Monday 27 December 2021

Gig economy

All my favourite colours. My sisters and my brothers. See them like no other
Colors - Black Pumas

A blog in lieu of a Christmas letter. Merry Christmas and Happy New Year to one and all

A quick catch up. The autumn in our house has been pretty good. Work and school have gone well, and all 5 of us have done our best to socialise, when permitted. This included a great night out for Marisa’s birthday. Thanks to all who were there.

We avoided covid until the last week of school. Even once two of us had tested positive, we managed to avoid spreading it further among ourselves and were clean and clear in time for my parents to join us on Christmas Eve. Between us, our household has had 10 covid jabs so far... we’re definitely getting the benefit of science.

Marisa and I took ourselves to Sarajevo for a week in October. And at half term we all 5 made a flit to Mauritius for hot sun and bottomless drinks. I felt a little guilty about that at the time, but another month or two’s perspective reinforces in my mind the importance of doing things while we can...

In London, I’ve fitted in several more gigs, including  seeing Black Pumas play for the second time. They’re a bit more of a big deal now, having had their profile raised by playing at Joe Biden’s inauguration in the mean time. I can’t imagine I’d want to see any band that was willing to play for Donald Trump or Boris Johnson.

While in Scotland in the summer, I was reminiscing about a previous trip up there, and wondering how come I’d subsequently almost lost contact with my companion from that long-ago holiday. This gave me the motivation to reach out to several friends I haven’t seen in many years, and arrange to meet up for lunch (or breakfast, or beers...) It’s been a real highlight of the autumn for me to renew my friendship with a number of people with whom I should never have drifted out of touch in the first place. I intend to do more of this, in the months ahead.

My light chains are up a little (230 this time vs 160 last time), but the ratio is static, so at this stage I have no idea if the  change is significant of anything. But it has - yet again - reminded me to live while I can. I’m certainly not going to cower from covid while I’m feeling good and my immune system is operational.

I hope covid hasn’t hit you too badly. It was surprisingly mild on us. Not so for my friend Suzette who had just started a new line of treatment for her myeloma when she caught covid in November. She is currently in an induced coma in the ICU. If my timing had been less fortuitous, I could easily have been in her situation myself. Indeed unless covid blows over before my relapse is complete, I will find myself in exactly her position - trying to avoid an ever-present risk without any meaningful protection. Spare her a thought - especially if you happen upon any mask refusers or vaccine sceptics. By letting covid spread easily, their selfishness increases the risk for everyone who is currently immune-suppressed.

Sunday 26 September 2021


Tearing up the radio. Lost in the stereo sound
Lost In Stereo - All Time Low

... KFLC = 163 ... κ/λ = 35 ...

I’m rather enjoying the fact that I feel a long way, right now, from myelomaville. I have to remind myself of the need - every now and then - to give you a status update.

Hiking on Ulva
My latest 3mthly check was 4mths from the last, because we were away over summer (a road trip round northern Scotland and the western isles - it was marvellous). My visits to the hospital are so infrequent that I’ve kicked my dependency on Costa’s cinnamon brioche. There’s not much news - my numbers are stable (the ratio has moved a bit, but that’s probably not meaningful, given the absolute kappa level has not). I feel pretty well - even the fatigue seems to be in retreat. My consultant wants to investigate some rib pain that apparently I’ve been complaining of for a while now - but it’s really not so bad and I’m in no great hurry.

More than 2 yrs since sct#2, that’s a pretty good place to be. A purple patch I must make the most of - I’m glad covid restrictions are receding.

I had the awful privilege of attending a local friend’s funeral last week. I won’t hijack his story into my blog, except to say it focuses my mind - again - on the fact that all we ever have is today, and our job is to make the most of it. I’m trying.

The equivalent period after sct#1 I was feeling so good I even went running a few times (that would be a bad idea now). But 6mths later, my myeloma was (slowly) on the move. A sense of urgency is required: make the most of it when I can.

As well as travel, I’ve been indulging my passions for art and live music. It’s good, though I’m aware gig venues are covidy environments (art galleries tend to be a little more cautious!). Still, I’ve had 3 jabs now, and its a case of “if not now, when?” With international travel getting more possible as weeks go by, M and I have booked a few days away together, and then an excursion further afield with the boys at half term. Because we can.

Saturday 29 May 2021


Hiding from the truth won't last. Talk about dealing in the past. Don't apologize
Living In Denial - Michael Kiwanuka

All good, basically ( ... KFLC = 137 ... κ/λ = 22 ... everything else pretty much "normal")

Our choir met, for the first time in ages last week, only to immediately discover we're still not allowed to sing indoors. But with better weather this week, we sang in the park instead. (That's better than singing with a visor on, to be honest.) My lovely friend Kate, who always asks after my health, said how much she appreciates me writing up here: which was very kind of her and reminded me I haven't posted for ages.

Hello, I'm still here! And I'm fine.

The first consequence of loosening lockdown, for me, was a bout of some rhinovirus (I think. It wasn't covid, that much I'm sure). I guess my still-naive immune system might get knocked about by a few of those in the coming months, if social interaction is beginning to return. But it's a small price to pay. And with Marisa and me both two-dose vaccinated some time ago now, I'm increasingly unfussed about any personal risk from covid. The only significant consequence of my cold (after a day of man-flu moping) was that the coughing and sneezing really upset my ribs. So much so that a little bit of me feared it was an indication of something more. Therefore, I was more than ordinarily relieved, last week, to get my numbers and see they're unmoved - in fact the KFLCs have wobbled down again a bit. Crucially, the κ/λ is static. My myeloma is doing nothing. 

We've survived the lockdown - the last few weeks were pretty tiresome and things were getting decidedly tetchy in our house. We were all glad when the boys returned to school. It's nice to watch them getting their social lives back - in particular to see Gyles making the secondary school connections that were so abruptly interrupted in Yr7. But honestly, I think my lockdown was easiest of the family - I had an office to escape to so I got more space and variety than everyone else.

For entertainment and diversion, Marisa and I took a series of walks along the Thames. In total, over lockdown I've walked from the eastern end of the Royal Docks all the way upstream to Kingston. As well as the entire length of the Regent's Canal. It's been rather a good little "project". And time just the 2 of us, walking and talking, has been good for our souls and our relationship.

With the lockdown lifting, we're going - yet again - to try to get on a plane tomorrow. After abortive attempts last Easter, and again at Christmas, I'm optimistic this time might actually work. We're "only" going to Portugal, but even that seems quite exotic. I'm positively looking forward to the indignities of air travel, and mostly to long leisurely hotel breakfasts! Bring it on.

Wednesday 17 February 2021


I don't want anything. I know it's not your fault
The Adults Are Talking - The Strokes

... KFLC = 154 ... κ/λ = 22 ...

Lockdown does drag on, doesn't it? Endless repetitions of the same until you can't even remember how many weeks it's been. While 2020 is destined to go down in history as a year of pandemic, for me it was a year of recovery after 2 years of treatment. I breezed through a lot of last year's pandemic restrictions, but even my patience is wearing a bit thin by now. The longer it's gone on, I'll admit, the more I've struggled with everyone else's gripes and groans. I know one can grow through adversity. I know one must learn to make the best of the situation one finds oneself in. Honestly, I worked all that through in my head ages ago. I would really prefer not to be forced to revisit it. I'm at peace with my uncertain future, the loss of autonomy and agency, the excessive amount of wasted time, and the ever-present lurking mortal risk. But I'm just as happy not to disturb the surface of that particular pool.

Hearing people articulate those thoughts now, makes me feel a little lonely too, because it reminds me that as well as experiencing the physical ravages of myeloma alone, you inevitably go through a lot of the mental journey alone too. It's hard for anyone to comprehend something they have not experienced. Last March we had a holiday booked and paid for. The travel agent tried, for a while, to shirk his responsibility to refund our money. In our conversations, he almost seemed to seek my sympathy for his predicament - the pandemic represented a mortal threat to a business he'd been building for years.
"I had a successful business too, once", I replied, a little acerbically.

So... I too will be glad when lockdown is over now. Not so much because of it's privations, but because I'm done with thinking about them. It's gone on long enough! Once the elderly and vulnerable have a modicum of protection, I can no longer see justification for continuing to blight our children's lives. The last year has taken a hefty toll on them. Our collective mental health deserves a bit of respite now please.

There is good news. My light chains had been trudging very slowly upwards. I can't find where I wrote the last few results down, but if my memory serves, they had crept up from 130 to 150 to 170, and I was anticipating they'd be 200 by this month. But at today's appointment, they're back down to 150. And the ratio is right back down to 22 - as low as it's been. My myeloma appears to be static. I worried for a while that 2020 would be my only clear year (much of it wasted due to covid!), and more recently I've been assuming 2021 is the only window I have before I'll probably be dealing with my myeloma all over again. Today I'm imagining I might get a run at 2022 as well.

Have vaccine, will travel (just as soon as they open the airports).