Susan, who lives in Farnborough with her husband Eric, was diagnosed with breast cancer in 2004.
“It came as a complete shock,” she remembers. “I had a lumpectomy and had my lymph nodes removed, and then had a course of radiotherapy, followed by a five-year course of Tamoxifen.”
After five years, Susan was given the all clear. Three years later, however, she was diagnosed with secondary breast cancer in her liver and bowel. Her prognosis was not good and she was assigned to a Phyllis Tuckwell Clinical Nurse Specialist (CNS).
“I was apprehensive,” she says. “I had always thought that if you were assigned to PTHC then you know you’ve not got long left.”
Susan’s CNS, Deborah, visited her at home, bringing with her some PTHC leaflets and explaining to her the facilities that were available through Phyllis Tuckwell. After reading through the leaflets and chatting to Deborah, Susan’s apprehension began to fade and she started to realise that being referred to a hospice wasn’t the death sentence she had thought.
Susan and her husband Eric signed up to PTHC’s Fatigue Management and Stress Management workshops, and Susan also had massages to relieve the pain she was experiencing in her knees, legs and feet, and found that they made a big difference. She and Eric were also taught how to make their own creams and how to massage Susan’s hands and shoulders to relieve discomfort and stress. They have used these techniques since the workshops and Susan has found that they have made a considerable difference to her.
At this time, Susan was taking chemotherapy tablets which were making her very tired. She was sleeping for around 22 hours a day and her mood was very low. Her CNS put her touch with PTHC counsellor Sophia, with whom she had a number of sessions where she was given practical advice on how to cope. Sophia encouraged Susan to keep a diary of how she was feeling, which helped Susan see a pattern emerging, and made a big difference to how she viewed her illness and treatment. “Sophia helped me to see that if I needed to sleep, it wasn’t necessarily a bad thing,” Susan explains. “I had virtually given up, but talking to Sophia and knowing that I could call her at any time made a big difference. She helped me to come to terms with my illness and after just a few sessions I felt much more able to cope. Eric and the kids have also been offered counselling but so far they haven’t needed it,” she continues. “They know it’s there if they change their minds, though.”
Susan was put on another course of chemotherapy, although this one made her less tired than the last, and with Sophia’s help, along with the support of the CNS team, she found it easier this time. “I had a new CNS then, Lucy, and she would ring me every four weeks,” she explains, “but she was also there in-between if I needed to call her before that, and I could discuss my medication with her too.”
Because of her cancer and treatment, Susan’s arms and legs have become much weaker, and she now suffers from joint pain and mobility problems. Lucy suggested that she attend a series of exercise classes which were being set up by one of Phyllis Tuckwell’s physiotherapists. Because of the positive contact she had already had with Phyllis Tuckwell, Susan was so familiar with PTHC and the help which staff and volunteers there could offer, that she was open to suggestions and keen to try the classes.
“I had an interview with the physiotherapist, to see if the classes would be suitable – which they were – and what they could offer,” says Susan. “At the time, I needed to use my tri-walker or walking stick to get around, but after eight weeks of sessions I became much less reliant on them.”
Susan has been attending the classes for ten months now and will carry on coming to them for the foreseeable future. “They’re absolutely brilliant,” she enthuses, “both emotionally and physically. No matter how poorly I feel in the morning, and how many reasons I try to think of not to go, once I’m there both the physical exercise and the camaraderie change my whole week. I wouldn’t miss them for anything.”
Once Susan reaches the goals which have been set for her, the physiotherapists who run the classes re-assess her and set her new goals. “My first goals were walking up the stairs normally,” Susan says. “I had been walking up one step at a time, always leading with the same foot, but after eight weeks I could go up them normally, holding the hand rail, and after ten weeks I could do it whilst carrying something in my other hand.”
Susan’s legs were still weak due to the steroids and drugs she had been taking to combat her tumours, and her joints were stiff. To continue building up the strength in her legs she was set a new goal – to kneel down completely – which she achieved a few weeks later.
It is not just physical strength and stamina which the exercise group has given Susan, though. The group of eight patients, none of whom knew each other before the classes started, have all become firm friends, supporting each other through their illnesses and encouraging each other in their exercises.
“I’ve had a setback recently,” Susan says. “I’ve been told that my tumours have doubled in size, and that my prognosis is sometime between this Christmas and next spring. I’ve already told the group and they’ve been hugely supportive in helping me to cope with the news.”
As well as being part of PTHC’s exercise class, Susan also belongs to a secondary breast cancer support group of around ten people. Once a year, the group visits the Hospice and is given a tour of the building and talks from various speakers, before enjoying lunch together – all provided by Phyllis Tuckwell. “They’re all surprised by how calm it is here and what a wonderful atmosphere there is,” says Susan. “When my doctor first mentioned the word ‘hospice’, I was very apprehensive,” she continues, “but a huge proportion of people are just here for the short-term, to adjust their medication, and they come back out afterwards. And everyone here is so kind; they make you feel like you’re the only one.”
While Susan is at her exercise class, her husband Eric waits for her in the Hospice coffee shop, with a cup of tea and his laptop, making great use of the Hospice’s free WiFi connection. “I used to sit in the reception area with a magazine,” he says, “but then I discovered the coffee shop. It’s much nicer waiting for Susan there! Everyone is very welcoming. From the receptionists to the therapists – they’re all wonderful.”
“The volunteers are amazing too,” adds Susan. “We couldn’t run the sessions without them. And communication between the teams is very good. Last week I was feeling really sick, because of my medication. I told my CNS, and then while I was in my exercise group a complementary therapist came in with a sniff stick for me, to help with the nausea. I hadn’t mentioned it to her, so my CNS must have told her. They’re so thoughtful; the continuity of care is excellent.”
As well as medical, therapeutic and emotional help, Susan has also attended a Phyllis Tuckwell Health and Beauty day, when volunteer make-up artist Lee Pycroft and her team came to the Hospice to offer patients and carers a makeover. “I didn’t have any hair at the time, because of the chemotherapy, and I was feeling very low,” says Susan, “so it was a real boost to my self-esteem to have my make-up done by a professional!”
Susan’s initial apprehension at being referred to Phyllis Tuckwell was shared by her husband and children, but now that her visits to the exercise class have become a regular event, the fear has been dispelled for all of them. “It’s on the calendar each week – a visit to the Hospice – and we all talk about it in the same way that we might talk about a visit to a show,” says Eric. “It’s not something we associate with Susan’s illness, it’s just something we do each week.”
“It’s part of our routine,” nods Susan, “it’s taken the mystery out of the Hospice for all of us, including the kids.”