New Project.

I’ve been referred to Palliative Care.

Ouch, ouch, ouch. I know my chemotherapy is palliative, we’ve been through that, but actually referred to Palliative Care? It felt like another step up the staircase.

It’s a bit weird, because I’m a huge believer in palliative care. I don’t want to die bald, I don’t want to still be chasing a few more weeks, a few more days. I want to die well. And I’ve had two meetings with the PC consultant, and she’s lovely, and it’s really holistic (and there’s part of me thinking “maybe that’s what I should have done” careerwise, only I didn’t even know it was a thing when I was starting out).

Anyhow, as part of the whole thing, the PC consultant has suggested that I keep a notebook for each child and jot down memories and thoughts for them. And a notebook about what I want in terms of terminal care, maybe funeral, etc. Ooof.

So, I got some notebooks. I love a good notebook – I got some personalised ones from Etsy. https://www.etsy.com/uk/shop/PatRayDesigns,if you’re interested. I got to choose the colour and the pattern and the words. I know I’m terminal, but I can still enjoy a good notebook.

I’ve made a start. It’s hard in some ways. I’ve just put down the story I always said I’d tell at my son’s wedding. It’s a good story. Well, who knows? I might be there. I might not. At least somebody will get to share it now.

These notebooks are putting me in a place where past and future clatter together. I have 3 sisters-in-law who lost their mums very young. They really missed the day to day memory stuff when they had their own children – “Oh, I remember that you used to hate having your nappy changed…your sister wouldn’t eat banana…you always cried before you slept”. Stuff that you take for granted. I want to put some of those memories in, just in case they come in handy.

I’m thinking a lot about how this whole shitty thing has impacted on them. They’ve had this shadow sitting over the family since they were 6 and 4. They can’t remember a time without it. It has made me less predictable than I would otherwise have been. There were times when I disappeared. This is the thing that they will take to therapy with them (if they end up needing therapy). On the other hand, maybe they are more caring, more resilient, more understanding of the fact that everybody carries a bag of pain around with them? Who knows?

Anyway, I don’t know if you’ve done anything like this? I think it will be helpful – for all of us.

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100 things I love 16: post

Real post. Analogue. Things touched by human hands.

We neglect so many senses. Sight has become primary, but touch, smell, taste – they are much more primal. We can see in the womb, I guess, but there’s nothing to see. I can’t imagine even light penetrates all those layers. But we can hear, we can taste, we can feel.

Anyway, post. When my parents had a clear out a few years ago, they gave me a bag full of old letters. We used to write letters! Because when I was at college, you had to queue for the phone, and you had to collect up a load of 10p pieces to make a meaningful phone call. And you might not have a phone number, but you did have an address. And nobody had a computer. So there were letters there from friends, from admirers, from boyfriends. And it was lovely to read them, and to relive the thrill of getting them.

I have a friend in Germany who I correspond with. I’m much better at having a penfriend now than I was as a child (I was rubbish. Sorry). It’s so exciting to get an envelope with foreign stamps on it – and she decorates things beautifully. It feels like a real connection (and you know I love Twitter, but this is an extra dimension).

I like getting Christmas cards. I know it’s not ecologically friendly, but I think it’s psychologically friendly. It’s a tangible connection. We send a lot of Christmas cards, we write personal notes in them. I don’t even mind a round robin letter – even though my kids are obviously much more wonderful than yours, but I don’t need to let you know. Birthday cards – I collect them up and hide them behind a noticeboard in the kitchen so that the birthday person has a nice little surprise pile on the actual day. I throw out cards regretfully, but I’m a bit of a hoarder, and I know that if you keep something for any length of time it acquires some kind of crazy value just from being around. But I have a lot of “bookmarks” that fold down the middle.

I even love mail order. I’m such a child – it’s a thrill to get a parcel, even when it’s something you’ve ordered. Through lockdown, it managed to be a luxury AND a necessity.

I send things, too. I send my daughter postcards. I’m doing a long slow poetry postcard project. I like the idea that someone else gets a little boost from their post, gets to hold something in their hands, gets to open it. Maybe if it’s a parcel they turn it over to see if there’s a clue. If it’s an envelope, they have to choose how to tear it. They can save it for later, or open it right now by the front door. It’s a tiny thrill, and everybody needs one of those from time to time.

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100 things I love 15: lying in bed with my husband doing the crossword

For a start, I love my husband. That helps. And, then again, I love our bed. It’s enormous – wide enough to fit an additional small child (oh, but that’s a long time ago…) – maybe even two. We’ve invested in wool-filled duvet, we’ve established our optimum pillow state. It’s a warm and comforting place to be. I like it there.

I particularly like it in winter, when we got to bed early with the crossword and a couple of books. The Guardian crossword, the Saturday prize cryptic crossword, that’s our crossword. Hi, Brendan! Hi, Vlad! Hi, Paul! We see you, we know you.

Anyway, there we are, in bed, on a dark December evening, heads together, puzzling over the puzzle. Or on a wet Sunday in February, hopping back into a warm bed with a nice cup of tea and the newspaper.

What do I like, then? There’s a sense of purpose.

It’s odd that these manufactured pastimes give a sense of purpose. Jigsaws are the same. It’s a picture that’s been cut up for you to put back together. It’s fundamentally pointless. Similarly, this is a word-game that somebody has put together, and yet it’s driving. I don’t get the same thing from Sudoku, I get a bit of the hit from Wordle, but a cryptic crossword is so fulfilling. I’ve always understood bird-watching more than train-spotting, but I’m a sucker for a satisfying anagram.

What else? It leads to conversation. To looking up the different kinds of silk, Google-mapping obscure villages in Scotland. Is this the definition? Or this? What exactly are the rules here? It leads to celebration. The quiet smug celebration of being right (and I do like a bit of smug) – but also celebrating each other. I admire his flashes of inspiration, he admires my ability to take a word apart and put it back together. I admire his immense general knowledge, he admires my knowledge of Yiddish and the carriages mentioned by Jane Austen.

I can measure my recovery from chemo in my capacity to do the crossword. It’s frustrating to stare at a bunch of letters with no idea how to even start making a word out of them – but it’s also strangely comforting to know that this is physiological, and it will pass. My inability to think clearly is kind of measurable. And the pleasure as it lifts, and I can feel my neurones sparking again!

I’m not going to boast, but we won the prize in May. I’m not going to boast, but I am going to sit here being just a little bit smug. Quietly, obviously. Smug is always quiet.

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100 things I love 14: Twitter (I know)

I tried Twitter years ago, but it didn’t really stick. I didn’t get it. This time round, I took to it with a purpose – mainly poetry connections. And then I left work and Covid happened, and Twitter spread to fill the place that work had left behind. Not fully, obviously, but those inconsequential chats and slightly lame jokes transferred from the kitchen area to Twitter very easily. It turns out that’s how you make connections. I have an international feed – USA, Germany, New Zealand, India, Ireland. I see beautiful birds and Middle Eastern flowers. I see vintage dresses and Star Wars GIFS. I get little lifts.

I curate. Oh, I curate madly. I’m after bursts of pleasure, I’m after people reaching out to comfort, I’m after moments of beauty. A couple of times I’ve asked for a boost, and I’ve been boosted (thank you). And I’ve boosted others. Twitter has spilled over into real life – I’ve had post-cards and Zoom calls. I’ve found workshops and poetry readings and projects. If you’re reading this because you found the Twitter link – thank you! You’ve enriched my life.

Yeah, bullshit. Yeah, arguments. Yeah, politics. Hard to avoid and (oh so) hard to resist. But, you know, I get that in real life, too. It’s not nice (though sometimes it’s fun) – but, you know what, I’ve had some interesting conversations with people with differing points of view, and it’s been OK. It would be nice,obviously, if everybody agreed with me, but even I realise that’s not realistic.

A mixed bag, then, but overall, a love. I’m a bit worried at the moment that everybody I enjoy interacting with is going to leave Twitter because of recent ownership developments. That would be a loss. Those little sparks of beauty and kindness are so lovely. I’d hate to lose them.

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100 things I love 13: tea

I love tea. I love tea so much that a lot of people probably think I’m a coffee drinker. You see, I never drank tea at work. Hot water from a geyser? No thank you – it never tastes right – I think it must lose oxygen or something. And teabags of unknown provenance? Made in a mug? Probably by somebody who puts the milk in before they mash the bag against the side of the cup. No, no no!

I don’t drink tea in cafes very often. I will make an exception for Earl Grey if I’m feeling fancy.

Yes, I’m fussy.

I like my tea made in a teapot. I like the teapot to be warmed in advance. I like the tea to be stirred and then left under a tea-cosy for three to five minutes. Don’t bloody mash the tea-bag.

And I drink a lot of tea. So much tea, it’s hard to pick out memories to go with it. It would be like collecting memories of breathing or putting on socks.

My earliest tea memory is from Scotland. I must have been about 10, I was just starting to drink tea. I drank it with sugar, but this time we were out in the snow and somebody had forgotten the sugar. I drank my tea without it – it actually tasted better! No bitter aftertaste. I’ve only had sugar in tea once since then – I had news of a friend’s death when I was at the hairdressers, and they insisted on making me strong, sweet tea. Bizarrely, it helped.

In India, we liked to watch the chai-wallahs. We have a photo somewhere of a chai-wallah pouring hot, sweet spicy tea from up high into little clay cups. I always pour the water onto the tea from high up – partly for the pleasure of it, partly because I think it gets more oxygen in.

When we lived in Yorkshire, we drank Yorkshire Tea. Now my daughter’s up north, that’s what she drinks. Down here in Devon, we drink Miles tea. We bring a box of Barry’s home when we visit Ireland.

My father-in-law was a careful tea-maker. He used a metal pot, warmed, and then left partly on the electric ring on a very low heat. Tea was served after every meal, but there was no casual tea drinking. A biscuite was served in the saucer.

Just to let you know, dunking is evil. It ruins the tea AND the biscuit. Why would you do it?

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100 Things I love 12: having my daughter do my make-up

I used to wear make-up regularly. The first thing I tried was a shimmery, bright blue eye-liner. Very ABBA. I was out with friends, and bumped into my mum in the arcade in town. I was so embarrassed. Make-up seemed like a Big Deal at that point. My mother was probably more upset by the fact that it was very bright, very blue, very shimmery and very badly applied than by the fact that I was wearing it.

I moved on from that. Make-up was banned at school. The biology teacher kept a jar of vaseline so that girls who had “not removed it last night” could remove it in front of her. But outside school – it was fun! I was 17! The punky end of the New Romantic spectrum (in a muted, small-town, middle-class way – don’t imagine full on Steve Strange). but black eyeliner, orange eye-shadow, gold lipstick. I wanted to look sharp and slightly decadent.

At uni, I wore eyeliner everyday. And blusher. In stripes. I looked like a very beautiful badger. And then, one day I realised that I didn’t recognise myself without make-up. I looked a bit rough without it. So I stopped wearing it, decided to reclaim my face. Make-up became a going out thing.

And then life, work, travelling. Make-up became an irrelevance.

For the last few years, I’ve been a special occasion maker-upper. Every once in a while I would feel the urge to perk myself up – “make the most of myself” – and invest in a “make-over kit”. I’d last 3 or 4 days, and then it would all be consigned to a fairly grim and grubby make-up bag, and I’d be back to making up to go out only.

My daughter is a digital native. She watches TikTok and Instagram. She Snapchats. She takes endless selfies (I get it – I used to spend a lot of time looking at my reflection when I was her age. Not out of vanity, more out of fascination – working out an identity). She watches YouTube tutorials on make-up (maybe she doesn’t any more…?). She knows her way around contouring. She has a collection of make-up brushes. She became my make-up artist a few years ago.

It’s great.

She’s really good at it. Much better than I am. More practice, and she takes it much more seriously.

I love watching her concentrate. It reminds me of when she was little and used to do craft stuff, or dive deep into a book. I love watching people work.

I love the fact that she has a skill that I don’t. It’s a skill I could acquire, I guess, if I wanted to – though she has a good eye for colour and is naturally better with her hands than I am. I don’t particularly want that skill, but I appreciate it in her.

I enjoy the fact that she’s tending to me. It’s kind, it’s close. She’s looking after me. It’s wonderful to get that tenderness from your child.

This is a loss. At Christmas she offered to do my make-up and I had to say no. My skin is so sensitive now (thank you, chemo) and my eyes water so much. I couldn’t wear anything round my eyes at all. For a moment she looked really deflated, but she picked herself up. Looking after me again. It’s wonderful to get that tenderness from your child.

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100 things I love: 11 – gannets

When I say I love gannets, I mean I love a memory of standing on a cliff top in the west of Ireland – West Cork, probably – looking out to sea. We could see a flurry of gannets, way out, and we could hear them – the boom of them hitting the water. There were dozens of them, rising and diving. I’m not sure I’ve seen them anywhere else. For me, they are a quintessential part of the west of Ireland.

I haven’t seen them up close, except in pictures. I love the shape they make – so streamlined – an arrow, a bomb, a bullet, a rocket. Aerodynamic, and designed to pierce. And then their bodies are so white, and their eyes are a mad ice blue, with their black eyeliner and their black wing tips and that 80s blusher thing. There is nothing sleeker or sharper. Nothing pierces that water quite like them.

We took a boat trip to the Skelligs years ago – pre children. We were staying in a little cottage on the Kerry border. The farmer who owned the cottage came over one evening and sat in near-silence, just to be polite. We bought crab claws and broke them with rocks because there wasn’t any other way of getting into the meat. Anyway, we took a boat trip to the Skelligs, and were told we’d get a refund if we didn’t land. We landed (just – looking back it was pretty dangerous, but we were young and foolish) – and were almost immediately called back. Claudi wasn’t having any of it. He had the most terrifying eyebrows. We got a refund. Anyhow, the Skelligs were covered in guano and gannets – a cloud of gannets, like a cartoon of birds flying round the head of somebody who’s been knocked out.

I love gannets because they are sculpted – carved from marble, not feathers. They are wild and fierce and unknowable. I love them because they are beautiful.

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100 things I love 10: Christmas pudding.

I seem to have a lot of food items on my list. I’m not sure why that is. I do love food, and the fking chemo has affected my tastebuds quite significantly – so that I anticipate something will taste a certain way and then it just…doesn’t. Bitter is cranked up to the max, lots of things taste weird. Leeks and spring onions are postively unpleasant. There’s an undercurrent of soap. Maybe that’s why I’m thinking about food a lot.

So. Christmas pudding. This comes with layers and layers of associations, because Christmas pudding IS Christmas.

First, my Mum’s Christmas puddings. She made them and kept them. I want to say she made them three at a time, and then we had them for three years running, but how could I know that? Served with brandy butter. Leftovers fried up on Boxing Day. Dark and delicious.

The big Christmas pudding of my childhood, though, was Auntie Nellie’s Christmas pudding. My granny was a cook. A proper cook – she worked for Johnson and Johnson, and she cooked for the directors’ canteen. I suspect it was just very good quality home cooking – nothing fancy. Granny made the best pastry, her meat and potato pie was incredible, her almond slice, her mince pies! But I remember her at Brooklands in Barnsley, complimenting the waiter on the blandness of the pate. She rejected a salad garnish as if it was poison. Vegetables were not really her forte.

Anyhow, Granny was a generous feeder, lavish with cheese and cream and meat. Nellie was her step-sister, and they were very close. Granny had been handing ingredients for the Pudding over to Nellie for months – fat raisins, plump sultanas (I’m wondering now if she got them cheap from work?). She told us all how wonderful the Pudding was going to be. Nellie had told her, got her all full of anticipation – and she passed that on to the rest of us.

The Pudding was basically pudding. A sponge dotted with dried fruit. A Christmas pudding should be a bowl shaped lump of dried fruit cemented together with a pudding-like substance. Not this sad, steamed sponge.

My Grandad was the mildest, sweetest man you could meet. He expressed his disgust. Nobody was expecting that.

My mother-in-law, Colette, probably made the best Christmas pudding of anyone. It was just magnificent. It’s a good thing it was amazing, because on Stephen’s Day (yes, we’re in Ireland now), when everybody else in Christendom is going “yay, leftovers!”, she would get up and cook a second full Christmas dinner. Yes. Turkey. Ham. Roasties. Christmas pudding. Hers was served with lightly whipped, lightly sweetened cream. There were seven children in the family, so Christmases in Dublin were busy. The doors between the sitting room and the dining room were opened, we’d be crowded along the kitchen table, the dining table, and probably a card table, with Colette trying to clear the plates at one end of the table before the other end had finished being served.

My husband makes the puddings now – to his Mum’s recipe. He used to faithfully keep up his mother’s tradition of telling us the pudding isn’t as good as last year’s. I think we’ve cured him of that. In a merging of traditions, we serve it with cream AND brandy butter. The recipe makes three – a large, a medium and a small pudding – like the three bears. There was one year when we kept one for the following Christmas, took the greaseproof paper off to check it and found it had turned to dust, like a vampire exposed to sunlight. We’ve never really kept one since. We usually eat a second in January, and then just randomly decide that the weather is miserable, and we deserve a Christmas pudding, or that friends are coming over and it’s a good excuse for it.

I have Colette’s recipe written out by her in my recipe folder. I’ve written out the recipe myself in two different notebooks. We are not losing that recipe.

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100 things I love – reflection

This has been a surprisingly powerful practice for me. Firstly, there’s the pleasure in writing about something I love. How indulgent!

Secondly, the memory string. I love things because of their associations. Everything I’ve chosen has either been something connected to pleasure right now, or something that brings memories trailing after it. I do a piece of free-writing every day, and then follow it up with a blog post – expanding, editing, explaining – so I get double the memory hit and double the pleasure.

The third thing that has been really important is that it’s given me a chance to review my life. I have had a rich, joyful, privileged life. I have been lucky, but I’ve also made good choices; I’ve had goals and worked towards them, and achieved them; I’ve been brave.

That has been so hard to hold onto. Over the last couple of years, I’ve slipped into the pattern of thinking of myself as unlucky. I’ve struggled to find goals. I’ve felt anxious and afraid. To see my life as a positive thing has been so precious, so important. I’m grateful that I’ve given myself that opportunity.

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100 Things I Love 9: oatcakes

I’m talking about Staffordshire oatcakes – soft, savoury, with a slight hint of sourness. Not the hard little Scottish oatcakes (though there’s not much nicer with a bit of cheese and chutney). No, a Staffordshire oatcake is a very different thing.

My dad is from Stoke, so the oatcake is part of my childhood – and yet, not quite. It was a treat you got when we visited Granny and Grandad. We took dozen home with us as well.

The nearest one to Granny’s was down the backs. The back streets, cobbled – those cobbles worn by so many feet. You’d come back clutching a still-warm paper parcel. If you were lucky, you’d had to wait while there were cooked, on a big slanting griddle – ladlefuls of batter swirled into perfect circles. And you’d have one to eat on the way home slightly crisp, soft on the inside. Hot.

They are a big part of our family communication. I gave my dad and my brother oatcake mix for Christmas. My brother sent me a boxful – a massive boxful, because they freeze really well – for my birthday a couple of years ago. My brother ALWAYS has a packet in the fridge (or maybe he gets them in when I’m visiting?). My ex-sister-in-law gave my brother a framed copy of a poem I’d written about them for Christmas. They are part of our love language, part of our story, part of our identity. That’s a lot for an oaty pancake to carry, but it carries it well.

I made some from scratch the other day. It’s not often you recreate a childhood favourite – and a commercial childhood favourite, at that – and make something that tastes exactly right and completely recognisable. My own children like them, but don’t have that emotional attachment to them that I have. My friend from Stoke, Bom, loves them – we’ve sat in his living room at 1am gorging on oatcakes.

They are hard to get outside of Stoke (and not so easy in Stoke, now). You can get tortillas everywhere, but oatcakes? No. Sainsbury’s do them – they’re OK – not as thinly delicate as I remember, not as complexly textured. Mine are better.

Anyway, you’d bring them back to Granny’s, and she’d be waiting. Fried bacon in the pan. Not grilled, because under the grill there was a pyrex dish of melted cheese. Maybe a sausage. You’d scoop cheese out of that bowl, spoon it onto the oatcake, add a rasher, roll it up. Maybe an egg on the side, for dipping. Oh, perfection.

They’re a working man’s food – cheap, filling, easy to eat on the go. That’s not how people eat these days, so the old hole in the wall shops are all gone. But they’re an iconic foodstuff. The madeleines of the Potteries.

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