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