20th November 2018
H’okay…so today, balance was somewhat restored.
Yesterday was testing to say the least.
Last night I sat down and typed like a lunatic on speed.
It just gushed out and although I had no intention of posting my rantings; (it was for my own benefit really) … I have, in the cold light of today, decided to share the output of what culminated from what was a mentally draining day, 24 hours ago.
I promised openness and honesty from the inception of this blog so I can’t renege on that approach now just because it came from an uncomfortable place. (emotions+Pete =discomfort=ignore=keep calm and carry on)
Note to you all
If I ever come across to any of you as cold, disengaged or just rude; I apologise. I never intend to be like that. Please know that all support, interest and motivation is truly appreciated and that any negative outpouring from me is (unless I really let you know!) unintentional and just a short release of whatever has been bubbling under the surface.
You just happen to be in the wrong place with the wrong me.
So here you go.
Its not war and peace; not a writing of any literary note whatsoever.
But it was in and then it spewed out.
And I went to sleep better for getting it on paper.
19th November 2018
It’s been nearly 2 months since I had a full nights sleep.
Frustratingly a side effect of the chemo.
On the plus side it means I’m up to make Jenn a cup of tea ( I know Jenn, I don’t do it every morning!) and the kids actually have breakfast on the table before they can get to the TV but what I wouldn’t give for 8 solid hours!
It just exacerbates the feelings of up and down as a result. It’s not about giving up, because I won’t. Tiredness passes and there is always hope.
But to be reminded of your own mortality every bloody day strips a very thin layer of your resilience away when your guard is down.
And of late that guard feels more down than up.
The never ending chip-chip-chipping away of the disease at me physically and mentally.
I found out 2 weeks ago that I have another busted vertebrae but there is nothing that can be done about it.
For gods sake.
Even when thing seem to be going well another hand grenade gets hurled into the arena to keep things interesting.
Heaven forbid we might just have a few years of normality, however fucked up normal is nowadays.
Even normal leaves a ball of unease in the pit of my stomach 24 hours a day. Like I am waiting for a lion to pounce from behind every corner!
And my family; my main reason for attacking this situation are both my foundation and my deepest source of pain. To have this illness literally clawing at your core, your inner being; dragging you slowly away from those you care most fiercely for, is a never ending battle.
And it won’t end. I know ultimately I can’t win.
Perversely, this is precisely why 10’000 donors is worthwhile on so many levels.
Most importantly, it gives people a greater chance of finding their match, not just me.
But it also keeps me focussed on something other than the reason why I am doing it. Rightly or wrongly it keeps my busy mind just that; busy.
I have told the story (and please don’t think for a second I am not grateful for everyone who has listened and acted upon it) so many times that I have almost disassociated myself from it. It is about me but when I talk about it in the context of the campaign, it is about everyone impacted by illnesses that can be treated with stem cell therapy.
It’s just today happened to be one of the ropey days and coincided with me taking umbrage at myself for basically, trying to live beyond 7 years.
Fuck myeloma, fuck 7 year projections and fuck my body for being such a prick.
Why won’t someone just frigging tell me what I did to make this happen? Did I eat too may kebabs in my teenage years? Did I drink too many shots in Ibiza? Go swimming in a pool next door to Sellafield as a child?
Of course I know it was jut bad luck but bloody hell, that’s a lame reason!
The facts are what they are and there is nothing at all that will change them. I want to find everyone in the world their genetic twin but for the sake of all those people who give a shit about me, I want mine too.
Yes, this is selfish but if you can’t be selfish about not wanting to die, then what the hell else is worthy of the feeling?
Fuck it. Deep breath. Waste of energy.
Why am I writing this pointless diatribe? Put down laptop and go to sleep
…so I did and thank god for that because the above is not a reflection of who I really am or what I am usually thinking.
But it was my reality at the time of typing.
Again…NOT A CRY FOR HELP! Please don’t read into this anything other than tired and temporarily pissed off.
All is fine but sometimes, an unfettered release of vitriol can do you the world of good.
I just did it in text rather than at you directly!