As I mentioned in the 'about me' blurb, I've been living with cancer for the past three and a half years. My diagnosis came completely out of the blue in November 2019 - I'd experienced abdominal bloating which had gone from nothing to looking as though I was 6-7 months pregnant in the span of less than two weeks. The day I lost my appetite I was concerned enough to book a GP appointment for the next day - expecting her to do blood tests and tell me I had some sort of dietary intolerance and would have to give up wheat, dairy, or both. A life without bread, pasta, and cheese would be a shock and would involve huge changes, but would be far preferable to continuing to feel the way I did.
My GP was wonderful - she did indeed do blood tests for various food intolerances, and one for ovarian cancer. When she called me the next day and asked if I could come to the surgery as she thought we should speak in person, I realised the news was going to be the thing I'd discounted out of fear and 'that doesn't happen to people like me'-ness.
Reader, it does. Over the next 5-6 weeks, I had two stays in hospital of almost a week each, had fluid drained from my abdomen three times, and from around my lungs once. I had a couple of biopsies taken, was told I wasn't a suitable candidate for surgery at that point, and started chemo (paclitaxcol and carboplatin). (Did you know it's possible to be allergic to chemo drugs? One anaphylactic response later, I discovered that it is!)
A few months later, I was a good candidate for surgery - that went better than we'd hoped, and they were able to remove all the visible cancer without any of the feared complications, so just under a week later I was home again. More chemo followed, then a year of three-weekly infusions of a 'maintenance treatment' aimed at discouraging further cancer growth.
I didn't know what I'd expected to feel when I reached the end of treatment - happiness? excitement? trepidation? relief? It's hard to remember now, but I do remember the mix of emotions, and trying to get used to having blood tests every 4-6 weeks, instead of every 3, and that feeling like a scarily long time!
Unfortunately, one of the things about this cancer at this stage is that it comes back. There are treatments, such as the Avastin infusions I had, which are aimed at delaying the recurrence, but there isn't a cure so far. It will recur. And in December 2021 I had the first worrying signs that it might be back.
After a couple of months of monitoring, scans, and blood tests, the recurrence was confirmed, so I restarted chemo - carbo again, but this time with caelyx ('the red devil') rather than taxol. Guess what - I turned out to be allergic to the caelyx too, but could tolerate it with some adjustment, just like the taxol - and then managed to develop an allergy to the carbo. It's not unusual for people to have a reaction to one of the chemo drugs, but I gather I'm a little special for having it to all three!
The carbo reaction turned out not to be manageable, so that was the end of chemo for that run. I think I had three abortive attempts, rather than the planned six full doses, so we moved on to plan B: a relatively new drug called (amusingly to me) a PARP inhibitor, rucaparib. Eight months so far, and all seems to be going well...
So, why tell you all this? That's a good question! I think probably because my cancer is not in the past, and never will be. It's a part of my life now - even when there's no signs of any active cancer, there isn't a day when I'm not actively aware of it. Not just the twice-daily tablets, or the 10-inch scar, but in so many other ways. Any unexplained strangeness in my body makes me immediately wonder if this is the cancer recurring - even when I know my blood results are still indicating that it’s not active at the moment.
All of which probably goes some way to explaining the cancer fiction and books on death and dying which I mentioned previously! But I'll give the last word today to my daughter and share with you this poem which she wrote about it all:
my mother
beth bayliss
my mother is not on a warpath
and armies could withstand her gaze
she lives and she love cause she has to
but don’t you dare tell me she’s brave
for this isn’t a fight to be chosen
nor a war in which she could enlist
what else can she do but keep living?
my mum is not brave, she is pissed
stop telling us she will keep fighting
stop saying that it will improve
don’t say she’ll get better
til you’ve seen the letters
that gave us the terrible news
so don’t call my mother a warrior
you can lose all the bellicose bull
at stage 4 you are not in a battle
you are living your life to the full
and that’s how we lift up my mother
and the brilliant woman she is
we don’t talk about fighting or losing
we look at the love that she gives
my mother is not on a warpath
there’s no other road she can take
when your options are go on or give up
tell me, what choice would you make?
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