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.

4 comments:

  1. Stay home and stay safe. You need to avoid infection. Indulge in a socially distanced walk every day for much needed fresh air and sunshine. Oh, I forgot. You’re in England. Just fresh air then’

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    1. Cheeky! As it happens, the weather here since lockdown has been fantastic. Though not up to Californian standards, of course.

      Stay safe - you’re absolutely right we should be avoiding infection. I haven’t been to a shop, or indeed any building other than my house, except for 1 trip to hospital, in almost 2 months.

      A time will come when I have to decide whether to come out of hiding - when my kids want to return to school, if not before. But that’s likely to be September at the earliest. When that time comes, I’ll be glad if I’m still in remission!

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  2. Wow Alex. Great news. So happy for you. The blue hair looks great, you'd fit in well at Rhiannon!

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