The stats around T-ALL and for that matter Leukaemia are fragmented unless you are health professional and like many others I’ve spoken to I decided not to google (as an ex Microsoft employee I’m forever programmed to say Bing) to much as the internet is a murky place and depressing and out of context stats are everywhere. As someone whose job has often involved making numbers dance to my tune I know how they can be played, tweaked and presented to happy ears for confirmation or for click bait to drive a narrative.
Often my contrary nature is the cause of the minor disagreements with my wife – when presenters and journalists spout out manipulated stats designed to prove / disprove fiscal policy, racism, transgendersim, fatism, northerism something ism I can’t help but see an alternative and often unpick a very poor grasp of maths and statistics.
This sort of lack of belief in anything I am told, the ability to question everything, deep-seated lack of trust in anyone who can’t balance an argument (BBC I’m looking at you recently…….).
The reason I mention all of this is because it’s easy to get swamped and disillusioned by numbers.
Remember you are not dead yet;
- You make your own stats
- Those numbers are for you to make with the support of everyone around you – it’s a team game
- You are a core sample of 1.
It’s so easy to fall into the trap of anecdotal – someone you don’t know who someone you probably also don’t know knows someone who died / didn’t die / was given months to live and is still alive / went alternative and is now dead / not dead. None of that matters and I found it hard not to fight back – I know people mean well but I am me, my survival / outcome is a number that I and the consultants, nurses, friends, family and fate control.
I also fundamentally believe in the Karma police and hope to have lived my life (at least trying) doing no evil. I gave pints and pints of blood when I could on the basis that I half expected some of them back as a result of a crash of some sort. I didn’t expect 20 plus blood transfusions necessary to keep me alive from a silent biological killer.
Things that were easy become ridiculously hard
Its lonely – there are days and days when there is little you can do but think – but also just the mental effort of talking is hard – it’s hard to concentrate – the fog descends and you then you forget rolling into another day.
Don’t be afraid to ask for help (and I include me in this – I have walked that path – there is always a north star of hope, a light, no matter how small at the end of the tunnel – the sun does shine.
For long periods I didn’t sleep in the same bed as my wife of 20 plus years for fear of illness – as a school teacher it’s not easy to label her a germ magnet – germs that can put me back in hospital for days – even a simple ear infection had me on IV anti biotics and laid out for 3 days
On the plus side as I’ve taken one for the team if you are between 45 and 50 there is 12 of us a year – does that not reduce significantly the chance that it’s you? That’s how I view it – I’ve now taken my one so you can get something else hopefully less horrid – ingrowing toenail or prickly heat perhaps.