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.