Wednesday, 13 May 2020

Serenity

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

Co-vulnerable

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

Iso-shock

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

Comorbivid

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...
     beginnings;
     gates;
     transitions;
     time;
     duality;
     doorways;
     passages; and
     endings.
I'm not sure where I am, but I think Janus covers all the possibilities.

Saturday, 2 November 2019

Recuperation

We've got to hold on to what we've got
Living on a prayer - Bon Jovi *

Day +50ish

It's been a while since I sat at my desk. I have decided that, as of this week, some element of normality must return. So I've turned on the pc, and just waded through several months of unopened email. Nearly 1,000 messages. (Why does junk mail come in waves? A lot of spam about nail fungus.) So, while I'm here, an update for you.

I'm doing ok. I'm very bored, but that's a minor complaint really. My blood counts are alright - could do with a bit more red in my blood; hopefully that will come with time. But I've avoided any nasty infections (so far). And I'm regaining strength, though it comes slowly. Overall, I think my recovery has been easier this time than last, which is a pleasant surprise. Will be nice when my hair starts growing again, and I'm looking forward to having some actual energy.

My relationship with this blog is a bit conflicted at the moment. I know it serves a purpose, but I prefer, mostly, to face the other way. I have a stash of topics that, at some point, I will write up. On the transplant process. On medicine that makes you feel ill. On pain. On mortality. I'm not sure when I'll feel sufficient enthusiasm to commit these to binary. For many of you, though, who only check in here to see how I'm doing... don't expect too frequent updates. I'm 50 days in to a 100 day recovery programme. I've no evidence yet of how well (if!) it has all worked. I'm intending to progressively return to "normal", and see how it goes.

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One ongoing issue worth a mention, is my poor old back. I'm posting a recent MRI image of my spine. You can see just how many of my vertebrae are crushed, and how curved it is as a consequence. It has definitely got worse, these last 2 years, which is a little scary. What will happen next time I relapse? I've been told that I should expect that the damage is progressive - i.e. it will continue to deteriorate. I find this quite difficult to face up to (I find the picture hard to look at). No matter what treatment I endure and what remission I achieve, I'm left with this creeping disability. Even if they "cured" me, I'd live forever with this. I've recently been in front of the neurologist and an orthotics doctor. We discussed every possibility - from surgery to doing nothing. There aren't any great answers. Surgery really isn't a credible option: it's quite likely that, were we to fix part of my back up (by injecting cement to rebuild vertebrae, or by adding some metalwork), all that would happen is it would fail (break) at the weakest point. I'd be worse off after that. I am fearful enough of ending up in a wheelchair, without doing something that might accelerate the problem.

But otherwise, I'm on to a loser. My back lacks the strength to hold itself upright, and even a small amount of curve means the weight of my head (heads are quite heavy) is pulling the whole thing forward. It was comforting to hear the doctor acknowledge what I already know: that standing still is worse than walking; that I need to spend quite a lot of time lying flat on my back if I want to maintain any kind of posture; that it's unlikely my back will ever be free from pain. Our plan for now is that I am to be fitted with a brace, and see if/ how that might help. The risk is that using a brace leads to loss of muscle tone, making me increasingly dependent on wearing it. But I'm hoping if I moderate how often I put it on, I might be able to mitigate that. It's got to be worth a try.

I didn't understand, when I got my myeloma diagnosis, that disability was part of the prognosis. But I know now that similar problems affect lots of people with mm. It really is a bastard.

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* This choice of lyric is somewhat deceptive. The song came in to my head for the more obvious reason that 50 is ½ of 100.(Woah, we're half way there!) I'm pretty sure I used the same bit of Bon Jovi, 15 years ago, when writing about crossing the equator, while travelling overland (mostly by bus) from Antarctica to the Arctic. If you're paying that much attention, I salute you. I liked Bon Jovi when I was a teenager, but only really because I liked a girl who liked Bon Jovi. (She'll probably read this.)

I like a bit of lateral-ness in music trivia. If anyone ever asked me to write trivia quiz questions (if they've any sense they won't), then one of them would be the names of songs that do not feature on the eponymous album. Some classic examples are "Houses of the Holy" by Led Zeppelin (song ended off on the subsequent album, Physical Graffiti), "Waiting for the Sun" by The Doors (ended off 2 albums later, on Morrison Hotel) and "Sheer Heart Attack" by Queen (3 albums later, on News of the World). There's a few good examples from 90s indie: "Bring it On" by Gomez  was on their 2nd album, Liquid Skin. Meanwhile "His'n'Hers" by Pulp, "Screamadelica" by Primal Scream, and "Going Blank Again" by Ride, were all only released on EPs or as b-sides.  Are you with me? Too obscure? If you know any more, show off in the comments!

Saturday, 28 September 2019

Release

I’ve got to stand and fight
Release the pressure - Leftfield

I’m out!

I was so surprised, on Thursday, when the doctor suggested I might be ready to go home, that I had to ask twice what my blood counts were. I thought I’d got at least another four or five days to wait to get to the magic Neutros > 0.5 threshold. But by Thursday, I had already passed it. So, on Friday afternoon, they discharged me.

Obviously, I’m delighted, though still a little nervous that fever might yet drag me back inside. But let’s not dwell on the fears, and just be grateful for a pretty smooth transplant experience.

I’m at home. It will take a bit of time to work out exactly my recuperation trajectory. But my own bed, home cooked food... all good. Even being able to have a proper shower, now they’ve taken my PICC line out... I’m happy. And, of course, being with my family.

Saturday, 21 September 2019

Alone

Faces look ugly when you’re alone
People are strange - The Doors

Isolated. Neutropenic. Enduring

While I feel good enough to write, here’s an update. I’ve been in “protective isolation” for 3 days now. The upside is that I’ve already seen 3 World Cup rugby matches. They tend to wake me a little before 6 to do blood tests and the games (because of the time difference between London and Japan) are all between 5am and 1pm. Perfect. Telly is about the extent of my ambition. I even enjoyed an episode of Top of the Pops from 1988, on some random channel-hop (and indulged my inner nerd by watching the proroguement case from the Supreme Court).

The downsides are best glossed over: a lot of nausea, a very fluid relationship with the bathroom, a temperature  spike...

But I knew before I got here what this part of the process entails. The aim is simply to be alive at the end, and rely on the fact that horror dims in the memory. Prior experience is proving unhelpful - I have another perspective, when maybe less awareness would be better. At one point, sitting on the toilet, my brain volunteered that, at the current rate, I could have 1,000 toilet trips, before they let me out. That thought didn’t make anything better. (Things have calmed down since... maybe I’ll only sit on the throne 200 times!) So, I’m trying hard not to overthink. Just to let the time pass.

My neutrophils are at zero, so the next milestone will be when there’s any evidence of them returning. That will be “engraftment”, and indicate that I am beginning to recover. That’s probably a few days away yet, but hopefully not as much as a week.

Saturday, 14 September 2019

The point of no return

Fight like a brave. Don't be a slave. No one can tell you you've got to be afraid
Fight like a brave - Red Hot Chili Peppers

Day +1 ... and into the twilight zone ...

I had my melphalan on Wednesday. I was glad to get beyond the point of no return. Until the melphalan was actually going in, I half expected the whole thing to get cancelled again. I'm pleased to report that, as promised by the pharmacist, the anti-vom meds are indeed much improved on last time (specifically: Aprepitant), and I haven't been sick once. A little part of me thinks it can't possibly be working because it isn't bad enough (chemo-heads reading this will understand). But I'm sure I'll be disabused of that idea, soon enough.

When I harvested stem cells back in 2013, we got three times as many as we needed. Two thirds of them have been in the freezer ever since. However, my doctors aren't confident of the viability of cells that have been stored that long, and so we did another harvest last year. This time, no matter how much cajoling and pumping with expensive drugs, I barely produced enough for a single transplant (my bone marrow is a bit knackered). The decision was taken to use a portion of old cells, plus all the new ones. So many cells, in fact, that they divided the transplant over two days. So that gave me something to do on Thursday and Friday!

Oddly, then, some of the oldest cells in my body right now are also the newest.

Here's my cells (looking suspiciously like a side of smoked salmon), coming out of the deep freeze. Then they get a precise few minutes in a 37.5C bath, before being dripped back in to me. All over surprisingly quickly. In total we transplanted nine bags of the fellas.

So far, I'm feeling really much better than I had anticipated. And being at home, instead of sleeping in the hospital, is much better, for mind and body. But the trajectory, and the plan, is unchanged:. By the middle of the week I'll be without immunity, feeling crappy, and in protective isolation. This strange twilight will not last. Better to focus now on the middle distance: each day now is one closer to feeling better, even if I've got to go downhill now, before I can start going back up.

Tuesday, 10 September 2019

Plumbcentre

I got two strong arms. Blessings of Babylon. Time to carry on
The Riddle - Nik Kershaw *

Day -2

I had a "PICC line" (catheter inserted via a vein) 7 years ago for my front line chemo. But in those days King's insisted on a "Hickman line" (port inserted directly into the jugular) for transplant. Medicine progresses. Today I need only a PICC for the transplant, which is a lot less unpleasant (a hole in the upper arm, rather than one each in the chest and neck). Even the PICC insertion procedure itself is improved, since the location of the tip of the catheter is now monitored with ultrasound, instead of x-ray, making the process quicker and meaning it doesn’t have to take place in theatre.

I had a weird experience during today's insertion when I could suddenly hear a whooshing sound in my ear and a sensation like water was coming out of my ear hole. Apparently, this is what happens if the tip of the PICC is close to the jugular. It was a surprise to me, but not to the medics. Once the PICC was fully inserted, it stopped.

Hurrah for medical advances. I'm glad to be getting today's medical technology. Stem cell transplants have only been around for c.40 years. Before then, it wasn't possible to take stem cells from, and return them to, the blood. The preceding procedure was a bone marrow transplant, where the cells were taken from and returned to, the bone marrow itself. I can’t imagine bone marrow transplant would be much fun. Comparatively, stem cell transplant is a breeze.

So, plumbing now in place. One obvious improvement to human beings would be if we came with a port already built in. So that’s something I might ask God for, for Christmas.

The countdown: Tomorrow = "day -1" = chemo. I just referred to it, speaking to a myeloma friend, as “poisoning”. He suggested “cleansing” as an alternative description. I’ll go with that. The pharmacist tells me the anti-nausea meds have improved since my last transplant. So maybe tomorrow, too, will be easier than my memory tells me? After all these delays, I won’t quite believe it’s happening until the chemo goes in. My nurse compared it to sitting on a plane waiting to take off. Not a bad analogy - there’s always the possibility for delay or cancellation, until the moment the wheels leave the ground.

* I used a lyric from "Knock three times" for this post, but then I realised I'd used it before. And that will never do. So, I've edited, with an alternative. Not that Nik Kershaw should be a stand-in for anyone else. I loved this album in 1985 ...

Monday, 2 September 2019

Lviving

There are no lions in England
Lions - Ian Brown

... Stop Press ... Transplant next week !!! ...

I had another biopsy a couple of weeks ago. (I've lost count of how many that is now. 8? 9?) The good news is it was much better than before: a mere 10% plasma, as opposed to 80% a few months ago. (Normal is <5%.) Either things have improved dramatically, or the previous result was an outlier, or a bit of both. The somewhat perverse consequence, though, is I've been told I should proceed urgently to transplant.

Next week!

This brings dialm full circle. It is not easy to see where myeloma begins or ends;  with ups and downs often only definable in hindsight. And I deliberately masked some of that in the blog, by reconstructing a diary stretching back long before I knew I had anything to record. But there are precise dates, within the blur. One of those was that I first posted this blog the week before my last transplant - 6½ years ago. Not being a "noob" (as my sons would put it) means I have a fairly good understanding of what to expect, second time around. Lucky me! The running order is I'll have melphalan (poison) on Wednesday 11th; stem cells (salvation) on Thursday 12th; puking and shitting on those days and subsequently. Hopefully, I can spend the nights at home until the beginning of the following week. After that its the isolation room for 2 or 3 weeks. And then a couple of months slowly getting back on my feet. I'll keep the updates reasonably regular on here.

This new plan came as something of a surprise. Perennial uncertainty is one of the hardest symptoms of all, and its impact is quite difficult to convey, even to those who know me best and love me most. Can anyone, who doesn't live it, really appreciate quite what its like, never knowing what the next week holds? Less than two months ago, the outlook seemed very different. Our summer was just a question mark. I wrote on dialm:
"just when we thought we could make plans for the summer, we had to stop. The latest medical advice for travel plans is “wait a couple of weeks”, and “the timing might be better in 2 or 3 months”. I’ve been living with that, pretty much continuously, for years now. We wait a couple of weeks, but a couple of weeks never comes. As for the better times coming… I could be in the midst of a stem cell transplant in 3 months, for all any of us knows. It’s not easy."
I'm amused, I guess, to have been proved right. And thankful that we decided to ignore the medics' caution. We made the call that there might not be a better time than the present.

First up we rescheduled the weekend break that had to be abandoned earlier in the year (when an absence of platelets stopped me flying). People who don't know me well will wonder why I was so keen to visit Lviv in Ukraine. Those who know me better won't be at all surprised. I've wanted to go there for a long time, having read ages ago about its well preserved old town. It's one of those places with tortuous history - it has at various times been the 2nd/ 3rd/ 4th biggest city in Ukraine/ Poland/ Austria/ Sweden ... and so on. Until last year it was tricky to get to, but now there are direct flights. It's not an expensive place to be, so we booked ourselves a suite at the Grand Hotel, and spent a weekend wandering the lanes, stopping for coffee, cocktails and food.

While sitting outside a Lvivian cafe, we got a guidebook out, and put together a really rather crazy plan. The week before, we had been puzzling over exactly where to go this summer, now we'd decided we would travel, regardless of the doctors.
"It's the right time of year to go to Namibia", said Marisa.
"As if we could possibly get a flight, at this short notice", I replied, flicking open an app on my phone to prove my point.
Much to my surprise, flights were available, for a price. And so we spent the next few days working out an itinerary. Three weeks later, we were there. Namibia has been "on the list" for a very long time, but a bit of forced spontaneity added to the thrill.

It turned out to be an amazing trip. Thousands of miles of dirt roads, beautiful scenery, stunning wildlife, great food and accommodation. Even when you've travelled a lot, you can still find places that are new and wonderful. We were mulling it all over, trying to compare it to some of the best trips we've ever taken, and best places we've ever been. It's right up there. And to top it all, it was hugely reminiscent of Zimbabwe, which was lovely for me (if not a little trying for everyone else!).

We have a map of the world on the dining room wall. Each time the kids go somewhere new, they stick another pin in the map. I don't want to collect passport stamps for the sake of it, but nine times out of ten I'd rather go somewhere new than revisit somewhere I've already been. Having myeloma has, if anything, added a little urgency.

I'm not unaware (or ungrateful) of the privilege in my life. I had access to an excellent education. I am supported by a world class medical system. I have some money. I have a passport that enables me to travel where I please... Living with myeloma has maybe made me less reticent about letting it show - anyone who wants to be envious of me can go right ahead. I hope I've (mostly) made the best of what was available to me - I've worked hard (after a bit of slacking when I started university), and Marisa and I have been adventurous - taking career breaks to travel, using our holidays to go to unusual places, and trying to give our children some experience of the world's diversity. Travel and work have always been two things that sustained me. One of the biggest impacts. for me, of illness and uncertainty, is when it stops me making travel plans, or hinders my ability to work. Which it does, a lot.

I was talking to a friend, in the park, a couple of months ago. I asked about her summer plans. She asked about mine. I explained I hadn't any, and why. She said she was sorry to hear that. A couple of weeks later, we were talking again, only this time I had just booked flights to Windhoek. It's difficult, when things change so suddenly, not to feel a fraud. I relayed this anecdote to my counsellor *.
"I know my friends don't think I'm making it all up, but I do feel like I'm being melodramatic."
"But it is a melodrama, Alex. That's the reality."
Yes, it is. We really did go from nothing to Namibia in less than 3 weeks. That is the bald truth. I'm lucky to get to go at all, of course. But that doesn't negate the challenges of living with myeloma.

And I really did just scope out and plan for a sizeable work project, only to have to send my client an email today, giving my apologies that I won't even be able to start it. A clear demonstration of the futility of planning. I've avoided making big commitments for so long, and when I feel it might be safe to do so, I get knocked back. It's incredibly frustrating.

So, I'm not looking forward to the transplant, and I can think of a hundred other things I'd rather be doing... but if it releases me, even for just a short time, from the unpredictability, I'll be happy. Let's say, on balance, that I'm ambivalent about it all. That would seem the most fitting response. One thing I will take away from the last 2 years is a greater understanding that living for now means having the confidence to take a risk, and not worry too much about the consequences. I've certainly learned something about living in the moment. We spent the last week of the holidays in Sussex, and packing up around the house - the garden littered with bikes, cricket bats, footballs, paddling pool, hammocks, deck chairs, a kayak - I was able to literally count our blessings. Today the new school year starts, Gyles has changed schools, and Lyndon moves up to the junior playground. He is exactly where Ben was, 6½ years ago - which is progress I wasn't even sure I'd witness.

Yes, on balance, the puking and shitting that lies ahead will be, in the end, well worth it.

"Lviv" is Ukrainian for lion. But we didn't see any lions in Namibia (or Ukraine). I have told the kids this is a good thing: gives them a reason one day to go to Africa again. We were privileged enough to see almost everything else, including wild leopards, and both species of rhinoceros. Lviv while you can, people. Take the opportunities as they come. Tomorrow, who knows.

* For a long time, I only ever had counselling occasionally, when things were really bad. After the depths of last year, I decided it would be wiser to incorporate counselling as a regular part of my treatment - through good as well as bad. Even when things are good, I find unpacking it and talking about it helps me to gain better perspective. At times like now, I'm almost euphoric, because I am aware that I'm managing to live. I guess my counsellor has seen it all before, but I feel almost bipolar, reflecting back on conversations she and I had, less than 6 months ago, when I was needing transfusions several times a week.

Thursday, 11 July 2019

Faithless

I'm nervous. Cos I'm the left eye, you're the right. Would it not be madness to fight?
We Come 1 - Faithless

I do wanna write. And I don't. A lot to say. And nothing. I'll try to avoid a long screed of whateversinmyhead, though it isn’t easy to get it in any better shape, right now.

<short>
Start with the easy bit: the facts. After dropping dramatically in the first month on daratumumab, my light chains then went up, and up again in the second. Just when it seemed clear things weren't working, the count dropped again a couple of weeks ago, which may not be enough to class as good news, but certainly isn’t bad news. Honestly, no-one knows what this means. But alongside a bad bone marrow sample, the doctors tell me they think my 'eloma is "static", which is different from, and not as good as a "plateau" (but better than "progression"). We're awaiting the result of another whole body MRI, which should show up exactly what's there. It’s really going to have to serve as the “definitive” measure of where I am. Prepare for the outcome to be as equivocal as possible. In my experience, it usually is. Meanwhile, I feel really rather good, and my blood counts are almost normal. I'm not getting much fatigue (some acupuncture seems to have really helped). And the pain is OK, though it notably gets worse when my results are worse... and then better again when the results improve.

Depending on the severity uncovered by the MRI, we could be urgently seeking a new treatment... or not. And overall, I could still be heading for stem cell transplant or CAR-T. Indeed, one of the questions right now is whether having one has any bearing on whether I can subsequently have the other! Though unless we can get my disease under control, I may not be fit for any of them. Working my way through the drugs is not a good prognostic, lets be honest. I have never had - and do not want - any numerical estimate of my life expectancy. I always work on the basis that, at any moment, I've about a 50:50 change of still being here 5 years from now. But being in treatment, and the treatment not working well, must heighten the risks.

That’s the status update. One consequence is that, just when we thought we could make plans for the summer, we had to stop. The latest medical advice for travel plans is “wait a couple of weeks”, and “the timing might be better in 2 or 3 months”. I’ve been living with that, pretty much continuously, for years now. We wait a couple of weeks, but a couple of weeks never comes. As for the better times coming… I could be in the midst of a stem cell transplant in 3 months, for all any of us knows. It’s not easy.
</short>

<long>
What follows may or may not be helpful. Feel free to ignore me.

When I relapsed, I imagined a year of treatment, culminating in a transplant, and then a return to (relative) normal. But 18 months on, I'm not sure I'm any nearer to that. It’s forcing me to unpack a lot of my assumptions, which have been all jam-tomorrow, when I need jam-today. A string of failed treatments does a lot to focus the mind (and sap your faith). I’ve lived in this state of perpetual uncertainty for a long time now, and it’s not easy to convey what that’s like, to those who haven’t been there. If you have an hour and a half to spare, I’d recommend watching the BBC documentary “War in the blood”, (on iplayer until end of July - may not be accessible outside the UK). It gives a good introduction to “CAR-T” therapy – which is potentially where I’m headed. But more than that, the experiences of both the patients featured, and their nearests/dearests are much like mine. I found myself reading subtext in pretty much everything they said. Not easy watching though.

I am very grateful to a few people who give me the opportunity to talk while they listen, unencumbered by knowing me socially; notably my nurse, my counsellor and my Alexander teacher. I’m discovering some of my ways of rationalising are a long way from rational, not even healthy. One of my friends in myelomaville, Deb Gasgoyne recently wrote a piece on her feelings of Survivor Guilt. Reading it, I was reassured that I’m not the only one who has some rather perverse responses to my own predicament. What she wrote did a lot to jolt me in to facing up to some of my demons; to explore, explain and sort out some of what goes on in my head. I’m on a bit of a mission now to dump some of the unhealthy things I think. It’s not an easy process, but a constructive one.

I’m going to write some of it down, for the reasons I always do: I find it therapeutic (sunlight as antiseptic); it may help others in similar circumstances; and it might help people who know me understand me better. If you don’t want to read it, don’t!

A lot of it begins with contradictory thoughts: I might still be here in 10 years; but it might all be over by Christmas. Both these things are true, and I’ve struggled to deal with the constant stress. I accuse myself of making up a melodrama. And if I talk about it, I feel like I’m attention-seeking. After all, I might still be talking about it for years to come! I’ve been quite intolerant of myself. It’s become more and more of an issue as I’ve worked my way through treatment after treatment. I project my self-critical thoughts onto other people, which is neither helpful, nor fair. Do I really believe anyone else actually thinks I’m making it all up? Not really. The only real critic is me; beating myself up for being honest.

Plus I have a tendency to denigrate my own experience. My bones get measurably worse after a couple of bad light chain scores, and then I get a better result and the pain fades. I’ve always interpreted that as insincerity: psychosomatic, not real. But this presupposes an underlying objective level of pain, and pain simply isn’t like that. I’m going to write a separate piece specifically addressing pain. In terms of the sorting out of what’s in my head, the point is that I’m endeavouring to stop denying my own experience. Yes, it hurts more when times are tough. Pain is physical and psychological.

I hurt a rib a couple of weeks ago, playing football with the boys. I mentioned it to my Alexander teacher, adding some qualification the gist of which was that I wasn't doing anything too dramatic when it happened. Her reaction made me question what I had said. Just what, exactly, in a bit of gentle father-son football would make me responsible for hurting my ribs? I know full well that if I threw myself heedlessly across the pitch, that'd be asking for trouble. I know I have limits. When we took the boys indoor skydiving, and indoor surfing, last weekend, I did not participate. But having limits isn’t the same as knowing where they are. I could try to steer well clear of my limits, but that would basically mean spending the rest of my life in an armchair. If I attempt to live any more than that I’m inevitably going to overshoot sometimes, and suffer for it in pain or fatigue. What I don’t need to be doing, when that happens, is carrying blame. I suspect the only person who really blames me, is me. But that's enough. It needs to stop.

Another area where I need to cease blaming myself, is the impact that my illness has on anyone else. I’m not responsible for it. I can be sad, but I’m not sorry. It’s not my fault. Why does this matter? Well because it's a short distance from being sorry to thinking people would be better off without me, or if I'd never been here. There have certainly been times, this last year, when I have felt like that. Those are the darkest thoughts of all.

The other day I told my counsellor something to the effect that I've always felt like myeloma was sort of appropriate to me - complicated, a bit cryptic, heavy on the numbers. She gave me a very odd look. So much so that I’m already finding it hard to think I even believed what I said – but I know I did. I’ve always thought of my myeloma in those terms. As long ago as 2013 I wrote in dialm: “It is very in character, for me, to get a rare, complicated disease”. Of course, that’s nonsense. My experience of myeloma is filtered through the fact that it is happening to me. It is as it is because it is my experience (and other people experience their disease their own way). One quizzical look burst the bubble in my head. This “myeloma” thing is no more meaningful than random chance. It doesn’t have a personality. It is nothing more than a profoundly shitty software bug. I don’t think I’ve been mythologizing it, but any residual interest I had in it, beyond the practicalities for me, disappeared on the spot.

I don’t know how helpful any of that is for you as reader - its been difficult for me to articulate as writer. My physical condition is like the proverbial swimming duck: it might look calm on the surface, but it’s more turbulent underneath. My mental condition is similar. I’m grateful for feeling good and looking well, really I am, but I’m not deceived by it.
</long>

Wednesday, 8 May 2019

Dara

When I fall from the wagon, hiding from the businessmen, won't you find a way for me somehow?
Syrups - Foals

... KFLC (29/4) = 272 ... That's a 1/3 drop, after 3 weeks of daratumumab ... Currently on week 5 ...

It’s been a while. Much has changed. (Though the underlying predicament, has not.) I guess I’m bringing dialm back out of cold storage.

Having completed 4 cycles of RCD (lenalidomide based regimen), I had to stop treatment due to a collapse in my platelet counts. We’re still not 100% clear why this happened - could be treatment toxicity, could be autoimmune (chronic ITP)... who knows. Whatever the cause, for more than a month I needed platelet transfusions several times a week. We attempted to treat the problem with pulses of high dose steroids, and by putting me on a drug called eltrombopag that should stimulate platelet production/retention. Eltrombopag is a bit hard on the liver, so I’m not allowed to consume dairy products (or anything containing calcium) for large parts of the day. As a cheese lover, that’s a bit of an issue. My calcium levels are often low and I’m always being instructed to take calcium supplements. But since the calcium seems to collect as stones in my kidneys, I’m a bit reluctant. Finally, three weeks ago, my platelet levels began to recover. A relief - it’s unnerving to know one is being kept functional/ alive by blood donations. And it’s very restrictive having to spend so much time in hospital. I’m fed up of looking like a junky with track marks and bruises everywhere. To top it all, we were supposed to be going away for the weekend, and were forced to cancel the trip at the very last minute, as I was advised it wasn’t safe for me to fly. Instead, a weekend in Sussex, with regular messages on our phones prompting us to check in for abandoned flights and hotels... We do our best to keep cheery and positive, despite events, but it’s not always easy. Having a platelets crisis has been yet another crappy unpleasant disruption I could have done without. Add it to the long list of challenges I have had to overcome, this last year.

I had an inconclusive bone marrow biopsy two months ago, which didn’t explain my platelet problem or my apparently recurring disease. We decided we’d have to do it again to see if we could get a better sample. Every biopsy is an ordeal; it always takes repeated attempts to get a solid sample out - inject, stab, dig, hammer, pull, wince, repeat. In total, we have dug our 5 solid samples - of various qualities - in the last few weeks. My pelvis must resemble Emmenthal. Submitting to it repeatedly, in the knowledge that it may well be futile (there may not be enough good marrow to get a decent sample) requires a certain kind of resignation and acceptance. The doctor was as troubled by the process as I was, by the time we were repeating it for the 5th and final time: the first occasion I’ve observed my predicament cause visible distress in the person treating me. I’m deeply grateful to the professionalism, and the dignity, of my medical team. Perseverance paid off. The 5th sample was “good”, though the payoff was bad news. My marrow  was 80% plasma, when it should be <5%. Most of my marrow is myeloma - and the good marrow is squeezed into just a fifth of the space. This result would count, on its own, as active/progressive disease. And in the time off treatment, my light chains jumped from 150 to 410. The conclusion was that the lenalidomide hasn’t worked.

So, that means we’ve tried two different lines of treatment, both unsuccessfully. It appears my ‘eloma is refractory to proteasome inhibitors (bortezomib and ixazomib) and to imids (thalidomide and lenalidomide). According to The NHS, the next drug to try is daratumumab, a monoclonal antibody. This is a completely different approach to attacking the myeloma. I need to hope that we are successful, 3rd time lucky. Dara works by bonding to a surface protein (CD38) which is present on plasma cells but not much else. The dara triggers immune destruction of plasma cells - hopefully very specifically my myeloma, though it is likely to leave me immune suppressed too. Dara is a different kind of proposition. It’s much less likely to trigger normal chemo side effects (nausea, hair loss, neuropathy etc). But much more likely to cause infusion reactions. So the first time I take it, they put it in really slowly over the course of 10 hours, with all of us watching out for any reaction. It turns out to be very uneventful - I avoid any of the infusion reactions I had been warned to expect. But it still makes for a very long day in the ward. I am grateful to have a visitor to while away the time with chat (and frothy coffee, once we are >4hrs from my daily dose of eltrombopag).

For the time being, the plan involves weekly daratumumab infusions. Hopefully, they will continue to be uneventful. Though they will also be slow. I’m also needing to make a second trip to the hospital each week, to check in for support and, as necessary, to drop up my platelets, or administer G-CSF, or get ticked off for my poor electrolyte levels. For at least the next couple of months, that’s my routine. It will be a while (I don’t know how long) before we have any robust indication whether this approach is truly working. The initial response seems very positive - KFLCs dropped from 410 to 272 in the first 3 weeks. And the side effects are not too bad. Nothing at all as the drug goes in. Only limited amounts of drowsiness from the antihistamines or insomnia from the steroids (a different steroid - methylprednisolone, which is much less potent than dex). I’ve felt ”flu like” symptoms at the end of the week, but even those seem to be waning with each succeeding dose (#5 yesterday).

It’s easy to forget that all the treatment - 3 different protocols over more than a year - has been directed to a single destination: to have another stem cell transplant. We harvested new stem cells for this purpose; and in November we came within a week of doing it. The stop-start experience, and never quite knowing what time horizon I can hope to be “recovering” over, has been difficult to process mentally. But despite the frustration, I accept that we can only make plans on the basis of the circumstances. Statistically, a stem cell transplant is likely to be more beneficial if carried out when my myeloma is in remission. And that just hasn’t happened. If we had carried on regardless, the prognosis would not have been great - we’d likely have “wasted” the potential benefit. And we won’t get another chance: realistically, I will only be young enough and strong enough to undergo that kind of procedure once more.

However, another worry has grown, as we’ve struggled to find a drug regimen that works. Even assuming we get my myeloma into remission, we know it won’t stay there forever. I could continue on daratumumab for along time, if it works, but ultimately, it will fail. Similarly, another transplant might last many years,  yet not forever. And actually, the likelihood is that it will last less than the last one - so I’m looking at another relapse in 3 or 4 years, if I’m lucky. Given how difficult this relapse has been - how long it has taken, how much bone damage I sustained again, how many treatments we have tried and failed, and all the complications - I’m prepared to admit to being a little frightened at the prospect of the next one. Likelihood is it will be even rougher. I don’t really fancy my chances.

So, the doctors’ most recent suggestion is that we might head in a different direction, and they have put my name on their list for the CAR-T trial which has recently opened at Kings (so far they are treating 3 or 4 lymphomas/leukaemias this way and due to begin for myeloma imminently). CAR-T therapy harvests T-cells, modifies them to become myeloma antibody producing cells, and then reintroduces them, hopefully making one immune to one’s own disease. It has the potential to be curative, though it’s too new to be sure - there hasn’t been enough time to show whether the modified T-cells persist, or whether the myeloma eventually mutates to avoid them. I have assumed for a while now that this is the treatment I should ultimately be heading for. But there’s always an advantage in letting other people do the early trials, and following on when there’s more established experience. People have died in early CAR-T trials. It’s not without risk. However, I’m increasingly thinking that the biggest risk, for me, might be the next conventional relapse, by which point it may prove impossible to get my myeloma back in to remission, and where I might be too frail to withstand the CAR-T process. My best option may be to take my chances while I can. I’m lucky that the trial is available at Kings, and I am eligible (at least, I will be once I’ve had a course of daratumumab). That’s “the plan” as it stands - some combination of ongoing Dara, SCT and/or CAR-T. My hunch is that the docs will want me to have them all, if I can hack it. I have no idea how soon we’ll be ready. I guess it depends on my response to the daratumumab.

So... 2019 is proving a lot better than 2018... I’m sick of having my life put on hold by endless dramas... a period of relative peace would be invaluable. I think there’s a chance we might be able to book a last minute holiday for half term. I’ve even provisionally rebooked the recently abandoned weekend break. Maybe this summer, I’ll actually enjoy instead of merely endure.

The thing about myeloma, is it's relentless. There's never a day off. Never 5 minutes off, really. And when things get really hard, it's like being dropped down a deep hole. Sometimes (often) good and bad days alternate. But one wakes on the good mornings at the bottom of the hole, and sometimes can't be bothered to drag oneself out. Especially if tomorrow is likely to involve being pushed back in. Which is all to say that though there have been plenty of respite days, these last 18 months, it has been impossible for me to commit to anything, or achieve much against any set of tasks I might set myself. So many things I want to do and be, but can't. I'm hoping that, at last, treatment becomes sufficiently uneventful to let the rest of my life begin to regrow.

Thanks, as always, to those who have propped us up, in the last few months. Our needs are sometimes invisible, from the outside, but up close, the intensity and unpredictability of this whole journey is quite debilitating for all 5 of us. We’re grateful for the support: flattered that people care and haven’t succumbed to compassion fatigue by now. Our needs probably won’t diminish much over the coming months. Thanks for sticking with us. It’s all a lot better than it was, but still quite challenging. Lyndon turned 7 a few weeks ago. Back in the early days, when I was pretty much bedridden and he was a bouncing baby, I used to take much solace in his smile. “You’re the reason” I would remind myself: hope and potential, to incentivise me; sustain my willingness to succumb to whatever treatment is proposed; and to live through whatever sickness and pain the myeloma doles out. 7 years later, my kids are still smiling (Marisa and I must be doing something right!) I’ll try to match them. “Garde ta foy” as my college motto goes ( = “keep the faith”, though we used to mistranslate it as “look after your liver”. We were so droll).

Monday, 4 March 2019

Clotless

One reason I am reluctant to write here more, or more frequently, than I have to, is because it perpetuates the sense that this is some kind of soap opera. But although it has some soapy characteristics, and endless plot twists, I certainly don’t find it entertaining. However, if I don’t post, it’s hard for anyone else to have any awareness of what’s going on. Those who have seen me recently will know I look well enough. But looks can be deceiving. (Though if I showed you the track marks up my arms, you’d get more of an idea of what’s been going on.)

There was a glimmer of good news last week, with my light chains down for the second month in a row. That is positive, important, and rare. Only the second time, since I started treatment, that I’ve had 2 consecutive “good” months. Worthy of celebration.

Unfortunately, at the same time, we have a new drama: abruptly, I have very few platelets in my blood. (Over the last month, my platelet count dropped from 195 to just 8, and it is stubbornly staying that low, despite several transfusions to top it up.) These are the cells that enable blood to clot: being without is frankly dangerous. After some investigation (including an emergency bone marrow biopsy - yippee), the Drs believe that the cause is “treatment toxicity” - ie the drugs are to blame. So, I’m off treatment (even though it was working) and awaiting a decision on whether we’ll attempt to restart, or try to move on to transplant.

In the meantime I’m tied to the hospital. I spent half of last week in the treatment room, and I am there again now awaiting yet another blood transfusion. For the time being, I think that’s how it will be. My nurse asked me this morning how I’m coping. If I’m honest, I’ve stopped worrying about the bigger picture and the long term. It’s so endless, relentless and unaccommodating that I’ve given up bothering to try to interpret what each twist and turn might “mean”for my prognosis. Whatever we’re fretting about today, it will probably be something wholly different in a few days time. There’s no point trying to read the runes. I’m pretty much beyond caring.

The short term is where it’s at. In the short term, I’m doing my best to accept my circumstances. I cannot make a plan from one week to the next - and that’s been true largely without exception for well over a year now. I waved my kids off to school today, not even knowing whether I will be able to pick them up this afternoon. I make plans and appointments... and then cancel most of them. I have moments of lucidity when I can think ahead, imagining projects I might undertake or participate in. And then I have the rug pulled from under me again, and am humbled by the realisation that I have absolutely no control over my life from one day to the next. I don’t know which days this week I will spend in the hospital. I don’t know if I will restart chemo next week, or not. I still believe that I will, eventually, have my transplant, but whether that is going to happen this month, or next, or whether it won’t be for another six months, I haven’t a clue. I will be out of circulation for several months, but I don’t know which ones. You can probably appreciate how difficult it is to process that kind of information. But unless you’ve been there, I don’t expect you to be able to comprehend what it feels like. I don’t know whose birthday I will miss. I don’t know whether I will be able to witness any particular performance or milestone. Will I be there for your class assembly? Will I watch your next match? Will I speak to your violin teacher? I don’t know. Will we go away for the school holiday, and if we do, will I come too? I don’t know. Right now, I’m waiting for my platelets, and that’s my horizon.

And all the time, we’re heading for this mythical time, post transplant, when I will be in remission and living a “normal” life. But I find it hard to form a mental picture of that phase of my life-to-come. It seems almost implausible. Certainly it isn’t sufficiently compelling for me to use as a mental anchor through the storm. I must navigate the now, accepting simply that it is what it is, and that what will be will be.

So... that’s where I am... There’s not much anyone can “do” - I have the NHS by my side, and they will keep propping me up. Spare a moment for Marisa and the boys, though: they too have to live my uncertainty.

Thursday, 31 January 2019

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.