Friday 26 October 2018


Like brexit, myeloma doesn't go away just because you're fed up talking about it. I'm conscious that plenty of my friends deserve an update - so I'm posting "from beyond the grave" of the blog. I'll try to keep it brief.

I've spent the last 2 months doing all the prep for transplant, which was scheduled to go ahead on Monday. However, this week, my doctors have reviewed my position again and decided on a different course. My response to treatment has hovered, since about June, on the borderline between what they would call "partial response" or "minimal response", making the decision of what to do next a marginal one. Their advice - this week - is that it would be better to change my treatment and try for a better response, before transplanting. So I am about to begin on a new regime - cyclophosphamide, lenalidomide and dex - for at least 4x 28 day cycles. (In the process, they are taking me off the clinical trial I have been on. But given the patchy impact of the drugs, it doesn't much matter to me whether I'm on the trial or not.)

Aside from the awfulness of having this all sprung on me in the last days before transplant (and that has been a pretty horrendous experience), it means a few other blunt truths have to be faced:

  • We are basically back to square 1 (though in a slightly healthier position); beginning chemo with the intention of transplanting in 4 or 6 or 8 months time. The last year and all the side effects have been, if not "for nothing", then certainly for "not enough".
  • If myeloma treatment is a matter of firing a succession of bullets, each representing one line of treatment, with the aim of firing the fewest bullets over the longest time, and so prolonging treatment options, then we just fired another bullet.
  • Rather than imagining myself surmounting the "final hurdle" before easier times, I must face up to the fact that I may well be on chemo now forever. My doctor talked explicitly today about how we might ensure I am able to continue my chemo after my transplant (as and when that actually happens).
  • I had already written 2018 off to treatment, now I must assign 2019 the same way. I'm not overly optimistic that some future year might miraculously not be dominated by treatment of one form or another.

All pretty grim. I begin my new regime in a week's time. I'm hoping the side effects will be a lot less severe than the last treatment.

Thanks to everyone who has committed time to supporting us in the weeks ahead. We will need different support from what we had anticipated. I will need to work out how much I am capable of, in the next phase, and then get my head round what kind of "life" exists, beyond popping the pills. I can't see that far, just yet.

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.

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


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


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


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


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.

Sunday 24 June 2018


Are you a man? Are you a bag of sand? Swim until you can't see land
Swim until you can't see land - Frightened Rabbit

A plug - my boy ...

Gyles, my 10 year old son, is planning a sponsored swim to raise money for Myeloma UK. He's going to swim 2km.

It was all his idea - not mine. He asked me how he could get money to help fight myeloma. Obviously, I'm really proud of him for even thinking it. So... hands in pockets for his sake more than mine.

Myeloma UK is the only charity in Britain specifically focusing on issues to do with myeloma. It helps raise awareness, provides a lot of support to people living with myeloma, and is involved in many clinical trials of new treatments.

Friday 15 June 2018


The wind is low. The birds will sing, that you are part of everything. Dear Prudence, won't you open up your eyes?
Dear Prudence - The Beatles *

... KFLC = 436 @ 6th June ... 368 @ 24th May ...

If you want just the short update here, it's extremely simple: I'm still taking my chemo. I'm feeling much better than a month ago, though still pretty fragile. But while I'm still able to pop my pills, we are at least in some kind of rhythm at last. I daren't do much for fear of provoking another crisis and disrupting my treatment plan again. For it would be pretty disastrous if that were to happen again now. So, I'm living quietly, cautiously. It's a bit dull, and quite frustrating, but it is leagues better than my quality of life for most of the year so far. Barring any major drama, I'm hoping I will continue like this - popping pills and laying low - until the end of August.

What follows may be of interest to some... though there's a possibility it is entirely DEX talk.

My myeloma is only measurable through light chains. Most people's myeloma is also measurable through Ig paraproteins. It's mostly a nerdy distinction - only relevant to us patients as we swap statistics. But it does have a couple of real world consequences for the experience of being treated for, and living with, the disease. The light chain ("SFLC") test is very volatile. You could test today, and repeat tomorrow, and get a significantly different result. It jumps about. It's noisy data. Added to this is the complication that light chain tests take several days. So one is always working with old data. We never know the situation as of now. (If one had Ig paraproteins, detectable via a "SPEP" test, one would have neither of these issues.)

My myeloma is also, I've learned as I've lived with it, slow, stubborn and indecisive. Some people have a cycle or two of chemo and their numbers plummet. Not me. This isn't necessarily a bad thing - the prof told me long ago that some myelomas are faster moving than others, but faster on the way down can equal faster on the way up too. And overall, if he's right (and I believe he is), then I'm more than happy to have slow-to-remit, if the pay off is, as it has seemed to be, slow-to-relapse.

But, it does make it frustrating to live with. Only 3 weeks ago, armed with my results from two cycles of treatment (and a month out of treatment while I spluttered with infection), one of my consultants, was talking pessimistically about abandoning my chemo entirely, on the basis that it wasn't really working. We'd been going for 4 months, and my light chains had dropped from 750 to 550 - a response which merely qualifies as "stable disease". All that grief, for not much result! He was seriously exploring with  me whether or not to simply rush me to transplant.

Twelve days later, with one more result available, and sitting with my other consultant, we were in much more optimistic mood. (For reasons I can't be bothered to explain, I've managed to get myself in the complicated situation of being under the care of two experts at once, right now.) Now the headline was 368, which, being a >50% reduction from our January "baseline", counted as "Partial Response" ("PR"). He was telling me that emerging evidence suggests ixazomib's response profile may be slower at the start than some other treatments. That, combined with my myeloma's known stubbornness... would all explain why it was just taking time. But finally, 3 cycles in, it appears it is responding. This narrative ties in nicely with the fact that I've been feeling a lot better. And it puts us back on the pathway of continuing my chemo regime until the end of August.

So, it would have been nice, when the next result came in, for it to confirm this trend, to back up this story, to give us a bit more certainty. But here's the bit where my personal variant of myeloma does what it always does: fails to be conclusive. It's foolish to await a light chain test with a number in one's head. Foolish, but inevitable. The number in my head most certainly was not 468. That is a jump back up, which no longer even qualifies as a "response". I suppose, having lived with it so long now, having had so so many inconclusive results, I should really have anticipated this. Instead, I found myself thrown back in to uncertainty. Is the chemo even working?

I've calmed down again now. Despite the noisy data, one thing we can say with absolute confidence is that all three cycles of chemo I have completed so far, have finished with fewer light chains than they started. In that sense, the chemo is most certainly working, and we should clearly carry on. (I'm probably tempting fate by saying this... and cycle 4 will inconclusively move in the other direction. I really wouldn't put it beyond my myeloma to do that.)

So... a lot of angst later for me, and we are where we were already - popping pills and laying low. Mentally, though, it's one hell of an endless ordeal.

* I could probably do with a bit of Pru Farrow's meditative zeal, right now.

Thursday 24 May 2018

Up a bit

Lately I’ve been curious. Wondering, do I pass the Turing test?
Normalization - Parquet Courts *

If I end off repeating the same thing in several conversations, it’s probably a sign that I should have posted it here. So... an update, particularly for those who have spotted me out and about a bit more than my recent version of “normal”.

The last week I have felt significantly better. Like I’ve emerged from a hole. I don’t know if this is just a good week, or if I’ve turned a corner. But it’s welcome either way.

I’m only half way through this stage of my treatment, so a long way to go yet. One of the difficulties, at the outset of treatment is that many of the side effects (anaemia, immune-suppression, pain) are the same as myeloma symptoms. In the short term, it makes things worse. It may be that my myeloma is now a bit more under control (I'll have some new numbers in another week or so), and thus I’m simply more able to tolerate the treatment. If so, double good. The next 3 months may be better than the last 3. A relief. The last 3 have been awful.

There are still problems - mostly fatigue, bone pain, and posture - and I’ve still got the DEX to deal with. But compared to just a few weeks ago, it’s very much manageable. (A month ago, I was just home from my last internment in the haemo ward. It's really not so long.) And I’m able to think clearly, without the fog, which is a massive improvement. Body and mind. Both important.

It’s half term next week. We would normally head for the airport, but cannot. Instead, we’re off to south Devon, which should be lovely. And I’m hopeful I will be able to really enjoy it, rather than just exist, which was the limit of my ambition until only a few days ago.

Living - as I have been - with the goal of mere survival is all very "well" (as long as success isn’t really in too much doubt). But it isn’t much fun. Now, fun seems attainable.

* Lyrics choice for those with a taste for art-punk. That's a few of you, but maybe a select bunch. Everyone else... get with ;). While we're at it, here's one for anyone who has recently - as I have - been watching Wild Wild Country (on Netflix). About the Rajneeshee commune in Oregon in the 80s. Obscure subject matter, but I recommend it, if only to remind oneself how strange the world can be, and that our own destiny is as yet unwritten.

Still you’re steady with me always carrying the melody. Smiling all the while the paint chips off my mala prayer beads
Mardi Gras Beads - Parquet Courts

Wednesday 9 May 2018


There's no relief. I'm wide awake in my kitchen. It's black and I'm lonely. Oh, if I could only get some sleep. Creeky noises make my skin creep. I need to get some sleep. I can't get no sleep
Insomnia - Faithless *

... KFLC = 466 (18th April) ... Hb = 10.2 ... Neutros = 1.7 ...


I was finally able to restart treatment last week. The doctor reduced my dose of dexamethasone, as it increases one's risk of infections, and I really could do without any more of those. The first couple of days on treatment were a bit of a jolt. In particular I'm getting some significant neuropathy in my arms, which is unpleasant. I'm also continuing to suffer fatigue if I do too much, and problems with posture to do with alignment in my back, and whatever damage has been done to my ribs.

But these are minor issues, in the broader scheme of things. I am half way through cycle 3, and it's OK. If it continues like this, I believe I will make it to the end of the chemo. I can see the distant light in the tunnel; a tunnel which only a couple of weeks ago seemed entirely dark.

The sun is shining. The world, for all its faults, is a wonderful place.



In February, I wrote a little about two of the drugs in my protocol - ixazomib and thalidomide. Treatment for myeloma usually follows a rule of three. There are exceptions. Sometimes less (mono-therapies and two-drug regimes, especially when used as ongoing "maintenance" treatment). And sometimes more (multi-drug regimes such as DT-PACE or ESHAP, typically when other treatments have failed). But, in general, three. One of which is normally a steroid: either dexamethasone or prednisone. I'm on dexamethasone. The dreaded DEX.

DEX is used for all sorts of things, other than myeloma. What differs is the dose. DEX comes in 2mg pills. I've heard people being treated for other diseases who are taking maybe 4mg of DEX. Whereas my protocol requires me to take 40mg, once a week. It was worse last time. My treatment in 2012 involved taking 40mg DEX on four consecutive days each week. The reason to take DEX is twofold. Firstly, it enhances the effect of other treatments: it gets more impact for the Ixa and Thal than if they were taken on their own. And secondly, it has a (limited) anti-myeloma effect on its own. Just taking DEX, on its own, would be better than doing nothing. So, DEX is a standard component of most myeloma treatment plans. And since one can take a lot of it without any life-or-death risk to one's health, so the protocols tend to go pretty heavy on it. We are asked to take a very large quantity of the stuff.

What this doesn't take in to account is how unpleasant it is. DEX acts as a physical stimulant. Many people report problems sleeping, though that aspect doesn't really affect me (I can sleep through anything). But I can't avoid the hyper-verbal, somewhat manic, aggressive, impatient, impact on my personality. Being on DEX is not a sober experience. If I take my pills on a Wednesday morning, then Wednesday and Thursday will be lived under the influence of DEXamania. And, since what goes up must come down, Friday and Saturday will be the corresponding low. It's not nice. I am told that some people take DEX recreationally. But, if one wanted the buzz of being up all night... there are alternatives available that make you happy, rather than angry. Take them, if you want to. Don't take DEX unless you have to. Would be my advice.

The doctor has reduced my dose of DEX to 20mg. I'm delighted, because I hope it will mean that the highs and lows are a little less pronounced.

I try to keep dialm on topic. Under normal circumstances I would certainly not be telling you about the content of my dreams. But this one, from a few weeks ago, the night after taking my DEX, might give you an idea of what DEXamania is like:

The dream begins with a UK government cabinet meeting, only all the ministers are being played by minor celebs. The person playing the role of Foreign Secretary has ginger hair and a beard. The others are calling him "Bedingfield" and I had to look him up the next day to confirm that this was David Bedingfield in character as Boris Johnson. I was a little surprised because my conscious brain didn't know who Bedingfield was. But my unconscious brain clearly keeps better tabs on celeb-dom. (Sadly, I'm all to aware of who Johnson is). Anyway, the 20-odd random celebs (no, I can’t remember who the others were, now, though I think my brain had furnished them all with identities at the time), are busy acting their political roles, but in the form of having become the ministers. It is all decidedly real. Eventually the cabinet meeting breaks up in acrimony with everyone, including me, chasing Bedingfield as though to lynch him for the mess that brexit has become.

Before we catch up with him, I need some money and put my hands in my pockets only to find they are full of the most ludicrous quantity of stuff: plaster cast model palaces, large decorative gold coins, small icon mirrors, plastic superhero models, and so on. Once I have emptied my pockets, I have great piles of these items. My next task is to explain their origins to another friend who has appeared next to me. Given that this is a dream, I assume that, at this point, my brain is desperately trying to back-fill explanations for each thing; all these random details, now requiring an explanation.

So... I swiftly remember an encounter with the small child of friends who gifted me the suoerheroes.

And then... my brain works its way back to recall a visit to a rural French chateau with narrow stairs where some crazy old relatives of a friend had an entire model of 17th century Paris laid out on the floor in an unused upstairs room. They had announced they were getting rid of the model, and so giving away the pieces, and I had picked up and pocketed a selection of interesting model buildings from their display. So: that's the plaster cast palaces explained. Phew!

My mind is just turning itself to dredging up "memories" of the origin of the coins and mirrors, when I am rescued by the alarm clock I had set to wake up one of the boys for an early start for school. Thank heavens for small mercies.

That's a bit what DEX is like: far too much going on in one's brain - every detail both interesting and in need of further clarification. Marisa asks me sometimes, when I'm on DEX and going on and on, whether I am aware that I can't stop talking. And I sort of am aware, but I can't do anything about it because things just seem to need explaining.

So, if you see me on a Thursday, and I go on a bit, it's the DEX talking. And if you see me on a Friday, and I look a bit deflated, it's the DEX down. Now you know.

(Oh, and if you're in the car in front of me, on a DEX day, slowing my progress: GET OUT OF THE WAY YOU MORON. Though I try to avoid driving on DEX days; it's far too stressful.)


* In case you were wondering why I hadn't used a lyric by Dexy's Midnight Runners... Yes, their name is a drugs reference, but their dex is dextroamphetamine, so it would have been inaccurate, as well as naff, to use a lyric from them "Poor old Johnny Ray..." Faithless, on the other hand, know a thing or two about staying up all night. And they are - like so many great bands - from Brixton, which is always a good thing as far as I'm concerned.

Monday 23 April 2018


We know you feel the world is too heavy, but you can turn it all around if you want. Oh yes, you're in charge of what you feel
It's All Good - Superorganism

It's a bit of a soap opera. In hospital, out of hospital. On treatment, off treatment. Well, unwell. It's hard to keep up!


I was about to post something last week. It would have told a story of recuperation, body and mind. But before I could post it I had a sudden onset of pain in my chest, and within 24 hours I had had my chemo delayed, again, and been readmitted to hospital and put back on all the IV. I was suddenly feeling very unwell and in a lot of pain. Pleurisy - I don't recommend it. So... I've had another 4 nights in here, and I'm feeling a bit better again. I can return home today, and we revert to the plan.

Keep out of mischief. Recover. And next week, I hope to be back on the chemo.

2018, for me, is fundamentally an ordeal to be endured. I'm OK with that. But this succession of delays - being repeatedly knocked off the plan - has really challenged me. It's been rough, physically and mentally. And none of us is at our best, mentally, when we are at our worst, physically. Today I feel optimistic. But my mind, like my body, has fluctuated.

This last week, I've been sharing a ward with three other guys, all dealing with similarly severe medical challenges. There's been a nice sense of camaraderie. Plus I've felt like the old hand, having been dealing with this all much longer than any of them. It's also enabled me to observe, as others grapple with it, quite what a big deal it is - blood cancer and bone marrow suppression. Maybe I will cut myself a little slack.


That's all you need to read in order to know how and where I am. (I'm OK. I'm at home. Until further notice.)


Last week, I went to the brand new Cancer Centre at Guy's Hospital. There's a Complementary Therapy Centre there, to which I have referred myself for a sequence of treatments. First up, I had some reflexology. I'm a pragmatic sceptic, when it comes to these kinds of things. Enough of a scientist to reject the premise of homeopathy, for example. But I'm also sure a bit of pampering can have positive health benefits. Having someone massage my feet was certainly relaxing and soothing.

I found the experience quite emotionally intense, which in large part was a product of feeling so respected, valued, accepted. The Cancer Centre there is really wonderful. It's obvious from the moment you check in that the whole building has been designed with patients in mind. The waiting area is divided into lots of little booths - you can sit and wait in a modicum of privacy, rather than in rows of seats. You don't have someone next to you coughing over you, either. And the decor and furnishings... these things matter. King's is a fantastic hospital in terms of quality of care. I'm very grateful to be treated here. But the Haematology Outpatients dept exudes a very old school hospital aesthetic. After all these years, it would be wonderful if my regular visits could be liberated from the worst excesses of hospital-land.

But the feeling of respect went further. When I went in for treatment, the guy began by asking me a load of questions about my diagnosis and my medical history. I've been for a few massages and visited a few spas, these last few years, and they quite often ask medical questions. Those questions tend to feel prying and impertinent. Why would I want to discuss this with you, stranger? And they also feel like a screening process. At any moment I'm anticipating that too much honesty from me will result in the therapist refusing to treat me. On this occasion, of course, it felt very different. I knew he understood. I felt accepted, for who I am. It was fantastic.

Some of you are probably a little sceptical about Complementary Therapy on the NHS. Should this really be funded out of tax? But for me, there was a value in the holistic-ness, far beyond the fact that it was free. As a token of that, I decided to make a £100 donation to charity - the money I might have otherwise spent in a spa. I have chosen to support Basic Needs - a charity working in mental health in Africa and Asia, in recognition that the benefit to me is as much about mind as body.


While we're on the subject of good places to donate money... I was asked recently to write something for Myeloma UK's quarterly magazine, Myeloma Matters. I wrote about the challenges of myeloma and parenting. Here's a link, if you're interested:

Myeloma Matters, Spring 2018


And finally, facebook keeps reminding me that a year ago I was in Japan, which has cheered me up no end. (facebook might be an unspeakable monopolistic unaccountable tech giant, partly to blame for trump and brexit. But it can also bring joy.) Next year... who knows where I'll be.

So, in homage to the wonders of Japan, here's a picture of my own cherry tree. In bloom, right now, like me!


Monday 9 April 2018


[Instrumental] *
Breathe this air - Jon Hopkins 

Some scores (not all in the same day, fwiw) ... KFLC = 456 ... Hb = 7.4 ... Neutros = 0.75 ... 

A lot went down, these last few weeks. My light chains went down, fairly dramatically, as a consequence of the chemo. This is good news (and somewhat offsets everything else). But, at the same time...

As anticipated, my red blood went down too - I’ve needed EPO injections and in the end a blood transfusion. Both of which can make an improvement in the short term, but it will take a while for my bone marrow to recover and start doing its job - and we won’t wait that long before I start taking the chemo again, which is in part the cause of the problem. I assume I will totter on with nearly-dangerous anaemia, for a good while yet.

And my immune system went down too. There’s not much that can be done about this. I had some G-CSF to stimulate neutrophils. But it is the adaptive/ acquired immune system that I am really lacking, and all I can do about that is to wait for better days and to try to avoid infection. Myeloma suppresses my immunity, and so do anti-myeloma drugs. After all, myeloma cells are malignant immune system cells. It is going to be an ongoing problem while I’m in treatment.

To top it all, I caught flu, which progressed to bacterial pneumonia, and I lost a significant chunk of my lung function. I was admitted to hospital last week where my blood “oxygen saturation” - which should be 98% - dipped as low as 74%. No wonder I was feeling so shit, the last few weeks. Insufficient oxygen in my too-thin blood, plus an excess of infections overwhelming my impoverished immune system. It has been a miserable experience. Frightening too: this is one of the more likely ways that myeloma kills.

So I spent 7 nights in the haemo ward, on a variety of antivirals and antibiotics as well as a nebuliser to open up my lungs, an oxygen canula up my nose, and all manner of other pills and jabs. They let me out on Saturday. I’m a lot better, though still very neutropenic and anaemic, and I’ve been warned to expect it will take weeks for my lungs to recover.

I think I’d been brewing up my infections for 3 or 4 weeks before I was admitted to the hospital. At the same time I had had some real problems with neuropathy (induced by the chemo), and muscle spasms (which seem to be my body’s panic reaction when things go wrong).

I’m now taking baclofen as an anti-spastic, which has improved my symptoms. But baclofen is a drug with a truly terrifying list of potential side effects of its own. Not least its potential for severe physical addiction, which I will have to attempt to navigate when the right time comes and I want to stop taking it. Medicine is a wonderful thing, but I do hate the fact that whatever befalls me, the answer is always another prescription. The list of things I’ve swallowed or had injected, these last few weeks, is quite staggering.

All in all, it’s been a pretty grim month. As lousy as anything myeloma has ever served up to me. Painful, debilitating, quite scary. And I’ll be keeping a low profile for a while as I (hopefully) recover. I’ve missed at least 3 weeks of chemo, but I should be well enough to start again in another week or so. I can hardly contain my excitement!

* When it’s like this, there are no words

Wednesday 7 March 2018


Thank you for the party, but I could never stay. Many things, on my mind. Words, in the way
Thank You (Falettinme Be Mice Elf Agin) - Sly & The Family Stone

Thank you

The last few weeks have been hard. On top of everything else, a virus finally got the better of my immune system at the weekend. In combination with the aches, the anaemia, the endless cycle of drugs, the long time horizon in front of me... it all adds up. I suspect that the relentless bloody anaemia is the real villain. I'm getting by with about a third less blood than my body really needs. I'm heartily sick of the whole thing. No matter how soon now it feels better, it will not be soon enough. I posited an idea to Marisa the other day - conjured out of my imagination - that maybe the sudden death of myeloma cells could be a cause of sickness and pain all of its own. It turns out, with a little research, that this is a real thing - "tumour lysis syndrome". So maybe I'm feeling unwell because there is a lot of dead stuff in my bone marrow, and associated crap swilling in my depleted blood. That's one possible, positive, explanation for where I am. But whatever the reality, I simply have to persevere. It'll be a month or so before we're in any position to review progress.

So... I'm feeling a little better today... my head is above the water... I want to take the opportunity to acknowledge the group of people who are quietly, unobtrusively propping us up, right now.

I'm writing this post to say "Thank You", to you.

You know who you are.

When I'm least well, it actually falls harder on Marisa and the boys, than it does on me. Because they have to keep the normality going. Home life is not the same with a partner/parent who is only half present. One who rarely makes it to the breakfast table. My role, by comparison is straightforward. I just have to take the pills. There's not a lot of point me moaning about it, either. Myeloma looks a lot like laziness - as long as I just lie around doing nothing, I'm normally OK.

So I am very, very grateful to all of you who are doing so many things to make it less arduous for those who have to live with me! You are oiling our wheels by helping the children get to and from their schedules. You are bridging gaps (or papering over cracks) by including them (taking them out sledging, for example, last week). You are ensuring that they get out of the house, and that their lives are not constrained by mine. You are feeding us - heart (cake) and soul (meals). You are there for Marisa to hang out with - whether its a mid-week evening or a last-minute loose-end Sunday. You are making plans with me, and then not caring when I endlessly cancel and reschedule. And a load of other things too.

Taking an interest in us. Checking in on us. Looking out for us.

You are quite a big group of people, which is very flattering. Some of you are further away, from where it isn't always easy to make a hands on practical difference. But it really does make a difference, to us. All of it. Every outstretched hand. I cannot conceive a better definition of friendship. I won't get to thank you all face to face. Anyway, it would undermine the whole interaction if I did. So...

Thank You. All of you. I cannot really express how much it means to me.

Maybe I was naive to imagine that I might sail through this chemo less grimly than last time. Though I suspect, with a little hindsight, this will transpire to have been a relative blip. However it pans out, I know a much more profound "blip" awaits us later in the year when I have to go through another SCT. Only after that will we be able to stand on our own 10 feet again. In the mean time, stick with us, please.

There's some very nice soup in the fridge, which is where I'm going now.

Today is my 5th "birthday" since my SCT in 2013. Almost five years treatment free. Hopefully, that will be the pay off from SCTv2 too. I looked back through 5 years of posts on dialm, wondering about the most important question... which artists get most airtime. Only three have featured three times: Neil Young, David Bowie, and Tame Impala (who are a special case... where dialm started). A few more have appeared twice: Foals, Primal Scream, Ride, Rudimental, Scissor Sisters, Simon & Garfunkel, Teenage Fanclub, The Shins, Smashing Pumpkins. That seems like a fair snapshot of me. My music collection always did have an unexplained overweight to the letters P, R, S and T. Is this relevant? Is it even interesting? I have a feeling the steroids are kicking in again... which will be my subject matter when I next write...

Thursday 1 March 2018


Here he comes, he's all dressed in black. PR shoes [*] and a big straw hat. He's never early, he's always late. First thing you learn is that you always gotta wait. I'm waiting for my man
Waiting for my man - Lou Reed

End of Cycle 1 ... Neutros = 1.4 ... Hb = 9.8 ... (KFLC tbc)


Those who've seen me around - probably walking a bit unsteadily, certainly wincing - will know my last couple of weeks have not been good. This is in part due to back pain and bone pain. I'm not certain what has caused it all to get worse: whether it is my myeloma progressing; or whether I've aggravated it; or whether it is my body becoming resistant to the painkillers; or whether it is the adjustment/accommodation into the start of treatment. Whatever the cause, it hasn't been much fun. On top of this, I'm feeling even more out of breath than before.

(Plus, I have the ups and downs of steroids to contend with. But more on that another time.)

In summary, not great. I have been reminded - as if I needed it - quite how grim myeloma can be. Though it could, of course, all be a lot worse. And I'm optimistic that the worst of the bone pain is coming back under control. Hopefully the next few weeks will be less arduous than the last.

When I arrive to get my new prescription, the doctors take it all quite seriously. My anaemia is becoming a real concern, but there's nothing to suggest the drugs are making it dramatically worse, so no reason not to continue the treatment. We won't have any meaningful feedback on whether the drugs are working, for another month (they took a blood sample today, but it takes a week to get the result, and anyway, one result on its own won't tell us much). So, we continue on the current course.

They suggest to substantially increase the doses of my painkillers. Hopefully I can return to some quality of life that is a little more bearable. Living "in" it, one sometimes lacks the perspective to see what's going on. It is only when the docs ask me the clinical questions - what is the pain like, how has it changed over time - that I appreciate that living as I have done of late is not OK. It's not just part of the process. It's not my lot in life. It's not just something I have to put up with. It's not just something I have to keep quiet about. Actually, I have a right to expect better, to demand better. Better, in the immediate sense, meaning stronger drugs!

One cycle down, 3 or 5 to go.



A little about the second drug in my treatment triad: thalidomide, of which I currently take 100mg each day. I'm intrigued to be taking thalidomide, because its name is so arresting, so shocking. There isn't a medicine on the planet with a worse reputation. Originally marketed as an anti- morning sickness medication in the late 1950s, thalidomide did appalling damage to the unborn children of unsuspecting mothers-to-be, before being taken off the market again in 1961. Having failed patients so badly in the past, the medical profession is understandably making a significant effort to avoid any more unborn children being exposed to thalidomide. This basically means ensuring those of us taking it don't procreate. I'm not aware of any evidence that thalidomide can affect a baby from its father, but no-one should even want to let that risk exist.

My supply comes in rather glamorous packaging - practically gift wrapped - and with extensive instructions and warnings. The hospital checks up on me too, by asking all sorts of very personal questions. If I were female, they would insist on regular pregnancy tests. I can be grateful of being spared that intrusive indignity. Frankly, it is all a little unnecessary: having managed to have only the children I wanted to, these last 30 years, I have no intention of letting my guard down now.

The thalidomide crisis/scandal served to demonstrate the necessity for proper clinical trials, and to show the need for proper processes to manage and monitor drugs. It is also a striking example of the pharmaceutical industry failing to live up to its responsibilities. It is an important story, but it is not my story.

The reason thalidomide proved so devastatingly dangerous was, ultimately, the reason it was considered as a possible cancer treatment. The deformities in unborn children were caused, we know now, by Thalidomide impeding blood vessel formation. But it wasn't until the mid 90s that this property (called "antiangiogenesis"), was recognised and considered as a possible cancer treatment. Surprisingly, it turned out to be most effective in blood cancer - a cancer where one would intuitively imagine blood vessel formation is not a factor. (Do myeloma tumours have blood vessels?) The pharmacology is complex, and the effects of thalidomide are still not entirely explained. It does a number of things, but we don't really know which of them gives it the anti-myeloma properties. As well as stopping new blood vessels from developing, it is known to inhibit the development of the cells in the body tasked with breaking down old bone ("antiosteoclastogenesis" - just rolls off the tongue!). One of the symptoms of myeloma - the biggest single problem, for me - is that it alters the balance between bone destroying and bone building cells, so that bone is destroyed more quickly than it is replaced. Thalidomide appears to act in the opposite way, but it is not clear whether this helps to explain why thalidomide kills myeloma cells. Maybe it is just a bi-product of interfering in the same processes.

Thalidomide and the other drugs that have more recently been developed in the same family (lenalidomide and pomalidomide, which are presumably working on the same pathways), are not completely understood. We know they work, but not exactly how. You'd be surprised how common that is in medicine. This group of drugs are classed as "immunomodulatory", but given that they are used to treat myeloma, a disease of the immune system, the classification really doesn't tell you much!

Thalidomide is often part of people's very first ("front line") treatment. When myeloma relapses, it is normal to move on to different drugs; the general premise being that the disease is likely to become resistant to drugs it has been exposed to before. As it happens, I didn't take it last time round (because it wasn't part of the trial protocol I participated in). If it weren't taking it now (this time round it is part of my trial protocol), then I think it is quite likely I would have ended off missing it out altogether. That it could easily not have featured in my treatment at all, I find remarkable, considering that less than 20 years ago it was the very first available alternative to old school chemo. That shows how quickly the treatment options have changed and are changing. It is quite likely that I will take its siblings - particularly lenalidomide which seems to have the best combination of effectiveness and fewer side effects - at some point later in my journey.

The side effects of thalidomide are basically that it can suppress bone marrow function. So it can cause or exacerbate neutropenia (weakened immune system) and anaemia. Given that these are problems I already have, there's a risk that things get worse before they get better. That's how it feels right now, with me puffing at even the slightest exertion. Still, I haven't been struck down with any infection (yet) and for that I must be grateful.


(* PR shoes = Puerto Rican, i.e. "Fence Climbers". Not, as those of us in the trade might incorrectly surmise, Public Relations shoes. Though in spivviness at least, if not in practical law evasion features, the difference isn't necessarily great.)