Monday 14 December 2020


Let rip, like you drank all of the tequila
Tokyo Drifting - Glass Animals

I'm alright, jack

Somehow I have felt no urgency to post, these last few months. There's been no myeloma news. I don't know my light chain number right now, but the indications are it's not moving too fast, I'm certainly not experiencing anything approaching symptoms. Indeed, I've been as good as it gets - little fatigue, and even my back has been OK.

So, I bristle each time I hear someone wishing for an end to 2020. This is a good year, thankyouverymuch.  If we're sick of 2020 merely for the inconveniences it has contained... well just take it from me things can be a lot lot worse than that. If you think 2020 was bad, go re-read my posts from 2018. That year really was a shocker.

Of course, for some covid has been a much more significant trauma. And indeed, other sources of personal trauma haven't ceased either. If 2020 has been hard on you, or those you love, I offer - as always - a little shared strength to get through.

In our house we have retained as much sanity as possible. It's hardest for the boys, with this on-again-off-again life we all lead, and their social lives have been really curtailed. Marisa and I have both at least had work to distract us. (I've ended off taking a part time role managing the local community centre of which I had previously been a trustee for a number of years - it's a long story.)

The biggest trauma in our lives, during 2020, was probably saying farewell to our little red car. For the authorities it was a polluter that should be off the streets. But for us it was also a link to the past since it was once upon a time my grandparents' car. Still, if waving her off to scrap was the worst thing that's happened this year... I clearly don't really have anything to complain about.

Back in March, the first lockdown prevented us taking a trip we had planned to Mexico and Belize. In the familiar spirit of living-for-now, we've concocted another of our mad little schemes for Christmas. It is dependent, though, on successfully getting on a plane... I won't jinx it by writing it up here today. Assuming the plan comes off, I'll tell you about it later.

In the mean time, have a Happy Christmas, and stay safe. Here's hoping vaccine derived immunity releases us all to a more "normal" 2021. Our collective New Year's resolution better be to make the most of the opportunities we get?

Tuesday 16 June 2020

Myeloma 101

Can I take this for granted?
Sex crime 1984 - Eurythmics

... KFLC = 101 ...

Another teleconsultation with the doctor. Hospital appointments by phone are vastly preferable, as long as there’s nothing much to discuss. I hope this is a change that we can retain long after covid.

Roon 101, Rachel Whiteread (2003)
A cast of a now-destroyed room at Broadcasting House,
where Orwell once worked, and which supposedly
inspired the idea of Room 101 in the novel 1984.
My light chains are down again. A light chain score of 100 would have been my most optimistic aspiration for the outcome of the transplant. Instead, at Day +100 the results were pretty poor, and I was warned to expect to be back in treatment within months. But since then, my myeloma has unexpectedly retreated: KFLC = 250 in December; 160 in March; 130 at the end of April; 101 on 8th June. In some ways this response is even better coming after a delay, as it’s still on a downward trend. I don’t want to jinx myself by imagining next time’s score... but any further drop would compare with the absolute best response I've ever had.

I didn't waste either of our time on the phone asking why it's happening, or whether it will continue. I know that no-one knows. Still, I can approximate some rough prognostics. I might have a few years space, rather than just a few months. Of course, there’s no certainty - it could all change next week. Still, for now I’m pretty pleased with myself. Forgive me if I’m not overly sympathetic to anyone else’s lockdown blues.

Two nerdy appendices:

1. Why would myeloma levels drop after a delay?
myeloma cells are a type of B cell.
B cells normally produce antibodies;
and light chains are a component of antibodies
I don’t think there’s a definitive answer to that - certainly not one my doctors have offered to me. My assumption is that it’s to do with the hierarchy of cells. We know myeloma manifests in B cells, and also that it must exist in the progenitors that produce B cells. I don’t know if we know exactly how far up the hierarchy of stem cells it goes. I’d imagine it must go quite far up - that would explain why mm is so hard to cure. My assumption is that maybe the transplant has done more damage further up the cell lineage, so it is taking time for the response to work through to light chains - which are a downstream measure. If a population of B cells survived the transplant, but populations further "up" the hierarchy were more affected, then the observed effect "down" at light chain level would be that the reduction is delayed, as myeloma B cells are not replaced.

2. Why am I able to hope for relatively long time before my myeloma rears back up?
Some myelomas are faster than others. The prof told me, long ago, that I should be glad to have slow-to-go-down myeloma, as it is probably also slow-to-come-up. This has seemed to hold true. The key measure - I think - is beta 2 microglobulin level (β2-m or B2M). Higher β2-m indicates faster likelihood of relapse (and worse survival). Mine has always been low, and that’s a positive prognostic indicator (it’s the basis for staging the disease, which is why mine is always “stage 1” despite all the grief). I have plenty of negative prognostics too: the genetics of my myeloma are high risk (del17p); I get problematic levels of bone damage; it’s proved stubborn to treat; and I’ve got through a lot of lines of treatment... But despite all that, it’s probably going to continue to be slow. And slow, when it’s in retreat, is a very good thing!

Wednesday 13 May 2020


Did the heartbreak change me? Maybe, but look at where I ended up. I'm all good already. So moved on, it's scary. I'm not where you left me at all
Don't Start Now - Dua Lipa

Ups and downs - light chains down (KFLC = 130 ... κ/λ = 42) , spirits up 

Last week I read an article by Zoe Williams, musing on lockdown fatigue:
"I suspect it’s not gradual, it’s really sudden. You spend four weeks making banana bread and doing yoga, managing your anxiety, looking on the bright side, curating your half-hour worry-window, and then, wham! You can’t take another second of it."
And so it may be. Feels like the UK passed that point. Goodness knows where we're heading. The park is increasingly busy and I'm torn between empathy for people who have been cooped up in airless flats for many weeks, and worry about whether a little release will cause a lot more covid. We're going to find out.

Lockdown is hard for those in cramped living, with insecure employment, coping with pre-existing health problems and maybe with abusive relationships. Hard for young people, whose sense of urgency is greater and who are not programmed to be risk averse or to choose personal sacrifice for the benefit of the wider community. Easier for those in large houses, with work-from-home jobs, or retired in leafy villages. But I think it might be easiest of all for me. I really, personally, don't much care. I'm enjoying the food on the table, the small acts of generosity, time with my family, playing at being a teacher. Are there things I miss? Of course. But when was that not true?

To celebrate the return of my hair
and the absence of any likelihood of judgement
I dyed it blue for a couple of weeks
Most of all, I'm enjoying the mental release which comes with rare personal good news. At Day +100, things looked bleak. My numbers had barely halved, despite the extreme poisoning of the SCT. My disease was, at best "stable". My prognosis was counted in months until relapse. But myeloma is consistently unpredictable, and mine is reliably slow. Two months ago, my numbers dropped 20% without warning... and two weeks ago, they'd fallen again, to 130. This is the lowest my light chains have been since mid 2015! And, unusually for me, there's a clear direction of travel over a period of months now (rather than the usual seesaw), and the slope is down.

To view it through the slightly more niche measure of κ/λ ratio... I've hovered around or above the treatment threshold of 100 for a very long time, but last measure it was 42. My Hb level was even defined as "normal" on the blood test results. I cannot recall a single time that has been the case.

So, understandably, I hope, I'm not about to let the covid crisis crimp what may be the best bit of living I get. Other people may be willing this over, but I am not. Wishing your life away is extreme foolishness.

The other good thing about being healthy, now, is that I suspect I have an unpalatable choice coming my way, as life opens up: whether to try to continue to shield, or to take the same level of risk as everyone else. Shielding would mean Marisa and the kids, as well as me, and I've been reluctant, all the way through to countenance keeping them trapped at home once everyone else is allowed out. But obviously the risk is real, and depending on how vulnerable I think I am... well, I'm not stupid. The only alternative I could imagine would be to take myself away from the family completely - but that could mean a separation of months, even years, and I don't have that kind of time to spare. So... I'm grateful if my illness has remitted at just the right time. I can probably afford, to some extent, to take my chances. I'm deeply concerned for all the other myeloma sufferers I know for whom the timing is worse.

Of course, caveat coming, the downside of this timing is that its quite likely that the very moment the covid crisis abates, will be the moment my bone pain returns, and I will swap this reality for another face-off with death. But that's even more reason not to wish away the time I have.

Part of being sick of lockdown is that you're probably in no mood for philosophical exhortations from me. So I'll duck the temptation. If you're beginning to question what used to seem important, beginning to wonder if it's ok to have no greater objective than to get through this with your sanity and good humour intact... then you are somewhere on the path I've been travelling for a while now.

Love to all - stay safe.

Wednesday 15 April 2020


UK support and guidance for ”highly vulnerable” people during covid pandemic

I have myeloma. This means I’m deemed high risk for covid. The government promised, early, that people in my position would receive a letter advising us to shield. The reality has been chaotic. I was moaning, to a friend who is a GP,  about the impossibility of getting a grocery delivery. She suggested a user-perspective on what it’s like being “highly vulnerable”/“shielding” might be useful. So, here goes. I don’t know who will read this, or if it will make any difference...

Firstly the process of being identified as "highly vulnerable" is a mess:
  • I received an SMS from the NHS, followed by a letter from the Dept of Health (DHSC). I know many other myeloma patients who did not. The list is clearly incomplete.
  • I’m told the list was given to retailers to match to customer records. That process doesn’t work. I spent 2wks convincing Tesco I am on the list.
  • Tesco asked to see a copy of my letter. It wasn’t obvious to me which letter they wanted to see. None of the correspondence I received looked like an official “entitlement”. It would have been much more helpful to me if I had been given a registration number or something that I could easily pass on to anyone from whom I was asking for support. I have a medical exemption card to show I don’t need to pay for prescriptions. I could get a blue badge to show I am a disabled driver. Why don’t I have a “covid vulnerable” card/badge to enable me to access support?
  • The “self registration” website appears to be pointless. I was told I needed to register on it even though I’d already had a letter. It was not clear why.
  • I know several people who attempted to self register after not receiving letters. They got an automated response telling them to contact their GP. It seems you can’t self register... so what’s the point of the website?
  • GPs have clearly been given conflicting advice, as I know some have told myeloma patients completely contradictory things.
  • In normal circumstances, my first point of contact for myeloma stuff would be my consultant/CNS. No-one has advised us who to speak to at the moment. Should we continue to contact the hospital, or our GP?
  • I’ve had no communication at all from the hospital, which is surprising as they know me, and my circumstances, best. It’s ridiculous that the hospital can’t send an SMS to all its myeloma patients. (After all, my son’s primary school can communicate with parents by SMS.)
  • So, overall, the process for getting on the list is totally confusing. We don’t know if we are on the list; how to prove it if we need to; what being on the list really means; or who our points of contact are. And we know different people are being told different things.
  • I have no complaint about my GP - who has called me personally twice, or my hospital team - who have answered all my queries. The problem is clearly a total lack of systems, a total lack of preparation, a failure to think through the process, and inadequate communication to us. It has left patients very confused.
  • On top of that, we find ourselves having to justify whether we are vulnerable. Given the sensitive topic (our health risk), it’s unpleasant and intrusive to find oneself having to justify one’s need over and over again.
The shielding advice is ridiculous:
  • A one-size-fits-all approach doesn’t recognise that our situations are different. My hospital team, for example, don’t think it is necessary for me to stay at home. I agreed with them it’s ok for me to go for exercise, but not to the shop. The published advice is inflexible, which ends off meaning we make our own interpretations of it. It would be far more sensible if the advice was a bit more adaptable. Even better if our (hospital) doctor had been able to provide a tailored version of the advice. The problem with advice that doesn’t “fit” is once you’ve discounted part of it, you take the rest less seriously too.
  • Some of the advice makes no sense. It says the people in my household don’t need to follow the same shielding behaviour as me. But they clearly do, otherwise they might just bring covid home.
  • Some of it is impractical. It says to stay 2m from people in one’s own household. I have a 7 year old. How does anyone think I can maintain distance?
  • Basically, the advice doesn’t reflect real circumstances. What’s the advice for people with young families? What’s the advice for elderly people who need visits from care workers? It’s as though whoever wrote the advice didn’t actually think about real people.
The other thing that doesn’t seem to have been considered is the support we might need:
  • Is seems obvious to me that getting food is a major problem for all “shielded” people since no one from their households should be visiting stores. Yet the retailers aren’t capable of offering deliveries. Not helped by government telling the whole population to shop online - the result of which is that delivery services are overwhelmed. It doesn’t seem that there’s any functioning system of support in place here - and I know it has become highly stressful for many of us. If people can’t get a delivery, they’re forced to risk their lives by going to the shops.
  • Credit to my local council on this one. They have coordinated volunteers who have phoned me twice and promised me food parcels. It’s the utter lack of anything from central government that is the problem.
  • The other areas of support we might need - with medicine prescriptions, with hospital appointments - haven’t, to my knowledge, been addressed at all. As far as I can see all that has happened is we've been told to stay home, but not been given the support we need in order to be able to do so.
  • It goes without saying that we’d appreciate the ability to be tested, since if we knew we’d already been exposed to covid we wouldn’t need to stay locked up at home for months on end. And even if we hadn’t been exposed, widespread population testing might give us confidence that the risk in our environment is low. The failure to test is a prison sentence for us. When the government talks about the need, or not, for testing, I've never once heard anyone mention the impact on vulnerable people in the medium term. When the lockdown restrictions are lifted, how will we know if it's safe for us to leave our homes?
  • It is also worth pointing out that every time a government briefing or media report boasts that “most of those who died had underlying health conditions”, it feels like we are considered less valuable/ more disposable than other people. Media stories that doctors may decide to “save” ventilators and ICU beds for other people by denying them to us... that kind of stuff doesn’t exactly make you feel good or fill you with confidence.
Overall, it’s been a pretty unpleasant few weeks of clunky unthinking bureaucracy. I’m used to living with risk of dying. I’m used to periods of isolation. In some ways, we vulnerable people are better adapted to this situation because it's not so new to us. But the way we have been treated by the DHSC feels cavalier, poorly planned, badly executed, muddled, inconsiderate and lacking in compassion. It doesn’t feel like “the system” understands our situation, or really cares. I feel very sorry for those on the ground, front of house - our GPs and hospital teams - who are left to pick up the pieces for us when the infrastructure above them is broken.

It doesn’t feel like the DHSC has given us sufficient thought - which is alarming given that covid is going to be around for a long time, and the risk isn’t going to go away. If we get to the point where my wife is told she can return to work, and my kids must go back to school, but the advice to me continues to be to shield at home, then what? At that point do I have to move out or barricade myself in a bedroom?

Tuesday 24 March 2020


Come to my arms tonight, you and me together under electric light. She will dance in the poisoned air, just you and me forever by the motorway there. Stay together. Let's stay, these days are ours.
Stay Together - Suede

I can't help noticing, these last few days as the world has fallen apart, that my emotional reaction isn't the same as many people I speak to. It's not that I don't care, or I'm not worried. I guess it's just that the sky fell on me a long time ago, and for better or worse I am at peace with the world.

My friend Tom posted some practical advice on living in isolation, which I'll paste to the bottom of this blog. Some of the adjustments everyone is having to make - being trapped at home for months on end - are hardly new to the likes of Tom and me. That said, covid isolation isn't the same as a myeloma diagnosis. For most people it isn't going to be terminal, it won't be painful, and it won't involve endless chemo and all that bollocks. But, it is certainly traumatic. Here's a couple of thoughts from me, on accommodating trauma.

Firstly, recognise that in large part the adjustment is a form of mourning. Mourning for the world we all imagined which turns out not to be the world we actually inhabit. A month ago we all had plans for 2020. A 2020 where you can go to the pub, and I can go to Mexico. We envisaged time with friends which we will be deprived. We envisaged events and accomplishments that won't happen. We thought the world was just a nicer, more benign, place than it turns out it is. When I got my myeloma diagnosis, Marisa and I had been planning to move back to New Zealand's Motueka Valley, buy some land and build a house. We had photos of the area on our kitchen wall. I had a long list of "thoughts for our place" stored on my phone. For a while I found it extremely difficult to accept that that plan, that fantasy, would never happen. I had to mourn for it, and let it go. In the end, I waited until Marisa was away one day, and then took the photos down, replacing them with pictures of us having fun. I still have the list on my phone - I've never been able to bear the thought of actually deleting it. But it is buried somewhere I never look at it.

For better, or worse, this future is the only one that exists. Anything else we imagined was fiction. Biology - evolution in the form of genetic mutation - brought us here. No-one caused it. It has no "meaning". It just is. It's not even unique: people have lived through plagues and pandemics before. In 1918. In the 14th century. In the new world, when European explorers introduced smallpox and syphilis. And there have been many other times of hardship, war, disaster. It's not special. We're not special. So, we never thought our generation to have to live through and deal with something like this. Big deal. We were wrong. A large part of the anguish is simply that it isn't as nice as we wanted it to be.

It will take some time to let go. We might have to let go of 2020; of our social habits; of our established balance of freedoms and social responsibility; of our past economy. It's profoundly unsettling to suddenly be without a clear picture of the future. But it helps to realise that a lot of the pain we feel isn't because the life we're leading is actually that bad, but because of the gap between actual life and previously-imagined life. Lots of good things may even emerge from this experience: family relationships; a more equitable economy; a more sustainable lifestyle. Who knows. Those things don't make the trauma OK. Covid isn't "happening for a reason" any more than my myeloma is. But instead of being distressed by the gap between reality and fantasy, one can be happier recognising the positive aspects of the world as it actually is. To do that, first, you have to let go. It isn't easy. It took me years. But tomorrow, the only world we have will still be this one. Either we make the best of it, or we waste our lives. Covid is random bad shit, let's not pretend otherwise. But you can still grow through it. Bad shit can be good compost.

And secondly, recognise that it is hard being scared. Scared for loved ones, scared for ourselves. But the good news is that fear fades, if you give it and yourself time. I'm not scared any more. If I was scared, I'd have long ago lost my mind. If my time were to come in this pandemic... so be it. That doesn't mean I'm taking any risks. I'll take all the precautions I can to stay alive. I didn't go through all that toxic chemo just to let myself go now because I can't be bothered to practice good hygiene and keep some distance. Go easy on yourself. It's OK to be fearful. It's OK to have a meltdown. I've had plenty of those, over the last few years. Don't beat yourself up about it. Be kind to yourself. At the risk of sounding hippie, love yourself more and judge yourself less. Focus on the joy of today, however compromised today is. Over time, the fear fades.

It's easy for me to say this. I've had years to accommodate my personal trauma. It takes time. It isn't easy. It hurts. But it is possible to transcend.

Stay safe. Love to you all.


And here's some practical advice from Tom:

Some advice on self isolation

7-years ago I had a stem cell transplant. This meant that in the aftermath I was kept in an isolation room at UCLH for two months, and then when deemed strong enough sent home for a further 7 months where I was not allowed to leave the house and had to operate the kinds of hygiene techniques we all need to do now. I thought it might be useful if I shared what I learnt about staying safe and sane during that period. All the below are connected and overlap.

1. Firstly (and this is difficult) you need to adjust to and accept your new reality. Don’t fight it, live in the moment on a day by day basis.
2. Keep clean, continue to regularly wash hands even at home. Have a stringent hygiene routine. Have a shower every morning, keep good oral health as there is a weird connection between mouth infections and your immune system.
3. Go to work at home. Have a daily routine that you follow. It doesn’t literally have to be ‘work’, but keep a daily schedule of things that you do at the same time every day. I realise this might be difficult for some if there is no quiet space at home, but routine is really important.
4. Change your Jim jams in the morning. This sound silly but when you are staying at home it’s tempting to slob around in the same clothes you slept in. Don’t it’s unhygienic and bad for your self esteem.
5. Keep fit. If you are fortunate enough to have a house with a corridor use that to walk up and down or use your stairs. You can also get small pedal exercise machines off amazon for around 20 quid that sit under a chair. Stretch etc. Build this into your daily routine.
6. In family situations be mindful that everyone is going a bit nuts. Learn to forgive quickly and don’t nurse grudges.
7. Keep connections to friends and family. Share your feelings and experiences, let people know how you are you.
8. Eat as healthy a diet as you possibly can. Take supplements extra vitamin b and d.
9. Have a go bag ready if you need to go to hospital, a weeks worth of clean clothes, book or kindle, a travel kit of toothpaste, soap (yes really), deodorant a phone charger.
10. If you have a hobby it helps, if you haven’t this might be the time to develop one...

Wednesday 18 March 2020


Sometimes you look so small, need some shelter. Just running round and round, helter skelter. I've leaned on you for years, now you can lean on me. And that's more than love, that's the way it should be
Protection - Massive Attack

Remember the #1 rule of staying alive - do what the doctors tell you to do

Right now, you've got as many worries as I. You probably don't need much update from me. But here goes anyway.

I have spent the last couple of months feeling like I'm in the eye of the storm; trying to make the best of my situation and be a positive presence for my family. I had decided that going back to work is not a reasonable prospect, and that I need to focus on my mental outlook, facing down the demons in my mind which constantly question whether or not I am being productive. While life for everyone else continued as normal, that was quite a challenge - Marisa and the boys coming into the house after work/school and me having little to show for my day. But... I have been making quite a good job of the adjustment, I think. And anyway, the whole issue has now been overtaken by events.

We escaped to the sun (Lanzarote) for a week in Feb, which was wonderful. Though our plans for Easter (Mexico and Belize) have collapsed. If ever you wanted evidence of why its wise to live for today, consider our snatched holiday to Namibia last summer. An opportunity that had a very narrow window and which we could easily not have grabbed. So glad we did. And who is worrying, now, about money spent in the past?

There is good news on my health. My light chains unexpectedly dropped from 250 to 160 last week (and the κ/λ ratio from 100 to 60). And rather than the prospect that each month's appointment could hail the start of new treatment, we've moved on to less frequent visits to the clinic, and an assumption that my disease might be in abeyance for, if we're lucky, a couple of years. Of course, this could change as soon as my next blood test. No one knows why my numbers moved, or what it really means. But welcome news is welcome news.

So, as covid strikes, I consider myself very lucky indeed. One year ago I was in and out of hospital several times a week for transfusions. Two years ago, I was sufficiently weak that flu almost finished me off. Now, I think I am much more robust. However, I can't be complacent. Public Health England's current advice (as at 17 March), puts me in their category of "people at even higher risk of severe illness from COVID-19", and advises me to apply "rigorous" social distancing. My medics are reasonably hopeful about my current immune function, but have warned me that my diminished lung capacity (due to my busted skeleton) means that I'm certainly more vulnerable than I would otherwise be. So, reluctantly, I'm going to put myself - and the family with me - into a practical (not obsessive) degree of self isolation, as far as possible, from this weekend. We've already warned the kids that, even if the schools are still open by Monday, we will be taking them out. I have not enjoyed telling them that they may be unable to see friends/ girlfriends for months.

To be honest, though, my nurse told me today that they don't believe it is achievable for many of us to actually avoid covid - we're probably going to get it. What we do need to do is avoid all getting it at once.

In some ways, I'm well prepared for pandemic life. I'm used to living with no confidence about what tomorrow may bring. I'm used to periods of isolation. I'm used to listening to medical advice regardless of how I subjectively feel. I reliably wash my hands. Maybe I will find it easier to adapt than you will?

I'm very worried for my fellow mmers. As I walk round the park I look up at the hospital windows, behind which I know there are some very vulnerable people who will not survive if covid gets into their wards. And I'm worried for all my medics - who are exposed to risk by the nature of their work.

Right now, this feels like the apocalypse, and I am fearful for all of us. Not everyone grasps the severity of the situation and people will put themselves - and others - at risk by failing to adopt responsible behaviour. A death rate of 1% somehow doesn't sound so high. But that's not the risk. The risk is that something like 20% of covid infections require hospital treatment, and if everyone is ill at once, the hospitals will fail. I have relied, for many years, on my confidence that, whatever happens to me, I can scurry down to Kings where they will look after me. None of us can have that confidence, at the moment. According to the BBC the mortality rate in Italy is currently running near 8% - and the difference must be, in large part, that many people who might have survived had they received first class hospital care, were unable to access it. That's the risk we all face, and no-one should underestimate it.

Beyond the immediate, the impact is unimaginable. Already I know many people, in very different situations, whose livelihoods are drying up - people being laid off, or simply not given any more work. Others being told they must accept dramatic pay cuts. After I post this, I must go down to the community centre where my last task, before going in to isolation, is to tell our users, and staff, that we must close. None of us can know what the future holds. Our household is already making a big adjustment to lost income, and how we will budget and balance our books in the months ahead. I'm conscious we have a lot more fat to live off than many.

Let's hope my worst fears aren't realised, that the plague passes over us in a matter of months rather than longer, and that the economy is revivable on the other side. (If I were in government I'd be applying a helicopter-money or a "universal basic income" policy already. The longer those in power fail to do so, the more unnecessary suffering will accompany the unavoidable suffering.)

So... massive love to you all. Don't fret about me - I think I'm as well placed as most to cope and survive. Spare a thought for those in more vulnerable positions. Be a good neighbour. Do you know who, on your street, will be isolated and alone? And what are you going to do to support them? And most important of all - the mantra that has kept me alive for many years now:

Do what the doctors tell you to do.

Do what the Chief Medical Officer tells you to do.

Don't let complacency and disbelief make you a risk to yourself or those around you.

Look after yourselves. Look after each other. And don't forget to wash your hands.

Thursday 9 January 2020

Janus *

Look at my hopes, look at my dreams
Rent - Pet Shop Boys

The rest of my 100 days passed uneventfully. More focus on family and the kids than on me, which is progress in itself. And we had a happy Christmas and a peaceful new year (as, I hope, did you.)

Here endeth the good news.

Sadly my light chain levels are not what anyone might have hoped. They were 200 in November, 250 in December, only a little lower than before the transplant. It’s certainly not remission. My consultant calls it “stable”, but she is just being polite. It is not stable. It’s no better than where we were a year ago. This news triggers a number of quite intense feelings, with which I've grappled over the festive period. Disappointment. Trepidation. Frustration.
(1) All that, for this? The shitting and puking seemed more worthwhile when I imagined we were achieving something.
(2) I don’t relish the next line of treatment. I’ve been promised my next regime will be not dissimilar to the one that caused me platelet problems last year (pomalidomide instead of lenalidomide, plus cyclo and dex). And I can take it continuously until it stops working. So that’s something to look forward to.
But most of all, (3) is the endless perpetual unknowing. Remission would have at least promised a measurable, meaningful period of time when I could be confident I’d be treatment free. Now I don’t know if I’ll need to restart next year, or next month. I’m in the same interminable situation I have been in for ages. The transplant really hasn’t achieved anything.
All of that has been tough to face up to.

I had another BoMB, as inconclusive as ever. Not least because it was obvious that it wasn’t the first time they’d dug a hole in that location. Pepper pot pelvis, the consultant calls it, cheerily, and suggests they try the other side next time. I don’t anticipate it will be any more productive, as I'm just as battle scarred the other side too. I’m not brave enough to tell them I refuse to have any more biopsies - the doctors want, and deserve, all the information they can get. But the outcome is always unreliable, so it’s pain for no gain. How many more times is it worth bothering? (I once read that if it’s not possible to biopsy the sacrum, sometimes people have biopsies in their sternum instead... I’m trying to forget I read it. I really really don’t want to go there, but I won’t be surprised if I have to.)

I’m booked in for another whole body MRI to see if there’s been more bone damage in the last 6 months. If there is any sign at all, I think I’ll be straight back on the chemo. If not, we’ll wait a bit, though it is slightly like Russian roulette, in that by waiting we merely increase the likelihood that more bone damage will happen. My consultant says we should be "on the front foot", given that (irreversible) bone damage is my main symptom - i.e. treat sooner, rather than later to try to minimise the incremental deterioration. She also says that, given recent experience, we should be looking for "a new approach", as evidence suggests traditional regimes (imids / proteasome inhibitors / auto-sct) only work, at best, briefly. I'm not sure what all the possible new approaches are, though CAR-T is clearly the front-runner.

In the mean time, I have taken possession of my new spinal brace. It certainly helps in specific situations - when I need to stand around for any length of time, or when I need to sit in crappy chairs (of which the world is surprisingly full, let me tell you). It doesn't make any problems go away, but it makes them more bearable. It's a bit like wearing a corset. Though for the sake of my manliness I'm referring to it, instead, as my stab-vest.

I’ve had lots of people tell me, lately, how well I look. Which is nice. Really. Thank you. I feel a bit of a shit not responding very enthusiastically. But it’s complicated. And I know what I’m dealing with. Looks can be deceiving. I know everyone wants a happy ending. But it's not that kind of story.

We’re a long way through the looking glass by now. Front line treatment, all those years ago, was about recovering and reclaiming normality. And for a while, I did. 2 years ago the hope was that we could repeat the trick. But it hasn’t worked out like that. The consultant describes my situation as “a concern”. I can see by the looks on the medics’ faces that I’m in a different position; different prognosis, frankly. I’m not saying my time is up - we’ll probably get on to the long discussed CAR-T therapy at some point, and any outcome is possible (including, potentially, cure). But I’m no longer imagining a return to the years of worry-free(ish) remission. Future years are likely, at best, to be a mix of what I’ve gone through in the last 3: a good one, a bad one, a mixed one...

A form arrives from the DWP, to assess my fitness to work. As I give it to the doctor, the residual voice in my head that still tells me I’m exaggerating my predicament makes me attempt to justify myself:
“I would work if I could, but I never know what’s coming”.
Sometimes, one can understand more by people‘s expressions than by what they actually say. The look on her face tells me I was deluded to even be worrying about work. She says something about quality of life. The subtext is about quantity though, as much as quality. She signs me off as unable to work, and unlikely to be able to work in the future.

This week, with Marisa back at work and the kids at school, the house is very empty. I know in my head that I need to be creating a schedule that works for this me. It's easy enough, in principle, to draft:

Mondays - community centre trustee stuff
Tuesdays - go swimming
Wednesdays - write my book
Thursdays - a.n.other local charity project tbc
Fridays - go to an exhibition

It doesn't sound too bad, does it? Except it is a schedule based on keeping myself occupied, rather than being productive. And all around me everyone I know is doing what people in their 40s do: knuckling down to pay the mortgage and feed the kids. How often, in the past, I might have dreamt of escaping from the grind. Now, faced with it through no choice of my own, I'm really struggling with motivation. Arguably the greatest challenge I face, right now, is to answer another of the voices in my head, the one that asks me:
"Why bother?"

I'd pep this all up a bit for you. Sweeten the pill. Soften the blow. Make it a little more fun to read. Except, however ugly and unwelcome, it's the truth.

* Janus: the Roman god of...
     passages; and
I'm not sure where I am, but I think Janus covers all the possibilities.