Rollercoaster

I used rollercoaster as a title, and then I thought “Strange kind of rollercoaster – it only seems to be going down”.

It’s been a tough few months. I started capecitapine in March, and then had a massive, overwhelming life-threatening response to it (please please please note – I was very very unlucky, and it can be a really good medication) – my body doesn’t process capecitapine, so I was massively overdosed. And yes, they did blood tests beforehand, and I have the enzyme – but I’m one of the 3% who still don’t process it properly.

Stopped that. Well, I don’t think anybody – including my oncologist – was wild about going through that again. It is still an option, though, at a much lower dose. One to have in the back pocket. Stopping that meant going on IV medication, so I had a Hickmann line inserted so that I could have a 3 week cycle of docetaxel. Round 1 and 2 went OK – some taste distortion, lots of fatigue, but things like nausea were really well controlled. I was happy with it. Then, the week before Round 3 I developed an infection in the Hickmann. It tracked in from the skin, so I don’t think it was anybody’s fault – more bad luck – but it was a Big Deal – admission, 2 weeks of IV antibiotics, then 2 weeks of of oral antibiotics. Luckily, after the first week I could have ambulatory antibiotics at home, through a mid-line. I then had a portacath inserted. Two weeks after that, I was back in hospital with a pulmonary embolus. Home again with blood-thinning injections.

All of that delayed my chemo – which had already been delayed by the capecitapine disaster – so I’ve had 3 rounds of docetaxel over a time period when I should have had 6 or 7. However, the last CT scan showed that things are holding (and the megadose of capecitapine I had on board when my body couldn’t process it had worked really well).

I have missed out on visits from friends, the family holiday to Ireland, and a weekend in France (we decided not to fly against medical advice…).

My daughter’s gone to uni at the other end of the country, so although she zooms us and facetimes us and sends me pictures of cocktails and Bridgerton and snippets of news, she’s kind of protected from all of this. My son, however, is in his last year of 6th Form, and he’s right here and very aware. A few days ago had a muscle spasm in my back as I went into his room to see if he wanted a cup of tea. He looked up to me wincing, and asked if I was OK. He said his first thought had been that I’d be telling him I needed to go to hospital. He has taken to giving me a peck goodbye in the mornings when he heads off to school. He stopped doing that years ago, when he got too cool for kissing. He pops in and sits on my bed for a chat most evenings (I go to bed early. I get tired, and I don’t like to end the evening by watching the news. I’d rather read). He swabs himself for covid conscientiously. He is so aware.

My son was four when I was first diagnosed. I can remember him thinking my bald head was funny. The story we told him then was very different from the story we’re telling him now. My instinct, still, is to protect him from distress and from anxiety. We know his school performance dipped when I was hospitalised in April. Not a huge amount, but enough that his teachers noticed.

Not being able to protect my children is one of the worst things. The only thing that makes it OK is that I know they have a lot of love around them. Maybe I have instinctively sought out friends who will love them, shared them with family. And, of course, my husband, their father, is a good man, a caring man, a man who loves them so much.

How do I make this OK? I don’t think I can. I think we’re stuck with it.

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Too many losses

As well as blogging here, I write poems at fmmewritespoems.wordpress.com. I also host poetry prompts at dVerse. This is the first prompt I ever wrote: https://wordpress.com/post/dversepoets.com/17153. I asked people to write poetry inspired by the art of Fay Collins. I’m re-blogging this here because Fay was diagnosed with a particularly aggressive carcinoma last year, and died this weekend.

Cancer takes too many, too young.

Please take a moment to look at her work. She was extremely talented. She was a lovely person.

Thank you.

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Missing out.

I’m supposed to be in Ireland. Specifically, I’m supposed to be in County Clare in a big house by the sea with my husband and my kids and a great rolling crowd of eating, drinking, laughing, chatting, arguing, joking in-laws. I should be walking the Cliffs of Moher and eating in fancy seafood restaurants and listening to debates about which wine to choose. Instead, I’m at my parents’ with an IV pump and a sense of injustice.

Four days before we were due to take the ferry, my Hickmann line got infected. I hadn’t quite realised what a big deal that was. I was admitted, line removed, heart scanned (risk of endocarditis), 14 days of IV antibiotics. My husband offered to cancel the holiday but just because I’m having a rubbish time I don’t see why the family should miss out. He hasn’t seen his siblings for a couple of years (thank you, Covid), and needed to. The kids needed a break. We all needed a break.

We’d done a reasonable amount of planning. I was going to have the Hickmann replaced with a porta-cath (sits under the skin, not above it – so I can swim! Cold water swimming has been my reset button for the last few years), and also had to defer my chemo for 10 days. It wasn’t just a case of upping and going. In the end, I wouldn’t have been able to have chemo at the same time as an active infection, though it would have been good to get week 1 out of the way while the family were away.

It feels bigger than it is. I missed out. I’ve missed out on other things over the last few months – taking my daughter up to uni, seeing my brother when he came down. This is the biggest thing, though. This stupid illness is impinging on my life! We did talk about this. The best I can come up with is that we either stop planning things, or we accept that sometimes we’ll plan something and have to cancel. And it’s very easy to remember the things I’ve missed out on and forget that we had a few days away with friends in Swansea, that my brother came down again, that my friend Claire whisked me out to lunch, that we had a lovely evening at Julie’s, that we gorged on scallops and black pudding in our own kitchen.

It’s the same old same old. Keep going. Enjoy the good things. Accept that the whole cancer malarkey might stop you doing things, but don’t do its job for it. Seek pleasure, seek fun, seek people, seek love, keep being you.

Posted in breast cancer, Living with dying | Tagged , , | 7 Comments

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.

Posted in breast cancer, Living with dying | Tagged , , | 12 Comments

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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