Can you believe that it is now an incredible 12 years and 8 months, today actually, since I was diagnosed with Myeloma?
The absolute worst day of my life, where the nurses couldn't look me in the eye as I innocently asked 'what does this 'Myeloma?' question written in the side column my scan sheet mean'? And then with all the horrors to follow as the truth unfolded and the words 'advanced' and 'incurable' first came to pass.
Not helped by being diagnosed as Stage 3 out of 3… which also clearly didn't sound like the best place to be, despite me having asked numerous doctors over more than a year to help me solve why I had such bad rib pain, to the point that I (and others!) could actually hear them twanging in my torso if I leaned forward or backwards too quickly.
For some reason I googled 'myeloma prognosis' earlier today – well, what else do you do on a Saturday morning when BBC News is just full of regional election results?
And firstly found this – which is still available online despite now – thankfully – being quite out of date. But it is exactly what we looked at back in Sept 2008 and what we absolutely didn't want to think was going to happen to me.
Yes – that was it. Stage 3 said that survival rates were 2-3 years only, which at 39 years old was devastating. Even knowing that lots of patients would be much older than me, and that maybe I might be able to look at the Stage 2 prognosis instead, 3-4 years was hardly a whole lot better.
But, here we are now. Amazingly there have been a lot more treatments developed for Myeloma in these last 12 years than for many cancers. So there are options, alternatives and different ways of 'trying combinations of two drugs together' which seems to be how Myeloma works.
Plus I've had 2 stem cell transplants and they have both worked – well so far for transplant 2 anyway. The new regime is a pretty crappy 4 lots of chemo every 4 weeks, but its a hell of a lot better than not still being here. And it's also better than a full day at Parkside every month, now that Dara is available as a whopping 5 minute injection. It stings, it leaves bruises for weeks and the steroids cock up my sleep for several days, but its still something that anyone would totally suck up to stay alive and in decent health.
It was pretty amazing to see how much that stats have changed since 2008 – check out the table below. '30% will survive myeloma for 10 years after diagnosis'. WOW. Given that lots of elderly people (average age of diagnosis is 65) would pass away from something else potentially in that 10 year period, it show how far things have come.
Thanks again to everyone who has raised money for Myeloma UK in the past years, or who donates by DD monthly. This is certainly one case where you can see where your money goes and what it can achieve. Your support has been hugely appreciated, and always will be.
Here's to being in the very fortunate 30%. And long (please) may it last x x