When routine tests revealed that Will Pavia’s 76-year-old father, Michael, had terminal cancer, hospital doctors told him he wasn’t allowed to go home. This is what Will and his family did next.
“When I lose my marbles,” my father would say every now and then, usually after a large dinner, “take me behind the chicken shed and give me both barrels. It’s all planned. In my desk drawer you’ll find an envelope. It contains £1000. Give that to Dave.”
Dave? His friend and handyman, who came once a week to do the garden?
“Yes. He’ll sort out the house. Put your mother in a nursing home in Yorkshire.”
This made a sort of sense. She is from Yorkshire. We should put her back there.
“What?” said my mother. “I don’t want to go to Yorkshire.”
After my sister Kate married a doctor named Piers, he became part of the plan too. “Piers is going to tread on the pipe,” Dad would say. Or Piers would use a pillow, or he would trip and unplug the wire, or run him over with a tractor. And so on.
In the end something happens that is quite unplanned. A chicken flies into Dad’s arm and breaks it.
Mum is not home so a neighbour drives Dad to the hospital. “I can’t believe that effing chicken,” he says in the car. We can’t believe it either. A swan, sure, we’ve heard of that. But a chicken?
The break is in an awkward place and requires surgery, and in the process tests reveal cancerous lesions in Dad’s lungs, his liver, kidney and pancreas. Possibly his bowels too. There’s a wait of several weeks to see an oncologist, but then the arm seems to be infected and they can’t do anything until that is sorted. We’re sent to Accident & Emergency where Dad is parked in a corridor with a gaggle of fellow cancer patients who trade war stories about chemo.
A few months back I heard Richard E Grant on a podcast saying how proud he was that he got his wife home at the end of her life. I didn't realise it was a challenge until we were in a similar place with my Dad. I've written about how it was for us https://t.co/MI9jXGnG0O
— Will Pavia (@willpavia) May 20, 2023
“I’d love a bit of chemo,” Dad says. He sounds like the dungeon dweller in the Monty Python sketch who sees another prisoner being spat on and shouts, “Lucky bastard!”
They put him on an orthopaedic ward, because of the broken arm. Then, after a bad night in which he nearly dies, he’s given a room on a cancer ward. Now he’s on oxygen and can barely get out of bed. It’s like that old Mike Tyson line: everyone has a plan until they get punched in the mouth.
This is when my brother-in-law Piers starts saying we need a new plan, to get him home. If it came to it, he’d want to die at home, wouldn’t he, Piers asks. In his own bedroom, with a view of his sheep in the field and my brother, Chris, at his side.
Chris has Down’s syndrome. He and Dad are very close, but he’s afraid of hospitals. Once we got him in to see Dad but he was so upset afterwards that we wondered if it was worth it. Chris prefers to stay away and insist that Dad will get better. “We just need to think positive,” he says.
We are all doing this, a bit. We all hope he will get over the infections and receive chemo or immunotherapy, or something.
“Yes, of course,” Piers says. But Piers has seen the scans and is a doctor. “Just in case that doesn’t happen, it’s a good idea to get ready now.” Usually, to bring someone home, you need to arrange home care and a hospital bed. Piers explains that sometimes people want to go home but die in hospital because the paperwork is still being finished. Or because it’s the weekend. And today’s Friday. “Let’s get it started before the weekend,” he suggests.
He says all this quite tactfully. It’s only later that I see it was the first step in an operation that I’ve come to think of as the great escape. Dad is not at all cooperative when I mention it to him that morning. “We’re just going to get the paperwork started,” I say.
“You will do no such thing,” he replies. “We’ve just been given this room.”
The room has an en suite bathroom and, although he can no longer get there, all his stuff is laid out on a shelf beneath the mirror: his shaving equipment, his bottle of Aramis. It’s oddly reassuring to see it. The wall in front of his bed is painted with a large mural of the seashore. He can lie there pretending he’s on a beach.
Dad credits a nurse named Edie for getting him the room after he nearly died. She also gave Mum a piece of paper that allowed her to park for free in the car park. It felt as if we had become gold-card members of the hospital.
“And then I say I want to leave?” Dad asks. This would be an insult to the hospital, to the NHS, to the blessed memory of Winston Churchill. “How does it look?” he keeps saying.
‘Are you lovely Michael’s son?’
Dad is 76 and has always been good at adapting to new environments and befriending everyone in them. He would have done very well in prison. Now that he is sick he is struggling and we catch him making a list of the names of all the doctors, nurses and orderlies who come into his room, fearful he will forget one. But the old magic is still there.
“Are you lovely Michael’s son?” a nurse asks as I sign in one morning. “Are you as lovely as him?”
Dad says we must do nothing to suggest that he isn’t absolutely delighted to be there. I put Piers on the phone and Dad berates him too. Two of Dad’s best friends, a dairy farmer named Robin Askew and his son Tom, are visiting and get a bit of a telling-off as well. “That’s the Mike I know and love,” Robin says.
It’s just like him, it’s true. Piers says it is a reason to be cheerful. Perhaps he is getting better? He’s on great form again on Sunday when my cousin, Nicola, visits. He tells her about nearly dying. “Could have saved you a trip,” he says.
She is not sure what to say to this.
“The wonderful thing is now I can get my affairs in order,” he continues. But he has not done his taxes. “I spent too much bloody time on holiday!” he exclaims. “I should have spent more time doing my accounts.”
Dad used to be an accountant and he always hoped that one of his children would follow in his footsteps. None of us did. Possibly this explains why he felt obliged to make plans for his death. He’s a tidy man; he doesn’t like loose ends. Kate became a lawyer, which is helpful. Chris is a contemporary dancer and Lucy and I are both journalists. What could we do? Write about it?
Checkmate
Two more days pass in which we wonder if Dad is getting better. Then the oncologist comes and tells him that he is not. The infections are getting worse and in fact the cancer is causing them. It’s checkmate.
That’s the gist of it, though she doesn’t quite spell it out. This has started to frustrate my father. She sounds like a politician who is trying to avoid talking about a scandal. “I’m increasingly thinking we are not going to win this one,” she says.
Dad asks if he could speak to another oncologist. He names one he met at the hospital one night, who put things more plainly.
“I thought I was your oncologist,” she says.
There’s an awkward silence. No one knows where to look. I ask her exactly how long he has left. “I think it could be days,” she says.
To be fair to her, this is very clear. I had thought weeks, maybe months.
“Are you comfortable?” she asks Dad.
“I’m as comfortable as I’m ever going to be, knowing the old sword is hanging over me,” he replies. We’re all slightly stunned. Suddenly I see why Piers was so worried about the paperwork. He chimes in now and asks about bringing Dad home.
“There are certain things that can only really be done in a hospital environment,” she says. At home you might get four litres of oxygen a minute. But Dad is on 15.
“What if we just stuck him in the car?” Piers asks.
She smiles and shakes her head.
When she leaves Piers springs into action. He used to be an army doctor and there’s something slightly military in his bearing now as he plots how we might still get Dad out. He finds a company called Air Liquide, an industrial supplier of oxygen. He calls Macmillan Cancer Support; they have a team not far from where my parents live. He finds a company that arranges for home nurses: a formidable manager there named Lynn Rogers assures him that she is quite used to hospitals saying patients must not leave. “We’ll get him out,” she says.
“Also,” Piers adds, “we should get Chris.”
My brother comes in and sits stiffly at Dad’s bedside, his eyes flickering about the room like an allergic man’s inside a wasp’s nest.
“Thank you for looking after us all these years, me and Mum,” Dad says. Chris is 41. He moved out last year; before that he lived with them. “All these years you’ve been taking care of us,” Dad says. He pauses. “I mean, sometimes it has gone the other way.”
Chris closes his eyes, squeezing them shut, and opens them again.
The saddest sound in the world
Then a palliative care doctor arrives. Piers had asked him, after the thing with the oncologist, to give Dad a very plain account of his situation.
“We think you are dying,” the doctor says, standing at the end of Dad’s bed wearing blue scrubs, the sea mural of breaking waves at his back. “We think you might not make it if you try to go home.”
Dad mentions his very nice room. “We won’t get this again,” Dad says. “If we have to come back.”
“Mike,” Piers says, “if we leave we’re not coming back.”
At this there is a wail from beside the bed. It is Chris. Chris does not want a plain account of the situation. It is the last thing he wants. But we had forgotten he was there. He begins to sob convulsively. It’s the most heartbreaking sound in the world.
I take him downstairs to the M&S convenience store and buy him a bottle of freshly squeezed orange juice. “No bits,” he says, between sobs. “Can you get two?”
It’s a two-orange-juice situation. We share a table in the Costa with a man who is filling out some paperwork, Chris still crying and occasionally taking great gulps of juice.
Mum is now living in the hospital and sleeping on a foldout bed. Her great struggle is trying to feed Dad. One of his peculiarities is an insistence on volcanically hot food. The hospital delivers three square meals a day, usually when he’s asleep: huge, stodgy affairs that go cold before we can wake him. You’re not allowed to reheat them. He’s not allowed alcohol either, a rule that now seems so pointless that we start to break it.
Driving to the hospital that night with some spare clothes for Mum, I stop at their local pub and order two pints of bitter. Outside, beneath a night sky full of stars, I pour them into two flasks. Then I bring the empties back inside to the barmaid who looks at me impressed, or possibly alarmed. In hospital, Dad has a few illicit sips.
“Macmillan are now fully aware,” Piers says the next morning on the WhatsApp group we siblings are using for things we don’t want to say in front of Mum and Dad. Dad still hasn’t said yes to going home, but Piers is getting ready just in case. “I’m like the royal minion running ahead to scatter rose petals on the path,” he says.
Piers is 40 and he stands 6ft 2in in his cords and checked shirt. He has curly ginger-brown hair that rises over an oval face dominated by large eyebrows. He looks like a heroic owl; one part Horatius, one part winged friend of Winnie the Pooh. He recently set up his own company in which he deploys himself as a private, home-visiting GP in a tiny green Citroën bubble car. He dictates updates to the WhatsApp group as he drives, shouting over the noise of its engine like a commander giving orders over the sound of gunfire.
“Hospital team needs to engage with this now,” he shouts. “I strongly disagree with what they were saying yesterday about the risk of moving him.”
At 12:00 hours he is back on the radio. “The hospital has not completed the referral so the bed delivery has been cancelled,” he says. “Are we giving up on this plan?”
“Dad is worried,” Kate replies.
I’m worried too, I must admit. Whenever I think of him leaving the hospital now, I think of an astronaut leaving his space capsule. Maybe it’s the question of the oxygen. In hospital it comes out of the wall, like a fast internet connection. What if we run out?
Piers sends us a picture of the machines he has ordered. “These machines concentrate oxygen from the air,” he says. “They can’t run out.”
It’s also the thought of being in the countryside, far from immediate help. Late that night Dad has reflux and asks for a piece of chocolate. Then he changes his mind, but I hand him a square anyway, eager for him to eat something. He starts to choke. “Get me up,” he croaks. I pull him upright and turn him so he can sit on the edge of the bed, making awful gurgling noises.
“I thought I’d killed you,” I say. Literally death by chocolate.
“You nearly did,” he says, after a moment.
Operation Great Escape
That evening, Piers lights up the channel again. “OK, team,” he says. “We’re back on.” He has reordered the bed.
In the morning my father is on the commode, his back to the door. It’s a lengthy operation to move him now, so when a young doctor comes in Dad must stay there, like Henry VIII receiving a courtier.
“Could you come round here?” Dad asks him. “So I can see you.”
The doctor climbs awkwardly over the oxygen tube that runs from Dad’s mask to the wall and perches beside me on the arm of a chair, facing Dad on the commode.
“What do you think about going home?” Dad asks. “I wouldn’t recommend it,” the doctor says. He looks over his shoulder at the oxygen gauge. “I’ve never seen anyone on that much oxygen go home.”
I call Piers. Piers says the oxygen machines he has rented can supply more oxygen than the ones in hospital. Then Lynn Rogers from the home-nursing company arrives. She is 61 and has the personality of a tank. She is very hard to stop. Sitting by Dad’s bed, Lynn asks all the questions that no one in hospital asks. How many grandchildren do you have? What do you like to eat? “Are you a wine man?” she asks. “Or spirits?”
“They said he shouldn’t,” Mum says.
“Ridiculous,” Lynn says. “I promise I will get you home,” she tells Dad. “If you promise me you will focus on that glass of wine you drink when you get there.”
He is unwobbled, and my mother too, and as soon as Mum is on board I know that we will do it, or at least that we will try. We find a senior doctor in the palliative care team and I put Piers on speakerphone. “All right,” this doctor says at last. “If you want to do it, Mike, we’ll plan for tomorrow.”
“If I’m still alive tomorrow,” Dad says, “let’s do it.”
That night a nurse, a young woman from the Philippines, brings some medications.
“How are you, Michael?” she shouts.
“I’m quite frightened,” he replies, softly.
“About going home tomorrow?”
“No,” he says. “About dying.”
There’s a long silence. “No one knows what comes,” she says at last.
Dad reaches out with his good arm and grasps her forearm in a gesture of solidarity.
“I can’t believe I’m dying,” he says, after she has gone. “The clinical people all say it is happening. But I can’t believe it.”
I can’t believe it either, I say. It’s an outrage. I want to write a letter to The Times. I suppose that’s what this is. A lengthy complaint about my father dying. But also, I hope, a record of how hard it can be to get someone home, even if you are well off, even if you are well-meaning, even if you have a Piers.
In the morning, when the ambulance crew arrives, one of them pulls me aside. “Is he really on 15 litres of oxygen?” he asks. “I thought that was a typo.” He looks at his two colleagues. “I don’t know if we have enough.”
This will sink it, I think. But he is only worried that they will not have enough to get Dad to the ambulance. “That has about nine minutes,” he says, pointing at a tank beneath the stretcher. “We’ll bring the ambulance round the back.”
Once Dad is on the stretcher we have to gather up our things and run for it, out of the room, out of the ward. It feels wrong to be leaving like this, at a sprint, waving to the lovely nurses, the stretcher careening sideways around the corners.
Outside it’s a sunny afternoon. Mum gets into the ambulance and I dash to the car. The whistled tune from The Great Escape keeps popping into my head. Passing out of the city, the ambulance looms up behind me until I start speeding. “Sorry about that,” the driver says when we pull up outside my parents’ house. “I was worried our oxygen would run out.”
A hospital bed has arrived, just in time, and is all set up with two oxygen concentrators chugging like tractors. A bottle of wine is open and Lynn is there by the front door. “I told you I’d get you home,” she says to Dad as he is carried inside.
I know how lucky we are to have Lynn on our escape team, and to be able to afford it. Her company has supplied a former nurse to live with us. It costs £2000 (about NZ$3900) a week, for a minimum of two weeks, and of course you don’t know how long it will be. There are cheaper options if you have more time, but we don’t.
‘What’s the plan?’
That first night we are not quite sure what to do with ourselves. Piers is tearful. He had got Dad home; he had done it. We go to bed, the house vibrating with the sound of the oxygen machines. Piers and Kate and their daughters stay over, and at 3am their youngest rouses them. “Daddy?” she says. “Why is it so dark?”
It is pitch black and the oxygen concentrators have fallen silent. There’s been a power cut, tonight of all nights. Piers calls the electricity company and tells them he has a terminal patient in the house and about three hours of bottled oxygen. He calls the oxygen company and orders more. An engineer arrives at around 4am and diagnoses a break in a cable under the garden, and runs another over the lawn to a nearby electricity pylon and the power comes back on again and Dad is still alive.
The next morning workmen arrive to fix the cable. It’s raining so they erect a flimsy white gazebo to shelter the hole they are digging. The drive is full of vans filled with guys eating sandwiches and waiting for the downpour to ease off.
My wife and three boys arrive too, from New York where we live. The eldest appears occasionally at the end of Dad’s bed and launches into a monologue about his day; the middle son curls up on my lap like a cat. Periodically the youngest totters through the house with ice for Dad’s water glass.
“My mouth is dry as a kangaroo’s crotch,” Dad says.
Occasionally, my sister Lucy’s husband, Will Houston, wanders in with a question about the farm accounts. He recently qualified as an accountant. All of us are ecstatically glad about this.
Neighbours bring cakes. “Michael,” says one of Dad’s friends, leaning over him. “Bad luck.”
It sounds flippant. But what else can you say?
We feed Dad shepherd’s pie and mince pies and cold beers and ice creams from the village shop. He has breakfast in a chair looking out at the garden. “What’s that?” he asks, pointing towards the grave-sized crater in his beloved lawn, now ringed with bright-orange fencing.
It is all so much easier. In hospital, even after his case was deemed hopeless, there was still a regular procession of people coming into his room to check him over. The hospital felt like a huge ship: there were processes and systems that kept ticking over, even if you were going the wrong way, even if you had struck an iceberg. Now the nights are quieter; Mum sleeps beside him in her own bed.
Dad says goodbye to us individually and together. Once or twice he wonders if there has been a mistake. Was the oncologist correct? “These doctors don’t give you the full picture. When I was an accountant I gave people a full picture, a full profit and loss account,” he says.
“What’s the plan?” he keeps asking. “We need a plan.”
He seems to think death is something that he needs to do rather than something that will happen to him. It becomes harder to understand what he is saying, except when he is very cross. “I’m afraid you’ll have to lie back and listen to us,” my sister Kate tells him.
He sighs and mouths a four-letter word that is just about comprehensible.
We watch Dad sleep. We have done this a lot. All our lives he would dominate the conversation at dinner and then fall asleep, very abruptly, at the end of it and snore loudly, his head on his chest. Then my brother Chris would take a photograph of him. Chris found this endlessly amusing. He has an enormous collection of these pictures and we used to imagine that one day he would enter them for the Turner prize. Ten Thousand Photographs of My Father Sleeping. He could fill his boots with photographs now, though of course he does not take them.
“I wish he would recover,” he says.
Whisky and Aramis
On a Sunday evening, nine days after he came home from hospital, Dad lies in bed to the babbles and squeaks of grandchildren having a bath next door. I tell him I’m really proud of him. Not just his life, but how he has handled this business of dying. I don’t know if he can hear me.
He dies later that night. Somehow this is still a shock. I can feel myself shaking. My brother-in-law Will brings us all a glass of whisky.
“I think I can smell Aramis,” Lucy says. “It’s like it’s his spirit departing.”
A few mornings later a family friend, recently widowed, comes to the door with flowers and talks about struggling to get her own husband home from hospital.
Dad would tell me off for mentioning it. But how strange it was, to be told your loved one will die at any moment and there is nothing to be done, but also that they must not go home in case something happens.
In the kitchen the phone keeps ringing with people who did not know he was ill, people who saw him in the pub, two months ago, just before he got hit by the chicken.
“It was very fast,” I tell them. “But we were able to get him out before the end.”
I say it partly to have something to say. But also because it meant so much, that he died at home.
Written by: Will Pavia
© The Times of London