‘The laughter makes you feel so much better’
Cancer patients can feel lonely and isolated, but Sally Peck meets a former nurse who offers vital companionship
Shirley Emmerson and Steven Smith are the sort of friends who finish each other’s sentences. An unlikely looking pair, Emmerson, 57, is a petite, manicured, softly spoken former nurse. Gregarious 55-year-old Smith, who oversees contracts for machine hire, towers above her, often with a mischievous twinkle in his eye.
While the friends have an easy banter, they met, unusually, in a small room in the inpatient ward for haematological malignancies at St James’s University Hospital in Leeds, where Smith was being treated for leukaemia.
Each of the 40 single rooms in the two wards was purpose-built in 2008 to protect patients undergoing aggressive treatments. The rooms feel small – five or six strides across by about four – and while there’s a large window, the room I visited last month looks out over the architecturally bland silver outpatient ward (other rooms have prettier views over the rows of houses that lead to the centre of Leeds). There are signs encouraging patients to “get up and get dressed”, an attempt to bring structure to their days. Double sets of doors into each room and a sophisticated air filtration system work to prevent the spread of infection among patients whose immune systems have been suppressed to allow chemotherapy to work. Despite these precautions, most of the patients do get infections and may need intensive care.
Any visitors must be in tip-top health, and children under the age of 11 are banned. Add to that the fact that this is the region’s specialist hospital, with patients coming from all over West Yorkshire, and it is clear that most patients will be alone for much of their five or six-week stay.
And that is where Emmerson, north-east regional coordinator for the charity Leukaemia Care, comes in. Every Thursday she appears on St James’s haematology ward, providing booklets, support and information, and a listening ear to patients.
As Alison Chatten, a leukaemia nurse specialist at St James’s, puts it, Emmerson’s visits are “essential”. “Patients are very isolated. The staff nurses on the ward will obviously go and see the patient, but you’ve got long periods of time on your own.” It is easy to imagine that, with the chaos of the Christmas period, the loneliness for inpatients will grow even more intense.
And that loneliness is frightening
‘The nurses tell me who they think would like a visit, or if there’s anything I can do’
‘Your relatives don’t want to come if they’re going to make you poorly’
patients, says Smith: “When you’re there, in isolation for six weeks, your mind whirrs. Your relatives can come, but only if they have no coughs or colds or diseases. They don’t want to come if they’re going to make you poorly. But Shirley comes in once a week and talks to me,” he says, with a chuckle.
Emmerson explains: “I work with the nurses, and they tell me who’s where, and who they think would like a visit, or if there’s anything I can do. And then, I just go along and introduce myself. That’s how I met Steve.”
“Yes, it was during my first blast of chemo, in May,” Smith begins, and Emmerson adds, smiling: “I’ve been there all the way through.”
This consistent support has been invaluable to Smith, who recalls sitting alone in his room, wondering whether the chemotherapy was working, and what would happen next. “It does play with your head,” he acknowledges, “as you sit by yourself, thinking: what’s going on?”
A typical Thursday when Smith is an inpatient goes like this: he wakes and has breakfast between 8-9am (“I try to get a full English out of it,” he jokes, though he soberly acknowledges that the treatment makes most patients lose their appetite.) Then he might watch some television and await Emmerson’s visit at about 10.30am. “From day one, Shirley would always laugh with me,” he explains. “Shirley would say, ‘Have you thought about this…’ or ‘Have you tried that…’ but what I really got out of it was having someone to sit and talk to – about my family, about her family. It’s just a giggle, but that laughter makes you feel better.” Emmerson would stay until around lunchtime.
In the afternoons, Emmerson heads to the bright haematology outpatient ward, which sees 500 patients each week. Here, the waiting room has a side room with a collection of row after row of pamphlets from Macmillan and other charities. In a voice inaudible to the dozen or so waiting patients, with their accompanying family members, Chatten explains that the room used to be closed off, but a bereaved family donated money so it could be spruced up and opened to the waiting room, so the range of available help would be easily discoverable.
The word “pamphlet” may have dull connotations, but the complexity of leukaemia is difficult for the layperson to understand: it’s not like a solid tumour that can be excised; there is no surgical option. Because of chromosomal and molecular abnormalities, each leukaemia is unique and treatments are varied and sophisticated.
Treatment lasts at least six months but very often far longer: for acute lymphoblastic leukaemia patients, for example, it’s more like three years and can be longer for others. Leukaemia Care’s explanatory brochures are a great help, say the specialist nurses, in helping patients and families to understand leukaemia. Emmerson adds that it’s a particularly bad cancer to Google for information; you need to go to a monitored website, so you don’t pick up “nonsense”.
She offers further support to patients in monthly information sessions, when she can help them to get advice on financial services (the nurses say no patient escapes the economic effect of a sudden leukaemia diagnosis).
Around the other side of the waiting room are two volunteers, the Chevin Socialites, who are stocking a range of snacks on to a large table with tea and coffee and boxes of juice. After asking, with a smile, one of the volunteers fulfills her badge’s promise and gives me a big hug. “A warm Yorkshire welcome!” Emmerson observes. Nearby in the corridor is a brown leather sofa donated by the original “calendar girls”, in honour of their friend, John Baker, who was diagnosed with non-Hodgkin’s lymphoma, and inspired the original project; for a hospital, St James’s has a remarkable warmth and sense of community.
Leukaemia Care, one of the Telegraph’s three Christmas charities, also sponsors regular workshops for nurses, offering travel funds to attend them. Emmerson publicises the charifor ty’s counselling fund, which grants £400 for up to six sessions with an accredited counsellor. The hospital has psychological services, but the waiting time is far longer than it would be for a private therapist.
Emmerson, who has been at Leeds since January, covers most of the North East over the rest of her three-day week. She visits other hospitals and runs local support groups. Leukaemia Care is expanding roles like hers across the country, answering a need that has been demonstrated: nursing has changed enormously during the past few years, the staff tell me. Nurses perform more nurse-led services, which is intellectually stimulating and rewarding, Chatten notes. However, “we don’t have quite the same amount of time we used to have to offer psychological support,” she explains. “For us, Shirley’s input has been invaluable.”
During my visit, I slowly realise how tired Smith is. His medical team is to build on three rounds of chemotherapy with a stem-cell transplant. This long, protracted treatment period has clearly taken a toll, and the success of his treatment will be clearer, Chatten tells me quietly, in a month’s time.
But Smith puts on a jovial front, and is a man on a mission: “What I’d like to say,” he says, “is that people don’t realise how easy it is to give stem cells. Everybody seems to think it requires an operation on your bones. It doesn’t. All it involves is taking blood out of you, filtering it and putting it back in,” he says.
Smith notes that his 53-year-old sister, Janet Saville, had been tired after she donated stem cells to him. But, he adds, his sister’s fatigue might well have been down to DIY: “She was doing her house up at the time, and she’d done a bit too much painting and decorating,” he laughs, with affection. “She was told by the nurses to rest, but she’s like me: she gets on with stuff, and doesn’t listen sometimes.”
I was grateful to meet Smith – grateful for the time he took to explain this complex disease. And, when I speak to Chatten nearly a month after our meeting, she tells me that Smith is doing “very well” after his stem cell treatment.
Towards the end of my visit, Chatten mentions that she is planning a trip to Abu Dhabi. Smith nods at Emmerson, noting that she had lived in Dubai years ago. Their knowledge of each other is deep. When I ask whether it’s difficult to walk into a room to meet a stranger at what may well be the worst moment of their life, Emmerson shrugs off my social awkwardness, in her calm way: “I just introduce myself, and show my brochures,” she says, with Smith cutting in: “But from that, you get right on to the friendship line!”
Leukaemia Care is supported by this year’s Telegraph Christmas Charity Appeal. Our other charities are Wooden Spoon, which works with the rugby community to raise money fordisadvantaged children; and The Silver Line, a support service for lonely elderly people. To donate, visit telegraph.co.uk/ charity or call 0151 284 1927