tiltingheads

Cancer and other stuff

Wired

So writing a blog at 5am is never going to be quite right but that’s what it’s here for I suppose and it’s sometimes in your bleakest hour you need to offload some stuff. I’ve been awake for an hour – I’m on steroids to stop me being sick from the chemo and I remember from 2009 that this waking up in the middle of the night business happened a lot, and was quite frustrating then too. Everyone knows it’s when it’s quiet and dark that that’s when you tend to go off on some mad thought process.

I’ve been really good, I think, at not dwelling on the past 2 years but very occasionally it’ll hit me and I’ll replay it all. Every last bit of it, right back to 2009 when it all started. The tests, the is-it-isn’t-it, it’s ok it’s sorted, oh no it’s not it’s back. And I can’t help but come to the conclusion that, if things had been done differently, none of this would have happened. Obviously it’s all with the benefit of delectable hindsight and I’m not angry, nor do I blame anyone. I’m just bitterly disappointed. So many things didn’t come to light at the right time, or weren’t spotted until it was too late and that’s really REALLY hard to swallow. What should have happened: this 29 yr old woman has a triple negative cancer and is a BRCA1 carrier = instant double mastectomy right from the start. Instead there was multiple surgery, a programme of gruelling treatment aimed as an ‘insurance policy’ which didn’t do a bloody thing and 6 months later, back to chaos except now on an unbelievable scale. I hate the way things have turned out. I hate the fact my life is largely not my own any more. If I ever wanted to leave London, I probably couldn’t as you can bet the best cancer brains are down here rather than anywhere else. Even planning a holiday involves working round other people’s timescales and trying to be flexible enough to accommodate these, yet I don’t see that many people bending over backwards to accommodate me. I’m at the age now where I would ideally like to be thinking about having a family in the not-too-distant future and that’s looking increasingly unlikely, and I know that’s the next big thing I’ll have to come to terms with somehow.

Having cancer is boring. And tedious. And I don’t like the fact I can’t remember who I was or what I was doing before I got it. Seriously, I can’t and that’s really sad. I have a port in my chest that they use to plug me into a drip that pumps me full of chemicals that I know are hopefully doing some good but is this what it’s going to be like forever? This it now? Just plugged into a machine?

Moaning never really helps and I’m
sorry to do this here but, well, it’s just for a little bit. Am just a bit tired (ironically) and wondering. Wondering, wondering, wondering what it would be like if things were different and what I’d be doing now as a result. Which is fruitless I know. Anyway today (is it really only 5.20am? Too early for breakfast?) I am taking my lovely friend Heather to a spa for the day. Think we could both do with some looking after.

The situation is what it is, and largely I’m quite good with acceptance but v occasionally I might have a little pummell with the pillows at 4am and think ‘this is all bollocks’. I’m allowed, indulge me (but not too much, I can be a bit of a nightmare for that at times).

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