With the End in Mind

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 I, 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.

‘Have you looked out of the windows here?’ he asks eventually.

Oh no, is this about the view of the cemetery?

‘Yes …’ Cautious response. Where are we going?

‘So you know how high it is, right?’ he drawls.

I do. I climb those stairs many times a day.

‘And you know I’m a climber, yeah?’

Yes …

‘I’ve been thinking. I don’t need to wait. It’s an easy traverse from the window ledges to the corner of the building. If you dropped from there, you’d hit the concrete full-on. Like, over in a second. Bam!’ His extended arm bangs the bed, and I jump.

Oh, dear goodness: he’s worked out a suicide plan to avoid waiting to die.

‘You’ve been thinking about that a lot?’ I ask, holding my voice as steady as I can.

‘First thing I noticed when I arrived. Then I checked the stairwell too. But too many things to hit on the way down – too narrow. Outside’s better.’

‘And when you think about that, how does it make you feel?’ I ask, dreading the reply.

‘Strong again. I have a choice. I can check out – bam!’ – he whacks the bed again, but I am ready this time – ‘any sweet time I choose …’ He lolls back on the pillows, grinning and locking his eyes on mine to assess my response.

‘And do you think you might need to do that … um … soon?’ I ask, desperately wondering how I would summon help if he bounded out of bed now and tried to squeeze through the window.

‘Nah,’ he smiles. ‘Not now we know the bugger’s on the run. But if it comes back, I won’t hang around for it to mess with me.’

‘So should I be worried about you doing it this week?’ I ask, but he is sliding back into sleep. Within minutes, he is snoring. Tomorrow I will need to ask the liaison psychiatry team for advice, but for tonight I can see that Alex is too sleepy to move from his bed. I can go home.

The bedside phone rings in the early hours. Stupid with sleep, I answer the hairbrush before identifying the phone set. I can barely say ‘Hello …’ before the voice of our night-time charge nurse interrupts me.

‘Alexander Lester!’ he barks – he’s ex-army. ‘Bleeding both ends. Have called ICU team. Just letting you know!’ The phone rings off.

What? What has happened? Why is he bleeding? His blood counts were fine. He must have done something. Has he jumped? Oh, hell – what if he’s jumped? Where are my shoes? Car keys? What’s going on?

It is a five-minute drive to the hospital, less at 2 a.m. with no traffic. I park in an ambulance bay and run up the stairs to avoid the Lift of Unreliability. Panting and sweating, I arrive on the ward to find the charge nurse striding along the corridor.

‘Ah, Dr Mannix, ma’am! Patient has been transferred to ICU as I came off the phone. Blood pressure unrecordable. Fresh red blood in vomit and per rectum. Extra IV access established and fluid resuscitation commenced. Family informed. Anything else, ma’am?’

‘What happened?’ I ask, bewildered. ‘Did he jump? Where is he bleeding from?’

‘Jump? JUMP?’ barks the charge nurse, and I myself jump, as if commanded. ‘Whaddayamean, jump?’

I take a deep breath and say, ‘Just tell me exactly what happened,’ as calmly as I can.

The nurse describes how Alex was restless around midnight, then asked for a commode, then passed a very bloody motion and dropped his blood pressure, then began to vomit what looked like fresh blood. No jumping. If I knew he was considering it and took no action, it would be my fault. Mixed waves of relief and alarm struggle for supremacy, and are trounced by a tsunami of guilt: I am worrying about myself when Alex is in ICU.

‘Looks like he’s having a massive GI bleed,’ continues the nurse. ‘Blown through to a major blood vessel if you ask me.’

That doesn’t sound good. Ascertaining that I am not needed for other patients in the cancer centre, I am propelled by a mixture of concern and shame up the over-illuminated hospital corridor to ICU. They have called Alex’s consultant oncologist, who is on his way in.

Alex lies on his side, unconscious; the room smells of bloody poo, a sweet, clinging aroma that I recognise and dread. He has two drips, one into a neck vein; his monitor shows a rapid pulse with a very low pressure. This is bad. A nurse keeps pressing the ‘low pressure’ alarm to silence its insistent shrieking. Pale beside the bed sits his mother; alongside her, a young man (‘Roly,’ he says briefly) looking very like a second Alex is shredding a polystyrene coffee cup. The ICU consultant is in the room. She is explaining that Alex has lost a huge amount of blood, that they are waiting for a cross-match from the blood bank because he must have virus-screened blood during his chemotherapy, that they are giving clotting factors and plasma, but that he is very, very sick, and not fit enough for surgery to try to stop the bleeding. This is really bad. We are curing his cancer – how can this be happening?

And then Alex’s head is thrown back, almost as though it is a voluntary movement. A huge, dark-red python slithers rapidly out of his mouth, pushing his head backwards as it coils itself onto the pillow beside him; the python is wet and gleaming and begins to stain the pillowcase and sheets with its red essence as Alex takes one snoring breath, and then stops breathing. His mother screams as she realises that the python is Alex’s blood. Probably all of his blood. Roly stands up, grabs her and removes her from the room, accompanied by the nurse. Her sobbing screams become more distant as she is led away to a quiet room somewhere.

I am stunned, paralysed by horror. Is this real? Am I still asleep, dreaming? But no. The coiled python is collapsing into itself like a large, maroon blancmange. Alex would appreciate the dense colour, the changing texture, the dark-meets-white on the bedding. Shouldn’t we do something? What?

The ICU consultant seems to be far away, as though on a cinema screen, as she checks Alex’s pulses and says, ‘Not a good way to go …’ Attempts at resuscitation would be futile. She shakes her head, then offers me coffee, which seems strangely calming, and I accept. We meet Alex’s oncologist as he arrives, and sweep him up with us to the staff room for coffee and debrief. The oncologist has seen this before: beads of tumour that have glued gut to large blood vessels, shrinking to leave a hole as the cancer responds to the chemotherapy, channelling the whole blood volume out of the body. It is rare but recognised, and untreatable if the bleeding is massive.

And I keep thinking, He didn’t want to see it coming. He got his wish.

Yet I know that, after the serpentine blood clot has been removed, the bedding changed and Alex’s body washed, and his family are allowed to see him to say goodbye, they will find no comfort in the notion that he will never need to jump from a high building to escape the fear of knowing that he is dying. Alex has left the building, without ceremony or leave-taking. But the absence of farewell will be a lifetime burden for the little family of heroes.

And in the morning, we will need to tell the Lonely Ballroom occupants that Alex has finished his treatment.

This was a hard story to tell, and probably shocking to read. While most dying is manageable and gentle when it approaches in an anticipated way, the truth is that sudden and unexpected deaths do happen, and not all of them are ‘tidy’. Although loss of consciousness during a sudden death usually protects the dying person from full awareness of the situation, those around them retain memories that may be difficult to bear.

Bereaved people, even those who have witnessed the apparently peaceful death of a loved one, often need to tell their story repeatedly, and that is an important part of transferring the experience they endured into a memory, instead of reliving it like a parallel reality every time they think about it.

And those of us who look after very sick people sometimes need to debrief too. It keeps us well, and able to go back to the workplace to be rewounded in the line of duty.

Last Waltz

The vigil around a deathbed is a common sight in palliative care. In some families it is peaceful; in some there are rotas and care-for-the-carers as well as care for the dying; in some there is vying for position – most bereaved, most loved, most needed, most forgiven; in many there is laughter, chatter and reminiscence; others are quieter, sadder, more tearful; in some there is only a solitary sitter; occasionally it is we staff who keep the vigil, because our patient has no one else. So I had seen it many times before I had the perspective-changing experience of sitting at the bedside of someone I loved dearly, and would miss greatly, for the first time.

Well, this is unexpected.

The room is dark. A nightlight above the door casts a dim glow over the four beds and their sleeping occupants. Occasional muttered mumbles or stertorous snores from the other three beds emphasise the silence of the white-haired woman in the bed before me. I am perched on the edge of my chair, gazing at the pale face on the pillow, her eyes closed, her lips moving gently with each breath in and nostrils flaring briefly with each breath out.

I am searching her face for clues. A slight flicker of an eyebrow movement – is she wakening? Is she in pain? Is she trying to speak? But the metronome of the breath in, breath out continues unflurried. Unconscious; unaware; untroubled.

This is my grandmother. She is nearly one hundred years old. She has seen wonders in a lifetime lived in step with the twentieth century: as a girl, she watched as the lamplighter lit the gas lamps outside her home, and admired the dresses and evening capes as her neighbours boarded horse-drawn hansom cabs for a night on the town; as a teenager, she saw her brother falsify his papers to be allowed to fight in France, and welcomed home the hollow remnant of him that returned, twitchy and restless, after six months as a prisoner of war carrying German shells to their front line; as a young wife she saw the Great Depression, the death of one son from a disease now prevented by routine infant immunisation provided by the National Health Service, and later the death of her husband from an infection now treated simply by antibiotics that had yet to be invented then; she accompanied her remaining children into evacuation in the countryside during the Second World War, working in a munitions factory where the women on the production line twisted the detonator wires of occasional bombs in the hope that civilian lives in Germany would be spared; and then returned to her inner-city home through which an unexploded German incendiary bomb had dropped, its own detonator inactive thanks to unknown sisters in Germany. She saw the birth of the NHS; her children had access to higher education; she watched men walk on the moon. She is the matriarch of a family that now counts four living generations. And she is dying.

She draws a sharp breath in, and mutters on the out-breath.

‘Nana? It’s all right, Nana. We’re taking you home tomorrow. You can sleep now. The rest of us are here.’

I listen. I mean I really, really listen. Are there words in the muttering? Is she dreaming? Is she awake? Is she afraid?

The monotonous rhythm of unconscious breathing returns. I sit and gaze, searching for clues in this dear, familiar face.

I have seen families keeping this watch, maintaining this searching vigil, many times. I have been working in palliative care now for eleven years, watching deathbeds on a daily basis. How can I have been so unaware of the deep, analytic attention of the families who sit and wait? This is not a passive activity; I am actively, keenly alert, probing her face for clues, interrogating every breath for evidence of – what? Discomfort? Contentment? Pain? Satisfaction? Serenity? This is the vigil, and suddenly I am encountering its familiar pattern of gathered family, and sitting rotas, and detailed reporting of almost no information, from an utterly new and unexpected perspective.

I happen to be in my home city to deliver a lecture. I was delighted to accept the invitation, because it would give me a chance to stay with my parents and to visit other family members. Then, while I was on my way here a few days ago, the family called from the hospital to ask me to divert my journey. Instead of sharing a meal at my parents’ home, we assembled in a cubicle in the city hospital’s emergency department around Nana’s uncomplaining smile. Here, her back pain was assessed, her large but unsuspected colon cancer was finally identified, a bed was found in this bay, and once I had managed to convince the shiny, newly qualified ward doctor that painkillers would be appropriate, the hospital’s palliative care team arrived to give their expert and welcome advice, so that I could be simply one of her grand­­­children.

The next day, we palliative care professionals met again at the conference they had invited me to address. I stepped out of ‘family anxiety’ and into ‘conference speaker’ mode for two welcome hours of respite from my sadness, leaving a small posse of the family with Nana. The speaker after me was a social worker whose moving talk about bereaved families pierced my armour; I paused in the ladies’ cloakroom to remove the mascara stains from my cheeks, and rushed back to the hospital. The posse reports that Nana has had ‘tests’. She has widespread cancer. She wants to return to her nursing home, because it has a chapel and being close to God is her top priority. She is not alarmed – she has been preparing to die for decades, and has astonished herself with her own longevity, the solitary survivor of her generation and lonely for beloved people she has not seen for many years.

The news of the cancer had an interesting effect on Nana: almost as though she had been waiting to know what would bring about her eventual death, she seemed so relaxed that several family members wondered whether she had really understood the news. But this is the wisdom of a long life: none of us is immortal, and every day brings us closer to our last. In her eighties, Nana had a stroke that affected her use of language. She lost words, and substituted others in ways that sometimes made her speech impenetrable, and on other occasions was unintentionally wildly comical. Her mobility became limited too. She accepted these burdens with determined stoicism. In retrospect, I suppose she expected that another, fatal stroke would rescue her from living a limited life, but here she is more than a decade later, still talking to us about sausages and ‘You know, that … whatever …’ with a roll of the eyes that says, ‘Mm-hm! You know exactly what I mean!’ while we cast around for ways in which ‘sausages and something else’ might be relevant to the conversation about, for example, her new duvet cover or what she would like to send her great-niece for her new baby.

So now she knows. Not another stroke, but cancer. Painful pressure on her pelvic nerves has been giving her a pain ‘down there’ (rolls eyes) that she didn’t like to mention. She has been losing weight, and off her dinners a bit, but not enough to cause any alarm. When the palliative care team’s recommendations for the nerve-compression pain are effective, she is quietly pleased. ‘That was like a …’ – rolls eyes – ‘a …’ – eyes indicate ‘down there’ – ‘Polaroid,’ she explains, and while my aunt looks perplexed, my sister remains heroically straight-faced as she says, ‘Yes, Nan, like a haemorrhoid.’ The rest of us rummage in bags and pockets to avoid catching each other’s eyes and creasing with inappropriate laughter.

So, because I am here and I may not get another chance, I am in the watching rota. Last night I slept in my childhood bedroom in my parents’ house, and no one was on watch because Nana seemed comfortable and rested. But today, suddenly, she has begun to change. Sleepy and awake by turns; too weary to eat; accepting occasional sips of fluid; asking for the Pope. The priest came to visit; she was delighted. Fancy the Pope coming so quickly! Goodness knows how that conversation went, but she seemed very peaceful afterwards.

By evening it was clear that, her burdens laid down, Nana was preparing to die. A visitor from her nursing home, a diminutive and very experienced nursing nun, spotted the signs and asked her where she wanted to spend her last days – no beating about the bush. Nana wanted to ‘get home’, and the knee-high nun said they would expect her home tomorrow. The ward staff agreed to make the transfer arrangements. Nana smiled and slept and slipped into a coma. All things I have seen many, many times, yet never really seen at all.