Deep Dreams
I wrote this story shortly after the events took place, now many years ago. I was then a young doctor, married and a young mum myself, and I had a lot to learn about life. It seems to me still that this family taught me many things, in a series of chapters.
So here’s a thing. I first looked after Pete when his rare cancer was newly diagnosed and operated on more than half a decade ago. He was a handsome young husband and father of two small boys who believed he was invincible. And since his outlook was very poor, and this is six years later, he almost was. His experience was one of the events that turned my career intentions towards cancer management and palliative care. I have thought of him, of his tiny, strong wife and of their beautiful, innocent boys, many times since I looked after him on a surgical ward a few months after I qualified as a doctor.
Let me give you the back story. Pete was a deep-sea diver who worked away from home for weeks at a time. When he was home he was a dedicated dad, a keen member of a five-a-side football team, and had a personal seat at his favourite pub, where he and his former school friends swapped stories about their lives: the coalmines, shipbuilding, oil and gas, the heavy industries that absorbed pimply youths in our area and turned them into old men. Pete was never a pimply youth. He was the local pin-up, and many hearts were broken when he married his childhood sweetheart Lucy. Pete was engaging and charismatic; he had the confidence of a man who knows himself to be attractive. The nurses would linger when offering him medications or meals. He met us all with a smile of his crinkly turquoise eyes.
But he was having trouble passing urine, and investigations showed that this was because he had a growth near his bladder. In the operating theatre all those years ago, when the surgeon got into Pete’s pelvis, he found a huge tumour, and in cutting away as much of the mass as he could, he feared that he may have damaged some of the nerves that enable a man to control his bladder and to enjoy a sex life. This was going to be difficult news to break. It was broken the following day by the surgeon ushering all the female members of his ward round (which meant everyone except him) out of Pete’s room, and then, as he left the room himself, with his hand on the door handle, turning back to Pete and Lucy and declaring, ‘And by the way, you’ll probably be impotent,’ before closing the door behind him. The shock on their faces was the last thing I saw as the door closed, and in my head a different door opened, to the land of ‘Medicine need not be like this.’ The flame was lit for a career in communicating.
Pete’s tumour turned out to be a very rare type, that can grow very big where it starts, and can also send tiny seeds out into other parts of the body, particularly the lungs. If caught early enough and completely removed, it can sometimes be cured. Pete’s chest X-ray was clear, his whole-body CT scan was clear (that was an exciting new test at the time), and the surgeon hoped that the radical surgery, although possibly condemning Pete to a lifetime wearing a catheter and unable to have erections, might have been curative. Two weeks after the operation, with his catheter still in, Pete was allowed home for weekend leave. He was impishly delighted to report on his return to the hospital that ‘that other thing’ was fine: ‘In full working order,’ he beamed at me and a blushing nurse. She ran away. He winked. Lucy reached for his hand. I could feel my tears welling as I left the room.
Three months later Pete was back at work. He did not need a catheter, his sex life was ‘top-notch’, and he would be allowed to dive again six months after his surgery. He was tanned, beaming and confident, but Lucy, sitting beside him in the out-patient clinic holding his hand, looked strained and anxious, vigilant for any possibility of bad news. The chest X-ray was still clear. As she relaxed and smiled, I could see why he had fallen in love with her.
Wind forward six years. Prompted partly by that early experience, I am training in palliative medicine. My consultant trainer asks me if I can work late to visit a patient at home at the request of a local Macmillan nurse who is struggling to manage the pain of a young man with a rare type of cancer, pressing on his pelvic nerves. He tells me the name. My heart thuds and my stomach drops. I see Pete and Lucy’s faces through that closing door so long ago, and my heart aches for them again. The home visit is arranged.
Lucy’s eyes are full of tears as she opens the front door. ‘I couldn’t believe it was you when the nurse told me. Pete’s so excited. The boys remember colouring in with you at the hospital.’ She is even smaller than I remembered, and wound tight like coiled wire, mouth flat and drawn, clothes baggy on her tiny frame. She leads me upstairs, where a wasted, sallow man with Pete’s brilliant eyes above hollow cheeks is sitting in striped pyjamas. A Belsen lookalike, I think, and then banish that thought as he smiles and the years drop away.
Pete resurrects that old joke. ‘Still top-notch,’ he tells me, ‘but I don’t have the energy and I lose my breath easily.’ He has had lung secondary tumours for two years. Chemotherapy has thinned his hair but only partially shrunk his cancer. The last round of chemo had no effect, and there are no further options for shrinking his cancers. The Macmillan nurse has become involved because regrowth of the pelvic tumour (damn! a microscopic amount escaped the surgeon’s knife and has regrown) is now compressing those delicate nerves in the pelvis, causing pain in Pete’s bottom and legs. The tumour is getting bigger, and is pressing on some blood vessels. This has caused Pete’s legs to retain water and become swollen, heavy. He struggles to manage the stairs, and has been living upstairs for the last two weeks.
We talk tactics, Pete and Lucy, the nurse and me. Pain caused by nerve damage is quite tricky to treat, and managing the swelling will involve bandaging his legs daily for a week or so until they go down enough for him to wear compression stockings. ‘Very sexy,’ he says, grinning. We three women are past the blushing stage of life. He agrees to a short hospice admission to sort out his leg swelling and try to get to grips with the pain. We may be able to improve his mobility, and if we can, he would like to take his boys fishing.
And so now here we are. Pete is once again a patient in my care, Lucy rushing between their home, where she sees the boys out to school and welcomes them home, and the hospice, where she spends the day sitting in Pete’s room, searching his face for clues to his deepest thoughts while he limits any conversation to fishing, football and diving exploits from his exciting career. ‘It’s as though none of this is happening,’ she tells me. ‘As though he doesn’t realise how sick he is. I don’t know what to tell the boys. I don’t know what to tell his mum. I don’t even know what to think myself. I’m swinging between hoping for a miracle, and knowing that he’s going to die. I’m completely lost.’
The leg swelling responds well to daily bandaging, and Pete’s sense of humour ensures that the bandaging sessions are hilarious as he runs a commentary on the unwrapping and rewrapping, the gradual re-emergence of his kneecaps from the cylindrical, swollen limbs, the eventual reappearance of his toes from the bulging swelling in his feet, and the music-hall punnery of the swelling of his scrotum. The pain, however, is more of a challenge. The nerves in Pete’s pelvis are under pressure from the tumour, and this sends waves of pain like electric shocks down the nerves into his legs and buttocks that leave him grey and exhausted every time he tries to stand up. Our drugs make very little difference; a combination of painkillers that might sedate a horse has simply enabled Pete to sit in bed with less discomfort, but with no prospect of walking or taking his sons out anywhere.
The boys visit in the evenings after school. Pete takes extra painkillers before they arrive, and insists on being helped into a chair so they don’t see him in bed and become concerned. They bring their homework, they bring comic books, and they watch TV with their dad. Then Lucy takes them home and Pete goes back to bed, takes his evening pills and settles into sleep.
Except that he doesn’t settle. In his sleep, Pete thrashes and shouts. He moves and grimaces. He awakens, sweating and breathless, shaking and afraid. On several occasions the on-call doctor has been
sent for because the nursing staff were worried that Pete was having some kind of heart attack, or was struggling to breathe because of blood clots in his lungs, but his chest is physically unchanged when we examine him. It seems that he is having nightmares, yet afterwards he has no memory of them. He begins to dread night-time and to postpone going to sleep, with the result that he looks ever more exhausted by day, and his pain is getting worse.
One night, as Pete lies thrashing and calling out in his sleep, the night ward sister wakes him up mid-dream. He awakens shouting and waving his arms, then gradually calms as he recognises the half-lit room around him and the nurse sitting in the bedside chair. She asks if he can remember what he was dreaming about. Yes, he can. Yes, he can, and he now realises that this dream is the same, or very similar, every night. This dream terrifies him. It takes him back to his deep diving days. It brings him to the edge of his life.
Divers always work in pairs, Pete explains to the nurse. ‘We must always be able to see each other. If something goes wrong, we’re responsible for helping our “buddy” to the surface. We never abandon each other–it’s a matter of principle, of honour, of sharing each other’s danger below the water.’ In the dreams, Pete and his long-term diving buddy are always on a deep dive, mending a pipeline in dark and dangerous waters. They are working some distance from each other when Pete realises that his oxygen tank is nearly empty. He has enough oxygen left to get to the surface, or to get to his buddy and alert him, but not to do both. He cannot surface and desert his buddy, even though it may cost him his life. But if he uses his oxygen to swim to his buddy, he will not be able to reach the surface. He cannot decide what to do. And while he struggles with the dilemma, his oxygen runs out. He is about to die. At that moment he always wakes in a breathless panic, yet unable to grasp the thread of the passing dream.
The nurse helps Pete to sit up. She turns the lights on, and makes a warm milky drink. And then she asks him what he thinks his dream is really about. He says, ‘It’s about diving. It’s every diver’s nightmare.’
She nods before saying, ‘And could it be about anything else, Pete?’
Pete reflects. He nods and looks at the nurse. He tells her that the dream is about him, about Lucy, about dying. ‘I can’t leave her alone with the boys and all the things we should be dealing with together,’ he says, ‘but I can’t help it. My time is running out. I’m going to die. She’ll be alone with everything to deal with. I’m abandoning her. She is my dearest and best buddy, and I’m leaving her on her own.’
The nurse and Pete take time to digest this revelation. Pete is devastated by the reality he has been trying to ignore, the odds he has been trying to beat.
And then the nurse asks him what plan he might make to support Lucy. It is as though she has turned on a light beneath the waves and asked him to notice the diving bell that is available for both of them to be brought to the surface.
Pete leans forward and says, ‘I have to help her now. We need to tell the kids. We need to do it together. I need to be at home. I need to support her. I need to sort out the mortgage and the insurance. We need to clear the garage. We need to be a team again. She doesn’t have to do it all on her own… but she doesn’t know that. Until I tell her.’
The night sister reported these events in her handover report next morning. But that didn’t really prepare any of us for what happened next. Pete asked for a member of the ward team to help him explain to Lucy how close to death he was. He knew that his strength was ebbing week by week, and that his life expectancy was likely to be weeks, perhaps a few months at most. He and Lucy spent the morning talking, weeping, planning, and asking advice from our ‘family worker’ about how to explain to the boys that their dad was dying.
That evening, they asked their sons what worries they had about their dad.
The younger boy, now eight, said, ‘I think about what will happen if you never come home.’
The older son, ten, said, ‘You’re not going to get better this time, are you Dad?’
When Pete and Lucy gave them the space, the boys seemed already to know that Pete would not live to the year’s end. Both had been locked in a lonely place where pretending everything would be fine was the only acceptable behaviour.
They wept. Pete told them, ‘It’s OK to cry. We men, we can cry and be strong at the same time. It’s not only women. Your mum is the strongest person I’ve ever met, and she cries like a girl. So we can cry like men. And then it’s time to get stuff done.’
That night, and for the next several nights that Pete remained at the hospice, he slept without nightmares. He awoke looking refreshed. His pain reduced. He began to walk. His long-idle legs were weak, and he needed a walking frame, which he decorated in the colours of his football team. Lucy brought the car on Saturday, and they took the boys fishing. On Monday Pete went home. The bed had been moved downstairs and it almost filled the living room, but they all sat on it together to watch TV. Pete’s five-a-side team came round to sort out the garage under his close supervision. This seemed to involve quite a lot of beer and singing, but was achieved in a week.
Despite the enlargement of his tumour, Pete’s pain was well controlled. He remained mobile until two weeks before he died, then stayed in bed and declared that he was ‘captain’ of the house, managing everything from ‘the bridge’.
Sometimes, it seems, a pain in the body is actually a pain in the soul, a pain in the deepest part of our being, often without a name or any recognition. By diving into his dream with him, that nurse enabled Pete to heal his deepest hurt, and that healing allowed him to die in peace.
De Profundis
Amongst the population is a cohort of people whose quality of life is affected by the complex difficulties of multiple illnesses, long-term frailty and very limited life choices. Some of them were born with complicated disabilities, many others have acquired a collection of conditions during their lifetime, and of course the very oldest are often those who have the greatest number of life-limiting conditions. Some have entirely physical limitations; some have conditions affecting their ability to think and respond; some have both.
The seriously sick, and the chronically frail, live altered lifestyles with plenty of time to contemplate the impact of the changes in their lives. Some who look exhausted retain an inner vigour and zest for life; some who seem relatively well are unbearably challenged by the loss of their previous fitness. Only by listening to these people can we understand their perspective on living with illness, disability or frailty. Each is like a book recording a rich life story, that cannot be judged simply by its cover.
My son is playing his favourite music, an eclectic mix of Beethoven and banging beats. Struggling with my paperwork, I am hot and bothered. Can’t he use earphones? As I prepare to negotiate, I am transported to another room, a decade ago, and a different blaring radio. Time slips away; I am back in the hospital ward with Mrs Liang, her radio, and her noisy neighbours.
Mrs Liang was ninety-eight years old. She grew up in Malaysia, and came to the UK to study as a young woman, at a time when few British women and even fewer Malaysian women took degrees. As a professor of economics she wrote a world-changing book about debt and the developing world. This was a woman with a mighty mind.
She retired at seventy, but continued to campaign about Third World debt, addressing international meetings until her early eighties, when her husband died. After that Mrs Liang–Professor Liang–was alone. Her health began to fail. She had osteoporosis, and the thinning of her bones led to a series of painful fractures in her spine that reduced her height, bent her forward and limited her mobility. Poor circulation caused by diabetes led to ulcers around her ankles that confined her to a bed or chair. In her nineties she developed cataracts that prevented her from reading, which had been her passion, and she opted to move into nursing home care because she was unable to bathe, feed herself or get in and out of bed without help. At ninety-five she developed a tremor in her hands, and Parkinson’
s disease was diagnosed. The tremor meant she could no longer use utensils to feed herself, or use her radio unaided. She had been slowly losing weight over a few years. Her mighty mind was carried in a body that was wearing out. She was known to our hospital’s diabetes clinic, neurology team and musculoskeletal service, but none of these departments could meet all of her needs.
I first met her when she was admitted to hospital via the emergency department, where her nurse asked for palliative care advice. Monique, one of our nurse specialists, and I went to ED to assess her.
The ED nurse, Maria, explained that our advice was needed about an elderly lady with pain in her back who had started screaming, which was upsetting the other patients in her bay. ‘She’s obviously upset, but we can’t communicate with her,’ said Maria. ‘There’s a carer with her from her nursing home, but she says this happens from time to time and they never know what to do either.’
Maria recites Mrs Liang’s enormous drugs list: treatments for high blood pressure, for underactive thyroid, for her thinning bones, for her Parkinson’s disease. It is a struggle to eat, but every day she must swallow three or four small ‘meals’ of pills.
Maria nods as Monique comments on the pills problem. I am reminded of an elderly woman I looked after as a very newly qualified doctor, who had a similar list of multiple ailments and associated remedies. ‘How do you remember to take them all?’ I had asked her, having diligently written down the formidable list of water tablets, heart pills, steroids and vitamins in the morning, more heart tablets and a thyroid pill mid-day, steroid at a lower dose, plus more heart pills late afternoon, and an assortment of other medications at bedtime. More than thirty different tablets every day.
She had winked at me with a puckish grin, then asked me to pull her shopping bag out of her bedside cabinet. Sitting forward on the bed, she unzipped the bag and extracted a huge glass jar, sold by a famous brand of confectioners for their Christmas selection, that was one third full of a pick-and-mix variety of loose tablets. I recognised the purple thyroid pills and some capsules for blood pressure amongst myriad white, blue, yellow and pink pills: discs, lozenges, squares and tiny spheres, some plain and others with letters or numbers stamped onto them.
With the End in Mind Page 27
