Back on The Cure for Sleep.

I’m so honoured to be back on The Cure for Sleep. Please check it out here: https://thecureforsleep.com/july-issue-on-promises/#SarahConnor. Tanya Shadrick is creating and curating a wonderful, safe space to talk about important things.

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Docetaxel

So, here we are at the start of Week 3 of my 3 week cycle. Side effects? Yes:

  1. Look at the picture. Can you see when the fatigue started to lift? Oh, the fatigue.
  2. Leg pain. Like my bones were being expanded from the inside. Deeply unpleasant deep deep pain. That settled with the fatigue.
  3. Altered taste. Bitter ramped up to number 11. Tea and coffee tasting like soap. That’s settling now.
  4. And now my hair is falling out. I feel like a moulting cat.
  5. Not really a side effect, but I haven’t been able to go in the water because of the Hickman line. It’s still healing. I’m hoping that, if I’m very sensible and keep it to the end of the cycle, I’ll be able to immerse myself in the sea with a waterproof dressing once everything has healed.

You knew I started Docetaxel, right? We all decided that, while Capecitapine had worked, it was a bit of a risk re-starting it , even at a lower dose. We’re keeping it in reserve. That left me with a choice of intravenous medication. My veins are stuffed – too much surgery, too many interventions. When I was in hospital after the Capecitapine overload it was a real struggle to find veins. So I had a Hickman put in. Once all my stitches are out and dressings are off it will disappear under my collarbone – you won’t notice in under a shirt, but you will see a little white tube under lower necklines. Ho hum.

On the plus side – no nausea, no diarrhoea (except when I ate veggie burritos and had a pina colada – what was I thinking? I think I still have a slightly irritable bowel from the Cap.).

So, all in all, not too bad. I’ll take it. And now I know what to expect I think it will be easier.

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Choosing Doxetaxel

I had my review with my oncologist this week. Nobody seemed massively enthusiastic about me re-starting capecitabine, after my near death experience with it. We’ve put it on hold for the moment, in the knowledge that it worked on the mets, but that we’d need to use it at a much lower dose – and even then there would be risks.

Instead I’m going on to docetaxel. The upside is I’ve had it before (neoadjuvant chemo way back at the start of all this) and it did the job. The downside is my venous access is stuffed by years of injections and infusions, and docetaxel is an intravenous drug. That means I’m going down to Exeter on Thursday to have a line put in. It’s not ideal, but what is? There are no good choices here.

I’ve been thinking a lot about choosing. I’ve written about it here: https://thecureforsleep.com/the-cure-for-sleep-june/#SarahConnor on Tanya Shadrick’s wonderful Substack project. Even though all the choices are a bit rubbish I find it really helpful to remind myself that I am making choices. I’m making them based on information, on experience, on my hopes for the future, on the responsibilities I have as a partner and parent. They are complex decisions, but they are my decisions. I didn’t choose to be here, I don’t have a whole lot of control over some pretty big stuff, but I can have some agency here – even if it’s just to choose to enjoy this cup of coffee, or this view, or which book to download, or which shitty medication to take.

Oh, and if anyone has any tips on docetaxel, do let me know. The side effect list is the usual horror show.

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Adventures with capecitabine

Chemotherapies are poisons. The art of chemo is to kill the tumour before you kill the patient.

I’ve had 2 courses of capecitabine now. The first was OK. The second was a nightmare.

As part of the work-up for capecitabine, you’re tested for an enzyme that breaks it down in your body. I had the test, I had the enzyme, I was good to go. The first course was fine – dry skin, mildly disturbed taste, a reasonable level of fatigue. The second course nearly killed me. Turns out that even though I have The Enzyme, I’m one of a small percentage of people who don’t process capecitabine. When I had my initial chemotherapy, I started off with a combination of drugs including flourouracil. Capecitabine is a pro-drug that is converted into fluorouracil in the body, so I assumed I’d have similar side effects to that first lot of chemo – mainly nausea, fatigue, altered taste. My enthusiastic new consultant has since explained to me that there were teeny tiny amounts of fluorouracil in that long ago chemo – to the point where they are wondering whether to remove it from the combo.

All of this is to say that I wasn’t expecting to finish my second course of capecitabine and then develop horrific diarrhoea. And I mean horrific. And because I’d finished the medication, I thought it would pass over fairly quickly. It didn’t.

After 3 days of dreadfulness, I rang the unit, and was taken in for assessment. I expected to be admitted for 48 hours – ended up being in there for 10 days. I was massively dehydrated, my electrolytes were all over the place, and I had a serious drug-induced colitits. – I’m not sure I’ve ever been so ill. I spiked a couple of temperatures and had some heavy duty antibiotics. My biome is screwed. My husband told me afterwards that I looked like I’d offended Putin. Bless him. The unit is 1 1/2 hours away from home, and I could only have one designated visitor. He came down every day, 3 hours travelling, 1 hour with me. A huge chunk of his time. I came home to a spotless house, clean sheets, home cooking. I’m not sure I’ve ever worried him so much.

The big dilemma is that the damn stuff worked really well. My mets have reduced by about 40% in volume after only 2 courses. Mind you, the last one was probably the equivalent of about 20 courses…

I’m assuming that I’m not unique in this, though I am unusual, and that my oncologist will have a plan. We are due to see her on Tuesday, so I should get some idea then.

The other thing I’ve learned is that I’m a bit too stoical and have too much of a tendency to put up with things. I should have rung the unit on day 1 of the Horror, but I genuinely thought it would pass over. By day 2, I don’t think I was thinking as clearly as I should have been.

I’ve been out for 10 days now. My taste is still weird (oh, tea, I miss you so much!) and I’m still napping in the afternoons. My finger tips are so dry my phone doesn’t recognise them, and my skin is pretty lizardy, but every day I have more energy and I’m optimistic about the tea situation.

I don’t want anybody to be put off capecitabine. It obviously does its job. But if you do develop side effects, jump on them promptly and get yourself seen. Don’t try and ride it out. Take care of yourself. You deserve it.

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A poem about cancer, or anything really.

4am and I’m filled with it
the taste in my mouth
like I’m stuffed with coins
each finger filled with it
no
4am and it’s here in the room
with me I’ve been swallowed
by cancer I’m a nodule
floating in a sea of cancer
I breathe it in I float in it
I’m drowning

6am and it’s getting light
time to pack it away
time to squash it down
into my lungs my bones
time to swallow it down

it’s in me don’t let me scream

I started blogging at fantasticmetastaticme.wordpress.com. I write poems at fmmewritespoems.wordpress.com. You can follow either, or both – or neither, obviously! – depending on your interest.

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Day 10

I went for a walk today, with my friend Julie.

Get yourself a Julie.

This is the kind of friend Julie is:

When we first moved to Devon 15 years ago, I was training for the Moonwalk. The Moonwalk, ironically enough, is a marathon length walk through London, overnight, wearing a decorated bra. It’s to raise money for breast cancer charities. Julie volunteered to train with me, and we walked miles together along the Tarka Trail, talking about everything there is to talk about. That’s really how we got to know each other.

When I had my first chemo, 13 years ago, Julie was there to pick up the kids if necessary. She was there to look after me when I started throwing up uncontrollably (learnt how to manage it after that first time – go straight home, eat something, go to bed and rest).

When I needed my second lot of surgery the kids were 8 and 6. We were trying to work out the best way of getting me to hospital and hour and a half away for 8am, and to get them to school. Julie thought we were mad. She just drove me – and then drove me home in bits because my surgery was cancelled at the last minute because they had found lung mets on my scan.

We walked today, and Julie was the first person I was able to cry with. I think there are so many people who want this to be alright that it’s really hard for me to say it’s not alright. I’ve spent many years managing other people’s emotions and maybe I find it hard to let my own go. Anyway, I had a cry and it was good, and I’m grateful to Julie for being the kind of person who lets you cry, and doesn’t try and make it go away.

We walked the Tarka Trail, like a pair of old crocks, because Julie really needs knee replacements, but she’s one of the people who have been knocked down the list of priorities by covid. We bought a ridiculously over-priced coffee and looked at the river. We saw some oyster catchers and found a poem on the Poetry Pin website. We talked about everything there is to talk about. And it was really lovely, and we’re going to do it again, soon.

So, get yourself a Julie. Because everybody needs somebody they can walk with, talk with and cry with.

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Week 1

Week 1 of capecitabine. Well, so far, so not so bad. The side effects have built up a little bit over the week, but overall they are OK. A funny taste in my mouth, and a slight tingling. A slightly crampy tummy in the mornings. A bit of weepiness – not sure if that’s me, or the medication. And fatigue. Oh boy. I’m OK in the mornings, but by mid-afternoon I’m so tired I can hardly think.

I’ve always been an irritatingly morning person, so at least I can play to my strengths. I’m trying to get anything that involves thought of any kind done in the morning, and leave the afternoons for light reading, tasks that can be done on autopilot and lolling. I may have napped.

On Day 1 we celebrated by having a swim. Air temperature 1.5°, water temperature about 7.8°. I came out knowing I was definitely alive, cruising on those endorphins. And this morning, Day 7, we walked to the end of the world. Or the end of the country, anyway. This stretch of beach is only there at low tide, and it goes out and out, so that you feel like you are some kind of explorer trekking across the trackless desert. It was wild and windy and desolately beautiful. The sea is my reset button.

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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.

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Ooh look, World Cancer Day just happened

It kind of passed me by. I’m never entirely sure what it’s for, anyway. My twitter feed had a few people saying “Yay! I’m cancer free now”, but other than that it didn’t have much impact.

However, a couple of things have happened that made me feel I should do a post here.

Firstly, my son came downstairs a couple of nights ago, looking like a ghost. Really pale. He plays this complicated online game, and from that has built up some online friendships. I kind of monitor them to make sure he’s not doing anything stupid, but didn’t really realise that he did has built up real connections with people over the years. He was pale because a Russian friend of his is stepping back because he has Stage IV brain cancer. He’s 20, and he’s not got much longer to live.

We talked about that, and my son also talked about the people he’s known online who’ve just kind of disappeared. And how he’s probably disappeared from people’s lives, too. I realised I’ve kind of disappeared from here, and that people who I followed have stopped posting. I’m sure it’s mostly for good reasons, and for positive reasons, but I wonder sometimes what happened to them.

The second is the whole World Cancer Day thing, I guess. The cancer narrative remains:

  1. Get cancer. Battle cancer. Beat cancer.
  2. Get cancer. Battle cancer. Lose battle. Die.

I’m sure there are more and more people like me who are living with cancer long term. I was first diagnosed 13 years ago. That’s a long time. It’s been a turbulent journey: I’ve had a lot of surgery now – bilateral mastectomies, oophorectomy (love writing that word), reconstruction, failed reconstruction on the other side. I’ve had chemotherapy and radiotherapy. I’ve worked my way through the anti-oestrogens. I’ve been scanned and prodded and X-rayed and hugged by NHS staff. (The hugging was entirely appropriate and extremely welcome at the time). I’m still here. Things have progressed a bit – I’m likely to start some new and nastier medication in a couple of weeks, but looking back it’s been OK. Apart from the flurries of madness in the few days around appointments, life has been busy and fulfilling. My children can’t remember a time that mum didn’t have cancer. I can hardly remember I time when I didn’t have cancer. It sits there. Most of the time we don’t notice it.

In fairness, the “battle” word is less prevalent than it was 13 years ago. It still annoys me, but I think there is a realisation that it’s inappropriate and painful for people who haven’t “beaten” the “Big C”.

Breast cancer is still pink. And still advertised with boobs. Sorry, chaps, I know you get it too. It must be pretty depressing for men to have to enter the boudoir of breast cancer. But that pink merchandise brings in lots of money for services and research, so we’re probably stuck with it.

So, overall, this is a positive post. I’m still here, still enjoying live, still creative, still laughing. I’m also still anxious about appointments, still grumpy in the mornings, still bored with lockdown. I’m boringly normal – which is an excellent thing.

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Book review -Shadow in the Empire of Light – Jane Routley

Thank you, Netgalley, for letting me read this book.

OK, the first page was a little…ho hum. But I persisted, and I’m really glad I did. It’s a great romp of a fantasy – Routley has obviously had a lot of fun writing this. She has also created a complex world that hangs together really well – a world of mages with magical power, a world with a low fertility rate where family power depends on having children who will become mages, a world where female mages are stronger than males. That adds up to some very interesting power dynamics, enthusiastic sex and a believable heroine navigating the different power streams in her life. And cats. Psychic cats. Oh, it’s fab.

As soon as I finished this one I went to look for other things written by her. I’m really hopeful there will be a sequel. There are a few strings left..

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