Tom & Phil

Way back in 2008/9 when I was diagnosed, I set up an online group for other 'youngies' like me as all the support for Myeloma was for much older people, given that the average diagnosis age was 69 then.

 

My co-host (who did the tech bit, thank god) was a chap called Phil Kelly and one of the first people who asked to join the forum was a lovely chap called Tom Lappin. He was 52 at the time but said he'd love to join the Under 50's Club if we'd have him. And of course we did.

 

For the last few years now, it has just been us three who have survived this long. Both of them treated on the NHS and living up north, and me the southerner female with the huge benefit of private healthcare.

 

Fast forward 16 years from the start of the Under 50s Club and I realised that I hadn't seen many posts from Tom on Facebook. For quite a while. Then I realised I hadn't seen ANY posts, and I had got used to seeing the odd one with his catchphrase 'onwards and upwards' over all these years. So I did a bit of Googling and – very sadly – found photos and messages from his funeral. He died aged 68, with his wife ('the young bride' as he called Elaine), his kids and grandkids all around him.

 

So I dropped Phil a line, as the Under 50s threesome was now just me and him, to see if he had heard about Tom's passing and to see how he was.

 

I got this lovely long and detailed reply (we myeloma folks just say it like it is to each other). Bearing in mind he is the same age as me, it's all a bit sobering as his health is very much on the slide.

 

 

 

Hey Scotty, great to hear from you. I was only thinking about you the other day…. I keep getting a bill for the Under50 site, and was going to get in touch about quietly retiring it.

 

I did know about Tom. Luckily I managed to meet up with him and Elaine last summer up here. Had a couple of beers and a good laugh. He was a bit frail then and I think his treatments had all stopped working at that point. I was in contact near the end, and he was ready to pack it all in. Seemed well looked after at a local hospice.

 

Hard to believe we are the only ones left! 18 years for me this year! Great to hear Dara is still working for you.

 

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 pulmonary embolism. 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).

 

Everything crossed that Pembro reverses some of the symptoms. Currently whipping round Filey on a mobility scooter. We’ve also booked a ‘life’s too short’ cruise to Norway next week.

 

Our move to Filey has been the best thing we ever did. 5 mins walk to the sea and we have already made lots of friends up here. Music scene is different (mostly covers bands) but surprisingly healthy. Got a good muso network and even started a new Indie covers band with a Bowie tribute singer!

 

Actually feeling ok at the moment, enjoying ditching steroids, and finally managing oxycodone dosing to solve back pain, while staying conscious..

 

Cheers for now, Phil

 

 

 

So while I keep on, keeping on and always live in hope that I'll scrape another year of decent health, this of course is a huge reminder that when it starts to slide, it can get pretty crappy, pretty quickly.

 

I have done absolutely nothing across these 16 years to 'deserve' to be the person almost left at the end. Obviously I remain incredibly grateful that somehow it has turned out to be me – and Phil hopefully for a good long time still – but it's such a shitter that everyone else was less fortunate. All those husbands and wives, families, kids..

 

My brother would say that it is the power of prayer that has kept me alive this long, but I suspect that even the non-religious myeloma folk would have prayed their hearts out to have just one more year, month, week, few days… 

 

So – here's to the dozens of people that I knew who didn't get this far. To lovely Tom and his family. To Phil, making the most of Filey. And to all the people who have been diagnosed since I was who I don't know, some of whom will hopefully still be going strong.

 

Sobering times and all the more reason to KEEP GOING for as long as I can do.

 

As Tom always said, onwards and upwards. I'll keep the phrase going for him now x