Friday, 21 September 2018

Epilogue eleven

This is the end, beautiful friend
The End - The Doors

And that’s it. Fin. (There may be a role for some brief updates in the future - we’ll see.)

Last year, in Japan, we visited a theme park in the city of Beppu, in Kyushu, It boasted of being one of the region's “Top 31” attractions. We had a good laugh about that. Presumably not in the Top 30, we figured.

I had been lent a book about Japan by a friend. Serendipitously, the book turned out to have been written by my anthropology supervisor from university (Professor Alan Macfarlane). So I was delighting (!) the rest of my family by infusing our adventure with ethnography.

It transpires that Japanese people actively avoid "Top 10" type lists. The round number implies, to them, that the length of the list was defined first, and then populated afterwards. What to Western eyes looks tidy, to Japanese eyes looks contrived. Where we might use the number of places on the list as a proxy criterion for judging candidates, Japanese would have to determine some other criteria for inclusion/exclusion. If a Japanese person were compiling a list, (s)he’d even be inclined to nudge the threshold for inclusion slightly in order to avoid ending off with a round number of entries.

For similar reasons, they tend not to sell things in tidy sets of 4 or 6, preferring odd and awkward numbers. (I bought a lovely set of 5 pairs of chopsticks - perfect for our family.)

There's no way I'd finish this blog, were I Japanese, with ten epilogues. And in this, they have a point. So, I’m respecting Japanese tradition, for a moment here. Because there's no defined moment when it should all cease. But somewhere, it has to.

That moment, I've decided, is here. It doesn’t really matter how. Even if it’s in the middle of a

Thursday, 20 September 2018

Epilogue ten

I think I have the best of me inside my head. No one else competes with me, I think I'm great
Eat My Dust You Insensitive Fuck - The Catherine Wheel

Enough of all this chit, Alex, how are you, exactly?

If you've waded through this far, you really must be keen to know how I am?

I finished my chemo two weeks ago and am feeling better by the day. Though my back is still sore a lot of the time.

My light chains were, last seen, around 300, which is a partial response, not a fantastic one. But good enough.

This treatment regime has been hard. As I have emerged from it, since I stopped taking the drugs, I’ve been surprised by the change. I didn’t realise quite how much it was affecting me. In particular I think the thalidomide has been really gruelling for me and I am glad I will not have to take it again. It has made pretty much everything more challenging/draining and less rewarding/enjoyable.

Unless there's a real change of plan, I am due to start the stem cell harvest mobilisation process on 28th Sept, and complete the harvest apheresis by 9th Oct. The transplant itself is provisionally due to begin on 29th Oct. Depending on the regime (which arm of the clinical trial I am randomised in to), the transplant process will take 3 or 6 days from end to end. And then there’s just the recovery; which is the difficult bit (!); and which will take months.

I will be fitted with a PICC line in preparation for the transplant (though the actual stem cells will not be administered that way). My hospital no longer routinely fits Hickman lines for SCT, as they did previously.

(Plans could change if I were deemed not sufficiently healthy to transplant, or if a significant area of stubbornly refractory myeloma was identified such that we could not class my situation as remission. But neither of those circumstances is likely.)

After the transplant, I will be out of action for most of the rest of the year - for a good chunk of it isolated either in hospital or at home. I may begin the transplant process as an “ambulatory” patient; spending my days in hospital but my nights at home. Once my immune system has been completely surpressed, I will certainly spend the subsequent two weeks isolated in hospital. After that, I will be recuperating again at home.

We are continuing to investigate the condition of my rib cage, to try to explain why I have such recurrences of pain there.

TImage result for that's all folks

Wednesday, 19 September 2018

Epilogue nine

I'm the type of guy to boost your self esteem. We party all night cos it's you, you, you everyday. Self obsessed and sexxee all the way
Self Obsessed and Sexxee - Sonic Youth

Relationship under construction

I don't feel I've been able to be a good dad, husband, son, brother, friend or neighbour, this year. A number of people have been very supportive to us, and I've been very grateful for that, with no sense that I've any ability to give anything back. Sometimes it is easier to withdraw - to read the newspaper on my phone, or stick my headphones on - than engage with other people when I don't have much to say, and when I feel as though all I "contribute" is to drain away life and energy.

There's a lot of relationships I want to rebuild.

In particular, Marisa has to put up with every single up and down of my "journey". When my myeloma is being intensely physical, it becomes a very solitary experience. But even though Marisa isn't a physical participant in it, she still has to put up with it, and me, every single day.

Relationships often don't survive massive trauma. When one reads stories, for example, of couples who have lost a child, one isn't at all surprised if the couple subsequently separated. Trauma is isolating and disruptive. From the very beginning I found my myeloma pulled us into different rhythms.

We recently passed the milestone of 20 years since we met and started going out. We are both significantly different people than we were back then. There have been many times, these last few years, when I have worried and lamented what myeloma has done to us. I'm sure I will worry about that again.

But I will also cling to another insight. Everybody grows. Everybody changes. A strong relationship means continually building a new relationship together. So, I've stopped worrying about what we've been through. The next 20 years will, inevitably, be different from the last. And it's our job to create it.

As always, I owe a massive debt of thanks to you, Marisa. For sticking by me when I don't always deserve it. For carrying all the weight that I am unable to. I'm so proud of you for the person that you have become, the career you have built, and for being such a conscientious, devoted mother.

I will always be sorry for what myeloma has done, because even though I know it is not my fault, they are still my cells. It is part of me.

But... None of us knows what tomorrow holds. And everyone has to navigate the complexities of being in their 40s. It's really not all about the myeloma.

When I'm done with this SCT, let's paint the town red. Love you.

Tuesday, 18 September 2018

Epilogue eight

Do you realize that you have the most beautiful face? Do you realize we're floating in space?
Do You Realize?? - The Flaming Lips

A sense of purpose

This year - if I haven't mentioned it already - has been pretty rough. One consequence of being permanently doped up on drugs that make you feel unwell and prevent you working, is that you lose any sense of narrative of what you are actually doing. I started to find that any social occasion was increasingly awkward, as I didn't have anything to say. Other people talk about work, or family life or the amusements and trivia that come with city living. In response, who wants me to divulge how dreary it is, sitting at home feeling like shit? It doesn't take long before one is actively avoiding social interaction.

We're all well aware that we are often judged by our work.
"What do you do?"
Being ill is not much substitute for a career.
"Er. Thalidomide? Pneumonia? Groaning?"

I was dwelling, on a beach lounger, what it would take for me to address this. I came to two realisations.

1) There must be more to me than being a guy-with-cancer. And that requires me to define some roles for myself and then work to grow into them. Having purpose matters. A friend has recently had a book published. As well as being inspired by her writing, I've also observed how she has established her identity as an author. I would like to hope that writing could be a defining role for me too, among other things. But I'm not going to run before I can walk here... the first step is to invest meaningful time in meaningful projects, in order to establish a new purpose for me. I need some reinventions.

In the past, I've tended to shrug - knowing the most lucrative thing I can do is to continue my consultancy business. And many of the side projects have faded away. However, if it is, first and foremost about identity, then the money hardly matters.

2) If a second SCT demands some reinvention of me, then that will need to involve some things ending, as well as some beginning. To an extent, that explains why I've chosen now to wrap up this blog. At the same time, I have taken myself off social media. And I'm in the process of re-inventing, re-articulating and re-launching my business. Because I need some space. I need some news, that isn't myeloma related.

I'm not sure yet what all the beginnings are. I've been having fun writing bits for a novel (I've harboured pretensions in that direction for a long time... at least now I have some actual output to show for it). My recently-published friend is being very supportive and pushing me along. Who knows where this will lead.

I would like to spend a bit of time supporting local enterprises and organisation in South London. Having lived here for more than twenty years, I am passionately in love with the diverse community I live in. (Brexit, these last two years, has served to reinforce that in my mind. Half the country appears scared of precisely what makes my community great.)

And I'd like to put some energy back in to a cause that matters, in particular, into Sub-Saharan African development, being the area that is closest to my heart. When I am through this SCT, I will be seeking a way to do that.

Writer, South London community worker, Africa promoter.

Or something like that.

Monday, 17 September 2018

Epilogue seven

Money, it's a hit. Don't give me that do goody good bullshit
Money - Pink Floyd

Financial disservices

I arrived at university enrolled on a course that I didn't enjoy. I had taken a "gap year", during which I had lived in rural Zimbabwe, teaching (very badly) in a local school. It had opened my eyes and changed my outlook. Now I was unsure what I was doing, or where I was going. Physics no longer held much appeal. Fortunately the university supported me, and helped me switch subjects. (They could easily have just kicked me out for being useless.) I ended up with a degree in anthropology, which suited me very well.

I had no greater vision of what work I wanted to do, either. When the vacations came, I sought a job. At first I worked in a kitchen, and then I got some admin/assistant work in an office. It happened to be a Marketing Department. It was fun. So, as graduation approached I applied for sales and marketing roles. I spent a season selling pop to corner shops on the south coast, 18 months with franchises and acquisitions in newly-capitalist Eastern Europe, a couple of years building relationships with supermarket head offices on behalf of a brewery, and a year creating wild and exciting ideas for a campaign that, in the end, never happened.

In 1999, I knew I needed a new challenge. The internet was spawning lots of dot-com start ups. I guess the atmosphere gave me courage (I wasn't daft enough to actually join a dot-com). I was offered a job by a guy with a razor sharp mind and ruthless drive. The work was exciting, and he had a fabulous list of customers and contacts. So I swapped the relative security of a company employing 40,000 people, for one employing just 2: my new boss and me. We promised to create compelling ideas and strategies for whoever would hire us. We got ourselves t-shirts printed with "corporate whore" written on the front (all lower case, sans serif, no punctuation), much to the disgust of our neighbours in our somewhat genteel shared office space in Primrose Hill. We worked very, very hard. In our own little way, we made waves and shook things up. Lots of advertising agencies hated us, because we stepped on their toes; endeavouring to do the smart thinking which they had previously considered part of their fiefdom. It was fun. The work was great. Career-wise, it proved very astute.

Six years on, my boss' ambition and mine had diverged. At the same time, work and home were becoming increasingly incompatible. In the autumn of 2006, as Ben's first birthday was approaching, my schedule said I should be on a plane to somewhere (mostly Asia and Latin America), every single week. Knowing I needed a change, but unsure what on earth to do, I shut myself in my office and spent a few days working out what my proposition was. Alarmingly, I found I'd written something that I could only attempt to bring to life if I were completely independent... So... I set up shop on my own. (I think my Dad thought I was mad; at least reckless.) I articulated my pitch on a few sheets of paper, phoned up everyone I'd ever met, invited them for coffee, and attempted to set out my stall. Two coffee-conversations rapidly opened up opportunities. I wrote project proposals, and secured some work. By this stage, Marisa was pregnant again. I had quite a lot to prove. I've never looked back.

I had read several of those "Start your own business" books. Most of them were absolute dross, but they did encourage you to have a tangible goal. I set a financial target (after all, I had children to feed), and expressed it in the form of a beautiful view of New Zealand's South Island, where Marisa and I concocted a plan to buy some land.

I endeavoured to be a ruthlessly low cost operator. (Back then most companies would have boasted about the size of their budgets. These days there's far more recognition of the power of "zero".) I decided to pursue the work rather than the vanity of trying to build an empire. So no fancy office, and no PA. When the financial crisis erupted, in my second year, some of the bread-and-butter projects dried up. To compensate, I pitched for things that might, in the past, have been contracted to monolithic management consultancies, and I was lean enough and hungry enough to win more work that way.

A substantial dose of circumstance and good fortune have been involved in my "self made" story. My comfortable middle class upbringing, for starters. But plenty of graft and cunning has gone in to it too. There has been something very satisfying about each invoice, representing the client's confidence that my contribution has added substantially more value than it cost. My old boss believed people divide into "hunters and farmers". He was proud that we were hunters: pursuing and catching. To be good at that, you have to be effective at building relationships, and persuasive in creating mental pictures of what you might achieve together. I've been equally proud, subsequently, to be a farmer: nurturing and growing. That requires a different kind of relationship building, and utter consistency in delivering quality. And much of my business has come from outside the UK - from the EU and beyond. The UK doesn't have enough exporters.

Five years in, I developed myeloma. Fortunately, I had several very kind and generous clients, who enabled me to adjust my workload to fit my physical capabilities. I was able to carry on working, through my initial treatment, my SCT and the remission that followed, for another six years. This year is the first time I've stopped.

What relevance is this?

It means I've been largely spared the financial challenges that myeloma often brings. I couldn't get any sick pay, but neither did I have to face up to whether or not my workplace wanted me back, or the potential for discrimination. Nor have I had to fight through the "hostile environment" for benefits.

It's like a whole missing thread in dialm.

Sadly, to the limited extent that I do have experience of these issues, the outlook is pretty bleak. I have, where possible, avoided telling people I work with about my illness. On the occasions when I have been forced to, I have typically found myself discriminated against as a consequence....
... The school (I was training to be a teacher, too, when my myeloma erupted), that  simply terminated my placement, rather than even take the time discuss with me whether or how to make things work together ...
... The "mentor" who made all sorts of verbal promises, and then spent the rest of our relationship doing her best to actively undermine me and deliberately removed any support I might have hoped for ...
... The potential clients who stopped returning my calls ...
I'd love to say it was anything different from this, but that's the truth. Mostly, in workplaces, in my experience, people behave pretty badly towards someone with health issues. Not everyone - I have had a few very considerate and understanding clients. But mostly.

This year, for the first time, I'm engaging with the benefits system. It will come as no news to anyone when I report that it is miserly. Or that the applications processes are a bureaucratic shambles. Or that there's a very unpleasant amount of thinly veiled cynicism about whether or not one is really capable of working - an insinuation that one is lying and trying to cheat the system. It's demoralising and demeaning.

Financial insecurity is typically one of the biggest issues facing younger myeloma patients - and no doubt also all sorts of other diagnoses. I'm not sure I consider myself "lucky", but in this respect, I guess I have been.

Sunday, 16 September 2018

Epilogue six

I used to be a little boy, so old in my shoes. What I choose is my voice. What's a boy supposed to do?
Disarm - Smashing Pumpkins

Angry man syndrome

This blog has elicited a range of responses. Not so long ago, I was told it is "angry". How to respond to that?

There's a shouty little manikin inside me who could enthusiastically reply.
"ANGRY. WHY THE FUCK NOT?"

But... I think, that isn't really me. I'm not angry, for the simple reason that in order to be angry I'd need to feel something unfair had happened, and that would assume my situation is special, which it is not.

The papers are full, daily, of worse: of the extreme and shocking.

And anyway, half the world lives with no decent healthcare. If I were one of the rural Zimbabweans I lived among in 1991-92, then I'd be dead by now. I would probably never even have got a diagnosis, just a crescendo of pain which drove me to my bed until pneumonia finished me off. Indeed, many of the people I lived among then will be dead by now for sure, since life expectancy in Zimbabwe dipped to just 43 a decade ago. (It's nearer to 60, now, simply because a lot of the people with HIV have died.)

Closer to home, I've witnessed family and friends grapple with other illnesses, with bereavement, with executing their parents’ wills, with children’s special needs at school, with redundancy, with divorce…

So, it's not just me.

A decade ago I didn’t recognise those pains in other people. Myeloma has given me an emotional sensitivity I don’t think I had, made me less of a dick. I don't think I was a very empathetic friend, back then.

I've always cared deeply about human development and social justice - especially for Sub-Saharan Africa. But from a position of personal invincibility, my motives were charity for the less fortunate. Changing the world as an act of condescension.

What I have to offer now would be, I hope, more meaningful, even if smaller. The doorway to empathy is the one aspect of my experience of myeloma that I would not wish away.

Saturday, 15 September 2018

Epilogue five

Have you come here for forgiveness? Have you come to raise the dead? Have you come here to play Jesus to the lepers in your head?
One - U2

Body in a box

Gyles and I were recently discussing grisly deaths (as you do! Children make sure that conversation topics are varied and surprising. It's one of the - very many - ways they enliven the world). We'd got as far as being buried alive. I said that surely being trapped for hours/days knowing you were going to die would be the worst way to go. I'd rather a lot pain in the short term, than hours/days waiting.

And now that I've raised the subject, I'm guessing most of you would agree? Because, who cares how long you live, if you're miserable. What's quantity, without quality?

Seems straightforward.

That myeloma is a threat to quantity, is old news. And when the disease is bad, or the treatment is rough, it impacts quality too. What to do?

I've learned it is important not to act like a body in a box. One mustn't just lie there, waiting to die.

When the disease is in "remission" (or whatever name we wish to grace those periods with when the myeloma is not proliferating), then the quality - in the short term - is fine. Then I want to live rather than exist. To embrace today. To make it count.

And when it is not remitting, when it is out of control, or when the rigours of hospitals and drug regimes are beating down. Then, the quality is gone. But that's a short term experience too (every time until the last time). Then, I want to submit gracefully. To let the tide wash past.

I'm reminded of the prayer by Reinhold Niebuhr
"God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."

I learned through bitter experience not to fight the worst of fatigue or infection, for it simply builds up until it is impossible to resist. Far better to recognise it earlier. Increasingly, I treat lows of mood and energy in much the same way - rolling with it, not resisting it. A better day will come. (In the mean time, there's always Netflix.)

I guess there's a danger that this mutates into permission to give up. But given the ridiculous quantity of imposter syndrome I still feel about my symptoms, and how suspicious I often am of my own motives, I think there's little danger of that.

Friday, 14 September 2018

Epilogue four

I’ve been feeling down. I’ve been looking round the town for somebody just like me, but the only ones I see are the dummies in the windows
Family Tree - Belle & Sebastian

Specific relativity

It is difficult to get an objective sense of one’s own experience. I often find, as I recover from a period of being unwell, that I surprise myself with how good "good" can be.
"I must have been really ill - worse than I thought", I declare, as the clouds scatter.

There is no objective measure. When the hospital give me (as they so often do) a form to fill in that asks me to rate my health from 1-10, or my pain, it is impossible to respond. I sometimes write "STUPID QUESTION" in frustrated scratchy caps across the page. I don't know if that helps.

The last 6 months have been dire. I can hear my inner 6 year old asking which was worse - this time, or the first time. (I think all children start life with a desire to rank and classify everything, don't they?) There's no answer to that. It was, well, different.

So, I'll still be moaning about my pain, for a good long time yet, and you'll have no reference point, I'm afraid, to ascertain how bad it really is. Only Marisa, who has to listen to me sleep, will really know.

What on earth to learn from this? Only that I have to interrogate myself when the clouds gather. Sometimes (often) it is easiest, and wisest, to submit: the storm passes so much quicker if one is not busy battling it. But equally, it’s worth keeping an eye out for some semblance of objectivity. If I define April 2018 as a 10 (or at least, a 9.5) of displeasure, then it somewhat helps put things in context.

Thursday, 13 September 2018

Epilogue three

You're taking the fun out of everything
There's no other way - Blur

Pain in the head

One’s body has three types of pain receptor (mechanical, thermal and chemical), but the pain itself is a construct of the mind. Acute pain serves a specific purpose, to act as a warning. Chronic pain (pain which goes on for months and doesn’t end), which doesn’t serve a useful purpose, is really a failure of the brain to reset, to accept things for how they are.

It is no surprise at all, when I look back at the most recent months of my life, to note that my mood tracks my physical experience pretty closely. It is hard to be upbeat, when one is in endless pain. Even last week, when I was suddenly feeling a bunch better, and making a series of plans, I was knocked back by one of my, not infrequent, bouts of acute rib pain. It was much harder to be upbeat the next morning, with my rib screaming. Mind is dependent on body.

I said to Marisa, some time ago, that I yearned for the day when I could do something as nonchalant as to flop down onto my bed. For a long time now my body has been so stiff, and sudden movements so (acutely) painful, that I have been forced to make every move a controlled, deliberate one. But just this week, for the first time in a long time, I achieved something approaching a flop. My whole body tingled for about 10 minutes afterwards, with the physical shock of what I had done. But there was no pain. It is no surprise then, that I am also finding more positive mood, a sense that there is light ahead of me. The physical and mental are entwined.

So… chronic pain is a big problem. Chronic pain brings almost inevitable loss of drive, and is highly correlated with depression, anxiety and sleep disturbance. Myeloma is painful, there’s no way around that, and some of that pain may even be “useful”. But the majority of it, especially the fact that it lingers so long, is not.

Having just finished six cycles of chemo, and with my light chain levels back where they were a long time ago, I’m keen to shake off the pain I’m in. I have experimented a few times recently with what happens if I stop taking my (opioid) pain meds. At the moment the results are mixed. It is not immediately painful, and that’s a big improvement on the last few months. But after a few hours I find the accumulation of aches creeping up on me, my body hunching over.

DrC was laughing to me, last week, as he wrote me a new painkiller prescription about the paperwork and procedures involved, because these are controlled drugs. He has classically illegible doctor’s handwriting and is fairly informal with his terminology. The pharmacy like to read the words “prolonged release...” in the description, and I have been sent back to get the prescription amended when it says “slow…” or “extended…” Plus we regularly disagree about how many pills I need, with him writing 60 while I say (for the umpteenth time)
“Write 56, it’s much easier”.
Finally, this week, we at least resolved the last of these issues.
“Why is 56 so important?”
“Because they come in boxes of 56. So if you prescribe 56 they just give me a box. Whereas if you prescribe 60, they have to make up a special little extra box for the last 4 tablets. It wastes about another 30 minutes.”
He seemed genuinely surprised by that. You would have thought it would get covered in medical school. There’s a reason for knowing your 7 times table.

Anyway, asides aside, he was laughing about the need for long hand prescription and whether this is assumed to act as some kind of disincentive to overprescribing. I responded with my anecdote about being given my opioid meds in hospital and the nurse standing over me until he has seen me swallow it, in case, I assume, I’m saving them up to give to a friend. But then, I say to DrC, I do understand what all the worry is about, with the alarming stories one reads of people becoming addicted to prescription opioid drugs.

He tells me, there is no evidence at all of addiction occurring among cancer patients. One consequence of all of the fear, he says, is that doctors – particularly GPs – often under-prescribe the dose of painkillers for the people who need them most. Far more important to have enough to ease the pain. Which is not to say these things are consequence free, even without worrying about getting hooked. I recognise a certain fuzziness of the head, when I’m on too much morphine. And I am so much enjoying being clean and sober now I’ve stopped taking my chemo for the time being. I do hope to be able to stop the painkillers too.

So, I will persevere with reducing my dose, and endeavour to reset my brain’s pain perceptions.

Maybe the broader lesson is one about recognising pain in other people. I know how hard I find it to smile, be upbeat, when I’m full of aches. Worth bearing in mind.

Wednesday, 12 September 2018

Epilogue two

It's four o'clock and all's not well in my private circle of hell
Through a Long and Sleepless Night - The Divine Comedy

Middle age spread

Myeloma typically interrupts jobs and careers. Being self employed, that was a little different for me. But it has had significant effect on my work none the less. Firstly it has caused long gaps when I have been unable to work at all. I haven’t worked since September last year, and I don’t think I’ll be ready for anything until somewhere in the spring, so this time round it has cost me 18 months. Secondly, maybe more importantly, it has made me think again about the work I want to do.

Our holiday this summer gave me plenty of time sitting on the terrace of a hotel, beside the beach, under a blue sky. It reminded me of so many places I have worked in the past; running training courses, or facilitating workshops. Those jobs I loved at the time, and I like to think I was pretty good at them too. But it is 10 years since that was the bread and butter of my work, and I cannot imagine going back to a time when that would be the core of what I did. In fact, I’m old enough to look at my career and see a progression of things I have done and moved on from. What matters more than anything is having a sense of where one is now, and where one is going. When I set up my business, I wrote on my website that “Yesterday is history… Largely irrelevant.” Partly, that was aimed at offending a few history grads, but it also expressed a truth. We have only today, and our hopes for tomorrow.

It’s not just work. Up until the point of starting a family, life’s goals seem obvious. Somewhere after all the nappies, once the children are at school and emerging as people in their own right, one faces the realisation that there’s still living to be done, but you’ve reached the edge of the map. It’s the stuff of midlife crises, I guess.

Our holiday resort this summer ran a regular series of cycling events, in order to attract a specific demographic of holidaymakers. As a result there were quite a few MAMILs (middle aged men in lycra) around. I don’t think I’d have been in any danger of becoming one of those, even without myeloma, and it would be easy to mock the tendency to overdevelop hobbies. But I do recognise that it is one way people find of resolving the riddle.

I don’t have a solution to offer. I’m working on it for myself. But certainly not going to pretend I have achieved any kind of life-guru enlightenment where I think I have anything much to tell anyone else about how to grow old, if not gracefully, then at least interestingly.

What I can say though, is that I’ve learned that it’s no good blaming everything that befalls me, in particular the search for meaning, on my myeloma. It is a thing, admittedly a big thing, but still just one thing, in my life. Many of the questions I find myself facing, would have been asked of me anyway. To credit any disease with complete influence over one’s life would be to give it far too much power. It helps, often, to remember that, and put the cancer in its place.

Tuesday, 11 September 2018

Epilogue one

Master of puppets. I'm pulling your strings. Twisting your mind and smashing your dreams
Master of puppets - Metallica

Anatomy of a chronic, life threatening, disease

Our ideas of disease fall into a few archetypes. There’s those you get, are treated for and recover. There’s those you get, deteriorate and die. There’s infectious ones, hereditary ones and lifestyle induced ones. There’s disability. Myeloma is no one of those things. In particular, no matter how well it is treated, how well I look, how upbeat I am, it will never be cured and it is always lurking there, promising to lay me low and eventually kill me. I find that hard to acknowledge and accept. Other people – who have usually spent a lot less time thinking about it than me – find it harder. So I’m still aware, if I end off talking disease to someone for the first time, that they are fishing around for cues of a happy ending, that I have some kind of endpoint to head for beyond which I will be cured. And I don’t, because I won’t.

In the first few weeks of my diagnosis I was very fortunate to find an online group of “under 50s” (I was 39), whose company provided me some reassurance and solace. I am still grateful for their friendship and companionship. They showed me that life can go on, and helped me come to terms with a disease that might well just lurk about causing me problems and threatening to kill me, for a very long time. Among that group, though, I also saw the stark reality of what myeloma is capable of. I greatly miss those friends who have died, even though I think our rate of dying is slowing up which must be a consequence of better treatment options. But Wendy, Helen, and more, I will not forget you.

Every day, some other poor soul, sat with a doctor, discovers that (s)he has myeloma. And you aren’t prepared for it because until the bus hits you, you’ve never been run over before. Witnessing someone else getting run over is not the same. Maybe one learns a bit by the experiences of those close by. In that sense maybe dialm serves to shield a few people from a little of the shock that will come to most of us when we are faced with something potentially deadly or disabling. But honestly, I doubt it. I think that shock retains its impact the day it suddenly applies to you.

But I do think it helps to have a broader understanding of disease. Our ageing society, and the effect of medicine in defeating many infectious diseases, means that many more of the reasons we will find ourselves in front of the doctor will share some attributes with myeloma. Chronic disease probably means symptoms that fluctuate in severity. It probably means treatment that changes over time. It probably means an amount of cumulative disability. That's reality folks! My own story is not really anything much to write home about.

Monday, 10 September 2018

Closure

You think you're alone until you realise you're in it. Now fear is here to stay; love is here for a visit. They call it instant justice when it's past the legal limit.
Watching the detectives - Elvis Costello

Conscious uncoupling

When I began this blog, I did it with two audiences in mind. One was my friends and family, who I want to keep informed about my illness and treatment, and to avoid myeloma becoming a dominating topic in our conversations. I don’t want to talk about it all the time because it is boring and repetitive for me; depressing, scary and unpleasant for you; and because it evokes emotional reactions of sympathy and pity which are hard for both of us to deal with. It has been much easier to write things down here, my thoughts gathered and presented more coherently than they would ever be in conversation. Leaving us free to talk about music, travel, politics, children… the weather, whatever. (Even Fortnite. Not Love Island.) You know; stuff, life. Not myeloma; hospitals and death.

The other audience was people who find themselves in the same position I have. My myeloma diagnosis was the most bewildering and awful thing that has ever happened to me. (With apologies to the egos of those girls whose hearts I broke, or who broke mine, when we were young – those pains faded very quickly.) I was desperate to find anyone whose experience I would recognise, so I would feel a little less alone. And there really wasn’t much to find. The hospital waiting room is populated by people a generation older than me, and even now, when I spy a younger face there, I’m not inclined to impose myself on them, since I have no idea where in their journey they are or how they are feeling. To approach someone simply because they are vulnerable, is fraught with risks. Outside the hospital, I could see nothing.

I started to put the blog together in February 2013, as I was preparing for my (first) stem cell transplant. The trigger was the thought of how to communicate with friends. But I already had quite a bit written down. The shocking events that had happened to me were liable to roll on repeat in my head. I could scarcely believe it all, it seemed so outrageous, and I had a fear of losing the clarity of my own memories in the confusion. So and I wrote them down as a way of giving me permission to forget; to get it out of my head. Then I spent a bit of time pratting around with the name of the blog, and its visual identity because I’ve spent far too many years worrying about things like that, and sprinkling it with song lyrics as a way to soften the blow – make it seem a little more humorous and a little less I’m-going-in-to-hospital-and-I-might-die. As I went through treatment and recovery, it flowed easily. I enjoy writing. I created a persona here. I endeavoured to keep it on topic, but its surprising how quickly one can convince oneself that what the world really needs is to read one’s thoughts and views on just about any topic. That expressing it validates it and makes it meaningful. I’ve been flattered by those people who have praised my writing. For a while, I enjoyed my role of saying the unsayable, posting gruesome hospital pics and so on.

Within in it all, I guess, was the yell. The refusal to go quietly. The refusal to spare other people the realisation that I had had, that the world is a cruel and awful place.

A lot has happened since. Not least, I’m all yelled out. I know it sucks. You know it sucks. The ongoing impact, especially during the last six months of chemo when I have been quite ill, quite low, and very restricted in my activities, has reinforced for me what a life sentence it is. I have to continue to find my way through it, to lead a fulfilling life despite it, and certainly not let myself be dominated by it. My most recent hospital records suggest myeloma has taken 6 inches off my height. I cannot prevent that. But I don’t have to give it 6 points of my intellect, 6 facets of my personality or 6 degrees of my mood. My early yelling was pretty factual: this is what it’s like to get that phone-call after which you know life will never be the same. There’s just as many thoughts swilling in my head now as then, but these days its much more ethereal stuff about purpose; motivation. About families; relationships. It’s not linear. It doesn’t lend itself to a diary. To be honest, its not really stuff that’s comfortably broadcast at all.

I no longer need to seek out the stories of other people, either. I’m guessing few people, facing second line or subsequent treatment, need mine. We’ve had plenty of time to think things through now. The need is gone. I suspect that role of dialm is done. The world has moved on too with social media (there’s a fantastic facebook group, of which I have for a while been an admin though I’ve just stepped back from that role) providing a much easier way for people to find each other and reach out for common experience. But anyway, this blog still remains. I hope anyone, plunged into that awful fear, might still find dialm, and realise they are not alone.

If you’ve read enough of what’s already here, you’ll understand what I’ve been through as well as I’m able to express it. Anyone with newly diagnosed myeloma who reads it will find, I hope, evidence that the world doesn’t end, no matter how much it may seem as though it is going to. My life expectancy now is as long – probably longer – than the day I got my diagnosis. Assuming there’s such a thing, for a relatively young person like me, whose current treatment involves drugs that have only existed for a very few years. I prefer to see it as a complete unknown – that’s more reassuring, but also, I think, more true. Can any of this really be further explored? If I consider this blog as a whole, I don’t think it can be much further improved by not knowing when to stop!

That leaves, though, those whose main reason for continuing to read here is as a way of keeping up with events, keeping in touch with me. It is you I’ve found it hardest writing for, these last few months in particular, as the entries seem to get quite repetitive. “I took my drugs; I was a bit ill; I felt a bit down; but I’m getting myself together again”. I’d like to save you feeling the obligation to keep reading. I’ve said all I needed to say. You’ll all just have to accept, from here on in that on any given day I’m feeling as good, or as bad, as my predicament permits. When my myeloma is in abeyance, I intend to be on top form. When it rears up, less so. If you see me looking grey, and not upright (that’s usually the clearest sign) you can assume something myeloma-related ails me. I’ve come to accept that those moments come with little warning, often unexpectedly. My list of novel symptoms and short term issues is by now quite substantial (many of them not recorded here), and no doubt that will continue. I might get a few years – maybe many – drug free after the upcoming SCT. But I might not. And beyond that, I will be forever popping one pill or another, and living with the various side effects and symptoms, accordingly.

You’ll have grasped by now where this is heading. Lately, I lost the urge to yell. I’ve said it all already. It doesn’t improve with repetition. I’ve concluded now is the right moment to stop. (It marks a complete cycle, from the approach to my first SCT until the approach to the second.) Novels end. Movies end. TV shows that don’t know when to stop, eventually jump the shark. I think the time has come for this story. I’m going to finish with a few epilogues, some thoughts in my head, over the next 10 days, and then sign off.

Sunday, 26 August 2018

Corse

I'll be riding shotgun underneath the hot sun, feeling like a someone
Shotgun - George Ezra *

On vacation

Here's my very last ixa, a few seconds before I swallowed it this week. Harmless looking little thing. After seven months, this leg of chemo is almost over. I'm feeling increasingly less dependent on my stash of pills, even the painkillers, which is some kind of progress.

It would be great if I felt confident that this chapter was coming to a coherent close. But my myeloma is never like that. Inconsistency being its one certain feature. One of my consultants sent me for yet another CT recently, which showed up - as she suspected - that I still have residual infection in my lungs. It also showed up a load of fractures, probably new ones, in my ribs and also my sternum. That would explain all the pain I've endured these last few months.

Why things are still breaking, is not clear, if my myeloma is in remission. Then my most recent light chain score came in, and it's up not down. (I had kind of anticipated this - purely on the basis that my myeloma is always contrary.) So, in one possible version of the story, there's a load of myeloma in my ribs that is now resistant to the treatment I am on and fighting back. If that turns out to be the case, it will totally screw up all our plans.

However, for now, we're continuing to assume that the chemo has worked sufficiently to get me to transplant. I'm booked in for a stem cell harvest process beginning at the end of September.

In the mean time, we're away in Corsica. The boys are learning to sail and practicing their windsurfing. Marisa is enjoying (I think!) having a go at water sports too, and definitely appreciating not having any domestic duties to attend to. I'm lying on loungers, or dipping in the pool, and taking my last few pills. We'll be back in London in another week. Whatever the reality of my myeloma is, it can wait until then.

* Whatevs Summer innit. Lyndon taught me the moves to this one.

Monday, 23 July 2018

Sweltering

Helter Skelter in a summer swelter. The birds flew off with a fallout shelter. Eight miles high and falling fast
American Pie - Don McLean

Got to love the unrelenting heat ... KFLC = 291 (as of 22nd June) ... 

Not much to report, really. It is now 6 months since I began my chemo. Various delays have dragged the process out even more than I had anticipated. 25 weeks down, but 6 still to go. I'm pretty much fed up with the whole experience. I can't even be bothered to regale you with the story of the week we just wasted while the hospital forgot to order my next consignment of drugs. My sister came to stay last week. It was lovely to see her - and a load lifted, for Marisa, to have someone else to cook the tea, and walk the dog. I'm thankful for that. Each week is one closer to the end.

My light chains continue their slow descent, which is the main thing. The last month's results indicate that I will be approaching this transplant process with my myeloma more suppressed than last time round. Indeed, I'm hopeful I will start this SCT with my light chains almost where they were at the end of the last one. That makes me optimistic the outcome of the transplant will be another deep long remission* (though there's nothing certain, at any point, about myeloma prognosis).

I'm fairly sure that my myeloma is no longer contributing any symptoms. My ups and downs, of which there are still too many, must all be drug side effects (mostly, I blame the thalidomide). I'm endeavouring to live quiet and subdued, so as not to disrupt or provoke my body. It means I do little, but if it reduces the flare ups of bone pain, or infection, its worth it. Frustrating though. And boring. I can't help wondering about the figure I cut. I can see in the mirror that I look reasonably healthy, except I can't stand upright. But I imagine that the rest - getting up late, sitting in armchairs a lot - bears more than a passing resemblance to laziness.

Yesterday morning I waved off Marisa and the boys as they headed to the airport and a flight to the French Med. A friend has generously invited Marisa to start the school holidays with a week at their family's holiday apartment. I figured my presence wouldn't add to anyone's enjoyment.

So, I have a week on my own. I'm going to take myself down to Sussex and enjoy the weather. Peace and quiet has a certain appeal, and anyway, mine is an inherently lonely journey. Strip away the various illnesses and the aches, and the most notable aspect of the last 6 months, is the enveloping solitude. My 2018 hardly intersects with anyone else's. I do look forward to rejoining the world around me as a proper participant, when this leg of the journey is done.

I had hoped to be out of treatment during the school holidays, but that is not how it has worked out. Despite the chemo, we have booked a holiday for the last 2 weeks of August. Assuming I can get my pharmaceuticals through customs, I'll be taking my last few pills, and hopefully not too stricken with aches. We will be staying at an all-inclusive resort, very much not our normal style. I'm really looking forward to it. It will give Marisa two whole weeks off; offer the kids plenty to do; and let me sit by the pool without feeling like I'm a big drag anchor.

I am, as always, incredibly grateful to Marisa. She has carried the load, again, this year, and put up with me. (No-one would want to have to share a bed with me, I can assure you. You have no idea.) It seems too little, on my part, to have merely taken my pills, and tried not to moan.

Still, the end is now in sight. I'm looking forward to being more fully present. Yes, I'll still have the transplant to get through, but that is a known quantity, and finite. So, I have this week to embrace my solitude. From next week, I want to be able to enjoy the summer with my kids and my wife - to emerge from the chemo-fog back towards some approximation of normal. I'll still have to take it easy for a little while longer, because I still have a few more weeks' drugs to take, but it's not so long now.

* There's some discussion, on myeloma threads, about whether myeloma actually has "remission". In the sense applied to some other cancers, where "remission" means "gone away, hopefully not coming back", it does not, because it is always in the process of coming back. But in the "remitting/ relapsing" sense applied to some other diseases - such as multiple sclerosis - it very much does. For me it is most helpful to think of my myeloma in terms of managing a chronic disease. And I use the word "remission" in that context.


Sunday, 15 July 2018

Proud

I'm gonna work the straw. Make the sweat drip out of every pore
Seven Nation Army - White Stripes

A job well done ...

Gyles has swum his 2km. In the process, raising almost £2k for Myeloma UK. You can still sponsor him, if you haven’t done so already - here.

Thanks to Gyles for being so determined, and to everyone who has sponsored him.