Over the next half-hour, the light fades outside and the room becomes dark. No one moves. We sit in the semi-dark, an orange glow lighting the room from the streetlamps outside. Every now and then, the leader gives a quiet commentary.
‘Look how peacefully she’s sleeping.’
‘Can you hear how her breathing has changed? It’s not so deep now, is it?’
‘Have you noticed that she stops breathing from time to time? That tells me that she is unconscious, very deeply relaxed … This is what the very end of life is like. Just very quiet and peaceful. I don’t expect she will wake up again now. She is very comfortable and peaceful.’
And then Holly’s breathing becomes too gentle to float a feather.
And then it stops.
The family are so mesmerised by the peace in the room that no one seems to notice.
Then Nan whispers, ‘Is she still breathing?’
The girls sit up and look at Holly’s face.
‘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.
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