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The one I didn't want to write

Well, I’m not sure how to write this one.You all know I’ve had a pretty rough start to the year. In the past month or more however, the pain has really ramped up. This, along with the dodgy arse explosions and absolutely no energy, meant my scan was brought forward and treatment was delayed. A week later a very frank discussion was had with my lead oncologist.


We all know that my cancer is incurable, however we’ve never put a time frame on that. Very much a ‘treat it till we can’t’ scenario. This time was different. Although the scans show the disease as stable, my blood work and progression of symptoms show a different story. My cancer is weird, and doesn’t behave like ‘normal’ cancer. Bowel cancer likes to move to other organs, mine hasn’t done that. This bastard tumour has been unpredictable from the get go. So with trepidation I asked 12 months? I was answered with a sad shake of the head and the answer “probably less”. Maybe 6-12 months.


To be honest we were expecting this kind of meeting, I was already anticipating the worst, but that didn’t ease the blow. Tears of frustration, sadness and anger all rolled into one fell out of my face.Thankfully no snot bubbles, so dignity still intact. More or less. 


My blood work showed I was severely anaemic and my pain was as yet not managed so my oncologist arranged for the good drugs to be prescribed and booked me in for some blood. We also agreed that I would carry on with treatment for as long as I could tolerate it. While the treatment isn’t stopping the tumour, it seems to be putting the breaks on it for now. 


So Gabapentin in hand, we went home. The Gabs didn’t agree with me and I had diarrhea for 2 days… bloody typical! We call them the Gabs as David has never actually met anyone who has been prescribed them legitimately before - usually his ‘clients’ trying to score them whilst completely off their heads.


I was switched to Pregabalin, which is a cousin to Gabapentin, but I seem to be tolerating it better. Both of those drugs take a while to get going, a couple of weeks before you feel the full efficacy. So I am still topping up the paracetamol. At this point, I managed to have a meeting with the Palliative care team, who mentioned I could take Oxynorm (morphine) as well as the Pregabalin and Paracetamol - HOORAY! I haven’t got the balance right yet, I’m still waiting for the Pregabalin to fully kick in, and I’m trying to be cautious with the Oxynorm - too much and I’m in snoozeville. So, hobbling around like a crone first thing in the morning and in between drug doses. My goal is to be present and functioning as much as possible. So I’ve hired a cleaner and mum is my designated chauffeur. 


I had 3 units of blood at Velindre, so you know, breathing now and I have more energy. For those not in the know, 3 units is A LOT. We take the wins where we can get them these days! Please donate if you can, it really is life changing and you’ll more than likely get a cuppa and a biscuit if you do.


Thanks to this cocktail of drugs and some rubber knickers I made it out to my son’s gig! A small but very significant victory.


My affairs are already in order, so there’s been a little bit of deathmin to sort out, but weirdly it’s like sorting out handover notes when you’re about to go on holiday from work. Showing my family how I cook various dinners so they can continue to cook and enjoy them once I’ve gone, when the animals are due their flea and worming tablets, the mundane stuff. There needs to be a word for that, Posthumous Handover? Pre Death Download? It’s a working title.


So that’s where I am. I’ve defied the odds before, and I’m going to hang on for as long as I can with the usual grit, determination, and sheer bloody mindedness you’ve all come to expect. I don’t have a bucket list - hate that term, but I am throwing a lot more in the Fuck it Bucket before I kick it.

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