I have cancer and I’m considering saying no to chemotherapy.
Ooh, now there’s a click-baity first line. But, I am.
I mentioned in my previous blog that it was all a bit complicated this time and because of this, treatment still hasn’t begun – or been decided upon. I am however, having ALL of the hospital appointments in ALL of the departments with ALL of the specialists.
How to summarise: I have the mutated BRCA1 gene which (in absolute layman’s terms) means that my body’s ability to stop cancer developing doesn’t work. We all get many tiny cancers all of the time, but most people have a body that can kick them to the curb before they get up to any mischief. Mine can’t.
All the previous treatment I have had: much chemotherapy, surgery and radiotherapy have dealt with the big boy tumours that have developed and shown themselves, but haven’t been able to stop the spread of mini cells of cancer moving about and growing once I finished treatment. Left to its own devices, my body, once again couldn’t stop mini cancers turning into actual cancers with spiky helmets and a marauding spirit.
Therefore, the idea of just going for chemo and surgery again is a bit like, to use my oncologist’s words: doing the same thing and expecting a different outcome. The very definition of madness, I believe.
So, what then? Well, surgery will have to happen at some point, whether now or further down the line. And it is scary stuff. The cancer is in the lymph nodes in my neck and close to several important nerves and veins. The possible risks of what I could be left with if any of these get damaged are terrifying and depressing in equal measure. But, I have no choice. Surgery will happen.
But it is also going to be a long, long stretch of treatment this time; we are talking years now. The options include chemotherapy, immunotherapy and different PARP (yes, yes it is funny – do giggle childishly please, we do) inhibitors. All of which have horrible side effects.
And I have to make the decision as to what to do and when and in which order and if I’m honest, I really don’t know.
I’ve said before, and I’ll say it again, having cancer is a full time job. Between scans, blood tests, consultations, treatments, hospital stays, biopsies, phone calls, travelling etc etc, there is little time for anything else – and that includes having any time to think about it all properly, to look after yourself or to come to terms with it. On top of that there is normal life: work, cooking, shopping… I need a P.A. Maybe I should dust off the old Filofax I know is still hanging around somewhere and get myself a power suit.
Talking of accessories, I have just got myself a walking stick – at aged forty-one!! I am increasingly light-headed and my balance a little off and if I’m going to be on my feet for any length of time, I sometimes just need a little extra stabilizing. I find myself horribly self-conscious about the idea of going out with the stick, I’m not sure it will match my converse and dungarees. Joking aside, it feels a huge admission of just how unwell I actually am because, from the outside, at the moment, I look like there is nothing wrong. And I think, I have somehow still been lying to myself a little about it all.
Meeting one of the surgeons this week, heading off to meet the rest of the team in Norwich next week as well as a trip to Addenbrookes – it’s all settling rather heavily on how big this really is.
It is not often, one genuinely has life and death decisions to make. I don’t feel particularly qualified to make them
As ever, I am sharing this and will keep doing so, to keep the conversation going. We need to normalise talking about cancer, because for those of us with it, it is our ‘normal’ every day and we shouldn’t have to hide away because of it and the discomfort it can bring to conversations. And if that puts you on edge – one of these blogs soon, I’m going to talk about death – because I think that needs a PR overhaul too.
That’s right! Death. As a writer, I have notebooks and notes on my phone filled with thoughts that appear to me either in curiosity or with stark revelation. Let’s face it, some on second reading are absolute twaddle but, some are useful and some resonate. Here is one I happened upon again recently:
Be vivid. If I am to live with the spectre of death at my side, I want to be living in happiness and fun when I am taken. Death will be dressed in scarlet and jewels. I will be dancing. No more bullsh1t or small talk. Live boldly.
I am writing this blog with the wind and rain whipping loudly in the dark outside my window, in which twinkly lights are reflected. I have a blanket on my lap, and a cat on the blanket (having a cute squeaky snore). I am going to sign off, have a glass of red wine and give my darling MOTH a huge kiss. Because despite it all, I am blessed. And I may have moments of huge grief but in between, I am determined to live in happiness.
