It’s been a long time between posts. Given this blog was initially conceived of as a place for me to post treatment updates for friends and family, I generally don’t post when I’ve got no updates. And hey, no updates is good! However whenever I leave it too long I have the challenge of people thinking I’ve died and sending me weird “tester” texts and emails.
The quick update is that I had a clear scan in March. In fact this was the 1st truly clear scan I’ve ever had. Generally there is always some kind of ‘area of concern’ / ‘spot to monitor’ but this was an all clear. I remain very high risk given my initial quick recurrence (less than 12 months after 1st line treatment), so I’ll keep doing scans every three months. Next one (just a CT, rather than PET/CT) is scheduled for June.
It’s strange, medically I’m in the best position I’ve been in since I was diagnosed in July 2017, and yet mentally I’m finding this period one of the most challenging since that diagnosis. In fact I'd go as far as calling it the most challenging. The problem is that I’m now stuck in the middle.
When you have an active tumour and you’re engaged in treatment your life is entirely planned out for you by doctors. You don’t really have much choice in the matter, but you feel like you have great purpose. You’re really focused. Obviously pre-cancer your life is entirely your own, everything feels possible and you can make those decisions on your terms. These are two ends of a spectrum, but right now I’m lost somewhere in the middle. Right now my cancer doesn’t require active treatment however I’ve been told that my prognosis remains bad. I’m so high risk that I’m being scanned every three months and they’ve left my chemo port in - ready for the next round. Yet I look perfectly healthy. I’m working full-time. The more time that passes since my last recurrence (now over a year) the more confused I am about what I should be doing. All my decisions over the last 12 months have been predicated on an assumption that the cancer will return quickly, but as more time passes I’m unsure if or when it will.
One of my biggest fears is that I defy all the odds and I actually live for another 10 or 20 years but I fail to capitalise on opportunity - to live fully - over that period because I’ve been assuming & planning for the worst. And I worry that my kids will see me living that failure. On the other hand, every time I think about taking a risk, I worry that the cancer is going to bounce back in my next scan and I’ll have to unwind anything I’ve got myself involved in - at a cost to me or others. I also worry about wasting time & energy on work and other pursuits, when perhaps I should have been spending it all on my family.
I’ve looked everywhere for examples of people with stage 4 cancer who have gone back to full professional lives, but I can’t find them. If you’re reading this and you meet that description, or if you have any other special insight on how to get this balance right - between stage 4 ‘readiness’, and living a full life - I would love to hear from you.
Over the past few weeks I’ve made some big and difficult decisions at work to try and get this balance right - not stopping work, and still doing interesting and challenging things, but not over committing. I have no idea if the decisions I’ve made are the right ones, but they feel right at this specific moment in time.
Several of my ‘cancer buddies’ - diagnosed around the same time as me and with a similar prognosis - have recently died. It’s a huge reminder of how lucky I’ve been, but also a very timely reminder as I begin to be lulled into a (potentially false) sense of security by a couple of clear scans.
Anyway. Onward and upwards.