With the End in Mind: Dying, Death and Wisdom in an Age of Denial

‘I think she stopped breathing a few minutes ago,’ says Poppy, ‘but I was hoping it wasn’t true.’

‘Did you feel her move at all?’ the leader asks the girls, and they shake their heads as their tears begin.

‘Well done, you lovely family. You gave her the most wonderful day and the most peaceful evening. She has died’ – the girls gasp and sob, and he waits for quiet before he continues. ‘She has died so peacefully because she felt at peace with you here. You have done her proud.’

The girls move away from the mattress. The leader encourages them to touch their mum, to talk to her, to maintain the calm in the room. I am fascinated to see them lie down beside her again, weeping gently and whispering their love to her. It is almost unbearably sad, but this is not my family, and I feel my tears would be misplaced. I struggle to focus on the guidance being provided by the leader.

To Nan he says, ‘We need to telephone an on-call GP to certify her death, and then you can call a funeral director. But there’s no hurry. Give yourselves time. I’ll call the doctor now. She can stay here all night if that helps you and the girls.’

Nan knows what to do. She has buried two husbands and a son.

She offers us more tea, but the leader has informed the on-call GP of the death, and says we must be going. We let ourselves out of the smoky flat and onto the lamp-lit balcony, walk in silence down the gloomy stairs and out onto the pavement.

‘You OK?’ asks the leader.

Of course I’m not. I think I just killed someone. ‘Yes, fine,’ I reply.

‘You know the injection didn’t kill her, don’t you?’

‘Mmmm …’ I sniff.

‘She was so exhausted that she would probably have died last night if she hadn’t got that false energy from the akathisia. If you hadn’t controlled it she would simply have danced herself to death, agitated and upset. Instead, you managed her restlessness. And that gave her the peace to lie down and cuddle her girls, after her magnificent last day.’

We walk back to the car as a new mist rolls up from the river, and evening turns to night. My first day on call for the hospice. Not a day I will ever forget.

I learned a very important lesson watching the leader talk Holly’s family through the sequence of changes as her body relaxed, and dying displaced the restless energy she had been given by her anti-sickness medication. He was naming what they could observe; he was leading them through the process; he was reassuring them that all was expected, and usual, and safe. This is the task of the experienced midwife, talking the participants through the process, delivering them safely to the expected place. It is a gift that allowed the daughters to remain present and involved, and enabled them to look back and know that their calm presence was their final gift to their beloved Mam. It was a rare opportunity to watch a master at work, and to learn from that gentle, observant example.

Wrecking Ball (#ulink_aeeaced5-9969-54d8-a02e-f24c6f3d8417)

Watching people approaching an anticipated death offers families and friends a comfort as they all arrange their priorities and live each day as it arrives. Sometimes, though, death arrives unannounced and unanticipated. In some circumstances this is seen by the sur­­vivors as a blessing, although adjustment to sudden death is often harder than a bereavement when there has been a chance to say goodbye.

Perhaps the cruellest circumstance, though, is when a sick person has been getting better and seems to be ‘out of danger’, only to be snatched by death in a completely unforeseen manner. When this happens, a shocking adjustment has to be made by loved ones – and by professionals too.

Alexander and his brothers, Roland and Arthur, were named after heroes. Their mother had hoped that this would inspire them, but Alex shortened his name at school to avoid the taunting his older brothers endured daily. Alex was a quiet soul. He liked art and rock-climbing; he preferred his own company; he loved colour and texture, finding deep pleasure in creating huge canvas artworks that begged to be touched and stroked; he relished the challenge of solo climbs on solitary pinnacles. Eschewing his family’s encouragement to train as an accountant, he took up an apprenticeship as a painter. He neither captured continents nor courted fair damsels: he could feel his mother’s tense anxiety for his future.

But there were heroic aspects to Alex. He was tenacious and determined about his art, and he tolerated physical discomfort without complaint. He endured pain in his back for months, thinking he had pulled a muscle while moving ladders. Only when he was unable to help his boss paint a ceiling because of his pain did he consult his GP. He was then passed between health professionals for six months before someone X-rayed his chest. The X-ray showed a snowstorm of golf-ball-sized cancer masses throughout Alex’s lungs. And then the penny dropped.

‘Alex, before all of this back pain and tiredness started, did you ever have any pain in your scrotum, or feel a lump in one of your testes?’ asked the doctor who had ordered the X-ray. Alex had not anticipated such an odd question, but he could clearly remember that several months previously he had had a ‘hot, sore ball’ for a few weeks. He had thought it was a football injury, and was too embarrassed to seek medical advice. He just waited for the swelling to disappear – which it did, although his testis continued to feel hard and misshapen, and he remained too shy to mention it. Then his back pain had distracted attention from it. All that time, a cancer that had begun in his testis had been slowly spreading up the chain of lymph nodes that lies deep in the abdomen and close to the spine, causing the lymph nodes to swell and hurt, and eventually allowing the cancer cells to escape into his bloodstream and invade his lungs.

Alex arrived as a new boy to the Lonely Ballroom, the six-bedded bay where our crew of young men with the same cancer, testicular teratoma, assembled for their regular five-day infusions of chemotherapy. He was anxious, of course. Like all the visitors to the Lonely Ballroom, Alex had the cancerous testis removed and a range of scans and blood tests to detect how far his cancer had spread. It had found its way into not only his lungs, but also his liver and kidneys, and tumours were scattered around the abdominal cavity like pearls from a broken string. Getting his treatment started was urgent. And now here’s the good news: testicular teratoma can be completely cured, and even when it is widely spread, the cure rates are very high. In our hospital in the 1980s, that treatment took place in the room dubbed the Lonely Ballroom by its brotherhood of occupants.

Waiting for his drip to be set up on his first day, Alex paced restlessly around the ward and up and down the high, glass-walled staircase, from which there is a great view of the locality: the huge, rolling green park near the city centre, the roofs and chimneypots on the terraces of local houses, and the Victorian cemetery at the back of the hospital. The cancer centre was built with its windows facing away from the cemetery (Don’t mention the D-word), but all our patients could see it as they parked their cars or disembarked from their ambulances and came up the staircase to the wards.

Teratoma is a cancer of young men. When Alex was shown to his bay, he found five companions already comparing notes on how their last three weeks had gone, debating whether the local football team would ever get off the bottom of the league table, and whether bald can ever be sexy – of specific importance to young men whose chemotherapy had rendered their heads as shiny as polished eggs. They all had drips in one arm and, dressed in shorts and T-shirts, were lounging on their beds or walking around with their drip stands, sharing magazines and chewing gum. They were waiting for their first dose of anti-sickness medication, after which the saline bags on their drip lines would be replaced by bags of chemotherapy. They welcomed Alex like a brother.

‘Which side, mate?’

‘Spread far?’

‘Tough luck, mate, but they’ll see you right in here.’

‘You gonna shave your head or just wait for your hair to drop out?’

I was the most junior doctor in the cancer centre, and I was attached to this thirty-two-bedded ward. Drawing the curtains around Alex’s bed for privacy, I explained the way the chemotherapy would be given. The other five young men in the room gathered in the far corner and continued to discuss last night’s TV and the football World Cup in Mexico, in voices loud enough to demonstrate that they were not eavesdropping: each of them had, in his turn, once been here for the first time, scared and embarrassed and embarrassed to be scared; each had learned the dark humour of the cancer ward and of the Lonely Ballroom. It wasn’t just the remaining testis that was lonely.

All the Lonely Ballroomers were participating in clinical trials. Data were (and still are) gathered from centres all over Europe, and it is this constant, trans-European collaborative effort to find the highest possible cure rate that has made it possible to expect cure in more than 95 per cent of teratoma patients; even people with cancer as advanced as Alex’s have a cure rate of over 80 per cent. Their chemotherapy is highly toxic, not only to their cancer cells, but also to their bone marrow, kidneys and other organs.

During this arduous treatment, the hardest toxicity to bear is nausea. These boys are really, really sick: they vomit and retch and feel horribly nauseated for the full five days. Far better drugs are now available to manage treatment-induced sickness, but back then we had a cunning plan to reduce their experience of nausea: for the full five days they were given a mind-bending combination of drugs that included high doses of steroids, a sedative, and a drug related to cannabis. This made them sleepy, happy and very high. Random laughter and ribald jokes became the norm once the drugs began to disinhibit them. The Lonely Ballroom may have been a cancer ward, but it was always a cheerful one, and as the drugs wore off on day five, the guys could remember remarkably little about the experience apart from their mellow fellowship.

I explained all this to Alex, who had been told it all in clinic, but as is often the case with shocking news, he had retained only a little: cancer, everywhere, chemotherapy, blood tests, sperm count, bald, sick, off work. Helpful details like curable, optimistic, getting back to work, had simply gone over his head. He was terrified, and ashamed of being terrified; like all mountain climbers, he could face the fear of a fall and sudden death, but the idea of watching as death approached, helpless as the sacrificial virgin tied to the stake to await the dragon, was paralysing. He should be a hero like his namesake, not a helpless victim. He felt his fear and labelled himself a coward. His shame outweighed even his fear.

Laughter from beside the windows: ‘Butch’ Wilkins, the England midfielder, was being interviewed on TV and had just been asked whether coping with the harsh tackles sprung on him by other teams’ defenders took balls. Cue belly-shaking laughter from the men with surgically adjusted tackle and single balls. Vicious humour was their weapon of choice in public. Behind the curtain, Alex regarded me with sorrowful eyes, slid down the bed while raising the sheet towards his chin, and whispered, ‘I can never be as brave as them …’ as a tear rolled slowly down his cheek.

‘You only need to get through this a day at a time,’ I began, but he started to rock backwards and forwards, gulping and trying desperately to remain silent as he was overtaken by sobbing. The window boys diplomatically turned the TV up. They knew, so much better than me, how the fear of the fear is the worst aspect of all.

I feel so helpless and inept. Is crying in front of me even more undermining for him? If I leave now, will that look like abandonment?

I could feel my cheeks burning, and my own eyes brimming with an overwhelming sense of helplessness before the immensity of Alex’s struggle.

I mustn’t cry, mustn’t cry, mustn’t cry …

‘I just can’t imagine how hard this is for all of you in here,’ I said. ‘All I know is that everyone looks like you on their first day. They all did – and look at them now.’

‘I’m such a coward,’ he whispered as he continued to rock, his sobs abating.

Lost for words of comfort or of hope, I reach for my tray of kit to set up Alex’s drip, and he holds out both arms as if to be handcuffed.

‘Are you right- or left-handed?’ I ask, and like so many artists he tells me he is left-handed. While I prep the skin, tighten the tourniquet and look for a suitable vein, I ask about his art, and he tells me how much he loves the creative process: imagining the work, almost feeling it as a reality; building each canvas, layer by layer and colour by colour; how he dreams in textures and surfaces as well as pictures and colours, endlessly fascinated by the combin­ations of surface and space, colour and blankness that he sees in nature when he is walking and climbing. He is completely transported as he speaks, and in minutes his drip is attached and his face is calm. I ask permission to pull back the curtains, and we see his five room-mates playing cards beside the TV, a circle of shiny heads and drip stands like a peculiar toadstool ring sitting in a copse of metallic trees.

‘Want to join in, mate?’ one of them asks. Alex nods, and grabs his drip stand. I escape to ponder whether bravery is about being fearless or about tolerating fear. Why do the ideas for helpful responses arise only as I walk away from the bed?

By late afternoon, all the lads are high as clouds and vomiting for England. They lie on their beds and attempt to aim their laid-back heads towards the washing-up bowls that are provided for them: they are too sleepy and slow to catch sudden vomits in the small plastic kidney bowls used for the rest of the ward. They laugh at each other and cheer each other on, and by the time I head for home they are all singing along tunelessly to that year’s World Cup song – which may not, in fact, have had a tune anyway.

Three weeks pass, and it’s another Monday in the Lonely Ballroom. Six lots of blood tests to collect; six drips to set up; six sets of mind-altering drugs to prescribe; six reviews of the last three weeks. Alex is no longer a new boy; he knows the drill, and his shiny head now matches his room-mates’. There is shared outrage at Maradona’s ‘hand of God’ goal against England. Alex’s chest X-ray shows that his many cancer deposits are shrinking very quickly. I take the big, grey transparencies to show him, and he is intrigued by the images, by the contrast of dark and light, the puffball shadows looming large and white against the dark lung tissue, and the huge reduction in size after only the first round of chemotherapy. I explain that all the other secondary deposits in his liver, kidneys and abdomen will be doing the same thing: shrinking away as the chemotherapy has its effect. This increases his chances of cure even further. He nods, serious and thoughtful. I wonder about asking how he feels in himself, whether his fear is still so raw, but I am afraid I may undo his mask, and that he may not wish to go there. I move on to the same, yet always completely different, conversation with each of the other patients.

That week, I was on call on Wednesday evening. I always inspected the Lonely Ballroom drips before going home, because if any failed during the night I would have to drive back and resite them. The guys were quiet. England were on their way home from Mexico, there was a heatwave and the ward windows, facing south, turned the room into a hothouse that was only just cooling as the evening wore on. Most of the drips looked fine, but Alex’s skin was becoming slightly red around the drip-site, and he noticed that when he moved his arm, the drip stopped, causing an alarm to sound. I gathered a kitbox, pulled the curtains and set about resiting the line.

‘I still don’t know how to bear this,’ he said softly once the curtains were drawn. The ‘happy drugs’ have taken his guard down. ‘I mean, I know it looks as though I’m getting better, but even if it all goes away, we don’t know that it will never come back, do we?’

I was trying to thread a plastic tube into a vein in his forearm, too focused to respond. Into the silence, he sighed, ‘I can’t bear waiting. How do people bear it if they’re waiting to die? I wouldn’t want to know.’

I taped the tube in place and pressed the button to restart the drip. The ‘on’ light winked encouragingly. I sat back and looked at Alex. He lay against his pillows, bright-eyed with the absence of eyelashes and brows. He looked very relaxed, yet he was scowling to try to hold the threads of his thoughts.

‘Do people realise when they’re dying?’ he asked languidly. The effect of the drugs would mean that, however useful our conversation might prove to be, he was unlikely to remember it. Yet in the here and now, helped by the deep relaxation induced by his drugs, Alex was genuinely asking about the things he feared the most. This is a chance that might not arise again.

I sit still and wait. A change comes over Alex’s face. He pauses, looks up at the curtain rail, and squints as though trying to focus. Then he says, very slowly and deliberately, ‘I’m not sure whether to tell you this …’

Pause. Don’t interrupt. Let him keep his train of thought.