Well it seems like my trepidation about the ending of 2015 and the start of 2016 was well founded. I had a scan on Thursday 7th Jan and to my utter disappointment it showed that the cancer was growing again. I’ve dreaded this scenario for so long that when it actually came it was very sad and made me very trembly but it wasn’t a shock.
It’s been very hard not to feel quite hopeful over the last year as I’ve felt so well and have had 10 months without treatment, which also means there have been very few hospital visits, life has felt very normal. I’d even found myself beginning to look ahead and was starting to make plans for Andy’s 50th in June and even looking ahead to my 40th in September. Whilst it was possibly a little naive to have relaxed so much it’s also been really nice and I don’t think the news on Thursday would have been easier if we’d been fully braced and ready for it. My only hope now is that whatever the new plan will be there’ll be time for some more ‘normal’.
I’m swinging between feeling optimistic that I’ll get lucky again and another treatment or treatments will offer the same quality of life that was achieved throughout much of 2014 and 2015 and fear that my luck has run out.
I can’t help but worry that I’ve already had the best possible treatment and what I’ve got ahead of me is a year or so of lurching from treatment to treatment with nothing quite doing what it needs to do before running out of options. I’m trying to banish the sad thoughts from head about how much of my boys’ lives I won’t see but I’m also trying to be realistic. Although it’s horrid to think about I can see that at 10 and nearly 8 my boys are already sturdier and more ready for life without their mother than they were at 7 and 5. However, whilst I know I won’t see them into adulthood I can’t help but think that seeing Oscar into secondary school and Max into double figures would help. It’s very busy in my head right now!
It doesn’t help that no plan can be made until I’m unblinded from the trial I was on and whatever I was actually on will be revealed. I can make provisional plans in my head based on what I think I was given but it’s pointless as I’ll get the truth on Monday of next week. It certainly reinforces my frustration with the trial design as I really don’t understand why I couldn’t have been unblinded when it was decided in March 2015 that I wasn’t allowed any further treatment. It’s just one bit of uncertainty that I could do without.
As well as that irritation, I’m also aware that I’d be a fool not to seek further opinions from other melanoma specialists as to what treatment I should have next. Different doctors have different areas of expertise even within the realm of melanoma and each hospital is confined by it’s own limitations. On top of this, NHS protocols about the order in which you can access drugs adds another level of complexity to the whole thing. If I choose to have Drug A next then it means I’d then need to fail Drug C before being allowed access to Drug B and this doesn’t take into account what order might actually be best for me! And just in case I wasn’t already in a muddle it does matter what order you have the drugs in but there isn’t much of a consensus as to what’s right. So many variables to contend with….
So, as I said before, my head is very full. I’m blessed to have amazing friends who are helping by looking after me and also pursuing other oncologists and seeking their opinions. As I’ve often said, I’m very lucky. Next week I’ll update when a plan has been formed.