I’ve just received the results of my latest CT scans done at the end of May, covering the 6 months since stopping immunotherapy late last year. Thankfully, all the scans were “unremarkable”, which is great as this means there is still no measurable evidence of tumours in my head & neck, nor in my chest nor abdomen. The consultant was talking about rescanning me every three months for up to 18 months in the first instance. I feel like I can now plan further into the future, which two years ago was unthinkable.
Yet every silver lining…. I was also told that scans had detected an anomaly that they think may be a brain aneurysm. To investigate further, I’m to have an intracranial CT angiogram in a couple of weeks. This has left me psychologically in a weird and uncertain space. It’s not just the suspected aneurysm though, but it's also I think moving away from living in crisis-mode for such an extended period of time. Only now is my brain trying to process everything that’s happened.
Some initial thoughts:
David and I have been having quite a few arguments, stemming from us not connecting as we usually do. I felt that David (now back at full-time work after a research sabbatical) was getting so involved with university life that I was being left behind. David felt on the other hand that I have been drifting away. Perhaps I have been drifting away, to a place that is being more insular. The best I can explain it is that you know when you are treading water at sea, you think you are staying in place, but in fact, it is you that is being pulled further away. For me, I think I'm being pulled into a place deeper inside my own head
And always at the back of my mind is, what happens if/when the tumours reappear? As my 2-years of Pembro are up, would I be put onto chemotherapy? Could I restart Pembro again, or is there be a new checkpoint inhibitor I can try, or maybe even a new therapy altogether…
And there’s also the guilt that I have for surviving which makes me feel that even acknowledging my concerns is a trivial act…
And even as I feel my neck spasming from radiation fibrosis the third time today, I know I am fortunate to be able to be in this position…
And as my mind is taken up less with crisis management, I’m now starting to grieve for a career lost, for friendships not maintained. I accept I had little choice to leave work abruptly due to a terminal diagnosis, but that eventuality is now not so imminent. And whereas before I had the sense of ‘what now’, in these past few months, I’ve been feeling a loss of purpose, a loss of me…
And this in part has led to anger. I’m angry that people must go through this crap, and I'm angry at the inequalities people face in dealing with cancer, and I’m angry that I was told that I may have a brain aneurysm on the same day that my cancer is being held at bay. And then I’m angry at my self-pity…
And these anxieties sit amongst other feelings that I’m having problems articulating. I’m often overwhelmed by feelings where I think this all could have been really different and it’s like all the emotions I boxed up to deal with impending death and leaving David and family break out of the box but then I manage to squeeze the lid on again…
And I wonder how many times I can keep jumping on this emotional and psychological roller-coaster…
And yet I live to feel these emotions and to be able to write them down…
And for that I know I’m lucky.
Thank you for sharing, Anson. I hope it helps you to communicate and work through things that are happening. It sounds like the biggest mindf*ck and to be honest if you were feeling sunshine and rainbows it would be more concerning! Of course you mourn the loss of your career, your identity and all those parts of you that your diagnosis has impacted. It’s excruciating for you and David to have mentally prepared for the unthinkable and to be once again in turmoil, and as humans we take such things out on those closest to us. Life goes on; and it’s a blessing that we should all be more aware of but it doesn’t mean it’s in any way easy.…
Good to see that you continue to do well Anson. My Father was diagnosed with the exact same as yourself in 2021/22 and was being treated with Nivolumab immunotherapy. He has now completed his 2 years and his journey has not been dissimilar to yours. Your blog posts have been a great source of knowledge, comfort and optimism for me during this period. I appreciate the current emotions you are going through and hope that you can resolve. You continue to be an inspiration for all those suffering cancer and other adversities. May I wish you happiness and health.
Sending lots of hugs n love to u both xx keep thinking positive xxx
It’s great that you are able to express all these contradictory feelings. Even without going through what you’ve been going through we all can relate. Sending lots of love!
You write so powerfully about the rawness of uncertainty v survival. Anger and frustration and sadness are bound to be part of that, it would be weird if they weren't. And you are absolutely not weird! Or dysfunctional. Big unruly feelings are fucking inconvenient but you seem to be doing a pretty good job of inspecting and understanding them when you can, and telling them to piss off to their little box when you can't. I salute you with love and respect. Xxxj