AA Gill used to think that being a NHS patient was like travelling second class on a train, glitter than first class, but in the end everyone ended up at the same destination. But he’s discovered that the drug that might keep him alive is not available on the NHS…
By A.A. Gill
This article is published in cooperation with European Press Prize.
It seems unlikely, uncharacteristic, so un-“us” to have settled on sickness and bed rest as the votive altar and cornerstone of national politics. But there it is: every election, the National Health Service is the thermometer and the crutch of governments. The NHS represents everything we think is best about us. Everyone standing for whatever political persuasion has to lay a sterilised hand on an A&E revolving door and swear that the collective cradle-to-crematorium health service will be cherished on their watch.
When you look at our awkward, lumpy, inherited short-tempered characters, you’d imagine we might have come up with something more brass-bandy Brit: a bellicose, sentimental military fetishism, perhaps, or sport, or nostalgic history, boastful Anglophone culture, invention, exploration, banking avarice. But no. It turned out that what really sticks in our hard, gimpy, sclerotic hearts is looking after each other. Turning up at a bed with three carnations, a copy of Racing Post, a Twix and saying,“The cat misses you.”
We know it’s the best of us. The National Health Service is the best of us. You can’t walk into an NHS hospital and be a racist. That condition is cured instantly. But it’s almost impossible to walk into a private hospital and not eetingly feel that you are one: a plush waiting room with entitled and bad-tempered health tourists.
You can’t be sexist on the NHS, nor patronising, and the care and the humour, the togetherness ranged against the teetering, chronic system by both the caring and the careworn is the Blitz,“back againstthewall”,sternandsentimentalbest of us — and so we tell lies about it.
You will live longer in France and Germany, get treated faster and more comfortably in Scandinavia, and everything costs more in America
We say it’s the envy of the world. It isn’t. We say there’s nothing else like it. There is. We say it’s the best in the West. It’s not. We think it’s the cheapest. It isn’t. Either that or we think it’s the most expensive — it’s not that, either. You will live longer in France and Germany, get treated faster and more comfortably in Scandinavia, and everything costs more in America.
I’ve wanted to write about the National Health Service for a long time, but it’s resistant to press inquires. While the abstract of the NHS is heart-warming, the truth for patients is often heart-stopping. And junior doctor strikes, executive pay, failing departments, slow-motion waiting times and outsourcing tell a di erent story, and I’m regularly, ritually refused access by PRs and administrators, or they insist on copy approval or preplanned stories.
One of the doctors I approached was Professor Brian Gazzard, who has a reputation mostly for being an exemplary and inspirationally brilliant physician, but also as something of an ocean-going eccentric. He treats, teaches at and runs the Chelsea Aids clinic. I asked him what had changed most about his job.
“When I started, I told every patient that they were going to die. I could make it easier, make them live a little longer, but everyone died. Now I tell every patient they will live. They will need to do what I tell them, they’ve been silly, but they’ll live to die of something else. That’s astonishing.” He paused so I would understand the e ect it has on a doctor. “Look, I really don’t want to be written about. You won’t remember, but we met once before.”
A decade ago, Gazzard diagnosed my foreign correspondent’s dodgy tummy as acute pancreatitis, the result of alcoholism. “Of course I remember. You told me I could never drink alcohol again and I said, ‘You haven’t read my notes, I’ve been teetotal for 20 years.’ And you gave a sigh and reached into a drawer and lit a cigarette and said you’d been dreading telling a restaurant critic he couldn’t have a glass of wine.”
Gazzard laughed.“You’re one of the lucky ones,” he’d said as he walked onto the street clutching an armful of patient les and raised a hand in farewell. He repeated again: “You’re one of the lucky ones. I can always tell.” It was his rst misdiagnosis of the day.
What neither of us could know is that my pancreas was already a stuffed wallet of cancer, though not pancreatic — a migrated, refugee, desperate, breathless lung cancer.
I stopped smoking 15 years ago and as a gift to myself, proof of the clarity of my lungs, I would spend a week stalking on Loch Maree in Wester Ross. Every autumn since, I have climbed the same hills, chasing the deer, and, trudging upwards, recited a doxology of mostly extinct snouts I no longer puff: Weights, Guards, Navy Cut, Olivier, Black Cat, Passing Clouds, Number 6, Sovereign, Gitanes, Gauloises (does anyone remember when Paris smelt alternately of Gauloises, pissoirs and Chanel?), Winston, Camel, Sobranie, my father’s pipe in the cinema — clouds of sweet latakia smoke in the ickering projection. A Greek cigarette in a red box with a lasciviously smiling girl that called itself Santé, without irony: an untipped fag called Health.
This year, for the first time, I couldn’t make it to the top of the hill. I knelt in the heather, weak and gasping. It was the first time all was not well. There was also a pain in my neck that my doctor said was probably a cervical spine thingy and I should get a scan.
He sent me to Harley Street, where another doctor said: “You haven’t got insurance, it’s going to be expensive. Why don’t you get it done down the road and send me the pictures. A third of the cost.” I said: “I’m here now, just do it.” And he shrugged. A couple of hours later I went back for the results. He had the bland bad-news face.
‘The best money you ever spent’
“That was the best money you ever spent.” He turned the screen around and there was a beautiful spiral of colour clinging like an abstract expressionist collar to my spine.“This is cancer.”
That afternoon I was back in my doctor’s surgery. He was wearing the antiseptic face, the professional-doctor tragedy mask. I’m getting to see this a lot now. It is as much a protection against the infection of catastrophe for them as a respect for its victim. They glaze the bad news with sweet spittle. They’ll say: “The test results were not quite what we hoped. It might be trapped wind or it might be the thing that hatched from John Hurt’s stomach. Realistically, we’ll have to assume it’s more alien than fart.” My alien was the most common cancer in old men, our biggest single killer: an aggressive, nimble cat-burglar lung cancer that is rarely noticed till it has had kittens.
Guy has been my doctor for 30 years — 32 to be precise. He was the doctor who put me into treatment for addiction and he’s looked after me and my kids ever since. He’s private, so I pay. If I need a test, an x-ray, a consultant, I’ll pay. If I need anything more than a couple of antibiotics, I’m going to the NHS.
Within 24 hours I have an NHS consultant oncologist and early-morning appointments, for scans, blood tests and x-rays.
You couldn’t make up Charing Cross Hospital. Well, not as a hospital you couldn’t. It’s a monstrous, hideous, crumbling patched-up mess — the Elephant Building. On the way in I notice a couple of posters on the street saying “Save Charing Cross Hospital”. They’re stuck on a municipal noticeboard that’s falling over.
It’s plainly the result of dozens and dozens of attempts to make things better and, in fact, it is the physical embodiment of how most of us, trying to make our way through the teetering automatic doors, feel. It has a very good collection of contemporary British art. In some back corridor there is a series of Peter Blake’s best silk screens.
I love it: it’s how I feel. The lifts take hours to arrive, emphysemically, wheezingly opening their doors, and when they do, it’s without con dence or conviction. A man going up to the cancer ward puts his hand in front of the door and gets out.“I’m too frightened to take this lift,” he says.
In a waiting room, hundreds of us take numbers to sit like wilted potted plants in an autumn garden-centre sale, to take it in turns to meet the antiseptic face. If this were a set for a lm, all the actors and extras would be pulling looks of agony and sadness and fear, but the face of real cancer wipes our expressions to a pale neutral human.
The NHS has one of the worst outcomes for cancer treatment in Europe. It’s something to be borne in mind when you’re deciding to combine chemotherapy with a safari, or want to embark on a bar-thumping argument about health tourism. It was the rst question I asked my oncologist, Dr Conrad Lewanski.“Why is this such a bad place to get cancer, when we have lots of hospitals, when we teach doctors from all over the world, when we’ve won more Nobel prizes than the French?”
“It’s the nature of the health service,” he says.“The key to cancer outcomes is the speed of diagnosis and treatment.” The health service was set up with GPs separate from hospitals. The system means you probably have to wait a week or so for an appointment to see rst your GP, or a clinic. The average time for that consultation will be seven minutes. Perhaps your cough isn’t a priority. And then if your doctor thinks it does need a second opinion, he’ll suggest you see a consultant, and that’s likely to take a month. If the GP suspects cancer,that referral time is reduced to two weeks. He or she will probably write a letter, often two — all doctors still carry fountain pens.
I like my oncologist. He doesn’t have the morphine face; he looks amused
And then there are all the appointments — for tests, a cancellation, a missed x-ray, a scan — which can put months on a diagnosis. It’s not the treatment, it’s the scale of the bureaucracy and the Attlee-reverential, immovable-but-crumbling structure of a private-public doctor-consultant arrangement, which was the cornerstone laid down by the 1945 government at the insistence of doctors. That is the chronic tumour in the bowel of the system.
I’m given a talk by a nurse on the consequences of chemotherapy. She uses three pens. Two of them have three coloured barrels each. The scribbling, the underlining, the stars, the acronyms, the exclamation marks become ever more emphatic and decorative. Finally she hands me a notebook that is unintelligibly runic, but says not to worry because it’s all on the computer, which she then turns on to show me a heart-warming lm about sexual infections and high temperatures.
The hospital utters with bits of paper like mayflies. They’re propped up against screens, wedged up against keyboards, stuffed into teetering les, and then there is the constant Tourette’s questions,“When’s your birthday? What’s the first line of your address?”, all to collide you with the right cancer, to go with all the forms, the signatures, the screens, the machines, the radiation disclaimers and destiny. It makes Kafka look like ee cummings.
I like my oncologist. He doesn’t have the morphine face; he looks amused, inquisitive, like a shaved, garrulous otter. All he does
is lung cancer. This is his river, tumours his trout. He’s been a consultant for 15 years. Two years in, his father got it and died: “The worst thing I’ve ever had to go through. I do know what this is like — so how much do you want to know?”
“Everything, and the truth.”
I’ve never Googled cancer, but I’ve discovered that every one of my friends who owns their own house has a preferred cancer specialist and a hospital to go with them. They also have a perfect gardener, an ideal interior decorator and a masseur that they insist — insist — I use, because they are all the best and, of course, you only get what you pay for. Lots of them are astonished I’m still in this country of catastrophic cancer statistics.
Those who don’t have money for their own homes have magical diets, homeopathy and religious new-age cures, or at least a conspiracy theory about big pharma hiding the e cacy of vitamin C, kale, magnetism and mistletoe. If it doesn’t make you better, at least you get snogged a lot.
And everyone, but everyone, will have a mantra story of their secretary’s husband or a woman they used to work with who was given three weeks to live and is still stacking shelves or conducting operas 10 years later. These little homilies are handed out with the intense insistence of lucky heather, using the language of evangelical religion and locker-room encouragement.
Why is our reaction to cancer so medieval, so wrapped in fortune-cookie runes and votive memory shards, like the teeth and metatarsals of dead saints? Cancer is frightening. One in two of us will get it. It has dark memories, unmentionably euphemised. In the public eye, not all cancers are equal. There is little sympathy for lung cancer. It’s mostly men, mostly old men, mostly working-class old men and mostly smokers. There is a lot more money and public sympathy for the cancers that affect women and the young. Why wouldn’t there be?
“How do men react when you tell them their cancers are fatal?” I ask Dr Lewanski. “Always the same way — with stoicism.”
“Bollocks,” I think. “I thought that was just me.”
Actually it’s not being told you’ve got cancer that is the test of character, it’s the retelling. Going home and saying to the missus: “That thing, the cricked neck. Actually it’s a tumour, the size of a cigar.” It ought to come with a roll of thunder and ve Jewish violinists, instead of the creaky whisper of fear.
People react differently to different cancers: most women think they’ll survive, and statistically they’re right. Most men think they’ll die — and likewise.
“So, what’s the treatment?”
“Chemotherapy. Platinum in your case. It has a very good chance.”
Someone should write a paper on the euphemistic size comparisons for tumours. There should be an esite, Euphotumours. The images are very masculine: golf balls, cricket balls, bullets, grenades, ruminant testicles. No one ever says, “I’ve got a cancer the size of a fairy cake.”
And what about after the chemo?
“Well, there’s a new treatment, immunotherapy. It’s the biggest breakthrough in cancer treatment for decades. Cancers camou age themselves as chemical markers that tell your body’s natural defences that there’s nothing to see here, move along. These new drugs strip away the disguise and allow your body’s natural system to clean up. It’s new and it’s still being trialled, but we’re a long way along the line and it is the way cancer treatment is bound to go. It’s better for some growths than others, but it’s particularly successful with yours. If you were in Germany or Scandinavia or Japan or America, or with the right insurance here, this is what you would be treated with.”
The doctor looks at Nicola, the missus. His otter face has grown a little sphinxy. “You remember asking if the treatment Adrian got on the NHS would be any different from being a private patient? And I said a better cup of coffee and more leeway with appointments. Well, this is the difference. If he had insurance, I’d put him on immunotherapy — speciffically, nivolumab. As would every oncologist in the First World. But I can’t do it on the National Health.”
The National Institute for Health and Care Excellence (Nice), the quango that acts as the quartermaster for the health service, won’t pay. Nivolumab is too expensive — £60,000 to £100,000 a year for a lung-cancer patient; about four times the cost of chemo. And the only way to see if it will work for an individual patient is to give it to them all, and the ones it doesn’t work for will weed themselves out. What Nice doesn’t say about the odds is that immunotherapy mostly works for old men who are partially responsible for their cancers because they smoked. Thousands of patients could benefit. But old men who think they’re going to die anyway aren’t very effective activists. They don’t get the public or press pressure that young mothers’ cancers and kids’ diseases get.
As yet, immunotherapy isn’t a cure, it’s a stretch more life, a considerable bit of life. More life with your kids, more life with your friends, more life holding hands, more life shared, more life spent on earth — but only if you can pay.
I’m early for my first eight-hour stint of platinum chemo. The ward in Charing Cross looks like a cross between a milking shed and an Air Koryo business lounge. I am settled into a hideous but comfortable chair and a tap is jabbed into the back of my hand. A series of plastic bags full of combative and palliative cocktails slowly dribble into my body and every 10 minutes I have to shuffle to an invalid’s loo to dribble it out again.
I like it here. The nurses are funny and comforting, optimistic, and bear the weight of the sadness, the regret and the pity in the room on their shoulders with an amused elegance and sincerity that comes from their years of experience, or the naivety of inexperience. The other patients shuffle in with their partners to share sandwiches, talk about shopping and the cousins in New Zealand and window boxes. There are children with ageing parents, happy/sad to be able to repay an infant’s debt.
I manage to find the one dealer in the ward, or rather she finds me. Her boyfriend’s making hash cakes — they’ve definitely shrunk his tumour, I should definitely have some. I smile, shrug apologetically and say sadly I’m already a junkie. I don’t take drugs.
“Really? Even for this?” I’m not giving up 32 years of clean time for some poxy lung.
And there are the ones who sit alone, who don’t have any friends to play cards with them, to drip the will and the strength and the faith to face this. I don’t know how anyone manages to do this on their own.
An old friend sits through the mornings with me, Nicola comes with lunch and Flora and Ali, my grown-up kids, share the afternoon. If it wasn’t for the cancer, that would be a really lovely day. If it wasn’t for the cancer.
There’s a natural break in the article here. It should have been finished two weeks ago, but I had a bad night, a really bad night.
Nicola called Guy, the GP, and he came round and took a look and said: “He needs to be in A&E now.”
So I’m on a gurney in Charing Cross at nine in the morning. On the other side of the blue plastic curtain, a bloke is being held down by three policemen shouting, “Don’t flick your f****** blood over here, I don’t want what you’ve got.”
A young doctor comes and asks me questions. All doctors in A&E are preternaturally young. One of the questions after “What’s your date of birth and the first line of your address?” is inevitably “Can I put my finger up your bottom to see if there’s any poo or blood?”
The other question is: “On a scale of 1 to 10 — 1 being a scratch and 10 unspeakable agony — what do you think you’re suffering at the moment?” You wouldn’t describe this as thin pain. It’s 10 out of 10. My stomach is agonised with a terrible wrenching distension. I’ve lived a middle-class, sheltered, uncombative, anti-violent life, so I don’t know how this compares to other more manly men’s pain, but this is by miles and miles the worst thing I’ve ever been through, thank you for asking.
More x-rays and blood tests and the surgeon returns with the complete granite face and says: “Well, it could be a burst ulcer, but of course it isn’t. The tumour in your pancreas has increased in size very fast. It’s as big as a fist.” And he shows me a fist in case I’d misplaced the image.
I’ve decided to call the pancreatic tumour Lucky, as a nod to prophetic Professor Gazzard. So the chemotherapy isn’t working. I ask my oncologist what’s next.
“It’s a bugger,” he says. “It looked so hopeful, but you’re right, it isn’t working. The pancreas is a bad place. We can’t operate and the side effects of radiation aren’t worth the risk.” And there’s pancreatic pain, which is famously in a league apart, so at least I can be stoical about that.
“Well, on the NHS we can give you another round of chemo, a bit rougher with slighter outcomes … but there is really only one treatment for you: nivolumab.”
From behind the blue curtain, the nurse asks the policeman: “What do you want to do with him?”
“Oh, let him go,” says the copper.
“I thought you’d arrested him?”
“No. Let him go.”
That evening I’m sitting in bed on the cancer ward trying to get the painkillers stabilised and a young nurse comes in.
“There you are. I’ve been waiting for you all day. You’re supposed to be with me down in chemotherapy. I saw your name. Why are you up here?”
“Well, it turns out the chemo isn’t working.” Her shoulders sag and her hand goes to her head. “F***, f***, that’s dreadful.” I think she might be crying.
I look away, so might I.
You don’t get that with private healthcare.
Cancer survival rates in Europe
The UK has the worst cancer survival rates in western Europe — a third lower than those of Sweden.
“Five-year cancer survival rates are so low in the UK because we’re so slow at diagnosing cancer in the first place. A patient must first see their GP, then be referred to see a specialist. The lag time can be months. And when each GP consultation lasts a few minutes, people can slip through the net altogether. In European countries, patients can access specialist care easily and straightaway.”
Dr Conrad Lewanski, consultant clinical oncologist and fellow of the Royal College of Radiologists
Photo: © Wikimedia
AA Gill, who died on 10th December 2016, was a celebrated writer and critic. He wrote weekly restaurant reviews, culture columns, features and travel pieces for The Sunday Times for twenty-five years up until his untimely death. He wrote two pieces about the cancer which struck him down so suddenly - both were written during his last month of life. AA Gill began taking nivolumab after writing this article.
The Sunday Times is a British newspaper whose circulation makes it the largest in the quality press market category. It is published by Times Newspapers Ltd, a subsidiary of News UK, which is in turn owned by News Corp. Times Newspapers also publishes The Times. The two papers were founded independently and have been under common ownership only since 1966. They were bought by News International in 1981.
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