And then there was One..

Balls. 

Back in 2008, a chap called Phil Kelly, who I met at a Myeloma Awareness Day, and I, set up the Under 50s Forum. Intended to bring together younger people with Myeloma, as at the time everything was targeted towards people in their 70's & 80s, who mostly get myeloma.

I had the idea and communicated it on the Myeloma UK website and Phil set up the website/forum. Over the course of the next year or so, about 40 'young' Myeloma people joined it and we shared all sorts of stuff. How to deal with telling your partner. Explaining Myeloma to your kids. Dealign with the emotional side of having an incurable cancer in your forties or early fifties (or even thirties..). Sharing diagnosis stories. Talking about which treatments we were being offered in different ends of the country, and even with one member based in France. And some lighter stuff – family photos, holiday plans – and thoughts on whether it was worth trying to get insurance when a week's cover could set you back over £2000! Hell no, having coughed this up once (and been fine), if you're well enough to go, you'll probably scrape a week without big issues, became my mantra.

Anyway, it rattled on for a decade or so, in which time we gradually lost more people to bloody Myeloma. And it dwindled in importance as Myeloma UK finally cottoned on to the need for an Under 50s thing, and copied it. 

And the fewer of us that were on there, the more it felt a bit 'quiet'. Plus I worked out that for me, when I was well I didn't really want to be on there regularly, and others possibly felt the same.

Fast forward to an improbable 15 years down the line, and pretty much only three of us were still going. Me, Tom Lappin and Phil Kelly.

In October 2023, we lost Tom. He was 52 when we set it up in 2009 but really wanted to join so of course we said yes. His catchphrase of 'onwards and upwards' appeared many a time on the forum and on Facebook. 

So then it was just me and Phil left – weird that the founders were the last two standing. 

I emailed Phil last Aug for a catch up and things didn't sound great. He'd moved to Filey from Oxford for a better quality of life, and was now using a mobility scooter to get around.n Here's an extract from what he came back with…. (brace yourself):

My medical crap has become rather complicated…. strap yourself in. I was trundling along in 2023 in remission after Revlimid treatment, and the myeloma was undetectable. Then, a routine scan showed a recurrence of the colon tumour near spine…. escapee cells from earlier surgery. Got that zapped with radio and that was sorted. Problem was, I had stopped Rev as a precaution in 2021 after my near-death run-in with colon cancer…..

 

so…. I started feeling generally unwell last November…. I pretty much knew myeloma was back, but Oxford seemed to take an age waiting for blood numbers to confirm what I knew…. eventually started treatment in April…. Isatuximab, Pomalidamide and dex. Found it really tough going to be honest. Anyway, that isn’t the main story…. myeloma now undetectable again. I transferred care up here and my new doc got concerned over my breathlessness and sent me upstairs for a scan…. thinking PE. Anyway, it turned out that colon secondaries had reached my lungs and had already infiltrated blood vessels. Much debate between Haem and oncology followed, and plan to switch focus to treating lung is now in place, I started on Pembro last week. 

 

As ever, this wasn’t quite enough for my self destructive body. I saw my haem consultant for a routine meeting. I described my new back pain and watched her look increasingly concerned. I was convinced I had a pathological fracture after house move. Scarborough general has a great emergency access scanning system, got scanned and reported on, on the same day. Turned out that colon secondaries had now infiltrated spine in lower back. So that is health crap up to date (if you ignore 3 nights in hozzy with fever/food poisoning). 

 

 

Me again: As you can see, when Myeloma starts winning, it can really run riot. Pretty bloody terrifying to be honest. I really hoped for the best for him, but could see then that the odds were stacking up against Phil.

 

Having sent an email to him a few weeks ago, I then found the news that he had died in Jan this year (on Facebook, never quite how you want to hear that a friend has passed away).

 

Aged only 60.

 

There are a couple of later-joiners floating around the Myeloma ether who are still alive, but that's it for the original band of people thrown together randomly by this crappy disease. And it's taken them all except me now.

 

Prof asked me yesterday if I felt survivor's guilt (which I do to an extent). I said I more felt that my time must surely be  coming closer, given that I am the only one still going (and bizarrely in good health). Why would I expect/ deserve/ somehow manage to get many more years when all the others – who all had families, children, jobs, hopes, plans etc – are gone?

 

His view is that the longer you have stayed alive, the better your chances are at keeping going, rather than worse. Not that it makes any difference, we all just keep trucking onwards don't we?

 

So – here's to every one of the Myeloma Under 50's. 

 

Onwards & upwards x