September 8th has rolled round again. Somehow!
I could never have imagined that back in September 2008 I might still be alive and pretty well 14 years after that fateful conversation. Where I was meeting strangers, being shovelled through a world of tests and procedures, still feeling very confused and asking 'Myeloma? What on earth is that?'
Well, 14 years down the line I now know what Myeloma has so far been for me. And that I have had a bloody good run at it so far. All of which is down to the BUPA access to treatments, Prof's approaches, the curcumin tablets I take (or prayer if you ask my brother!) Or just pure luck. Which has for sure played a big part in getting me to 14 years thus far.
I sometimes play back 2 scenes in my head. The first one is a room with all the AV people of say 2000-2008 in it. And we are asked to identify 3 people among us who are going to get cancer imminently, and who may desperately sadly die in the coming years. I'm pretty sure hardly anyone if anyone at all would have looked around and chosen me or the lovely Ben Wood or fabulous Louize Gibson. I know I am exceptionally fortunate that while I have to live with myeloma every single day, I am still here to be able to do that.
The second scene is one where I am in a room with all the Under 50s from my Myeloma forum that I set up with another chap back in 2009ish to help us both cope with the isolation of being 'youngies' in the oldies' Myeloma world. There would be about 30 people in there. And only 3 of us are left today. If you had asked everyone who had the greatest need to stay alive – those with young families for example – I would not have been on that list.
So while the first one will always surprise me somehow that I ended up on the shit list, but that I am comparatively lucky to still be here, the second one spurs me as much as anything to live each day well, as I am one of the very very few to still be able to do that.
Hence today is always a date when I ask myself if I'm doing 'the right thing with my time'. Relationship-wise, health-wise (the scales would certainly shriek No), work-wise (god only knows) and in general.
Coincidentally this week Hawksey has had a few wobbles about his health situation – partly due to 'doing the maths' on the prognosis numbers he was given when diagnosed (nearly 4 years ago, how that time has massively flown) and also prompted in part by the sad death of Bill Turnbull last week. Who was diagnosed a year before Hawksey with a rather similar prostate cancer situation, and who was also treated by H's consultant, Vincent Khoo. The ticking of the clock is heard a bit more loudly in Dora Road as a result.
So we are having a think about shaking life up a bit. Chewing over what would work for each of us. With me mindful that H is feeling the squeeze very sharply right now, and that he stepped up and did lots of things that I wanted to do, back when I was diagnosed and thought I might have only 2-3 years, maybe 5 if I was very lucky, to go. It's my turn now to do similarly, and both of us could do with a few changes for sure.
Obviously, we have Maddie now, so what we plan needs to fit around her as much as possible. As well as with Miss Mojo who is being terrorised by a playful giant puppy multiple times a day. (I think she'd be quite pleased if the Madster was booked into a doggy training school for a few weeks while we go away some time!)
Anyway – lots of thoughts, one set of flights booked pre-Xmas and a trip to the US coming up in 2 weeks' time. There's definitely something true about 'getting away from things' and for us it does certainly help relieve pressure on the mind if we are physically somewhere else than here, listening to that ticking clock..
Not sure yet what the next 6-12 months will herald health-wise or 'making the most of time'-wise, but we're going to be doing our best not to look back with regrets at the things we could have done.
So here's to making it to 14 years and to an interesting journey towards – hopefully – a nice round 15 years for me. And by then a good 5 years for H and hopefully many many more.. x