Val was diagnosed with a brain tumour 15 years ago, after suffering a seizure. Earlier this year the seizures returned, and her oncologist confirmed that the tumour was starting to grow again.
“She was very honest,” said Val. “She said that because of where the tumour is, chemotherapy and radiotherapy would be out of the question, and she didn’t think I was strong enough to have those treatments anyway. She told me that she’d like to introduce me to Phyllis Tuckwell, and bring them into the circle of people who I talk to and who care for me.”
Val was referred to our Living Well team, who care for people who need some help managing living everyday life with their illness. The team’s nurses, doctors, therapists and benefits advisors visit patients and their families at home, providing care, advice and support. They also run two eight-week programmes – Living Well with Illness and the Creative programme – which are held at the Beacon Centre in Guildford. Each weekly two-hour session focuses on a different aspect of living with an advanced or terminal illness, such as keeping active, managing stress, and getting a good night’s sleep. The creative sessions include activities such as cooking, gardening and pottery. Taking part in these activities can help reduce stress and anxiety, boost confidence and improve wellbeing. At the sessions, patients can chat with nursing staff and ask any questions which they may have about their illness and treatment. They are also able to meet and get to know others who are in a similar situation to them, and this peer support is really important too.
“I was given the choice of a discussion group or a creative group,” said Val, “and I liked the sound of the creative group, so I started going to that. I have to say, the first mention of a hospice is a bit daunting, because the first impression is that it’s the beginning of the end of your life as you know it. It can be a bit upsetting. But everyone at the first session I went to was very welcoming and very warm, and I thoroughly enjoyed it. Each session that I have gone to has been enjoyable – I love it! I’ve got to know a new circle of people. The carers are wonderful, and the other patients who join me there have become friends. It’s much more positive than I thought it could be.”
“Having known Val for 55 years,” said Geoff, “when she went to that first session, I thought ‘hmm, is she going to be alright with this?’ because she’s always been a very shy person, but she was bubbling about it, and I thought ‘yes!’”
“At the first session we were told we were going to do gardening, and I thought ‘well how are we going to do that?’, because I’m in a wheelchair when I’m there, and I didn’t know how it was going to work. But we sat at a long table with large flowerpots on it, and we were given trowels and pots of compost to fill our own pots with, and they brought round a tray of little plants for us to choose from. So we planted these plants in our pots and we were able to bring our little gardens home with us. Mine’s on the windowsill in the lounge. It was something that I’d never considered doing before. At another session we did cookery. We made a potato dish and some chocolate and ginger squares, and we brought those home as well. There was a music session too, where we had to choose pieces of music that meant something to us. They found each piece and played them for us, and we discussed why these particular pieces of music meant so much to us. That was quite emotional because it brought up lots of memories for everyone. For some people it brought up memories of the Second World War and, even though we didn’t know each other, it opened up thoughts for other people as well and brought a few tears. You think ‘what did you go through?’ and your sympathies are for what has happened to other people in their lives.
“When you came home and explained it all to me, I thought it was a lovely thing to do,” said Geoff. “The group bonded even more when you found out what each other went through in the past.”
“We’ve had a psychologist who came and talked to us about the different emotions we might be feeling, too,” said Val. “Guilt, anger, resentment, depression, all sorts of feelings that we might have about our own condition and how other people treat us. Friends don’t always know how to speak to us; some people can be over-sympathetic; they don’t really know what to say. I haven’t had that problem with my close friends, but other people might have.”
As well as caring for Val, our Living Well team have also supported Geoff too, as her carer.
“The nice thing is that I’m the patient, but Phyllis Tuckwell has taken Geoff into the fold as well,” she said.
“Val has been taken into the Phyllis Tuckwell family, and when I realised what that introduction to Phyllis Tuckwell has done for her, it took the burden off my shoulders,” said Geoff. “Now I’m in the circle as well, I feel even happier. We’ve been treated wonderfully, both of us.”
Geoff has been invited to our Carer Support sessions and has spoken to one of our psychologists, too.
“The carer support sessions were online and there weren’t many of us on it to start with. I didn’t know what to expect. The first session was extremely emotional because it brought out feelings that people didn’t know they had. You just wanted to reach out and give them a hug. I talked about who I was and what my lifetime story was, and how we came to be in this position, with Val being looked after by Phyllis Tuckwell and me attending sessions for carers. We had a couple of sessions online with psychologists too, and we were asked which of a selection of categories we fell into. My main category was ‘why us?’. There was anger there; I didn’t know who I was angry with, but it was helpful to talk about it and the leaflet I was given about it was helpful too. And I find it easier now to talk about it than I ever did before.”
“We’ve had massages too. The lovely Angie, one of their complementary therapists, has been coming here to see us at home. We never see her go because she leaves us in a deep state of relaxation and quietness… asleep!”
Val and Geoff both feel that the staff at Phyllis Tuckwell are there if they need them or have any questions.
“Val had long conversations with Bev and Steph, from the Living Well team,” said Geoff, “and Rachel, the Living Well sister, would come and sit with us and have a long chat.”
“Everyone there is so kind and welcoming,” said Val. “It’s lovely to be taken through those doors; it’s a nice place to be. It’s cheerful and very positive, going there each week. It’s a happy time and I enjoy it.”