared this lyric with me, as his own response to losing myeloma friends. I like it a lot. I will dance for Hugh.

Monday, 6 May 2013

Empathy?

Some people can't relate and others have a lot to learn. I don't want to spin my wheels, I don't wanna let my stomach squirm. If it feels right, at the right time, we'll work it out. We'll be alright, I know
Anchorage - Surfer Blood

Day 60 : Enjoying the sunshine, resenting the insensitivities

I've been doing well this week. Keeping stretching (and taking painkillers too). Been out and about. Went swimming. Been to two parties (proper grown-up ones, not children's ones). Even had a day out at the seaside. (Lyndon was there too - his toes are just visible peeking out of the buggy.)

I'm still grappling with fatigue. Twice (or thrice? can't remember) this week, I've put the kids to bed, gone to "rest my back" and woken up 11 hours later. And the latest odd symptom (because the stem cell transplant process, even more than normal chemo, does seem to generate odd and unexpected symptoms) is dry skin. Mine has gone from fine (last week) to lizard-like-face (this week). Even the really good moisturisers (I'm using diprobase) make my skin sting when I put them on. I'm not sure whether the sudden onset is a product of sunnier weather, or whether it coincides with the most damaged layer of my skin finally coming to the surface. It does coincide with my hair beginning to regrow. Either cause, it's a bit bizarre.

So, not much to complain about, until someone on a myeloma forum called me (and everyone else with myeloma) a "victim". I can't tell you how angry that made me. The woman who said it has recently lost her husband to myeloma, which is hideous and awful and entirely mitigates inappropriate comments. But it still stung me. It dredged up a lot of stuff I've been thinking about for ages about the things we should and shouldn't say to each other.

First, on this theme is a thought - someone else's - about when to bitch and complain, and who to. I recommend you follow this link to an article by a psychologist called Susan Silk about what she names a "Kvetching Order". I guess in English English - where we don't borrow so much from Yiddish - we'd have to call the concept "Grumbling Rings". It's very simple, and very perceptive.

Read it before continuing with the rest of this post. (Here's the link again.)

I've certainly been on the receiving end a few times when people have muddled up the hierarchy of the Grumbling Rings. I'm quite sure I've been the protagonist on many occasions too. I sincerely hope I'm better at handling this now.

Second, is a thought of my own, about the futility of trying to make tenuous connections. In my first post, when I was just in the process of being diagnosed (a long time ago, really), I wrote
"I know the weeks ahead will bring all sorts of uninvited, but well intentioned advice of the 'my grandpa once had xxx..' variety, and that won’t help me at all."
Inevitably, this has happened many times. It's only natural to want to empathise, and most people have no experience of myeloma. The same process takes place every time someone we know faces a challenge we don't have personal experience of. As ever, I'm making no claim that myeloma is special. Far from it. Our minds intuitively scour themselves for possible comparisons: things we have experienced, or seen, that have some common features with whatever our friend is dealing with. And we find the best connection we can and come up with a proxy in our heads. Of course, it isn't a real connection, because we haven't had that experience, but it's the best we've got. So we say something like
"When I was XXX..." or "My grandpa once XXX..." or "I remember XXX..." or "I read XXX...".

Problem is, human nature is such our friend doesn't instantly spot similarities, he spots differences. That's how gut reactions work. He (or at least, his gut) misses the connection. He thinks
"That's not like my predicament at all, because YYY"
Cue instinctive annoyance at the clumsiness of the comparison. Quite possibly it feels like we're trespassing on his emotions - laying unwarranted claim to them. (It doesn't matter how tactful or gifted with words we are about this, either, because our friend is super-sensitive to the unique features of his situation.) (But fortunately, he also knows, rationally, that we're merely trying to connect with him, in the best way we can. So he keeps his peace, and our conversation moves on.) My conclusion from this is that it is futile to try to connect like that - unless we really do have a relevant experience of our own. Far better otherwise - despite our instincts - to offer compassion rather than claim a false connection. Doesn't mean we can't share stories, observations, anecdotes. Just means we need to think about how we do it.

Finally, back to why I'm not a victim. I think my first issue is with being categorised at all. I struggle in my own head with whether I "suffer" from myeloma. I'm prepared to be a "patient" as long as I'm in hospital but no longer. I'm not at all comfortable, I admit, with my relationship with "cancer". I don't want other people to tell me what I am. Even in relation to other people with myeloma I increasingly realise that all our experiences are different, and I'd do well not to project my own opinions and emotions on to others. I'd appreciate it if others didn't project theirs on me. I think there's a general principle here that's not limited to myeloma or cancer, but a truth about every day life. We should hesitate to tell other people what they are, or how they feel. Ultimately, the "victim" comment both claimed a connection with me which it's author couldn't substantiate, and simultaneously dumped in on me by making me evaluate whether or not I am a victim. I'm not. I'm not surprised I was annoyed, either.