I saw that unforgettable hair shining across the hospital ward, and recognised her before she realised who I was. Her face was swollen by high-dose steroids for her headaches; she had a compression stocking on her right leg and the remaining four toes on that foot, swollen, shiny and disconcertingly purple, stuck out of the elasticated cuff. Pale and thin beside her sat Andy, disintegrating like Dorian Gray’s portrait while she beamed at me with an inner splendour despite her ruinous disease.
‘Well, doc! Long time, no see! What a surprise!’
It is to me, too, I thought apprehensively.
‘Well, it’s been a busy time since I saw you last,’ she announced. ‘Look! Andy and I got married!’ She held up her left hand for me to inspect her engagement and wedding rings, a rather splendid interlocking arrangement of jewellery clearly made specifically for her. So you did achieve that plan. I was relieved that she had accomplished some of her dream in time.
‘Bit of a hiccup with the melanoma thing, though,’ she continued breezily. ‘I got a few lymph nodes in my groin and there’s a bit of melanoma in them, so I might need a little dose of chemotherapy. But there’s an infection in the wound. And you know’–she grinned conspiratorially at me–‘that they never give chemo when there’s a bug on board, so I’m waiting for the infection to clear first. It’s making my leg swell a bit. But I’ll beat this. You know I always do. Have you come to see me about the chemo?’
She paused to draw breath. Andy looked at me with wide-eyed anxiety, and the ward doctor also watched my face, clearly wondering how I intended to tackle this situation.
This was exactly the same coping style Sally had used of old: downplay the negatives, emphasise the tiniest positives, pretend it will all be fine, make plans for the future. She seemed unaware of her true situation, but a single glance at Andy told me that he was fully alert both to the devastation that was unfolding, and to his wife’s inability to contemplate it.
What will happen if I say ‘Hospice?’ I wondered. Will she find an excuse? Will she be shocked? Will she dismiss me? Will all her denial come crashing down around her? How on earth do I play this?
‘Well, congratulations on your wedding,’ I began. ‘It seems like a lot has happened to both of us since we last met. You’ve got married, and I’ve changed careers…’
‘Aren’t you a doctor any more?’ she asked, surprised.
‘I’m a different sort of doctor now. Good old Professor Lewis is still trying to find the cure, and I hope he does, but in the meantime I’m trying to get to grips with tricky symptoms like headaches and nausea and breathlessness. Things that make people feel unwell.’
‘Well, I have ALL those symptoms!’ she almost squealed–perhaps disinhibited by her steroids, or by nervousness as I brushed too close to her own problems.
‘Then maybe I’m the right doctor for you just now,’ I said. Andy’s head nodded gently in agreement behind her; the ward doctor dashed away to answer his pager.
When I asked her what she believed the current problem was, she replied, confidently and without hesitation, ‘It’s all down to this infection.’
‘Do you ever worry, even for a fraction of a second, that it could be something more serious than that?’ I asked her gently. Oh, this feels like very thin ice…
‘Of course not–I have Plans!’ was her immediate, calm response. ‘I will get better. I will beat this. I mean, I’m not stupid. I know there’s cancer in there. It’s just that as soon as the infection has gone, I’ll have chemo and beat the cancer. Because it’s time we had those little redheaded babies. I’m not getting any younger! And neither is Andy.’ She reached out, took his hand, and squeezed it reassuringly. ‘I’ll be fine once I have the chemo.’ Andy bit his trembling lip.
So, this was complete denial. I had read about it. I had discussed it with our liaison psychiatrist. But I had never before met denial as rock-solid as this. In the face of overwhelming disease and week-by-week deterioration in her health, Sally had found an alternative explanation that allowed her to maintain perfect equanimity, even optimism.
Over a series of cautiously phrased statements, I explained to Sally that I work in a place that specialises in symptom management, and that some of our patients just come for a while to be made well enough for further treatment. I was about to go on to say that others are sick enough to die, but she interrupted me.
‘That’s what I need!’ she declared. ‘I need to get well enough to come back here for my chemo. Where do you work, then?’
Gulp. I’m going to have to say it.
‘Have you heard of the hospice?’ I asked her.
She smiled. ‘Yeah! They looked after Andy’s gran last year. They were fab. Do you like it there?’
‘I love it. It’s a great team. And I know they would love to help you. Fewer headaches. Less breathlessness. How would you feel about coming across this week?’
I can’t believe she’s remaining so calm.
‘It sounds ideal,’ she said. ‘It’s much easier parking. Andy can come for longer, and my parents can visit more easily too. And then, when you’ve made me feel better, I can come back for my chemo.’
So, two weeks ago Sally came to our hospice for symptom management, hoping every day to become well enough for further chemotherapy whilst every day becoming weaker, slower, more limited by breathlessness. We were able to maintain her physical comfort, but her emotional distress was barricaded behind the walls of denial that she maintained despite all the evidence. Until today.
Entering Sally’s room, Nicola, another nurse and I find Sally in restless motion. Her mum has helped her to change her T-shirt; the men have gone through the French windows onto the patio outside, where Andy is smoking a cigarette. Sally rubs her hands, licks her lips, rubs her eyebrow, gathers and drops and regathers her hair. As she does so, she speaks constantly. ‘I just need a bit of fresh air. I don’t want you to turn the light out. Mum? Mum! Stay here. Where’s Andy? When will this infection get better? I want to get home but there’s too many stairs. Howdy, hello girls’–to us. ‘Did you see I tried to drown Nicola? Sorry about that! Are you drying out?’
Nicola holds a glass of water and helps Sally to take her evening medications while the other nurse and I change the wet bed. Then the two nurses expertly guide their weary patient onto the clean, dry sheet, plump up her pillows, adjust the headrest, and there she is, sitting up with her painful leg supported on cushions and her auburn halo scattered across the pillows.
‘Sally, what’s happening?’ I ask her, taking a seat on the arm of her bedside chair so that our eyes are level.
‘Same as ever,’ she says. ‘Waiting to be ready for my chemo.’
‘How’s your breathing?’ I ask, noting that she is panting slightly.
‘All right. I get a bit breathless when I feel impatient. But that’s normal, right?’
No, it’s not normal. But she doesn’t want to hear that.
This is a tricky situation. Sally seems agitated and anxious, yet she declines to admit even to the idea of that anxiety. We have all (except Sally herself) noticed that she has been far more sleepy for several days, taking daytime naps with ever-decreasing levels of energy in between. The staff have recognised that she is beginning the process of dying, but she absolutely does not want to discuss any outcome other than getting well enough for chemo, having babies and living happily ever after with Andy. Today she can barely hold a glass of water. Her anxiety is driving restlessness that uses up what little energy she has, and her fear is fighting the slow creep of unconsciousness. We have drugs that can take the edge off her anxiety, but I am aware that by reversing her distress, we may allow her to drift into dying.
I also know that she is exhausted, agitated and unable to relax. I know that a small dose of sedative will relieve this exhausting agitation, but I am unable to ask Sally for informed consent because she cannot, will not, accept the facts of the situation. I decide to give a tiny test dose of the anti-anxiety drug, and to plan
our next move when we see whether or not it reduces her agitated restlessness.
We chat as we wait for the half-tablet to dissolve under her tongue.
‘Sally, how are your energy levels today?’ I ask, wondering whether she has observed the changes in herself.
‘Oh, not great. But I have a lot of sleep to catch up on from when the pain was bad. I do keep dozing off… Could it be the morphine, do you think?’ She shuffles her position and begins restlessly gathering and dropping her hair again.
‘Well, morphine sometimes makes people a bit woozy for the first few days, but you’ve been on this dose for two weeks, and it wasn’t making you sleepy before. So I don’t think it’s the morphine. I think it’s more likely that you’re a bit less well–’ (testing…) ‘and needing a bit more sleep.’ Will she pick up that cue?
‘Well, when do you think I can start that chemo? My pain is better and my nausea has gone, so things are definitely getting better. I’m going to beat this cancer, you know.’ No, she is not taking the cue. Denial still solid. What astonishing self-protection!
I am not prepared to storm her defences and leave her open to the full realisation that death is now very, very close. Somehow, our team will need to work with Sally’s family to manage her dying while preserving her denial. And, of course, this means that there will be no chance to say goodbye.
I ask Sally’s permission to talk to her family in a quiet room down the corridor.
‘They can talk here!’ she proclaims.
‘Of course they can,’ I agree, ‘but in my experience, lots of families feel better if they can talk to the doctor in private. They can get stuff off their chests. Please may I take them away? Nicola will stay here with you while we talk.’
‘Well, I’ll want a full report when you all get back!’ says Sally. But I know she will find a way of avoiding that report.
I take the family to a quiet room around the corner, where they confess to each other that they think Sally is dying, and I confirm their suspicions.
‘Do you think she realises?’ asks her mum, tearfully.
‘What do you think?’ I ask.
She twists a handkerchief around her fingers as she looks searchingly at her husband. He shakes his head and looks at Andy. Andy looks at the floor. There is a silence. Then Sally’s mum says, ‘She knows, but she doesn’t want to talk about it.’
The men stare at her, and I encourage her to say more.
‘Sally can’t bear it. She can’t bear the sadness. She can’t bear the fear. She can’t bear us to be sad. So she’s looking the other way. And we have to help her to keep pretending.’ She looks pointedly at her husband and says, ‘Her dad thinks we should be honest with her. But I think we’ll break her if we do that.’
Andy looks up, gazing into the middle distance somewhere, and says, ‘I agree. It’s like when I’m doing an extreme climb. Part of my mind knows that if I fall, I’ll die. But thinking about the danger will only make it more frightening, and more dangerous. I need to focus on the rock, on my grip, on my feet, on the wind, on the rope–everything except the danger. That’s what she’s doing now, focusing on everything else…’
‘Andy, that’s genius,’ I exhale with relief. He understands, and his metaphor can carry the family through this challenge. ‘It’s as though we are all supporting her to keep her focus on what will help her most, and that is staying calm. So we can be truthful’–her mum looks startled–‘but not with the whole truth.’
To explain further, I suggest that they can truthfully tell her how much they love her, how proud of her they are, what memories from her life so far they treasure, what kindnesses of hers they have appreciated. These are all parts of the Last Messages that we observe around many deathbeds, and yet they are not Goodbye.
‘And if she wants to talk about a future we cannot see,’ I continue, ‘then we will simply encourage her. She has names for her unborn children’–her mum sobs loudly, and is consoled by a gently patted shoulder, which is all her husband can reach–‘and plans for future holidays. If they help her not to look at reality, then we will just allow her to choose where to focus. Can we all support that?’
Everyone nods. We head back to Sally’s room. She is now sitting in her chair, and is clearly less restless, although she looks a little bit more sleepy. She doesn’t ask us what we talked about. Andy has captured her dilemma perfectly, and the whole family is on-script. Nicola and I leave the room, and Sally says, ‘See you tomorrow, doc!’
When I arrive in the morning, Nicola meets me on the corridor to tell me that Sally’s glorious sun has finally set. She was still planning to beat this thing as she lapsed into unconsciousness.
Hat
People are not limited so much by their illness as by their attitude to it. The illness may present physical challenges, but the emotional challenge is often far more important. Our human spirit may stumble as the path ahead appears too daunting, yet with support and encouragement, our resilience can be re-enabled and used to find creative solutions. We are all individuals, and one person’s plan may not be a good fit for another who, outwardly at least, appears to be in a similar situation. Enabling people to be architects of their own solution is key to respecting their dignity. They are only in a new phase of life; they have not abdicated personhood.
Penny was choosing a wedding dress in a rather refined shop with her mum, Louisa. As she reached out to straighten Penny’s veil, Louisa felt her hipbone snap with a loud crack. She went very white and passed out on the powder-pink carpet, and there was a flurry of ladylike panic as the grandes dames of the trousseau tried to ensure that their prostrate customer didn’t crush any dresses. They also thoughtfully rang for an ambulance, so by that evening Louisa was in an orthopaedic ward with her leg immobilised and a diagnosis of cancer secondaries in her hip, from a breast cancer treated several years previously. Penny hadn’t chosen a wedding dress either.
Louisa did not thrive on her orthopaedic ward. In the late 1980s a broken hip was initially managed by holding the broken bones in position using a series of weights and pulleys to pull against the strong muscles that anchor our legs to our pelvis, because if the thighbone breaks, those same muscles unhelpfully pull the bone shards painfully into the soft tissues of the thigh. Fit, young patients with sports or trauma injuries might then be offered a hip replacement, but cancer patients would be offered radiotherapy and weeks of immobility to see whether the bone would reunite to allow walking again.
Louisa realised that she would have to spend her daughter’s wedding day in hospital, in a nightie, with her leg suspended in mid-air. This is not a traditional look in wedding photographs. She was devastated, and missing the wedding was worse news than knowing that her cancer was back, and was now incurable. She pined, declined, lost weight, wept, and descended into a deep, intractable depression. Fitter patients with hip injuries came in for surgery and left walking with crutches, while Louisa stopped colouring her hair and let her grey roots start to show, lost interest in make-up or even discussions of wedding dresses, and adopted a helpless, hopeless gaze. The nursing team, affected by her hopeless helplessness, reduced their contact time as their attempts at cheery banter were rebuffed. Louisa became an isolated, lonely and frightened statue.
Millie was a childminder whose most recent employers no longer needed childcare. She was relieved; she was sixty years old, and feeling more like ninety. Her left hip ached at night and clicked as she walked, hurrying after children made her breathless, and Millie decided that her working days were over. She lived alone, socialising with her many friends from the local Nigerian community with whom she swapped stories of home and compared recipes with ‘work arounds’ using British ingredients to cook the soul food of her home country. One of her friends noticed that Millie was limping, and advised her to see a doctor. Millie didn’t like doctors. ‘They tell you that you are ill,’ she protested, ‘then they suggest all sorts of treatments. Ever since I arrived in England, I have avoided doctors.
That is why I have been so healthy!’ Despite having lived in England for forty years, Millie retained her lilting Nigerian accent, and she accompanied her declaration with a throaty, contagious laugh.
In fact, Millie was avoiding doctors because she had a weeping sore on her right breast, and she was embarrassed about it. She bathed it and dressed it twice a day, but it was becoming bigger. She was a single lady, a tidy and careful person, and she thought a doctor might think that she was not clean. It was only when, with a loud bang, her hipbone snapped while she was choosing hair oil in the city’s ‘Nigerian supermarket’ that she was forced to see a doctor by being conveyed to the hospital, with many of the other customers in support, by the shop owner’s son in their delivery van. Millie’s X-rays showed that not only was her hip broken, but many cancer deposits were dotted about her other bones. Suspecting a possible breast cancer, the casualty department doctor examined her for lumps. She found the dressing and, after gentle persuasion, Millie revealed her shame.
‘Oh, Mrs Akonawe, this must be so sore for you!’ said the doctor, and Millie immediately felt safe. This kind lady knows I am clean, she realised, and now she will help me.
Responding to the doctor’s calm questions, Millie described how the ulcer had begun more than two years previously as a tiny lump. ‘I thought it was an insect bite,’ she said, ‘but it just got bigger and then opened up.’ The doctor examined Millie’s armpit, found hard, swollen glands, and asked whether her arm had become swollen. ‘My fingers swelled so that I had to remove my mother’s wedding ring,’ replied Millie, ‘and I wear it now on a chain. My skin feels thick down that arm. I do not know why.’
With the End in Mind Page 8