As we sat down to eat our breakfast this morning, it occurred to Naomi and I that yesterday’s post potentially left some people thinking that, by me stopping chemo, death was imminent!
So I’d like to apologise if that was the impression given and say thank you for the kind words. Yes I’m likely to kick the bucket earlier than the next person but that is still some way off. As far as I’m aware anyway! (And if anyone knows any different, a heads up would be appreciated!)
It is an interesting lesson in assumptions though. The old adage to never ass/u/me never really seems to sink in! Some have made the assumption that chemo was the only thing keeping me going, or that it was curative, and I have made the assumption that people know it’s not. I have spoken to so many new people lately who have asked about the ins and outs of appendix cancer I forget who knows what!
Many people see chemo as a cure for cancer. That the right mix of cytotoxic chemicals will kick cancers butt and you’re home and hosed. But mostly it is simply one part of a bigger treatment. There is neoadjuvant chemotherapy which is done before surgery with the hope of reducing tumour size. There is adjuvant chemo done after surgery with the aim of killing any nasty cells left behind. And there is palliative chemo, done to ease the symptoms of terminal cancer. Mostly, it’s about hope.
The thing to remember about chemo is that, by definition, it is toxic and isn’t without it’s own side effects. If chemo isn’t curative or is only palliative, do you want to live with the symptoms of the cancer or the chemo? Too many people I have spoken to either regret doing chemo or doing it for as long as they did so they could be there for others.
There are also those who take everything in their stride. I overheard a woman at chemo one day talking about how she’d done chemo for the better part of 20 years. She talked about how she had overcome this and that but how she was glad to be here as a grandmother to her children’s children. It was beautiful and I admired so much her courage, her dedication to her family and the selflessness she approached her treatment with. I remember feeling very small, like she was a better person than me when really, we’re just different people with different values and different journeys.
There is little research as to the effectiveness of chemo for appendix cancer. In fact there’s not much known about appendix cancer at all. They treat it like other colorectal cancers and hope for the best.
If there are microscopic nasties still lurking in my abdomen, which the surgeon always assumes is a possibility, then I will have a recurrance. My cancer was high grade and aggressive. I approach life with the attitude that it will return and that I will need surgery again. At least that way I’m not shocked if/when it happens, and in the meantime it reminds me to live.
Two days before leaving hospital the oncologist came to see me to talk about starting chemo. I was devastated not because I didn’t know it was coming, I just didn’t want it. He calmly reminded me that without it, the cancer could be back in three months. That set me off more. I wasn’t even out of hospital and we were talking about its return before I’d even recovered.
Thankfully, it hasn’t returned yet even though it ended up being 4 months post-surgery that I started chemo. My last two scans and tumour marker tests have been fine and I feel good. Maybe chemo killed left over cells, maybe it didn’t. Maybe the next set of scans I won’t be so lucky. But I’ve educated myself on all the possibilities and I am A-OK with the choice I’ve made.
Stopping chemo for me has been about quality of life. Our family has spent the last 5 years with everything revolving around my shift work, followed by everything revolving around my treatment. Chemo would wipe me out for 3-4 days meaning so much fell to Naomi. I had to avoid people who were unwell which isn’t easy leading in to winter, and just as I got back to feeling like myself we’d start the cycle again.
So, at least for now, I’m fine. I’m working on building up my core strength, I’m contributing to our household and enjoying people’s company again. For me, no matter the outcome, stopping chemo is worth it. For someone else, it might be different which is why I felt it was important to remind people – sick and healthy – that it’s your body and you can do what you want to.