With the End in Mind

by Kathryn Mannix

  The doctor explained to Millie that the ulcer might be something serious, and that the arm swelling was because whatever was causing the ulcer was also blocking the lymph glands under her arm. Millie was perplexed–what could this serious thing be? The doctor asked her about her energy levels, and Millie described how tired childminding had made her. ‘I could hardly keep up with those children! And when their mother took them home, I just fell asleep. I did not want to visit friends because I was so tired. Sometimes I did not even cook.’

  The doctor summarised their conversation, and as she did so, Millie began to see a pattern, a downward, frightening pattern. Reducing energy, breathlessness on exertion, a weeping ulcer, a swollen arm, painful legs, a sore hip. ‘Doctor, please tell me–do you think I have HIV-AIDS?’ she asked. The doctor was surprised; she had thought she was leading gradually to telling Millie about cancer. She had not anticipated this diversion.

  ‘Mrs Akonawe, do you worry about HIV? How do you think you might have caught HIV? Do you have a husband?’

  Millie shook her head.

  ‘Forgive my intrusive question, but when did you last have sex with a man?’

  Millie pursed her lips in surprise, and exclaimed, ‘Never, doctor! I am a virgin woman, an unclaimed treasure. I left a fiancé in Nigeria when my father brought us here, and I have never loved anyone else!’

  The doctor squeezed Millie’s hand, and nodded before saying, ‘Another way people catch HIV can be from a blood transfusion. Have you ever had a blood transfusion?’

  Millie shook her head. ‘Doctor, I have never been ill or had any treatment ever! I am proud of my fitness. Or I was… but now, I do not feel so fit. No, indeed, I do not.’

  ‘Well,’ said the doctor, ‘the other way people can catch HIV is by sharing needles for drugs. Do you use injected drugs, ever?’

  Millie smiled. ‘Doctor, I can see you are teasing me, because you know that I am not That Kind of Woman. You mean, my illness is not AIDS?’

  The doctor nodded, but added, ‘Not AIDS, but still something very serious.’

  Millie blinked. The doctor explained that her symptoms could all be explained by a breast cancer, starting in her ulcer, spreading to cause pain in her bones, swelling in her arm, and breathlessness. The cancer-weakened hipbone had then given way. Her hip was broken, and she would need several weeks in bed. Millie silently absorbed that information. ‘Will I die?’ she asked, after a long silence.

  The doctor said, ‘We need to find out whether this is cancer, and what sort of treatment would help you to get better. We’ll admit you to the orthopaedic ward, and they’ll strap up your leg and arrange more tests.’

  And so it came to pass. Millie was admitted to the orthopaedic ward with a broken left hip, and found herself in a bed next to a pale, withdrawn woman with a broken right hip–Louisa.

  The Nigerian supermarket crew brought ‘proper’ food in for Millie that evening, and Penny found there was something of a party atmosphere at the women’s end of the ward when she arrived with photos of the wedding dresses she had shortlisted to show her mum. Louisa simply wept, but Millie’s visitors spotted the wedding dress photos and immediately began to offer advice.

  ‘Look at you, so beautiful!’ said Millie’s next-door neighbour. ‘Big blue eyes and… yes, you get them from your mummy, anyone can see that. Millie, look, don’t these women have identical, beautiful eyes? You look more like sisters!’

  ‘What a beautiful bride you will be!’

  ‘I hope you are marrying a good man!’

  ‘What happiness! What a wonderful day you will have!’

  Louisa listened as these kind women give Penny the sort of talking-up every bride should get from her family, and she felt her heart break–like a physical snapping inside her chest, as she realised that she was now only a burden, and her illness, her brokenness, her misery, were all spoiling Penny’s joy. After visiting time, she turned her face to her pillow and wept for all her lost expectations. The night nurses discovered her weeping, and the following day they rang the hospice for advice. The leader did a ward visit, and proposed to Louisa that she might find her bed rest more pleasant at the hospice. Transfer was arranged.

  Whilst awaiting transfer, Louisa became ever more withdrawn and sad. Beside her, Millie held court and offered deep-fried plantain slices to the other ladies–a real hit. Visiting times were colourful and vibrant, with Nigerian food and loud prayers being celebrated around Millie’s bed. By now, Millie’s breast cancer had been confirmed, and both she and Louisa were wheeled downstairs for radiotherapy to their broken hipbones every day. Millie seemed surprisingly joyous. She was hugely relieved that she ‘only had cancer’ after her fear of AIDS. She had also started tablets that were reducing the size of her ulcer and the swelling in her arm, and she had never been so tenderly looked after in her adult life. Hospital seemed like a good start to her retirement.

  Penny was gratified when her mum settled into the hospice and allowed a psychiatrist to visit her. Treatment for her depression began, a combination of a new ‘talking treatment’ called cognitive behaviour therapy (CBT), and some tablets that had made her sleepy, so she declined to continue them. The CBT challenged some of her hopelessness, and encouraged her to try mini-experiments to check whether or not her feeling of helplessness was actually justified. Cautiously, she began to re-engage with daily activities: she agreed to let a hospice volunteer give her a manicure, and loved the restoration of her hands with bright nail polish. She asked the hairdresser to retouch her roots. She asked Penny to bring in her make-up bag. She even asked for her bed to be wheeled into the garden so she could watch the birds. It was there that she smelled deep-fried plantain and heard Nigerian music coming from another bedroom, and so discovered that Millie was also in the hospice.

  Millie was delighted when Louisa asked to be allowed to visit her. Millie’s hip pain had not settled well after her radiotherapy, and she had been transferred to the hospice for pain management. She was in a single room, and felt lonely. Louisa was wheeled along in her bed, and they discussed recipes, the contrast between hospital and hospice, their collapses in shops when their hips broke, Penny’s wedding, and Louisa’s sadness that she was going to miss it–and then Millie had an idea.

  ‘The day after you left the hospital, a young doctor come to see me and he aks me if I want to join an experiment. He aks me if I want a new hip joint to take away my pain. But I feel too old, I tell him thank you and no thank you. He tells me his team is finding out if putting in a new hip is a good treatment for cancer. Why don’ you find out if that could work for you? Those girls on that ward, they was walking on their new hips, wasn’t they? An’ if you could walk, you could jus’ glide down that aisle with your beautiful daughter…’

  Millie did excellent public relations for the orthopaedic department’s clinical trial, and the next day an excited Louisa asked the nurses whether she could have surgery for her hip. The leader gave me the job of asking the orthopaedic team, who had not offered Louisa a place in the trial because her mood was too low for her to engage with the consenting process. When they heard that she was keen, a research nurse and doctor were with us within an hour, and less than three weeks after she had arrived at the hospice, Louisa was on her way back to the hospital for surgery. It was a gamble, but with her immaculate hair and shining nails, she was ready to fight. Her experiments with CBT had restored her sense of purpose.

  One week later, Louisa arrived back at the hospice with a new hip and a lot of stitches. Instead of lying in a bed, with ropes and pulleys attached to her leg, she arrived in a wheelchair followed by Penny, holding a walking frame. ‘You can hide that thing,’ Louisa told her. ‘I am not being seen with a walking frame!’

  Louisa and Millie were now in adjacent beds in a four-bedded bay, and Millie’s pain was settling. They were both visited by the physiotherapist each day, Millie for exercises to keep her good leg supple, and Louisa to begin the task of walking on her new hip joint. Loui
sa kept up a stream of distracting chat while Millie carried out her uncomfortable exercises, then Millie acted as a commentator as Louisa gained command of elbow crutches, and then her (much despised) walking frame, taking just a few steps initially, until she could raise herself to a standing position from a chair, and walk across the bedroom as far as the bathroom door.

  The hospice receptionist popped her head into the bay. ‘Louisa, there’s a couple of parcels for you,’ she announced. Louisa turned pink.

  ‘What have you done, girl? You look tickled!’ shouted Millie.

  Louisa smiled a sidewise grin, and said, ‘You just wait!’ to her friend before asking for the parcels to be brought to the room. And what parcels! There was a cardboard box the size of a cricket kitbag, and a huge cylindrical hatbox. Sitting in an armchair, and using her bed as a table, Louisa set to, pulling tapes and tearing ties until her packages were open.

  As we staff gathered to admire, a dark pink dress, a cream jacket, a silky cream-and-pink chiffon shawl, brand-new underwear, and a small box were produced out of the larger parcel. In the cylinder nestled a hat fit for Ascot Ladies’ Day, cream with dark pink trim, at least half a metre wide and utterly exquisite.

  ‘What’s in the little box, Louisa?’ asked the physio.

  ‘You won’t approve…’ said Louisa as she withdrew a pair of dainty, low-heeled cream sandals, ‘but this is our next target. I need to be able to walk down the aisle in these shoes in three weeks’ time. And nobody tell Penny! This is our secret, my big surprise.’

  The physio shook her head, smiling. There’s nothing like a motivated patient.

  The tradition is that a bride is married from her parents’ home, so a hospice single bedroom was made available as Penny’s dressing room on her wedding day. She was coming to the hospice straight from her hairdresser, and Louisa was going to help with her make-up and supervise her dressing in her gown and veil, aided by her two bridesmaids. Penny believed that her mum would be attending the wedding in a wheelchair with a nurse escort, so Louisa met her from her taxi in a wheelchair, already resplendent in her pink and cream finery, although not yet hatted.

  ‘Wow, Mum, you look wonderful! How on earth did you shop for all that?’

  Louisa smiled. Before she had collapsed in the wedding-dress shop, she had been discussing mother-of-the-bride outfits with one of the grandes dames. While Penny was being scooped into a particularly complex white meringue by a dame with a mouthful of pins, Louisa had fallen in love with this raspberry and cream affair, and had determined to try it on later. Later, of course, she was somewhat preoccupied with pain, pulleys and palaver as her wedding-day planning was crushed by cancer. It was only when the Nigerian ladies had modelled wedding enthusiasm in the orthopaedic ward that Louisa suddenly realised how far she had abandoned Penny, and how wide the gulf had become.

  Part of Louisa’s CBT work with the hospice’s visiting psychiatrist had been to contemplate ways in which that gulf might be bridged. Step by step, working towards a goal of ‘giving Penny all my love and support on her wedding day’, Louisa had begun by writing a speech to be read in her absence by a relative at the reception. She then visited the church with our physio, to discover that there was wheelchair access, so she would be able to attend the ceremony. This triggered a phone call to the grandes dames, who of course would never forget those particular customers, to ask if they could supply the coveted outfit, and add ‘a hat and shawl big enough to hide a wheelchair’–in which quest they had succeeded beyond her dreams. The idea of inviting Penny to dress at the hospice was another of those plans. With each step Louisa became more engaged in the wedding and in Penny’s planning. Her mood began to lift and her ambition to soar, a virtuous circle of engagement, planning, pain management and love.

  The bride and her mother emerged from the bedroom, with two bridesmaids in attendance. Penny’s simple, elegant ivory dress and trailing veil were set off to perfection by her radiant smile as she and her bridesmaids wheeled Louisa (well, Louisa’s hat–we couldn’t see Louisa) up the corridor towards reception. In the day room, a guard of honour of two rows of patients ranked in beds, wheelchairs and armchairs, attended by staff with cameras and hankies, applauded the wedding party to the door. Millie and the Nigerian ladies wept and sang, clapping and swaying to a wedding song from home. At the door, the mother of the bride asked her attendant to stop. The physio produced that walking frame, now decorated with the chiffon shawl, and Louisa rose to her feet. Nodding her majestic millinery, and smiling like a child at the funfair, Louisa walked her astonished daughter to the waiting limousine, to escort her to her wedding.

  What about ‘happily ever after’?

  Louisa was able to return to her home, living on the ground floor, after some further advice and innovative furniture placement by the hospice physiotherapy and occupational therapy experts. She was tired after the wedding, and began to discover that she no longer had the energy she was used to. As a single parent, she had always assumed that Penny’s marriage would open up possibilities for her own retirement, but now she found that she was limited to short bursts of activity, like walking to her local shop or a day out at hospice day care. She always popped in to see Millie on her weekly day-care visit, and she made a tour of the hospice with the wedding photographs. Louisa noticed that Millie was looking pale (‘Not an easy thing to spot!’ laughed Millie), and that she was often snoozing at the start of Louisa’s visits.

  Millie became more quiet after Louisa went home, and asked her visitors to come only in pairs to avoid exhausting her. The radiotherapy took effect so that she no longer needed the traction apparatus attached to her leg, and this allowed her to sit in a chair and be wheeled around the hospice gardens. Her appetite began to fail–even plantain crisps were no longer relished. Gradually, in continuing parallel, the two friends became weary.

  Two months after the wedding, Louisa developed pain in her other hip. X-rays showed thinning of the bone caused by another cancer deposit. Millie was beginning to lose her breath if she tried to talk too quickly, as the cancer deposits reduced the efficiency of her lungs. Despite these trials, every day she thanked her God that she did not have AIDS. Louisa was readmitted to the hospice for pain management and bed rest. The partnership was restored.

  Louisa died three months after Penny’s wedding day, and Millie the following week. With similar ages and almost identical tumour burdens, these sisters-in-arms had chosen very different ways to adapt to the challenge of a broken hip. Millie’s stoic acceptance of bed rest and traction had enabled her to live an engaged and outward-looking life despite her limited physical horizons. Louisa’s courage had demonstrated to the orthopaedic team the profound benefits of hip replacement, even in the last year of someone’s life.

  Hip replacement is now the treatment of choice for people with hip fracture caused by cancer. Much credit must be given to those early orthopaedic surgery pioneers, and to the lady in the cream hat.

  Louisa’s rapid response to CBT was astonishing, and it piqued my interest in this patient-empowering approach to managing emotional distress. A few years later I was to train as a cognitive behaviour therapist, and to discover the satisfaction of using CBT to enable palliative care patients to rediscover their inner resilience, to challenge their unhelpful thoughts and to take steps towards coping again in a life still to be lived, despite their advancing physical illness.

  Take My Breath Away

  Being a cognitive therapist as well as a palliative physician has enriched my practice. Outside the calm of the CBT clinic, though, during busy hospital ward consultations or at appropriate moments during a hospice ward round, opportunities would arise to use a CBT approach in a simpler way, to help a patient (or the clinical team) to gain more insight into a knotty problem.

  This led to referrals from hospital colleagues for a ‘CBT first aid’ approach to anxiety, panic and other overwhelming emotional distress.

  Whether CBT first aid or the full CBT intervention, the
core principle is that we are made unhappy by the way we interpret events. Distressing emotions are triggered by disturbing underlying thoughts, and helping a patient to notice these thoughts and to consider whether or not they are accurate and helpful is key to enabling them to change.

  ‘I’m not talking to a shrink,’ Mark greets me. It is Boxing Day on a respiratory ward. He is leaning forward, legs crossed and elbows protruding, all skin and bone, like a stick insect in an oxygen mask. His T-shirt, clinging to his sweaty chest, shows his protruding ribs and the suck of the muscles between the ribs with each panting breath he takes. This is a man on the edge–of what? Terror, anger, despair?

  ‘Lucky I’m not a shrink, then,’ I reply.

  He surveys me gravely. ‘They said you mess with people’s minds.’

  ‘It doesn’t look like your mind needs messing with,’ I say, and he rolls his eyes. ‘But your mouth is dry, isn’t it? And so is mine. Shall we have a cuppa?’

  We negotiate. If I prove to be capable of producing a decent cup of coffee (‘Five sugars, cream if there is any…’) then he will agree to talk to me, provided there is no ‘messing with his mind’. And if he says stop, I will stop. Leaving his door ajar, I make for the ward kitchen (just past the seasonal chocolate mountain) and discover the high-quality coffees and gourmet teas that have been given by grateful relatives for Christmas. Even squirty cream. Providential.

  How do we come to be here, when both Mark and I should be in our own homes celebrating Christmas? It’s like this. After several years of running a CBT clinic for palliative care patients, I began to see some recurring patterns. This was useful in applying a ‘CBT first aid’ approach while working in a busy hospital palliative care consultation service, away from the peace and protected time of the clinic. Among the patterns is the very human response of fear in the face of breathlessness. This is primal, a survival instinct (we talk about people ‘fighting for breath’) and an important reflex in saving us from environmental dangers like drowning, choking or smoke inhalation. However, that same reflex drives an exhausting battle when the breathlessness is caused by a life-threatening illness damaging our respiratory systems. Then, accepting some breathlessness and struggling less would make for more comfortable living towards the end of life.