A corner?

I think, at last, things have turned a corner. So it seems appropriate to bring you up to date.
Treatment
I was on ixazomib & thalidomide from January until September last year. At the end of treatment we thought it had worked, if not amazingly, at least adequately. But in October the doctors decided that the response wasn’t good enough and we needed to do something else. Looking back now, it is clear from my results that the treatment worked for a brief while. But having reduced my light chains by 50% after the first 4 months, it stopped having any effect, and by the end they were going up again.
I started on lenalidomide & cyclophosphamide in November. After three months, this seems to be working, though my myeloma insists on making it a two steps forward one step back experience (only once in the last year have I had 2 consecutive “good” months). At the end of cycle #2 my numbers were going the wrong way again, and my nurse was forewarning me that the likely third line of attack would be to switch to a regime called DT-PACE. Chemo is never easy, but I’m terrified of “intensified” protocols like DT-PACE, which consists of 6 drugs, continuous infusions over multiple days, and requires hospitalisation for part of each month. And anyway, there is a negative prognostic implication every time my myeloma it resistant to another drug. Especially so for lenalidomide, which is one of the real workhorses of myeloma treatment. So I was intensely relieved, yesterday, to find another big drop after cycle #3. Two steps forward, I hope.
I know it is entirely possible that cycle #4 will go the other way again – my myeloma’s most distinctive feature is utter unpredictability – but I’m cautiously optimistic. My light chains (199 @ 24th Jan) and k/l ratio (24 @ 24th Jan) are now the best they’ve been since early 2016. And, although I know my subjective experience doesn’t always align with the numbers, I have been feeling so much better, the last few months (pretty much since I started on the new regime), that I am inclined to believe that these drugs have now knocked out areas of myeloma that had until recently stubbornly refused to succumb.
My current expectation – though this changes all the time – is that I will continue on this regime until the end of April, and finally be ready for stem cell transplant in May.
A couple of months ago I found myself doubled over in pain that turned out to be a kidney stone. I’m pretty certain that this is the third time I’ve had kidney stones since my myeloma diagnosis. There’s some disagreement between my medics about how likely myeloma is to cause kidney stones, but I believe this stone was calcite, and I live in a permanent state of calcium supplements and with a disease that deposits calcium in the blood… it seems reasonable, to me, to point the finger at the myeloma. One facet of myeloma is its ability to cause such a wide range of knock-on issues. One has the sensation of making incremental visits to more and more corners of the hospital. So, off I go to the awkward and embarrassing men’s problems clinic. On previous occasions, I must have passed my stones. But this one was too big (8mm): I had to have it operated on this week. It’s best not to think too much about the operating process, and just be grateful for the general anaesthetic. Suffice to say they gain access without making any incisions. When I woke up they told me they’d left a “stent” in the tube between my kidney and bladder, with a string to enable its removal. I’ll admit to not feeling quite right while I had this string hanging out, and I was glad to go get it removed yesterday. I was shocked to see the stent: I hadn’t imagined it would be about 30cm long. Having that pulled out of… well, it’s done now. 
Life (quality or lack thereof)
I won’t dress it up: last year was awful. My time on ixa/thal was grim. I was hospitalised twice with flu and pleurisy. I had a lot of physical symptoms and side effects: a bunch of new rib fractures (including my sternum), a lot of bone pain, posture problems, shortness of breath and generally feeling unwell. I had no energy. If anything, the mental side effects were worse. It was only after I stopped taking the drugs that I realised quite what they had been doing to my head. I was, I’m certain now, suffering treatment-induced depression, to the point of being suicidal. (It’s not hard to be suicidal with myeloma. The train of thought goes something like “You have no quality of life. The only reason to go through treatment is to be around for your family. But when you feel so bad, what good are you to them? So… what are you going to do about it?”) It was only when I came off the drugs that I gained any perspective on what had just happened to me. I’m sure plenty of people observed, during the course of the year, that I wasn’t in a good place. But, one inevitably bottles a lot of it up. I can recall thinking that the only useful function I could serve in my family was to carry my burden quietly, so that Marisa and the boys didn’t have to share it with me. So… that added loneliness to the symptoms. It was just horrible.
The good news is that the current drugs don’t seem to give me any serious side effects. I’ve had some problems with neutropenia, which is pretty common on lenalidomide, and could be dangerous if not managed (I’m taking G-CSF several times a week to counter it). And I still get the ups and downs from steroids, which is no fun for me or those around me. But these are minor things in the broader scheme. I have energy. I have motivation. I am largely pain free. I no longer crack ribs every time I stretch out my arm. And now the kidney stone is gone, too.
It has been nearly 18 months now since I was able to work, and I am very, very bored. One consequence of my myeloma’s zig-zag response to treatment is that I never know what’s coming. I started treatment thinking I’d have a transplant in summer 2018. As recently as October, I thought it was imminent – in which case I’d have been back on my feet (with a following wind) by now. Now it seems that it will be 2019. But only last week, I was steeling myself for yet another change of treatment and prognosis. It’s impossible, with all that going on, to commit to anything. Just when one gets to the point of making any kind of plan, or pledge to oneself, something unanticipated (and usually awful) comes along to wreck everything. When you think you’re trapped in an endless cycle of miserable, painful experiences, you lose all your willpower.

I’m certainly not robust enough that another knock back wouldn’t have exactly the same effect as has happened to me repeatedly during the last year. So, if this proves to be false hope – if the last downward zig were to be offset by an upward zag next month, and I were to fall back into despondency (which I most certainly would do), then you can read all of this as a cry for help – not just from me, but on behalf of the people who have to live with me.

But maybe, just maybe, I have finally turned enough of a corner to put this particular phase behind me. I feel I can tentatively begin to imagine doing things. Living. Which is, after all, the point.

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Brexshit

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.

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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

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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

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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.

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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.

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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.

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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.

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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.

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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.

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