Lady Luck and the cancer demon

Somebody posted this on Twitter (X, yes I know, but…) yesterday, and I responded to it, saying it felt like victim blaming to me. They got a bit narky about it, and said it was really important to them, so I dropped it. Whatever gets you through the night, I guess. I don’t want to tear down something that helps somebody. But I can’t stop thinking about it, and this is my space – and I’m assuming that if you’re reading this, you’re interested in those thoughts. So here goes. Hopefully this will get it out of my system, and I’ll sleep a bit better tonight.

First of all, I think I hit the descriptor for being in radical remission. I’m certainly a super survivor. When I was first diagnosed, it was unlikely that I’d see my kids through primary school. My daughter is now doing a Master’s degree and my son’s in his second year at uni, so I have definitely beaten the odds. I didn’t do any of those things.

The poster didn’t give any citation, so I haven’t read the original paper, so I’m not critiquing that, I’m just making points and asking questions.

My first point is: here I am. Interview me about what I’ve been doing to live so long with such a poor prognosis. I’ll tell you whatever you want to know. Since I was diagnosed, in my close friendship group there have been 3 more people diagnosed with poor prognosis cancers. They were all beautiful, talented vibrant people. They all had children who loved and needed them. They all loved and were loved. They had amazing lives. You can’t interview them. They’re all dead. They might have done all of these things, but they died anyway. How would you know?

Secondly, it’s notoriously hard to pinpoint what makes people live longer. The Mediterranean diet works brilliantly round the Med. It doesn’t seem to work so well in Birmingham. If you look at the interviews with 100 year olds, they are always asked what the secret is. They all have different answers – oh, I never married – oh, I have a glass of wine and a cigarette every evening – oh, I eat porridge every day. We are creatures who crave narrative – cause and effect, and who crave agency. We desperately want to be captains of our souls.

This post ignores luck. The Romans worshipped the goddess Fortuna, and she has many aspects. When I say worship, I suspect it was more about propriation, about nudging. She’s a much more powerful goddess than we like to admit.

Look at me. I was lucky to be born into a nice, middle class family who had the emotional and financial resources to support me. I was lucky to meet my husband, who has been an amazing partner and support and rock and source of joy for over 30 years. I was lucky to have 2 wanted, beautiful, healthy children. I didn’t depend on luck. I worked hard in my career, I work hard to be the best parent I can, I try to be as good a partner as I can. Machiavelli reckoned it was 50:50, luck and work. I intuitively feel that’s about right. And with this cancer thing, I honestly, truly believe that I have been lucky. I was unlucky to get it – no family history, healthy lifestyle – and I’ve been lucky to live this long with it. And my beautiful, talented, lost friends? They were unlucky.

I think it’s the last point on that list that really gets to me. “Having strong reasons for living”. As if really wanting to live is going to change things. It feeds into the battle language that I find so hard to stomach. I’m not stronger, I’m not braver, I’m not hungrier for life. I’m just lucky. Saying otherwise feels like an insult to those beautiful people who didn’t survive this long, and I won’t accept that. They deserve better. That’s the one thing in this I’m prepared to fight for.

Excuses, excuses.

I haven’t been here for ages. I had intended to write regular updates, but things got in the way. I have excuses.

Firstly, fatigue. Oh, fatigue. The kids were home over the summer and all my energy went into spending time with them, even if it was just lolling on the sofa watching Gilmore Girls. We didn’t do much. I sat on the beach a few times while the family swam. We ate out a couple of times – lunch is much better than dinner for me.

Secondly, I’ve been doing a lot of emotional work. I am accepting that I have a chronic illness. I am impaired. That’s been tough – I have soldiered on through a lot of crap – chemo, multiple surgeries, various medications. I’ve always bounced back eventually. (Not always much of a bounce – think time expired tennis ball rather than bright india-rubber) but the bounces have got me there. During the treatment break I had last year we did so much, we had so much fun, we walked a lot, we ate EVERYTHING. It was great. But now? I don’t see myself bouncing back from this. I have definite lung impairment thanks to secondaries. That means I get breathless easily on exertion. It means I get really breathless when I talk (and I love talking). It means I have this scarily hacking cough. It also means that I’ve become a bit anxious about seeing people, especially people I don’t know. It’s embarrassing to suddenly start barking instead of talking. It’s embarrassing to have to leave the room because you’re coughing so much you can’t stop. The cough varies a lot, it’s unpredictable. Nothing seems to make a huge amount of difference. It is silencing me.

I feel like so much is being taken. I can’t drive (2 years off driving thanks to brain secondaries). I certainly can’t casually walk 10km the way I could a year ago. I struggle to have conversations with people. I haven’t written anything for weeks – the words just aren’t there. It’s hard.

I’m hoping that I can make this adjustment. That I can learn to manage this, find new ways to fill my cup. I’m still hoping, so that’s good. Hope is still there.

Week 5. The nevers.

I have a bad attack of the nevers at the moment. I saw a little trailer for a Black Bough book – Wonderful Things. I have a poem in there. It’s a collection inspired by Tutankhamen, and the trailer has shots of Egypt – and I’ll probably never go to Egypt now. I’ll never go to New York. I saw an Instagram reel about the Fitzrovia Chapel, and found myself thinking “I may never go to London again”. Some of this is realistic. Even if I get well enough to travel, it’s going to be a while before I’m insurable. When I say a while, I mean a long time. I don’t want to be a “never” person, though. I want to think about possibilities.

So, good things.

The kids are great. They are cooking regularly, shopping, being helpful, saving funny videos for me.

I have friends who check in regularly.

My tastebuds have been minimally affected (so far!) – so I can drink tea and enjoy my food.

I really bounced back in my week off. I felt pretty normal – I was pleasantly surprised.

I have knitted two small frogs. Small projects are working well for me.

I don’t have the energy or clear-headedness for creative writing but I managed this post!

I’m radically resting. I’m forgiving myself for being exhausted. I’m embracing the horizontal.

Week 3. The break.

Oh, and I needed it.

Last weekend was the Bad Weekend. Fatigue. I can’t desribe chemo fatigue. Fatigue to the point where having to make any kind of choice is overwhelming. I mean, any choice. Do you want pasta or potatoes? Do you want tea or coffee? Fatigue that reduces you to tears when the kettle is switched off at the wall and you didn’t notice. Fatigue that makes your children sit you down in front of a Studio Ghibli film because that’s the most comforting thing they know. Fatigue that feels like you’re trapped underwater, in the dark, only vague sounds and lights filtering through. Fatigue that challenges your sense of self.

That lasted Saturday through to Monday. Monday, my week’s break started, and I’ve been feeling steadily more myself. Yesterday, I felt pretty normal until about 6pm and then it was like somebody switched off the power supply – but even though I was tired, I wasn’t overwhelmed.

This is pretty good, then. My sense of taste has remained relatively intact. I’ve had some mild, easily controlled nausea, and a bit of squittiness – which I’ve jumped on (maybe over-enthusiasitically) so that it hasn’t gone on to be a proper problem. I’ve been sick once (twisty car journey, anxiety, hot day, steroids…). If it carries on like this, it’s manageable. I’ve kept a diary of symptoms and the medication I’ve used to manage them, and it’s not bad at all.

The worst thing is the fatigue, and the breathing. The breathing isn’t any better. I try not to cough, because it doesn’t improve things, and I suspect it might make things worse, but sometimes I can’t help it. I struggle to hold a conversation. Talking is the big thing that makes it worse – I think it’s about taking a deep breath and exhaling. I just looked it up: Tidal breathing is a cycle of roughly 40% inhalation and 60% exhalation, and the exhalation is passive, meaning no muscles are activated to do it. However, when breathing for speech, the cycle is roughly 10% inhalation and 90% exhalation!

My mum is still in her rehab unit (physical rehab – I’m kind of aware that saying she’s in a rehab unit makes her sound like Amy Winehouse, and she’s really not) – and is 5 hours’ drive away. It’s very hard to have a phone conversation with her because my breathing just goes and I end up barking down the phone. She’s terrible on the phone anyway, but I feel really cut off from her, and I feel bad about that. My parents’ don’t seem to be able to grasp the fact that talking is really hard. I was offered a guest slot at a poetry event next Wednesday, and I’ve had to turn it down. I’ve dropped out of my Italian lessons. My husband has taken the car in for a service today and luckily my daughter is at home and has gone to pick him up (we’re very rurual, the garage is 20 minute’s drive away, THERE IS NO PUBLIC TRANSPORT HERE), because I am not allowed to drive. It’s crazy, but I feel like these things chip away at my identity. We are what we do, aren’t we? What will be left?

And it’s raining. We needed the rain, and, frankly, the cool is welcome. I love the heat, but with chemo, it was a bad combination. The world is greening up again.

Week 2. The rollercoaster.

Well, what a week it’s been. Some nice stuff. Some shitty stuff. Where to start? Let’s do the classic feedback thing, and start with nice.

OK, so the capecitabine isn’t too bad so far. I’m aware that could change. Last time round, after thing went disastrously wrong, a chemo nurse told me “You get one free round” with cape. So next time might be worse, I’m prepared for that, but so far it’s just fatigue in the late afternoon and some mild, manageable nausea. I think fat doesn’t help, so I’m avoiding fatty foods (cheese! Sigh!) and I’m avoiding alcohol.

I’m aware I’m avoiding alcohol because we had a lovely Father’s Day meal in what is becoming one of our favourite pubs and I had a couple of drinks there and felt pretty ropey afterwards. We don’t really celebrate Father’s Day – my husband can’t bear commercial holidays – but we tagged along with friends, and her parents, and his mum and step-father – a really nice Sunday roast, all sharing platters and conversation. And then the day after that was our 30th wedding anniversary, which is officially pearl, but in our house was sun-lounger (him to me) and nothing (me to him), and our favourite small vineyard champagne (I know how that sounds, but honestly, we are very lucky to have Bray Valley Wines in South Moulton, and Charlie sells this great French champagne that comes from a producer too small to sell to the Big Boys, and it’s not expensive, and you could just sit down and drink a bottle over an evening for the pleasure of it. If you’re in North Devon (which I know you’re not) you should check him out.

So that was all lovely and normal and I survived, and feeling crappy afterwards was OK.

The bad stuff, then. I had a call from the radiotherapy team at Plymouth to run through my consent forms. “Has anybody talked to you about driving?”

“No”

“Oh, the doctors usually have that conversation. I’ll get someone to ring you”.

So the call comes later on. Very apologetic. I have to inform the DVLA, and I probably won’t be able to drive for a year.

A year!

I can’t imagine. We live a mile and a half from the nearest bus stop, and you can’t even walk there because it’s a country road that’s has far more traffic and trucks than it was designed for. There are Devon banks on either side (a Devon bank is a wall with a hedge laid on top of it, and grass and stuff growing over it. Very pretty, and a wonderful part of our heritage, but also absolutely solid). And anyway, there’s only a bus every 2 hours and it doesn’t go to our local town. So if I can’t drive, I’m dependent on the husband and the kids, which is fine while they’re at home, not so fine when they aren’t.

This is just practical stuff. We’ll sort it out. But it did feel like another door closing. I have a feeling that it might also have a massive impact on travel insurance, but I’m not going to think about that now. The nine months of treatment break feel like a dream – did I really trek through the rainforest in Costa Rica? Did I really walk 10 miles a day in Florence? Did I? – I don’t know when the next trip could possibly be. We’ll cross that bridge when we come to it.

So, that was shitty. And the treatment was really quite unpleasant. I mean, I survived it, but I spent an hour clamped into what was a very uncomfortable, hard plastic mask. I came out with imprints on my cheeks and lips, and struggling to move my jaw for 10-15 minutes. I couldn’t move my face at all, not even open my eyes, and there were whirrs and clicks and beeps and rumbles, and obviously I was on my own because – radiation! – and I lost all sense of time. I cope pretty well with most things, but this has been tough.

And then we got home last night, and I was feeling weird – I’ve got this bizarre combination of medication sloshing around in me: capecitabine, steroids, and then loperamide (I was a bit squitty) and metoclopromide and a travel sickness pill (I was sick on the way down to Plymouth) and then my usual meds, and my body doesn’t know what’s what. I ended up taking the lunchtime steroids at 5pm because I just didn’t get to eat until then, so last night I was that awful combination of exhausted but buzzy that I only get from dexamethasone. But we sat outside and the rooks put on a massive display of aerobatics for us, and you could smell the honeysuckle and the roses, and the moon was a sliver of lemon rind, and for a few minutes I forgot this stupid body and was just there, caught up in it all. And it was beautiful.

Week 1

So, how has your week been? Mine has been…intruded upon? Something like that.

I picked up the medication on Monday. I’ve been transferred to our local chemo unit, which is pretty new – maybe five years old? – and really nice. Full of light, designed really well. The staff are lovely. You are offered a cup of tea or coffee as soon as you arrive. I don’t just pick up medication, though, I have a little run through of symptoms and stuff. Just before I left, the nurse told me that she thinks it’s braver to take tablets every day than to come in for an infusion. It’s now Day 5, and I appreciate that. I look at this little pile of tablets in my hand (five of them, on top of my usual medication…) and I kind of baulk at them. And then I swallow them.

Side effects? I’m trying to find the right word for it. Lethargy? Fatigue? It’s really hard to describe. I feel tired, but not sleepy. I’m actually finding it quite hard to sleep. Also, the heat. I usually love the heat, but this is grinding me down. I don’t know how people who live in really hot countries do this. Thirty degrees is doing me in. I’ve had a bit of vague nausea, treating it with metoclopromide, which doesn’t help the tiredness. And I feel cut off from the world. The chest is still tight. I almost feel like it’s getting worse. The heat doesn’t help that, and I wonder if there’s a pollen/dust thing going on?

I had a long trip down to Plymouth on Wednesday to be fitted for a radiotherapy mask. I have two little brain metastases, one in the right frontal area, one in the left cerebellar area. They are almost a chance finding – I had a scan because I had some weird visual migraine prodrome stuff happening. There is no way that these mets are causing the visual disturbances, but they have been picked up while they are teeny tiny, which means treatment is more likely to be successful, and I’m less likely to have significant consequences. It’s a gift!!!

It is a gift. I’m lucky, sort of. A little gleam of luck in the big muddy heap of shit I sometimes feel I’m wading through. It’s a gift.

What’s helping? The kids are home, so there’s more noise in the house. It’s nice to hear about their adventures. I’ve been reading other people’s blogs and substacks. Those short reads, little dips into other people’s lives, they really suit me at the moment. I’ve read one book, that was far too good to waste on me at the moment. An intense book of quiet desperation. I’m going to go back to some full on, plot heavy, fantastical stuff. YA without too much UST. If anybody has any suggestions, that would be great. I’m going to mention Bimblings and Tramp up a mountain. Living in the present is so hard. How do you not spoil everything by worrying about the future – and the past? I try and I try and I try, and I fail and I fail.

I’m symptom tracking. That’s not helpful right now, but it’s a gift to future me, who will appreciate this. Symptom tracking gives me a feeling of control – I know Day 3 is like this. I know Day 5 is like this. It was so consistent with the last treatment, I’m hoping it will be consistent this time. And if not, at least I’ll know.

I took the plunge and ordered A matter of death and life by Irvin Yalom. I read Staring at the sun several years ago. https://fantasticmetastaticme.wordpress.com/2016/07/10/staring-at-the-sun-irvin-d-yalom-books-that-have-helped-1/ and wrote about it years ago, but even then I hadn’t read it for a long time. I was trained as a psychiatrist in the UK with this idea of the “irrational fear of death”. The comfort of Yalom is that he allows you to fear death. Fearing death is normal. That’s one of our major drives. The trick is not to let that stop you living.

I am grieving a little. A month ago I was full of energy. I had my first poetry collection out in the world and a book launch full of love. It was a great time. And now I’m lolling like a Victorian invalide, struggling to engage with the world.

The kindness of strangers.

I kind of feel bad writing this post – and maybe I’m writing it to work out why I feel so bad? Maybe that will become clear as we go on? Let’s see, shall we?

OK.

I went for my pre-treatment chat on Thursday. It was a little bit disappointing because the Very Important blood tests that will actually determine whether I can start the planned chemo or not had not come through yet. So I’m getting ready for one thing, but when I ring tomorrow I may find the plan has changed. This is a little disconcerting. I’m all for freestyling in most things (yes, add a little basil, why not? Oh, let’s check this pub out – looks nice! I wonder what happens if you turn left here?), I’m not mad keen on last minute lurches in my treatment plan. Anyhow, we discussed in detail the side effects and the logistics of the tablets that I will probably be starting on Monday. Almost certainly will be starting on Monday.

Just as a side note – these are the tablets that nearly killed me two years ago. Quite literally nearly killed me. So, as you can imagine, I have slightly mixed feelings about them. And I don’t feel quite so confident as the chemo nurse that these blood tests are going to come back saying “go”.

Anyway, I’ve moved to a new chemo unit, which is nearer home (yay!) and brand new (yay!). My first lot of chemo basically happened in a pretty grotty repurposed hospital ward. My second was lot was one and a half hours away (they closed the place that was 45 minutes away part way through). I guess the advantage of living in the countryside is that at least it’s a pretty drive…

The staff are very nice. The unit is very nice. People keep offering tea and coffee. Parking is free for oncology patients – that’s very nice. The chemo nurse is very nice. You get the idea.

And part of this general niceness is that I got a goodie bag.And obviously, that’s very nice. Except that I feel inexplicably annoyed about it.

I did get a chemo box at the start of my first chemo. It was from a friend at work. I was really touched – she’d gone out and thought about me, and thought about chemo, and she’d bought stuff. Just little things – tissues, and sucky sweets, and something to read, and socks, maybe? It’s a long time ago. She did it because a friend of her’s had been given one, and she wanted to do something nice for me. And after that, I did it for a couple of friends, and they really appreciated it. And I think they possibly went on and did it for other people. It was like a chain of love going round the country.

This box was massive. It had loads of stuff in it – sucky sweets, and mouth-care mints, and socks (Seasalt, very nice, thank you), and a woolly hat and a colouring book, and just loads of stuff. In a branded box, from a charity called ChemoHero. So why does it irritate me so much?

I think it’s because it’s just stuff. I’m sure the people raising money to do this, and getting the actual stuff, and packing it so carefully, are doing it for amazing reasons. Maybe they’re “giving back”, or they’ve had a loved one going through this. Maybe they’re just caring people. I don’t know. I’m sure the love goes in, but somehow, it didn’t come out. Also, the hat is just not me. It’s generic caring.

I think this might be a “me” thing. Do I sound really ungrateful? I feel like I’m being really ungrateful. I just don’t want this. I don’t want to do this. I don’t want to be in the chemo club. I don’t want to be another person on the conveyor belt.

I’d quite like to cry, but I can’t seem to be able to. I’m wasting my last few days pre-chemo feeling cross and miserable and full of dread. I’m scared the tablets will make me ill again, even though it’s going to be a lower dose, and we’re forewarned, and I won’t try to tough it out, and I’ll make much more fuss if’ somebody tries to reassure me. It’s not just that big illness stuff, though. I keep saying “I’ve been so well!”, but actually, I’ve just felt normal. No mild queasiness. No altered taste. No fatigue (until the last couple of weeks). Normal is pretty wonderful, in fact. Appreciate it!

I’m going to try and write here more regularly.

The carnival is over.

Well, it’s been a good few months, and I’ve really, really, really enjoyed the treatment break, despite the fact that sometimes it’s felt like I’m in some kind of psychological warzone. I feel like I’ve been truly alive again for the last 8 months, truly myself.

But we knew it couldn’t last. A bit longer would have been nicer, but there you go.

I’ve had 2 scans since Christmas. There has been an increase – a small increase – in the size of my lung mets, and a significant increase in size in some lymph nodes in the centre of my chest. Excitingly, for the first time I have an actual symptom that’s caused by cancer! I feel an irritation – as if I have bronchitis (which, effectively, I have – the lymphnodes are pressing on my bronchi) – and I have a cough. I spend a lot of time trying to suppress my cough. I’m trying to get to know it. I haven’t quite worked out what makes it better and what makes it worse, apart from talking. If I talk, I cough. That is pretty disastrous.

I’ve seen my (brand new, shiny, fresh out of the packet) oncologist. We have a plan. The plan is (hopefully) capecitapine. AKA The One That Nearly Killed Me. Thing is, it had a massive effect on the tumours, as well as the massive effect it had on me.

I have fallen off the end of the known guidelines, and I’m in the realm of “expert opinion”. Or “let’s give it a go – what’s the worst that can happen?”. In some ways that’s good – I’ve survived like a cockroach – but in some ways it’s scary.

Yes, I’m scared. I’m miserable. I’m resting, which is really very miserable, and I’m not good at it. Distraction is my best friend, and I’m finding it hard to be distracted at the moment.

There is always a chance that I won’t be able to have capecitapine. Bizarrely, that is a Bad Thing. The other options are likely to be worse, certainly in terms of my day to day freedom.

I’m so lucky to have got this far, I know that. If you’d offered me this at the start, when I had a 40% chance of 5 year survival, I’d have bitten your hand off. I’d probably have bitten my own hand off, to be fair. But the next few weeks are going to be tough, and genuinely a bit risky, and it’s hard to feel lucky right now.

The Crow Gods have landed!

Sarah writes poems

The Crow Gods is officially out and available to buy. You can get it here – just click on the title. There are links for the physical book, and also for an e-version:

The Crow Gods by Sarah Connor

We don’t make poetry for money. We make it for lots of reasons – I’m not entirely sure what mine are, let alone yours – but buying poetry enables small presses to keep going, to keep publishing, and to bring poetry to a wider audience. So thank you to anybody who buys this. I hope you enjoy it.

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I have a book! The Crow Gods.

Isn’t it gorgeous? My first chapbook of poetry is going to be published by Sidhe Press over the next couple of weeks. I am excited, nervous, honoured. So many feelings.

Do you like the cover? I love that crow. I love the way he looks at you. He’s not impressed.

It’s a very poignant cover for me. I don’t know if you realise, but I run two blogs on here. I started blogging here at Fantastic Metastatic Me as a way of getting my thinking straight about my diagnosis of metastatic cancer. I started the second blog, fmmewritespoems. specifically to write poetry. I thought the cancer people wouldn’t be interested in poetry, and the poetry people wouldn’t be interested in cancer. I thought I could write poetry that would be distanced from the cancer thing. Of course, cancer gets in every where – it has informed who I am, what I feel, what I experience, and certainly, how I write.

I was diagnosed with my primary tumour in 2008. At the time we knew I had lymph node involvement. My husband, who’s a doctor, has since told me that he thought I’d make 5 years, if we were lucky. He didn’t expect me to see the kids out of primary school. Well, number 2 has started uni this time. We’ve been incredibly lucky. It hasn’t always been great – it has definitely impacted on their childhood in a multitude of ways – but we’ve had a good time a lot of the time.

Over the last 15 years I’ve had friends who’ve had cancer diagnoses. I’ve had friends who have had treatment – surgery, radiotherapy – and been OK. And I’ve had friends who’ve died. These are not online cancer community friends, these are old friends who’ve been a big part of my life. One of them was Mike, the guy who drew my crow for me.

Mike Bryson was a lovely bloke. He loved football – he loved Liverpool FC – he loved his wife – he loved his kids – he loved his friends – and we loved him. He was in a cult band (Bogshed) when he was younger, and he was an artist who lived off his art. He drew cartoons and caricatures, and he was a professional illustrator. He’d just been commissioned to illustrate a new edition of the Agaton Sax children’s series, following in the footsteps of Quentin Blake. He was amazingly talented. He and his second wife, Faye, were both diagnosed with cancer in 2021. She died the following year, and Mike died last November. Over the summer before he died, he drew and drew and drew. It was his escape.

When I knew the book was a potential reality, I asked him if he’d done any corvid pictures, and if he had, could I use one? He hadn’t drawn one, but he quite fancied doing one. He liked their attitude. A couple of days later, my crow came through. A gift.

I have had so much love and support and care over the years from people. I’ve had this cancer thing for so long, I’ve lived with this time bomb ticking quietly in my chest. My feelings around other people dying of cancer are complicated. First of all, there’s the grief. I’ve lost some really wonderful friends, very special people. There’s no rhyme or reason to this. None of them were unhealthy, none of them deserved this to happen. They were just unlucky. Then there’s fear. I am afraid – I’m afraid of pain, and nausea. I’m afraid of dying. I think that’s normal, but most of the time we don’t think about it. There’s too much living to do. And there’s guilt – not a lot of guilt, but some. Guilt that I’ve “made a fuss” and I’m still here. Guilt that I’ve been so incredibly lucky. And there’s a recognition that I have been lucky – and that’s hard to admit sometimes. It’s all very messy.

So I love my crow. Thank you, Mike. Thank you for the crow, and for so much more.