Hi all,
A very sad update. Unfortunately, my father's disease was completely uncontrollable by the time I last posted in October, and he sadly passed away about two months ago, in early January. I knew we were on a difficult trajectory, but how rapid his decline was caught all of us off-guard. He was still swimming 4 times a week as recently as August! But I take some comfort in the fact this means he was not suffering for too long, and that for more than 2 out of the 2.5 years since his diagnosis, he was able to live his life pretty much the way he wanted to, he didn't have to suffer for too long. We held his funeral and burial few weeks ago and it was a lovely ceremony that was very well attended, and I think he would have been proud of us for it.
Just to close the loop on the story above (in case useful for others to read) - what happened next was that at the end of October, we tried to get him referred for clinical trials for 255-Ac, or for the Halda trial, but sadly his oncologist said he was too unwell by that point for them to be able to do it (he wouldn't have passed the screening criteria, in her view), and basically tried to lean us towards acceptance that Dad had basically run out of options. I was distraught, and hardly knew what to say to my Dad, and felt like I'd let him down - even though I knew it was out of our hands.
In hindsight, although it was a horrible thing to be told, she wasn't wrong, as a few weeks later he was in hospital as he had a bleed on the brain and couldn't walk anymore due to his disease spreading. He was in hospital from mid-November, and then a hospice from early December. Yet, given how unwell he was, we're very grateful that - despite being unable to even move himself in bed - speaking to him, he still felt like regular old Dad for most of the time he was in the hospice, and that was really valuable. Huge credit to Harlington Hospice staff who took excellent care of him, they cannot be thanked enough.
We spent lots of time with him in the last few years, and I know that time really meant a lot to him. At the hospice, he had tons of visitors (big family) - there was someone with him pretty much all the time that he was awake, the hospice staff said they'd rarely seen anyone so well visited, and that we can be proud of how well we supported him. He really wanted people around, and I think this helped occupy his mind. I would often fear for his mental wellbeing and how difficult this must have been for him to process, but we must have done a good job because my mother told me that he at one point said to her "you know, I'm surprised I'm not feeling depressed". He was a very practical person who would just get on with life and focus on what he could do to improve the situation he was in and make the most of it, whatever hand he was dealt. And I think we all did that.
And as you can see from this thread, we were extremely thorough about exhausting all the possible treatment options too, so there are no regrets. I really hoped we'd have at least the 5-6 years people typically get with this diagnosis, especially given the outcome of his initial treatment was stronger than most. But - sometimes, this disease is just horribly aggressive, and sometimes there's just nothing you can do, as hard as that is to accept. Even throwing absolutely everything at it won't necessarily shift the dial. It was too late for my Dad, but I take solace in the fact that the Halda trial seems to be showing exceptional results for people who otherwise don't have any good options left, and that's something that could really be a gamechanger for people in future who were in my Dad's position.
It's taken me a while to update this thread, given how difficult the months have been since - but I wanted to sign off by saying thank you to those on this forum who had been so helpful in the last few years. Wishing all of you the best.