“I can’t praise it highly enough, it ticks so many boxes,” said Nigel, one of our Living Well patients.
Nigel was referred to our care in 2020, for pain management and support living everyday life with cancer. Sarah, one of our Clinical Nurse Specialists (CNSs), phoned him to make an initial introduction and tell him more about our services.
Our CNSs are often the first members of our team to see a new patient, and are pivotal in assessing each individuals’ needs and the needs of their families. They can refer patients on to other services within Phyllis Tuckwell, such as counselling or physiotherapy, and can also offer complementary therapies, counselling, and practical support to patients’ families and carers.
Because of the Covid restrictions which were in place at the time, Sarah assessed Nigel over the phone, and found out more about his symptoms and needs. She referred him to our Medical team for pain management, and to our Patient & Family Support (PAFS) team who helped to ensure that Nigel and his wife Vivien were receiving all the benefits that they were entitled to.
“They were fantastic,” he said. “They helped with the allowances we could claim and got me a blue badge, which is very useful for things like parking when I go for hospital appointments.”
The PAFS team is part of our Living Well service, which is designed to help patients and families who are living with an advanced or terminal illness, such as cancer, to cope with everyday life. Its Doctors, Nurses, Therapists, Dietitians, Patient & Family Advisors and Pastoral Care team offer holistic care, supporting patients and their relatives and carers physically, mentally, emotionally, spiritually and practically. With their help, patients are able to understand their illness, manage their symptoms and get the most out of life.
Continuing Covid restrictions meant that much of our initial contact with Nigel was over the phone.
“The Living Well team were ringing me up every four or five weeks,” he said. “It was nice to have that contact. I had some counselling too, and I found that helpful. I’m on my second lot of sessions now, and that’s all been over the phone too.”
As restrictions eased and we were able to restart our Living Well groups at the Hospice and Beacon Centre, our Living Well sister, Rachel, invited Nigel to the Hospice to see how he was getting on and how we could help him further.
“They thought that I might benefit from seeing Rachel face-to-face, so I had a chat with her and that was really helpful. She got me onto the Living Well with Illness course, and it was great.”
Our Living Well with Illness programme is an eight-week course which runs at both the Hospice and Beacon Centre. Patients are invited to weekly sessions which cover a range of topics, from managing anxiety and fatigue, to keeping mobile and sleeping well. They can receive tips on subjects such as diet, exercise and mood, and meet staff, volunteers and other patients, which provides an important and much-appreciated social aspect, especially for those who felt isolated during lockdown.
“I love going up there, it’s an oasis,” smiled Nigel. “It’s not just the activities, it’s the place itself. It’s wonderful – a warm safe place with wonderful people. I love it. I wasn’t really worried about going to a hospice. I was curious as to what it would be like, but having already had so much contact over the phone, I already knew how good the team there were, so going to the Hospice in person just reinforced that.”
“I drive myself there, and when I arrive it’s lovely. I think ‘great, I’m back’. I wonder which staff and volunteers will be there that day. It’s a really welcoming place. When you’re first referred, you hear the word ‘hospice’ and you think ‘you go there to die’, but actually it’s all about living. It’s not just end of life. It’s about enabling people as much as possible to get the most out of the abilities they’ve got and preserving their independence, and it’s about putting people in touch with any organisation that they might need or benefit from.”
“The Living Well sessions are a really important part of my week, something I definitely look forward to. Some of the sessions have resonated with me more than others, but they are all useful. They’re on different subjects each week and they’ve covered quite a lot. I remember the Living Well with Fatigue session – that was really helpful. I’ve got advanced cancer, but you wouldn’t know it to look at me; I don’t look ill. So when I get tired, I feel I shouldn’t be tired. Going to the session on fatigue, it was almost like it gave me permission to be tired. We were given tips on how to pace yourself and preserve energy. I get pretty worn out after each of the sessions. It’s not just the physical aspect of it, it’s the engaging with other people too. It’s fantastic and energising, but it’s tiring.
As well as attending the Living Well with Illness sessions, Nigel has benefitted from several massages from our Complementary Therapists, to relax his muscles and ease tension, and has also been coming to ourart group, Artscape, which is held on Monday afternoons.
“Artscape was brilliant; it really got a hold of me. I loved working with the watercolours. I sat next to one man there and he was very easy to talk to; we got on well. You can talk to the other people there about their experiences. It’s not like comparing notes, there isn’t any of that and that’s quite good, but we’re all on a different but similar journey and it’s interesting to talk about our shared experiences. I got talking to one lady about how she felt, and people open up and tell you about their lives. It’s nice to be with people who have got mutual experiences. At Artscape there is somebody opposite you who you can chat to, and the volunteers are good too, they bring people together. You can walk up and down too, and look at each other’s paintings.”
“I used to be a landscape gardener. I was self-employed. But the cancer has affected my right arm and I’ve lost the ability to work; I can’t pick up heavy things anymore. I like the outdoors, but that’s difficult now because I can’t walk very far from the car. It limits where I can go. I daren’t walk over rough ground in case I trip over. I wanted to carry on doing the art at home, but it’s my right arm that’s affected by the cancer, so even after just an hour of that my right shoulder will protest. You can’t see it to look at me though. Some of the others at the sessions there didn’t look ill either, and that in a way helped me, because I think I’ve only got a bit of cancer, but I know it’s more than that; it’s serious and it’s not going to go away.”
Nigel’s eight-week course ended just before Christmas, and he was invited along to the Hospice for an end-of-course assessment day, to see how he was getting on and if he needed any further support. He also came along to one of our Living Well Christmas lunches, where he could enjoy a three-course traditional Christmas dinner with others he had met at the Living Well sessions.
“Christmas lunch was really nice. They made a big effort; the staff there put a lot into it. We had lunch with all the trimmings, and it was lovely. All the volunteers were really nice; they really spoilt us.”
In addition to our Living Well with Illness programme, we also offer an eight-week Creative programme, which Nigel was asked if he would like to join. The programme includes sessions on culinary therapy, clay modelling, reminiscence, and using essential oils to make soothing lotions.
“Once you’re under their wing, it’s fantastic. You’re looked out for, they keep tabs on you and make sure you’re ok. It’s about physical and mental wellbeing. I feel connected; I know there is somewhere I can go for advice. If I wanted to speak to Rachel, I could ring her up; if I said I was desperate to speak to a doctor they would sort that out. The whole Living Well team is fantastic – the nurses, volunteers, receptionists, everyone. It’s all about setting realistic goals; being realistic about what you can and can’t do. The cancer doesn’t have to stop you, there are ways of planning so you can still do what you want to, things that you might otherwise have thought were beyond your scope now. You might have to limit your ambitions a bit, but you can still get the benefit of doing the things you love.”
Everyday we need to raise over £25,000 to provide our services free of charge to our patients and their families. Please make a donation today to support the important work of Phyllis Tuckwell.