With the End in Mind

by Kathryn Mannix

  Silly me. Keith opens the door to reveal that each table bears a body covered by a sheet, only the head and toes visible. Ruby is closest to us, and Keith asks the nurses to walk around and join him beside Dr Sykes. Facing them across the sheet that covers Ruby, I see that Sister is pale and Moira radiant pink. Dr Sykes is clad like a surgeon in all respects except that rather than clogs he is wearing big white rubber boots. I notice a covered tray on the draining board of the sink beside him, which I know holds the organs he has removed from Ruby’s body. We don’t have to watch the dissection; what a relief.

  Dr Sykes explains to us that he has already completed the first part of the post-mortem. Ruby’s body has been opened, and he was able to see lots of cancer deposits as he looked at her lungs, her liver and her guts. He beckons the nurses over to the draining board with the covered tray. I steel myself for their shock. He peels back the cover, to reveal a smorgasbord of purple and grey meat: liver, lungs, heart, intestines, kidneys. I see Sister rock back and reach for her handkerchief, but Moira moves to get a closer look. Dr Sykes points out the place in Ruby’s intestine where her original colon cancer had been removed and the ends rejoined–the tiny, glistening pearls of cancer studded along the shining surface, filling the lymph nodes; the cancer-ball projecting out of her liver, which he opens deftly with a long knife, dividing the liver into parallel slices and spreading them like a fan to show glistening white cancer deposits from golf-ball to pinhead size; the blizzard of tiny cancer seedlings throughout her lungs.

  Moira’s rapt attention is total. ‘White!’ she exclaims. ‘I never expected it would be white. I just imagined it would be red, or black–an evil colour. I’ve been looking after people with cancer inside them my whole career, and I never knew what it looked like…’ She stares intently, shaking her head in awe.

  Dr Sykes says he has found cancer deposits in Ruby’s spine, and I wonder aloud if this might account for the odd abdominal pain. He offers to show us the spine.

  ‘Where is it?’ asks Moira, still closely examining the contents of the tray.

  ‘Still inside her,’ replies Dr Sykes, moving to lift the sheet. Keith steps forward to help, and deftly folds back the sheet to the level of Ruby’s waist. Sister looks away, but Moira cranes her neck for a better view. We are looking inside Ruby’s ribcage.

  ‘Hello, Ruby,’ I say. ‘I’ve brought Sister and Moira to see what was causing all the bother.’

  Dr Sykes points to the spine, which looks like a line of children’s building blocks running down the centre of Ruby’s body cavity. One of the blocks is misshapen, and from it there glistens an odd protrusion, like a crystal in a rock: a cancer deposit. It is at the wrong level to account for her abdominal pain, but it explains why she had pain in her back.

  Dr Sykes asks for more detail about the abdominal pain, then begins to run his gloved fingers slowly along the insides of Ruby’s lower ribs. He stops and says ‘Aha!’ then invites us to put on a glove and feel in the same place. Beneath the eleventh rib on the right is a tiny lump, impalpable from the outside. The bottom of each rib forms a tiny protective gutter along which runs the slender, vulnerable nerve that transmits sensation from that segment of the body. In this particular nerve, in this tiny space beneath Ruby’s rib, there is a cancer deposit the size of a grain of barley. It is in exactly the right place to ‘scramble’ nerve messages from the segment of her trunk running from just below her umbilicus, diagonally up her abdomen, under the rib and around her back to the spine. This tiny, unsuspected deposit of cancer was responsible for Ruby’s pain. Nerve pain is always hard to describe, hard to bear, and often difficult to treat. Soft touch (like massage) or nerve stimulators in this segment would increase the sensory messages and the painful scrambling–just as we had seen in Ruby’s last weeks of life. We have our answer. Thanks, Dr Sykes. Thanks, Ruby’s family. Thanks, Moira.

  In the car on our way back to the hospice, Moira is ecstatic. ‘I cannae believe cancer is white!’ she says. ‘And who would ha’e thought there would be that tiny lump on her nerve like that? No wonder we couldnae stop her pain!’ There is no advocate like a convert, and the successful identification of an unsuspected cause of pain had converted Moira entirely to the value of post-mortem examination. ‘I’m so glad we have something tae tell her family,’ she says. ‘And we’ll always wonder whether weird pains might be nerve damage from now on–I just know this will help us to help more patients. That was just… well… it was incredible. I’m so glad I came to see.’ I am so grateful that the mortuary team has managed our visit with such sensitivity, and that Moira has such an open-minded passion for nursing.

  That was only the first of our post-mortem adventures. Moira’s advocacy ensured that all our nurses were aware of the value of finding out after death what had confounded our attempts at symptom control during life; she encouraged every nurse to attend a post-mortem if they could. Not all had such a Damascene conversion as hers, but all found it a help in understanding the illness that confronted them on a daily basis.

  These days, Moira is a senior nurse tutor in a university school of nursing. Her students are all encouraged to attend at least one post-mortem.

  Needles and Pins

  Legacy is a complex concept. Is our legacy a tangible object? Is it the memories of us that other people reflect on? Is it the difference we have made in other people’s lives? And how can a teenager create a legacy? Well, here’s one who did. This story is another piece of it.

  Sylvie is nineteen. She is a drummer in a band. She was planning a career in music management, something to do with sound mixing and the technical manipulation of recorded sound. She likes loud music with a pounding rhythm, but she also writes haunting ballads with gentle, lilting melodies that remind her of being rocked to sleep as a child. She is an only child, a precious treasure to older parents who delighted in her birth, celebrated every milestone of her life, and are now preparing themselves for her imminent death.

  Sylvie has a rare type of leukaemia. She had gruelling treatment with chemotherapy for her sixteenth year of life (‘So missed out on GCSEs and alcohol. But still managed drugs and rock’n’roll,’ she smiles). After another year of trying to rebuild her stamina enough for her to return to school, her leukaemia relapsed, and this time treatment is not winning. Despite this, she is possibly the most smiley person I have ever met, made even more so by her dazzlingly white teeth (‘I’m the missing Osmond sister!’–smile) and her startlingly vivid choice of lipstick, contrasting with the snowy pallor of her face, and by the ever-so-slightly-sideways tilt of her Cleopatra-style black wig. (‘Oops! Adjusting headpiece!’–smile.)

  Sylvie’s leukaemia-producing white blood cells crowd everything else out of her bone marrow. The drugs that are applying a diminishingly effective brake on the leukaemic cells also damp down other, useful cells. This toxic combination of rampaging white cells and suppressive drugs reduces the production of red blood cells, making her anaemic (pale, lacking in energy, easily breathless), and of the tiny blood-cell fragments called platelets, that ensure cuts and bruises clot off quickly. Sylvie is surviving because other people give blood; she has a blood transfusion every week, and she needs transfusions of platelets on alternate days. Her survival is dependent on the kindness of strangers.

  This dependence on dripped-in blood products would usually mean that she had to live in hospital, because blood products can cause allergic reactions or fluid overload, so patients are monitored constantly during transfusions. Sylvie considers herself ‘lucky’ (smile) because although she is now legally an adult, she has a childhood-type leukaemia, and is still under the care of the region’s children’s cancer service. This provides nurses who will deliver transfusions at home if absolutely necessary, and when you are down to your last few months of life (smile), well, that’s a time you want to spend at home, isn’t it? (Smile.)

  I am on a training placement with the children’s cancer service as part of my ‘knit your own’ training in palliati
ve medicine. This includes being embedded in the team of children’s cancer specialist nurses. These inspiring nurses work with newly diagnosed children and their families to support them through whatever combinations of surgery, chemotherapy and radiotherapy they require to manage their cancers. They visit GPs and community children’s nurses to brief them on the support and care the child may need at home, because most GPs will only deal with one or two children with cancer in a whole practice lifetime. They visit schools to advise teaching and pastoral care staff on how to support classmates, and how to keep in touch with the absent pupil, because most teachers will never teach a child with cancer.

  The odds of being cured of cancers arising in childhood are much better than for adults, and the cancer team goes all out for cure whenever possible. But, of course, some children relapse, and others don’t get into remission in the first place. Then these nurses offer a palliative care service aimed at keeping life as normal as possible for as long as possible. They visit the children at home, and advise parents on nutrition, exercise, school attendance, symptom management, and how to discuss the illness and its implications both with the patient and with other family members, including brothers and sisters. They advise the GP and community children’s nurses about palliative and end-of-life care, because most GPs will not have experienced this before. And they support teachers who are, in turn, supporting a class of children who are anticipating, and then mourning, the death of one of their classmates. What a job.

  I don’t have most of the experience needed for this role. I am not a nurse, I have no experience of working with children (my only relevant child-health qualification at this point is rearing my three-year-old son), and only some of my adult cancer experience applies to the treatments these young people are having. I am clinically qualified, though, and Sylvie is technically an adult, so she is assigned to my caseload, and I have come to her house to meet her, along with the nurse who knows her best.

  It is late autumn. The house is in a remote village, along twisting lanes. I am observing the route closely, because next time I come I will be on my own. I will be responsible for bringing the platelet transfusion bag and a drip set, to administer Sylvie’s transfusion and to monitor her while it runs. The low morning sun is catching the frosty leaves in the hedgerows, fringing them with golden haloes. The glory of the autumnal display sits uneasily with the purpose of our journey. How on earth will I know what to say to this dying teenager and her parents?

  The house is yellow stone, standing alone amongst tall trees at the edge of the village. The wooden, farm-style gate is open and a gravel drive curves around mature bushes. There is a cattle grid at the gate, and it jangles loudly as the car crosses it into the drive. By the time we park and collect bags and boxes from the car boot, the front door is opened by a smiling woman holding a tea-towel, and through the open door the sound of drums reverberates into the morning air. Our breath is visible as we scrunch across the gravel. The drumming stops, and a window opens at roof level. A bald head wearing headphones pops out and declares, ‘You look like dragons!’ before the window slams shut again and the lady in the doorway welcomes us inside.

  The nurse introduces me to Sylvie’s mum. Sylvie’s mum gestures around the huge farmhouse kitchen, warmed by a squat, ancient Aga-type stove, and apologises for ‘the mess’. The mess seems to be an open newspaper and a teacup lying on the table. Or perhaps she thinks we can see her soul.

  A door opens cautiously and a gentle voice asks, ‘Where’s Friday?’

  Mum replies, ‘In his cage,’ and I notice a golden retriever sitting very quietly in the corner.

  Sylvie, no longer bald, slides in around the door, and Friday gives a cheerful bark. She walks gently, carefully, as though she is walking on ice. ‘Hiya, team!’ she greets us, beams at me and gives the nurse a hug, before draping herself carefully into the corner of the sofa, where she folds in her long legs, tucks her lopsided hair behind her ears, nods at the dog and says, ‘He knocked me over yesterday. I’m as wobbly as a skittle!’ (Smile.)

  I recognise this picture. Some chemotherapy drugs damage people’s nerves, dulling their ability to feel their fingers and toes while cruelly replacing normal sensation with pins and needles–some people feel as though they are walking on shattered glass. This makes it difficult to walk with confidence, and people do, as Sylvie says, become wobbly as skittles.

  The nurse asks about bruises: Sylvie’s low platelets increase the spread of any bruise. Sylvie smiles–the radiance of that smile is like a lighthouse on a dark night–and says ruefully, ‘Yep. Landed on my bum. Looks like I’m growing a tail.’ She turns sideways, pulls down her loose leggings and shows us the dark purple bruise that spreads across her left buttock and down her inner left thigh. ‘Ouch!’ says the nurse, and Friday whines softly. ‘You didn’t mean it, silly pup!’ comforts Sylvie.

  Over the next hour I discover that Sylvie is astonishing. Her mum stays for the first fifteen minutes, and then withdraws–‘Thanks, Mum. See ya later!’ (smile)–giving Sylvie a chance to talk without worrying about upsetting her. As soon as she leaves the room, Sylvie fishes out a bag from beneath the sofa and produces its contents–some coloured fabric, baby clothes, T-shirts, a piece of thick foam and some sewing materials. ‘It’s going to be great!’ she tells the nurse, and between them they introduce me to the Project.

  Sylvie got the idea while she was in hospital a couple of months ago. A play therapist was helping two youngsters to make clay models from a kit. One was picking her model (she chose Mrs Tiggywinkle) and putting clay into a mould, the other was painting the model he had made previously (Percy the Small Engine). The children were excited–these were ‘surprise presents’ for their parents. ‘But you didn’t have to be an Einstein to see how sick those kids were,’ Sylvie said. ‘And then I watched them make handprints in the clay. That’s when I realised that they were making presents for their parents to remember them by. Kind of goodbye gifts…’

  Sylvie thought about this for a while, and came up with the Project. She shows us the fabrics. ‘I’m trying to choose all Mum’s favourites. This bit is from one of my old sun dresses. That’s one of my baby vests. And this is from a T-shirt I painted at Guide camp when I was twelve. That button is from my school uniform, because I was always losing buttons and she kept having to sew on new ones’ (smile). The foam will become a round cushion, and Sylvie is making a patchwork cushion-cover from her own clothes–from her mum’s memories.

  Sylvie’s mum only takes a break from her daily chores when she rests in front of the warmth of the kitchen stove each evening. She sits on a battered rocking chair that was once her mother’s, and that should have been a legacy to Sylvie. This memory-cushion is for the family chair: an enrichment of the legacy, for a future that Sylvie will not see.

  There is a rustling outside the door; the bag is whisked away. Mum brings in a tray of steaming mugs of coffee, then turns to leave us. ‘You can stay, Mumsie,’ says Sylvie. ‘There’s no Big Stuff today.’

  After coffee and taking a blood sample, the nurse and I say goodbye. We explain that tomorrow’s platelet run will be done by me, while the nurse goes to deal with a child at the other side of the county who has just started chemo. ‘Poor chap,’ says Sylvie. ‘I hope he wins.’

  The next morning, I start my day at the haematology lab. I know all the technicians from previous work in adult haematology, so I drop in to say hello. They remember me as a rookie–my very first post as a doctor. I collect Sylvie’s blood-test result (platelet count eighteen, normal range 200–400) from the lab, and am then escorted next door to the transfusion lab to collect the platelet bag for her.

  ‘Look out! She’s back!’ they joke. They ask what I’m doing these days, then ask, ‘And how’s Sylvie?’ with earnest interest. Although they spend their working lives in the labs, these kind people have followed her story, and those of others like her, through the medium of blood counts in and blood bags out. They recognise this pattern of fail
ing treatment. They know that she is dying, that soon the blood tests will cease, that she will not see out her teens.

  ‘Cheerful and creative,’ I say, ‘and looking forward to your excellently prepared platelets, which I shall serve with coffee and a biscuit.’ They pass me the padded, insulated blood-products bag, like a small lunchbox, and I set off.

  ‘Give her our love!’ shouts the chief lab technician. He has probably never met Sylvie, but he has been in the lab since very early this morning to defrost her platelet transfusion so it can be given early in her day. What a service.

  Today it’s grey; no golden light or dainty frost. The county is shrouded in fog, and none of the roads look familiar. I am very relieved to drive across that cattle grid and up the noisy gravel. I gather my kit: blood bag (check); notes and observation sheets (check); rucksack with novel in case patient wishes to snooze through transfusion (check); medical bag with drip set, stethoscope, thermometer and blood-pressure cuff (check). The front door opens, Friday runs out to sniff me with huge enthusiasm, and Sylvie is in the doorway, wigless, smiling (of course) and saying, ‘You should see my bruises!’ in welcome.

  Sylvie’s mum takes the opportunity of a two-hour medical visit to get out to the local town to shop. She shows me where to find cups, coffee, milk, the telephone. Sylvie’s dad is at work; the dog will be happy to wander around the garden. It’s just the two of us. We begin the platelets ceremony: check temperature, pulse, blood pressure; run the drip through using saline; take sterile dressing off Sylvie’s special intravenous line; connect saline drip, check it runs smoothly; swap saline bag for platelets; note the time; observations every fifteen minutes.

  ‘So, there’s a big problem,’ announces Sylvie. She looks downcast. I ask what she means.