As regular readers/viewers will know, in January I was told that the cancer from my bile duct had spread (despite having surgery), and that I was given an estimate 3-4 months to live, which could potentially be extended with chemotherapy.

For those who don’t know, in the UK you would typically get 6 ’rounds’ of chemo, each lasting 3 weeks, with a scan after 3 rounds to see if the treatment is slowing or shrinking the cancer.

The typical round is week 1 is treatment (in my case, 3 days of it), then in the second week you will have some supporting pills and/or injections (both in my case), and in that second week you are most likely to be immuno-compromised and need to avoid contact with people as much as possible to minimise the risk of becoming ill.

The third week is the best week of the three as you recover and get somewhere near normal.

I had 3 rounds of chemo and a scan.  Which unfortunately yielded yet more bad news – my cancer was not responding to the treatment, and the clinical decision was to stop treatment.  The only alternative offered had no evidence that it would work, it was a ‘best guess’ offered by my oncologist, given the situation.  The side effects sounded pretty horrific.

I decided not to take it, and have resigned myself to the fate that I guess was always coming, just faster than I’d hoped.  I’ve subsequently found out that a friend’s sister had the same treatment and the side effects were even worse for her than described – she stopped taking the pills after two cycles, but suffered for the rest of her time from it.

But it has not been all downsides.  Chemotherapy is gruelling and frankly, beat the crap out of me.  While I know that I’m not getting away with anything at this point, I do feel much better on a good day than I did at any point since starting chemo.  T and I have been in a position to actually go away and do some things we wanted to.  This simply wasn’t possible during chemo as I typically had an appointment at least twice a week, and sometimes would have something scheduled nearly every day, as well as periods of not being able to see anyone.  It genuinely has been freeing being able to do these things, even with the underlying context of what’s happening to me.

I have been productive, although I have not done anything music-based; it’s just too painful.  I’ve been programming (python, not cubase!), and doing lots of odd jobs here and there, as well as enjoying time with T.  We’re together almost all the time, and I have to thank everyone who contributed to the just giving page for their generosity.  Having one less thing to worry about because of this (i.e. the money worries we would have had otherwise) has made a big difference to both of us, and. I can’t thank all of you enough.

I am feeling well enough to think about making a video as I think I’ll probably express all of this better, but I’m also going to post this on here as writing often follows a different pathway through your mind than speaking.

I don’t know how long I have left, but I have been fortunate enough to have sessions with an excellent counsellor (after a disastrous first one from a Bupa/Macmillan counsellor who I ended up making a formal complaint about given some of her completely inappropriate comments), who has helped me find a path forwards in this difficult time.   In fact I’m due in a session in a short while, so I will leave this here.  A lot more has happened that I’ve not even mentioned here, but that will be for another post – hopefully.