Palliative chemotherapy. Ugh.

Yes. Next week. Meeting on Friday. Had my bloods done on Tuesday, ECG just before I pick up my first course of capecitabine. I got my information leaflets through yesterday.

I’m not wildly enthusiastic about this turn of events.

We knew the mets were growing, but I still feel really well. I’ve felt really well throughout this, apart from side effects of chemotherapy, radiotherapy, surgery, oestrogen antagonists, everolimus… so there’s something counter-intuitive about taking a medication with a list of side effects as long as my arm. I’m just hoping I’m one of the lucky ones.

I wasn’t expecting to have such a visceral response to the word “chemotherapy”. Whenever I see it as applied to me, I feel my whole body cringing. Because that was a grim few months of feeling tired and unenthusiastic, and slightly sick a lot of the time, and not enjoying food – or wine – or even tea! Not enjoying tea might have been worst thing, actually. That feeling of mouth-scald and metallic taste and, just ugh, no.

Palliative is not a great word, either. I’ve been “living with” for years now, but palliative sounds a bit more like “dying of”, and I’m not crazy about that as an idea. We are a new group, we “livers with”. We don’t fit the prevailing narrative well. I was referred to the local hospice for counselling 11 years ago, and it just didn’t feel right.

The other aspect of all this, though, is the logistics. Suddenly I will need a blood test every month. I have to make special arrangements to get my medication. I’m tied down.

Being a traveller has always been a huge part of my self-image. The thing that’s kept me going through lockdown has been my fantasy about pootling down through Italy, and beyond. We had a big trip planned for last June – three weeks in Malaysia, five weeks in Australia. It was cancelled because of Covid, and I have a feeling that all those dreams might now have to be modified a lot. Brexit means we don’t have reciprocal health care arrangements with the EU, so I’m going to need to have expensive and comprehensive health insurance to go anywhere outside the UK. I’m going to be more vulnerable to infections, my immune system is going to be compromised. Life has become narrower and more complicated all in one go.

However, I started this blog several years ago because I thought I was dying. I wanted a place to express my thoughts about that, and to think about how to die properly. Turns out I was a bit premature, and I’m hoping that I’m a bit premature this time, too. New treatments come on stream very quickly, and I obviously have relatively slow growing tumours, so I remain hopeful.

I’ve read a lot about death and dying over the last few years. It’s inescapable, sorry. Either you believe you’ll carry on being you after death, or you don’t. Either way, the best way to prepare for death is to live. That’s all I’ve come up with. I share that insight with you freely, and with love. Get on with it.

About sarahsouthwest

I'm now in my early 50s. I started writing again as a way of exploring the world, and feel that over the last 2 years I have really grown as a writer. By day I work with children and young people with mental health difficulties. I juggle my own two children, my work, my writing practice, generally managing to keep all the balls up in the air.
This entry was posted in breast cancer, Living with dying and tagged , , , , , . Bookmark the permalink.

8 Responses to Palliative chemotherapy. Ugh.

  1. Ms. Liz says:

    Thanks for sharing this Sarah. In my books, tea is essential! That little detail said so much xx

  2. pennygadd51 says:

    Don’t die yet a while, Sarah. The world needs more of your poetry. Your writing makes the world just a little better and more civilized.

  3. I agree with Penny above – you invariably write what I wish I’d written – except here of course so I wish you fare forward voyager into the weeks of your treatment that requires a courageous heart and a steely will – cups of tea would at least have helpted a bit but even that is off the cards for now. A real shame.

  4. msjadeli says:

    “Either way, the best way to prepare for death is to live.” Your attitude will keep you going strong, Sarah. {{{{HUGS}}}}

  5. Pingback: Weekly Round-Up | Journeying Beyond Breast Cancer

  6. Yes, to Living! Sending you lots of warm hugs.

  7. I love this post. It resonates with me almost 100%. I’ve been on capecitabine for almost a year. I wish you all tithe best on it.

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