Mortalities

In the face of the Earth. In the manner of words. All reasons to breathe, all reasons to see. They are gone away again
Manner of Words - East India Youth

We're in the realm of death-literature here, which may not be your thing. As ever, on DialM, I know my audience is varied. No need to read on, unless you wish to...

Two things that have caught my attention in recent weeks:

Tom Lubbock got a brain tumour and died. His wife Marion Coutts wrote a book, The Iceberg, about her experience. She has also published a book of his diary, Until Further Notice I Am Alive, of which here is an extract. He was a writer, and the tumour progressively disrupted his speech. But I found his writing very insightful just for its observations on the experience of disease. Her interview on the radio was very interesting too - though I haven't read the books.

Paul Wolfson got early onset dementia. With his partner Lore, he recorded conversations of his experience and perspective. A programme based on these recordings was recently broadcast on Radio 4. It certainly made me think! Paul took his own life - a response to his own position, but not something I have empathy or comprehension of. My own experience is precisely the opposite: to fight for life. But in Lore's story, I found a lot of perception on the impact of disease on the other half, too often overlooked.

Live longer longer

I've been down the very road you're walking on. It doesn't have to be so dark and lonesome
It's only life - The Shins

This one's primarily for my friends in the club no-one wants to join!

Myeloma kicks like a donkey. Another myeloma-buddy, and fellow PADIMACer, Deborah Bone, died a few weeks ago, after getting a momentary "all clear" from her SCT, only to relapse very abruptly indeed. Horrific news, and my thoughts, first and foremost, are for her and for her family. But it is always hard not to take it personally, too, when one knows the same monster lurks in one's own plasma. Several other friends are in the process of relapse and retreatment; some of them having been diagnosed around the same time as me. So despite my own good current scores, it is hard to keep upbeat, on the dark, lonesome pathway of mm.

The consultants always talk about "quality of life". Which is fine, but what use is quality, if you don't have any quantity?

Today, while clearing out a few unpublished bits and bobs on DialM, I found a bookmarked link to something posted a couple of years ago on Gary Petersen's hugely positive "Myeloma Survival" blog: "The longer you live, the longer you live".

Gary took survival data from SEER and used it to calculate (death rates and) life expectancy at each year after diagnosis.

We all know the bad news up front. 23% died in the first year, in the data used, and average survival was <5yrs. Though it is quite old data now and I've seen more recent things saying yr1 mortality may be down to 10%.

But the good news is in the tail. Almost half (44%) of myeloma patients survived 5 years, and over a quarter (28%) survived 10. After 10 years, only 2.1% of people with myeloma were dying each year... the same as the proportion of the general population who die each year anyway. Though myeloma patients' relative mortality was more like 7% (2.1% as a proportion of the 28% who had made it that far).

Looking on this negatively, I could point out that the average 75 year old is less likely to die next year than that. But I choose to look positively.

If you have a 7% chance of dying each year, you will, on average (median), live another decade. So the headline is right - the longer you live, the longer you live. You have a 50:50 chance of surviving 5 years with mm. If you do that, you have a two thirds chance of making it to 10. (Having survived the treacherous first 2 years, this data says I already have well over 50% chance of making it from here to 10.) If you live 10 you have a 50:50 of surviving another 10. And presumably improving odds there-on. Until other factors come in to play, of course. The myeloma patient's objective being, ultimately, to die of something else. It's worth bearing in mind as well that not only does the data pre-date some recent treatments, but also that it doesn't factor for age. Given average age at diagnosis is c.70, (and 10% of diagnoses are in people aged 85+) one can assume that those surviving 10+ and 20+ years are disproportionately from the younger end.

This is no consolation at all, I recognise, to families of people who die. Nor is it much consolation to those for whom repeated treatments don't achieve good remission. Nor much consolation for any of us during periods of relapse - when we are at real, immediate, risk.

But it should massively cheer us up when we are in remission. Our life expectancy is actually increasing by the minute! Which is more than most people can claim. The survival curve for the population as a whole drops more steeply as time goes on, whereas (for a while) ours is at least curving the opposite way.

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.

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.

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.

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.

Flashbacks

So I'll continue to continue to pretend, my life will never end, and flowers never bend with the rainfall
Flowers Never Bend With the Rainfall - Simon and Garfunkel

Day 14 : ... Haemoglobin 9.3 ... Neutrophils 0.18 ... Platelets 19 ...

Sustained progress, and hallelujah to that. I'm desperate to get home. Desperate for life to return to normal, and to forget about myeloma. Except, of course, I can't and won't. It's surprising how much work I need to put in to rebuild my physical condition, after a year of inactivity. I'm working hard, with my physiotherapist (though she doesn't seem to pull her weight; she just stands around talking), to gain a bit of stamina, tone a few muscles, and stretch my back, which has been locked in spasmed muscles for so long.

It will take similar effort to rebuild my mind and unlock my mental spasms.

Myeloma is a dream stealer. We live in the present, but in the context of assumptions about the future. I used to take the future for granted. Marisa and I decided, before we married, that we'd take a year out to go travelling. We put in place a saving plan (not an overly arduous one because we still wanted ample social and holiday budgets in the mean time). It took us 5 years to save enough money and to find an appropriate moment in our working/studying. All that time we had a clear picture of where we were going. While we were backpacking, we had a new view ahead: this time of settling down and starting a family. Since then, we've planned the whats and whens of our current family lifestyle, and dreamed of moving our boys on to an idyllic rural/outdoorsy older childhood. Further ahead, I have joked about seeing out our old age on a beach in Thailand. Always a plan. You may not be a planner like me, but we all have those future memories: when we picture our children grown up, or look forward to a holiday, or when we imagine looking back on our current experiences as part of the narrative of our past. All these, perfectly normal, thought processes are dependent on a cloak of immortality - an underlying assumption that the future exists. Last summer, my future - and Marisa's too - evaporated.

We're all going to die, you and me. We all know that - it's no surprise for you to read it, or me to write it, except that we don't talk much about it. But we are. Indeed, it's quite possible that you will die before me. However, knowing rationally and knowing emotionally are very different things. Faced abruptly with the rude fact of my mortality, all my dreams disappeared overnight. Suddenly, there was no plan, no memories being stored up, just existence. It is hard - hopeless - to live without any dreams. It has taken me almost a year, but I am just beginning to get glimpses through the fog. This week we were talking about Lyndon and I suddenly imagined explaining to him, as a grown up, the circumstances of his infancy. Why he spent so much time with his grandparents (a privilege, I should add). Why, unlike his brothers, no-one took him on any foreign holidays as a baby (a pretty trivial example of sibling rivalry, but I can imagine being forced to explain this). Why Dad (for in this vision I was no longer a Daddy) forgot, for a year, to complete his NZ citizenship papers (evidence, were he seeking it, that Dad's focus was elsewhere than it should have been). In this vision, not only was I alive, but myeloma was something that had happened to me, not the defining interruption of my life. It was a view from a viewpoint I have not been able to access, until now. I'm not naive enough to think that there aren't plenty of less optimistic futures for me - I will never again be able to wear the cloak of immortality. But I need to be able to have positive dreams, and I know it will take mental physiotherapy to stretch my mind to do so. I'm working on it.

I'm aware this is all a bit heavy going, after the last few days' lightheartedness, but this myeloma business is complicated stuff.

Worse

You thought you'd set the bar, I never tried to work it out. We just lit the fire and now you want to put it out. You gave it all you got, and what you got is not a lot
Default - Django Django

Day 11 : ... Haemoglobin 8.3 ... Neutrophils 0.03 ... Platelets 8 ...

Despite the title of this post, I'm feeling pretty good. I can hardly sit up without feeling dizzy, but I continue to feel the chemo recede - I even successfully order and eat a curry this evening. They ply me with meds, and a platelet transfusion this evening. Sometimes there's so much stuff - at the rate they're giving it to me they must think I'm applying anti-fungal cream to my groin with a dessert spoon.

When they tell me my scores I comment that my neutrophils have gone up. They laugh. 0.01 and 0.03 are two shades of zero. Still, I'm optimistic they will be up more tangibly tomorrow. There's talk of me being home next week.

Marisa reminded me today to go on my email - I'd forgotten for several days - and I am stunned (and delighted) by all the messages. There were a lot of responses to when, the other day, I said that "things could always be worse". Let me explain what I meant, because I meant it literally.

At the time I had two people's stories going through my mind. One, a friend of a friend, is dying of bone cancer. The other, a myeloma sufferer who is younger than me, has had her stem cell transplant delayed because her cancer has relapsed. (They both write wonderful honest blogs, though they don't pull any punches.) I also had in mind the drama I am occasionally aware of around me in the ward as the medics attend to someone who has "crashed". People die in haematology wards.

Do other people's trials make mine any lesser? No. But I'm not vain enough to pretend that my trials are anything special. I've been a little morbidly fixated, these past months, by hideous turns of fate: being killed by a falling helicopter while on the way to work or being beheaded by a lunatic while out shopping, to pick two recent examples from the media. I'm not talking probabilities here, because these are all very rare events, but I am talking possibilities, because they are all real. Helicopter crashes, and bone cancer, and deranged beheadings, and myeloma, are all real.

And I'm not using the word "worse" as a euphemism for dying, because there are worse things than death or bereavement. Or at least, their are worse forms of death and bereavement. Go read "First they killed my father" by Luong Ung, a child in 1970s Cambodia, or "Wave" by Sonali Deraniyagala, who lost her parents, her husband and both her children in the tsunami in Sri Lanka.

So when I said "things could always be worse" I wasn't being stoic. I was stating a fact. And to be honest, I wasn't thinking so much of me, as of you. There are a lot more of you than there are of me. All our lives are full of challenges, and we all have times when we feel sick, or down, or stressed, or angry, or frustrated, or unappreciated, or lonely, or tired, or persecuted, or bored, or just simply pissed off. And the only thing we can do, is pick ourselves up, dust ourselves down and just get on with it. Because it could be worse. A lot worse.