‘My wife has a quirky cancer, she is informed. There’s nothing the specialist can do’

My Apocalypse: 147 thoughts about grief: Derek O’Connor lost his wife Maeve to cancer in 2016, aged 44. This is their story

What do you need to know about my wife? Where do I begin? It’s my favourite subject, one I don’t necessarily get to pontificate upon half as much as I’d like to. People are funny that way.

Your frames of reference are entirely cinematic, the result of a life spent at the movies. Much of it in the company of my wife. Not a moment of it wasted. Afterwards, you find tremendous comfort in her Netflix queue. The last movie she watched? Dirty Rotten Scoundrels, with Steve Martin and Michael Caine.

I wrote this the day after she died, for a memorial booklet we distributed at her funeral, in the small Donegal town she came from. I can’t remember writing a word of it:

“Maeve Sweeney was born in Dungloe in 1972, and remained a very proud Dungloe woman for the rest of her days.

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“In her 44 years, she lived many, many lifetimes, and enjoyed each of them to the very fullest, be it as wife, mother, au pair, stage manager, arts administrator, actress, musician, singer, director florist, beaver leader, volunteer co-ordinator, disco dancer and all-round breath of fresh air. The role that gave her the greatest pleasure was that of mammy to Aoife, Anthony and Rory, her three wee treasures, each a beautiful and unique and creative soul that reflects the very best of Maeve, while being beautiful spirits in their own unique fashion. She loved all children, especially her beloved nieces and nephews, and they loved her right back.

“Maeve really wouldn’t want people to be sad at her passing – instead, we choose to feel incredibly lucky to have had her for as long as we did, and are thankful beyond words for all the memories that she has given us. We can keep her alive by sharing stories of her many escapades – even the unrepeatable ones. These tales are to be told over several cups of tea, preferably served with some cake. Maeve loved life. And life always went better with a wee slice of cake.

“Everywhere that Maeve went she brought positivity, passion, creativity, good humour, big hair and a can-do attitude that lifted spirits and made the darkest of days brighter.

“Remember her this way.”

A month before your wife is diagnosed with stage three bowel cancer, your friend is diagnosed with the same cancer, at the same stage. Bowel cancer is most common in men over 50, and easily treated if detected early. Our friend is in her early 30s, my wife in her early 40s.

While my wife is pregnant with our third child – our “surprise” baby, due to arrive some 13 years after the last one – she feels ill in a manner unlike her other two pregnancies. Those had their fair share of brutal moments – what pregnancies don’t? – but this is different. The pain is more pronounced. Deeper. Relentless. It doesn’t let up for nine months. She flags it up on a regular basis with her doctors, only to have it summarily dismissed as the regrettable consequences of being an older mum. After our son is born, following a labour best described as somewhat of an ordeal, the pain doesn’t go away. If anything, it gets even worse.

My wife has a quirky cancer, she is informed

One morning, she tells me that something serious is up. She knows it. As if preparing me for the road ahead. Six weeks later, we are in St Luke’s Hospital, Dublin, as she undergoes her first round of chemotherapy – the chemo has left her sore from top to toe. It is the most unnatural thing imaginable. Our newborn son is at home in Donegal with her sisters, as are our other two children, aged 13 and 18. The latter is busy preparing for the Leaving Cert. Life proceeds.

We’re careful not to disrupt the basic dynamic while my wife does her chemo, which is to be followed by surgery. All in, it’ll take a few months. We’ll be in recovery by summer. Outside the window, in the grounds of St Luke’s, time has stopped.

From the outset, she hates the battle analogy that gets rolled out every time somebody “loses their brave struggle” with cancer. It’s a process, she insists. You’re only fighting with yourself.

She gives her colostomy bag a name: Martha. This was something she always did. Personalise things. When we first met, she cycled around Dublin on an old high nelly bike she named Joseph. Until Joseph was stolen one night from the railings outside Cafe Vertigo in Portobello. She has already lived at least two lives by the time you meet her, aged 22, four months older than you, your older woman. You've never really met anyone from Donegal before. You've never really met anyone like her before. The first time you lay eyes on your future wife, the best person you ever met, she's in the distance, dancing in front of the screen of the Savoy 2 after a screening of Jane Campion's film The Piano. The film has affected her so profoundly, your mutual friend notes, that like the heroine in the film, she's unable to speak.

For the next year of treatment, you struggle with the terminology, constantly taking notes, trying to keep up, to remember everything, to share the important stuff with the people who want to know what’s happening right now. It’s like preparing for a test. You don’t want to get caught out.

You become obsessed with the film John Wick, starring Keanu Reeves as an assassin mourning the death of his wife, who goes on a murderous rampage after the Russian mob executes his dog. It's much better than I'm making it sound. No matter how outnumbered he is, no matter how hopeless the situation, John Wick never, ever gives up. There's a weird elegance to its relentless carnage.

Afterwards, on your first Valentine's Day alone in 23 years – which also happens to be the anniversary of the day you became a couple – you find yourself at a preview of John Wick: Chapter 2, alone in a packed Dublin cinema, far from home. It's not as good as the first one. It's still pretty great.

I have had an incredible life. I have experienced intense joy. I have known immense sadness. I have loved, and been loved. I am still here.

When the cancer spreads to her breast, you meet a smiling specialist who assures her not to worry, that he’ll take good care of her. He’s the best man in the region. You realise that the smile is a nervous tic, as shortly afterwards he delivers the news that as the cancer in the breast is bowel cancer, which has spread, as opposed to breast cancer, that there’s nothing he can do for her.

My wife has a quirky cancer, she is informed.

Einstein’s theory of time travel, by way of my own meagre understanding, suggests that all time is happening simultaneously – only our primitive brains view things in chronological order.

Slowly, steadily, you accumulate a little grief library, books from well-intended people intended to offer guidance and inspiration

Every moment I have spent with my wife is happening simultaneously. One moment, your heart soars as the crop-haired wild woman who calls her bike Joseph suddenly sits three seats up from you on the bus, as it proceeds down the North Circular Road. You’re both members of Dublin Youth Theatre, but you don’t know her well enough yet (or indeed possess the confidence) to take the seat beside her and strike up a conversation. The next moment, you’re together in an apartment in Echo Park, Los Angeles, pondering your next move after your options suddenly dry up after two years with your young children in the US, an exercise in “conscious living” that you later remember as The Best Time. Two weeks later, you’re all back in Donegal, and the cultural whiplash lasts a further two years. The next moment, you’re renewing your vows in a hospice in Letterkenny, and you’ve just had to inform your two teenage children, sitting in the car outside the local Costa, that yes, their Mum is going to die, because you think they know this but they don’t really know this, and because, as close as you all are, and as much as you try to be blunt about where it’s all going, you can’t quite bring yourself to believe that this is happening. I am a time traveller.

One night, a year after she has died, as you make the weary commute home from Dublin to Donegal, you pull into a service station and bump into a man you recognise as a waiter from a local cafe. You exchange pleasantries and chit-chat about the food business before he draws a little closer and exchanges a confidence: “There’s something in the water, you know.” He proceeds to list off a roll call of local men and women who have succumbed to cancer, your wife included, an abnormally large list for the tiny village you live in. It’s because of the pylons, he says. He changes topic. It’s time for you to leave Donegal.

Slowly, steadily, you accumulate a little grief library, books from well-intended people intended to offer guidance and inspiration as you navigate the waters of grief. After a while, you kind of wish people would give you happy books instead.

You compulsively make notes for a book you’ll never write, that nobody will ever read. You are suddenly the curator of the museum of your relationship together, struggling to recall the minutiae of a life lived in the details. You were never a great man for the specifics, even at the best of times. All the fun, after all, was in the digressions.

People show you pictures of happy times that you can never quite place. This gives you solace. So many happy times, that you’ve forgotten half of them.

Her phone becomes the most sacred object of all. It is the last object that connects her to a tangible reality. Everything must be backed up, and backed up again. Among her voice memos you find a long, rambling message she leaves for herself when she’s so out of her mind on morphine that she thinks there might be someone else in her hospice room. You also find the first chorus of a Christmas song that she’s making up for your baby son. His name is Rory.

Your wife is buried at a cemetery in a place called Maghery, which on the day of her funeral feels like the most beautiful place in Ireland. You have never driven in a hearse before. Your one-year-old son, sitting in your lap, insists on opening and closing the passenger door the whole drive out, leaving all the cars following behind in a perpetual state of stop-start confusion, adding a welcome air of farce to the proceedings. She would have appreciated it.

At the conclusion of the service, Daniel O'Donnell leads the assembled mourners in a rousing chorus of This Little Light Of Mine. He's a friend of her family. My wife had picked all the songs she wanted to include, adding them to a playlist on her phone entitled Great Big Yonder.

Don't throw anything out. Throw everything out.

In the months that follow her death, you overshare. You act impulsively. Irrationally. Having given up drinking – or what might better be described as “Irish drinking” – a decade earlier, you find that you have no impulse to start again. More than anything, this saves your life. You run, and run, and run.

You fill the first year. Every minute of it. Saying yes to the world. You parent. You work

After 43 years, you formulate something resembling a life philosophy. Do your job. Be good to your kids. And don't be a dick. What's more, you even develop a mantra: breakfast, lunch and dinner. Just keep feeding everybody and they'll be okay. This one is hardest to maintain. There's a certain alchemy that transforms ingredients into food that you've never quite mastered. Everyone informs you how easy this is. Everyone can kind of fuck off.

Due to a misunderstanding, my wife is informed that her cancer is inoperable by a doctor who presumes that she knows already. She doesn’t. You have popped down to Argos for 15 minutes to pick up a Christmas present on order for the kids when this happens. You get a call to come quickly, then return to find her sobbing in the car park. She informs me that she’s going to die.

David Bowie dies. For the first time, her despair is tangible. If David Bowie can’t beat cancer, after all, then who the fuck can?

The title My Apocalypse comes from a lyric by the American singer Bill Callaghan, an artist formerly known as Smog. Your wife adored his music, its simplicity, its depth, its feeling. The last piece you play for her is an instrumental by the fiddle player Colm Mac Con Iomaire, whose record And Now The Weather is your constant companion on the trips down to Dublin and back.

After her death, you seek out a friend who played piano on the record, to convey your appreciation. You go to dinner. She tells you that she’s giving up music. Her mother has passed away, and she’s utterly bereft. Music was the thing that united them, and the urge to play has disappeared. You tell her your story, and suggest that art can have the most profound effect without its creators ever realising. She informs you that Colm’s record, which is entirely instrumental, was made in the wake of profound loss – it’s in the bones of the music. You can feel it. Her day job is as a science lecturer. She details the neuroscience of grief, how mourning is the process by which the brain repairs itself. You both resolve to have dinner again, soon.

No matter what happens, you keep going, because there is no other option.

You become a creature of habit, of ritual, in place of prayer. Tea and toast at 11 every night. Cross the road at this junction. Get the bus at that stop. You listen to the same song every day for a year, over and over: Let 'Em In, by Paul McCartney and Wings. It's the kind of song you could take a bath in. You begin to believe that Wings might be a better band than The Beatles. This is the only time you may have reason to question your own sanity.

When our friend is declared cancer-free, my wife is thrilled, and insists we immediately text her a picture of her with hands raised aloft, triumphantly. She couldn’t be more thrilled. It gives her hope. When my friend and I meet now, we never speak of my wife. We mostly go to the movies, ideally to see something starring Vin Diesel. It’s understood.

You renew your vows in the hospice chapel. For years, you’ve been asking her to marry you again. The suggestion is always greeted with disdain, an insult to our ongoing union. If you could, you’d marry her every day. This time, she finally relents. She gets it. You hastily write your vows on a piece of paper, an hour beforehand. Surrounded by family and friends, she struggles to read them, her comprehension clouded by the morphine. You have your son, now a busy, carefree toddler, christened while you’re at it. Your wife has been taken into the hospice for what they describe as pain relief. The understanding is that she will be returning home in due course. Three days later, she is dead.

You fill the first year. Every minute of it. Saying yes to the world. You parent. You work. You make a concentrated effort to be a person in the world. This is what you tell everyone, even though you have no idea what that actually means. You're a writer. So you agree to write a Christmas play for a theatre in Belfast, an adaptation of Beauty And The Beast. It promptly turns into a full-blown rock opera. When it seems like the most hopeless endeavour imaginable, a friend steps in and helps you get it over the line. In the show, Beauty hasn't been able to sing a note since her mum died. Beauty's father is a workaholic. It makes the people working on the show cry. This was not the intention. You can't remember writing a word of it.

The best advice comes from an old friend of your mother, offered in a throwaway fashion over tea and toast in a Walkinstown kitchen: “There is no map.”

The aftermath of my wife’s death feels like the moment after an unexpected bomb explodes in a spy thriller. You stagger away, disorientated, the sound muffled by the ringing in your ears, amidst the carnage of what was once your life.

On the final afternoon, we sit around her bedside and watch a sequence on YouTube from one of our favourite movies, The Life Aquatic With Steve Zissou, directed by Wes Anderson. In the sequence, Bill Murray's character, a noted underwater documentarian based upon Jacques Cousteau, is accompanied by his associates as he dives to the bottom of the ocean in a cramped submarine to hunt the enormous "jaguar shark" that killed his best friend. As they go deeper and deeper, they encounter one colourful stop-motion animated creature after another. The scene is scored to a piece of music entitled Starálfur, by the Icelandic band Sigur Rós.

Finally, Zissou encounters the creature. It’s massive, overwhelming, utterly magnificent, dwarfing their tiny craft. He stares at it and begins to weep, as each crew member places a hand on his shoulders. It still makes you cry. Every damn time.

You still can’t quite believe that you got away with it. That you met the love of your life, and you didn’t mess it up.

Her car, her beloved, beaten-up car, dies a week before she does, a lonely, undignified passing on an anonymous byroad outside of Strabane. A year later, you sell it to the local garage for scrap, for a hundred quid. You hastily fill a bag with detritus, including a messy pile of the mixtapes made for her when you first met, recorded from vinyl and other tapes, with over-elaborate labels and hand-crafted covers, keen as you were to communicate your indecent intentions nonchalantly. Made with care. Made with love. Clearing it out is the saddest thing you’ll ever do.

Afterwards, death changes. Anthony Bourdain dies, by his own hand, and it's tragic. Agreed. Only 61? So young. Not really. Like Jason Robards says in Paul Thomas Anderson's Magnolia, life isn't short, it's long. Everything is temporary. Everything. And as long as you accept that, you'll probably be okay. Afterwards, you only ever really cry at the movies. And that's okay, too.

The mission becomes clearer. Go. Get out alive. And keep going. After 18 years, you move back to Dublin. A move necessitated by work, which keeps the wheels on the wagon. Another of those handy expressions you reel off when required to elaborate upon your reasoning. You don’t know anybody else who has done what you are doing. So you make it all up as you go along. Why move back to Dublin? Because it just feels like such a good time, what with the property prices being so agreeable and whatnot. A certain number of people nod, blankly, at that one. They don’t realise that you’re joking. That what you’re doing is insane. Or maybe they’re just not listening.

In the months that follow, and the years that follow, first your father loses his mind, to alcohol-induced brain damage, and then your mother loses hers, to grief, then to something the doctors are still trying to figure out. You try to talk about your wife at any and every given opportunity. You experience the most extraordinary kindness. Some people don't show up. Others are there for you in a manner you can only hope to emulate one day. Sometimes, you feel all the love in the world. There is magic.

Jeffrey Lewis is a singer-songwriter from New York City, and a stalwart of what they called the "anti-folk" movement, a short-lived wave of lo-fi acoustic troubadours who enjoyed their moment in the spotlight earlier on this century, most notably The Moldy Peaches. But I digress. Truthfully, Lewis belongs to an older tradition, channelling the subversive East Village sound that goes all the way back to 1960s cult legends like The Fugs and The Holy Modal Rounders. When we lived in New York, his song The East River became the designated soundtrack to our endless ramblings through the streets of Manhattan, our adventure in conscious living, every day an adventure filled with unexpected delights at every turn. We went for a year, stayed for two, and packed in five years' worth of experience. The Best Time.

Three months before my wife dies, Lewis announces a show at our local arts centre, a place I had once been assistant manager of, some years previously – a time of frequent booziness and wanton hi-jinx on both our parts. Now, here she was, too ill to attend the concert. I take what can only be described as a notion and reach out to Jeffrey Lewis, via email, feeling like Phillip Seymour Hoffman in Paul Thomas Anderson's Magnolia (there's that movie again) – this is the part where Lewis, anti-folk bard of the East Village, comes to a modest semi-detached rental on an anonymous wee estate in northwest Donegal, and plays The East Village for my beautiful wife. Word comes back. Jeff is game. And it's all going to be a surprise.

The only thing was, I'm not going to be there, having started the job in Dublin that we agonised over my taking, the job that would provide stability after years of maddening, deadening financial instability. The freelance life. So it is all arranged long-distance. She is to be home at a certain hour, because she has to take delivery of an unspecified thing – the only issue being that she really hates surprises. So the jig is up before it begins, with my wife, irate, on the other end of the phone, demanding to know what is going on. As ever, she has no truck with my messing. I confess all, at which point she softens, albeit ever so slightly. The general air is still one of mild inconvenience. Months of radiation has left her bruised, battered and generally worn out, never mind my newly enforced absence five days a week at a time when my presence is needed more than ever. What the fuck were we thinking?

Apparently, the first thing Lewis did upon arrival was express surprise at how healthy she looks. He is expecting a sick person. He's right to be somewhat confused. The only sign of any abnormality is my wife's tightly-cropped black hair – it suggests more of a bold fashion statement than a women suffering from stage four bowel cancer. I see pictures afterwards – she looks radiant, delighted – Jeffrey Lewis is playing at our house, at our house. He settles into a seat in our kitchen, nursing a cup of popcorn tea – we had bought a box months earlier thinking it sounded fantastic, then discovered it tasted foul, and consigned it to the far reaches of the cupboard until the day it finally served its purpose – to be drunk by an anti-folk legend.

He explains to your wife how he rarely plays The East River, the first track on his debut album (entitled The Last Time I Did Acid I Went Insane) a slice of juvenilia consigned to the nether reaches of a formidable, ever-expanding back catalogue that sees him, at one juncture, record an entire album of acoustic versions of songs by hardcore punk anarchists Crass. And then he proceeds to play it for her, to play The East River. And it's magnificent.

Afterwards, your children inform you that she was glowing. That all she talked about was you, and how much she wished you could have been there.

Why the need to overshare? This bit is important. Because I feel the urge to tell the world, to shout it to the rooftops, that she was here. They say a person dies a second time if you don't say their name. Her name was Maeve. And she was the best. Some woman for one woman.

When you were a child, you lived in the same house, number 147 Limekiln Green, until your early 20s. The house is still there, but the address changed decades ago. 147 is also the maximum break you can achieve in snooker. Which is ironic, considering you are well and truly snookered. Your own children have lived in at least eight different houses. They consider their grandparents’ house in Donegal their true home. Right now, in a rented house in Crumlin, we’re one move from home. Or at least that’s the plan.

Before she died, my wife – my beautiful wife – found transcendence in the mundane tasks that she was still able to execute. Putting the washing out on the line became her daily ritual. As long as she could complete that one simple task, she insisted, each day still had a purpose. Once the washing was hung, she always took a moment to congratulate herself: "Good girl, Maeve."

"Someone's knockin' at the door
Somebody's ringin' the bell
Someone's knockin' at the door
Somebody's ringin' the bell
Do me a favour
Open the door
And let 'em in."

Derek O’Connor is a writer, film-maker and RTÉ Culture Editor