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.

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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:

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.

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Funerals and stuff.

I’ve been AFK, as my son would say. I’ve been away for good reasons – I was offered a treatment break back in September. It was a bit of a shock. I got a call saying that my consultant would like to see me before my next treatment. We were taking the son up to start Uni on the Saturday, and I’d deferred chemo for a week because I wanted to be well for that. We ended up having a consultant appointment on the Friday. We drove the hour and a half to the hospital feeling pretty tense. Why had we allowed this to be booked? It’s never good when you’re called in.

Turns out it was. Sort of. I’d had a lot of chemo, I was tolerating it reasonable well, and things weren’t progressing, but then again, I have such slow growing tumours that it’s hard to say the lack of progression was down to medication. It might just be me. Me and my mets. So, would I like a break, and a re-scan and a review?

It was surprisingly hard to say yes. I think I’d become psychologically dependent on the chemo, even though I felt unwell most of the time. To agree to stopping it was bizarrely difficult. But I did.

I’m so glad I did. I have been so well. My exercise tolerance has come back. We went to Italy and travelled by train from Pisa to Bergamot, stopping at Siena, Firenze, Mantova and Verona. We ate some exquisite meals and drank lots of coffee and good wine, and we walked over 10 miles a day, and it was wonderful. We had a great Christmas. We just spent three weeks in Costa Rica, and saw quetzals and monkeys and humming birds and sloths and humpback whales, and that was wonderful. I feel like I have the strength and enthusiasm to do stuff. My first poetry chapbook is being published in May! A year ago, I was just waiting to die.

I’ve just had a review, and we’ve agreed we can hold off treatment at the moment. I’m to be re-scanned. We are watching and waiting. Turns out everything – including uncertainty – is much easier to handle when you’re feeling physically well.

I thought today – if I was feeling really shit all the time and somebody offered me a treatment that made me feel well, I’d take it – even if it shortened my life a little bit. The thing that freaks people out is that I’m not actively taking something that makes me feel good, I’m just not taking something that made me feel terrible. Honestly, I’m going to enjoy this while I can.

There have been some sad times, as well. We’ve been to two funerals over the last four months, weirdly for two people who we became very good friends with during the same period of our life, when we were first living together in a small village in Yorkshire. They were very different people, who had very different funerals.

Mike was a professional caricaturist, artist, and illustrator. He was immensely talented. He was the bass guitarist in a cult band called Bogshed in his youth. That added the slightly surreal sight of tweets and articles about him from journalists and fans. He died of prostate cancer – he perhaps shouldn’t have died, but his diagnosis was made late – a year after his second wife also died of cancer. He knew he was dying, and we were lucky enough to see him a couple of times while he was in the hospice. He had time to sort out some emotional stuff with his first wife, to spend time with his sons, to catch up with old friends after the great covid chasm. He also had time to help plan his own funeral.

Ernie was our pub landlord in the village. He was rosy-cheeked and twinkly-eyed, immensely welcoming and hospitable. He knew all the gossip, he loved a chat, he kept his pipes clean. He was a pub landlord out of a fantasy novel. He died suddenly and unexpectedly. He was due to meet his daughter, didn’t turn up, didn’t answer the phone. She and her brother popped round to check on him and found that he had died sometime in the night.

Everybody says they’d like to go quickly. To go in your sleep – isn’t that everyone’s dream? I’m not so sure. The shock, the pain, for the people who love you – it’s terrible. Maybe knowing that you’ve not got long is actually a gift. You have a bit of time to make a difference, to put things right, to heal hurts. You have time to comfort your loved ones.

I’ve always said I don’t care about my funeral. I won’t be there. It’s for the people left behind. Having been to these two, very different, funerals, I’m rethinking that. Yes, it’s for the people left behind. However, I think there was a real satisfaction for Mike’s boys in being able to do something beautiful for their father, something that they knew he wanted. Maybe doing a bit of planning is a last act of love.

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Things I love 27: cherry blossom

The first house I remember living in had an ornamental cherry tree in the back garden. It was a prolific blossomer: brash and unashamedly pink. And it came out for my birthday! It was my tree. I mourned it when it had to be cut down – I’m not sure I’ve ever quite recovered.

I love blossom. It comes at my favourite time of year, when the world is full of potential. I love fruit blossom, obviously, but I also love the purely ornamental. There’s nothing nicer than walking round well-established residential areas in the early spring – places where the planting is purely for pleasure. Mock cherry, winter flowering jasmine, magnolias. Glorious.

And I love hedgerow blossom – the pale blackthorn giving way to rich and creamy hawthorn. Elderflower florets. An extravagant spilling of white.

My son and I talk about visiting Japan. Realistically, it’s unlikely I will ever visit Japan, but we can still talk about it. I have a fondness for Japanese art – a superficial westernised understanding of haiku and woodprints and ikebana. The knowledge that the space between things is as important as the things themselves. We like sushi and noodles and ramen. And it’s such a very different culture – I’d love to get a taste of it. I admire that love of transient beauty – it’s something I try to cultivate in myself. I am prone to clutter, to clinging onto things. Blossom season reminds me that everything changes, that things are here and gone – swift, fleeting delights. Impermanence is the rule, not the exception. Everything changes, and accepting that is so important.

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100 things I love 26: airport departure boards

Before this summer, when was I last on a plane? 2018 – a disastrous trip to Amsterdam for a friend’s 60th, when I managed to be so ill I barely left the extremely underwhelming hotel room. And before that…can’t remember. We’re campers, so we tend to do a road trip – and don’t get me wrong, I love a road trip.

Back in the day, though, I got a massive thrill from those departure boards. Yes, I was on my way to Dublin, but look – I could be going to Bangkok, or New York, or Melbourne, or Cairo, or, well, anywhere, really. Going There from Here – wow!

I love road signs, too. Not all of them, obviously, but in the south of Spain there’s one that says Seville, Granada, Cordoba – and what could be more redolent of southern Spain? You can smell the oranges on it. It’s a far cry from Manchester, Leeds, Wakefield. Mind you, I’ve just been up to Liverpool and I did enjoy the big signs saying THE NORTH-WEST. And I love the clarity of the MI: THE NORTH. THE SOUTH.

What I love here is the possibility. The thought that you could go anywhere. The thought that you could just drive north and north and north, past Yorkshire, past Northumberland, into Scotland, nothing stopping you but the North Sea. And in airports, even the sea doesn’t stop you. You could literally step out of a plane into a different hemisphere, a different continent, a place where you can’t even read the street signs, a city where the streets smell of heat and sesame oil, a city where everyone’s wearing fur-lined boots, a city that has no idea who you are or where you come from.

I missed all that. And I’d become afraid of going too far from home. And then, this summer, we flew to Italy. It was a difficult decision – flying is ecologically unsound, airports are tricky places – and then a stressful one, as we watched footage of people stranded in airports for days on end waiting for flights that had been cancelled and re-cancelled. We’d decided to fly because of the narrow windows between my treatments, and we didn’t want to have swapped days on the road and nights in provincial French hotels for hours sitting on the floor in a crowded airport.

In the end, it was fine. The flights ran smoothly, Italy was…Italy!…you know, amazing food, wonderful wine, fantastic architecture, the whole package – and the departure boards were still there, still magical.

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100 things I love 25: The Master and Margarita

I think my copy came from my dad. I have no idea why he had it – it’s not his kind of thing at all. And I picked it up in my teens, so it’s been with me for a long time. I can’t see a tram without thinking of it. If you know, you know. It fuelled my desire to go to Leningrad/St Petersburg – my dad refers to it at Leningrad (“refuse to kowtow to Putin”). Bizarrely, my father and my brother have both visited, and I haven’t – and probably won’t now. Odessa is another place I’ve always wanted to visit, and haven’t made it to. I guess that’s one of the things that books are for – to allow you to visit places you’ll never get to. And times you missed.

What else? Sunshine and warm apricot juice, and then that dark, glorious fantasy – and the fear of oblivion. The great, enormous, over-whelming fear of oblivion.

I had a postcard for a long time (and where did that come from?) that looked like Behemoth in human form. And, strangely, my first serious, rollercoaster boyfriend. I went to a fancy dress party as Margarita (at the ball, not naked on the broomstick) – and nobody knew but me. I forced my husband to read it, and he shares the love (thank goodness – would we be married if he didn’t? Who knows).

On our way back from Rome we met a guy from Costa Rica, who told us it was his favourite book. I’m not even sure how we got to that point in the conversation, but I immediately felt that bond you feel with someone who shares a slightly off-beat love.

I haven’t re-read it for years. I feel I should. I’ve read other Bulgakov in the meantime, but none of it is quite so glitteringly, darkly, wonderfully satisfying. If you haven’t read it, you should. You must. Go out right now and buy a copy, find yourself somewhere comfortable to sit, and read it. Go on.

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100 things I love: a good cafe

A good cafe should offer comfort. Maybe it’s raining, or cold – that damp, bitter cold that gets under your skin. There should be people in there already, but there should be a table free for you. The table itself doesn’t matter too much – maybe wooden, maybe red formica. The chair should be comfortable.

There should be coffee, obviously. Tea (though I probably won’t drink it).

This is not a tea-room. I do like a tea-room, but this is a cafe, and the decor doesn’t matter too much. A tea-room does sandwiches and cake. That’s lovely, but a proper cafe should have hot food. Savoury food. Possibly breakfast-based. Maybe chips? It may have condensation on the windows. It may do something surprisingly exotic – when I lived in London, years and years ago, I had a mild addiction to egg and anchovy sandwiches from a little Italian hole in the wall cafe.

I have a handful of local favourites: Cafe du Parc, which is all mismatched wooden tables and a very French green. It’s a bit of a cheat to call it a cafe – it’s definitely a Cafe. I’d be delighted to find it in France, so to find it in North Devon is amazing; the Rockpool is deep and dark and celebrates the surf at Westward Ho!. Chips and milkshakes and, well, just very good food and lovely staff; the Coffee Cabin – teeny tiny, quirky, fantastic coffee, and owners who make you feel like you’re their favourite customer; Market St Kitchen – it has a secret garden, and the soup is wonderful, and they do a great cream tea.

I’ve read in cafes. I’ve worked in cafes. I’ve talked and disputed and fallen in love in cafes. They are places where people come together, are nutured a little, and then move on. They are places that allow communities to form – the regulars. They shouldn’t be too fancy, they should be open to everyone in need of a hot drink and a bit of warmth. That’s the point.

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Update. You know, health and stuff. And food.

So, the good news is that the chemotherapy is holding the cancer in check for now. Next scan in a month.

The bad news is that the chemo is hard. And the worse news is that after this, when this fails, things will get harder. Eventually, we will have to make some very difficult decisions, and I’m not sure how to do that. That’s for the future, though. Right now, the cancer is being held and the chemotherapy goes on.

It’s hard. Not too hard, but hard. I have four or five days of lurking at the bottom of a dark pool, like a pike. I might well snap, so don’t ask difficult questions, like “what do you want for dinner?”. Or present me with more than one task or thought or idea at a time. Just let me read mild books and rest. Week two is not too bad, week three is pretty much back to normal. My new normal – a slower, plumper, less fit normal.

What’s the hardest thing? I think one of the hardest things is never quite feeling comfortable in my body. I’m losing a bit of sensation in my fingers and toes, and that feels weird. I have lymphoedema in my left arm, so my left hand can get very puffy – and that feels weird. I have a sore mouth. A dry, sore mouth. A mouth so dry that I wake up in the night and have to peel my tongue away from the roof of my mouth. And nothing tastes right.

It’s hard to describe, but if you drink tea AND coffee – and like both of them – you must have experienced the strange thing – being given a mug full of nondescript brown liquid and assuming it is tea (or coffee), taking a mouthful and finding that it’s vile, and then realising it’s actually coffee (or tea). At the moment, everything I eat is coffee when I was expecting tea, or tea when I was expecting coffee.

It’s really quite depressing, because I love food. And I just realised that I have reacted to this by becoming almost obsessional about food. This cycle I have read The Gastronomical Me by M F K Fisher (and had hard-core nostalgic fantasies about provinical France), Appetite by Nigel Slater, M K F Fisher again (With Bold Knife and Fork), and Towpath – which is a book of recipes and stories from a canalside cafe in London that I have, and probably will never visit. I have noted down recipes and planned meals and looked up local restaurants, and made a big lasagne for my wider family, all the while knowing that nothing will taste the way that I imagine it will, or even the way it smells.

My mouth is sore right now. I ate strawberries last night and had to push through the pain to do it. Generally, I can manage frozen fruit (grapes, blueberries, little cubes of melon, a bag of pineapple chunks), but fresh fruit is hard. Savoury is good. Salt is salt is salt. Nice and predictable. Bitter is cranked up to the max – and I generally like a bitter drink. Tea is awful. Coffee, so weak it’s an embarrassment, and mint tea are my hot drinks. Or just a cup of hot water, which is easier to drink than cold water.

And then, in the last three or four days before the cycle re-starts, I guzzle – coffee, cake, G&T, a glass of wine (though I’m now a white drinker, not a red drinker), all the veggie stuff that gives me stomach cramps in week two, spices, everything. Everything.

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100 things I love 23: Breakfast

I am one of those people who always wakes up hungry. Obviously there were times in the dim and distant past when I maybe woke up hungover and didn’t feel well enough to eat, but other than that, I NEVER skip breakfast.

Breakfast is a funny meal. It’s the most intimate meal of the day, eaten with somebody you’ve slept alongside. It’s when we’re at our most vulnerable, still cobbling ourselves together. It’s a meal where people crave familiarity.

But I don’t like cereal. I eat cornflakes on the very worst days of the chemo cycle because they have a bit of crunch and they go down easily, but other than that I wouldn’t bother with them. My standard breakfast is muesli, yoghurt, fruit, toast, tea. However, I will eat anything at breakfast. I like the strange, the exotic, the exciting.

My daughter is a bit of a breakfast girl. Brunch, maybe. She is rather partial to eggs Benedict – she’ll happily rustle some up. Coco Pops, she likes as well. We all love a breakfast buffet.

In Sri Lanka we had idlis, in southern Indai we had Kotha Parotha, in Thailand I had a kind of rice porrige with dried fish that I never learned the name of. Bring it on!

A Full English, obviously, is a wonderful thing. Ohh – a Full English with potato farls, which then becomes a Full Irish. Ohh – kedgeree!. A Continental buffet of meats and cheeses and cake – croissants – soft French bread to dip into a bowl of hot chocolate – pastries. Churros. Cold pizza. Honestly.

My mum used to do a proper Easter breakfast. Hot cross buns, dyed boiled eggs, an array of chocolate eggs. We used to spend Easter with my godmother and her family, and the pair of them once stayed up most of the night hand-making hot cross buns.

You know, I even like a hospital breakfast – a tiny bowl of cereal, some bendy toast and a plastic packet of marmalade.

Just after my first diagnosis we celebrated my husband’s 50th. I decided I had to delegate madly and unashamedly. We’d booked a place that had a few cottages and I appointed a breakfast monitor for each one. It was amazing what people brought – I particularly remember Sarah’s home-made muffins. I felt very loved that weekend.

Porridge. I’m never completely satisfied by porridge, but I do like it. The most decadent way of eating it is with cream and golden syrup, (obviously) – clotted cream if you happen to have some by you. In the Aran Islands we stayed in a guesthouse with a flamboyant proprietor who jazzed up our porridge with spices and raisins and it was a revelation. And in Finland we ate a different porridge made from a different grain every day of the week.

So, yes, my favourite meal, I think. I mean, it’s difficult.

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