Scott, who is 55, was diagnosed with kidney cancer in 2019 and had a kidney removed that summer. Since then, he has experienced a number of symptoms because of his illness and its treatment, and was referred to Phyllis Tuckwell in March 2023.
“I’ve been fighting the cancer with the help of my lovely wife Julie and our dog Zara,” he said. “My oncologist referred me to Phyllis Tuckwell for pain management, and I was able to speak very frankly and in quite some depth with some of the expert doctors there. They’ve helped me greatly to manage the discomfort that I was experiencing from post-operative nerve damage after my kidney was removed, and from the side effects of the chemotherapy I was having.”
“When a hospice was first mentioned, Scott wasn’t that happy,” said Julie. “It’s not the sort of thing you want to hear, and to start with he wasn’t that keen on it, but we had a chat and it was alright. It’s just getting into your head that it’s not about end of life, it’s about getting help.”
“I already knew what Phyllis Tuckwell and the Hospice environment was all about,” said Scott. “In fact, Julie and I did a sponsored walk for Phyllis Tuckwell about ten years ago and raised around £1,500. I was aware that pain management was a speciality of hospices, so I wasn’t daunted about being an outpatient of Phyllis Tuckwell; I was very pleased actually.”
Scott was referred to our Living Well team, which supports patients and their families and carers as they live everyday life with their illness.
“I’ve been impressed with all the help and assistance that I’ve been given so far,” said Scott. “I went to the Hospice two or three times and had a long chat with one of the doctors there. I was able to discuss some things which had really been causing me a problem, like breathing. When I was highly anaemic, I was gasping for breath; I couldn’t walk more than a few metres without a stick, and even then it was quite difficult. We’ve managed to resolve that; the pain management and the breathing aspects have all been resolved really efficiently by Phyllis Tuckwell. They’ve given me suggestions and assistance, their physiotherapists have even taught me how to breathe, and if I become out of puff they taught me how to breathe in and out so I don’t just gasp, because then it just spirals. They also taught me how to get up the stairs without collapsing at the top, and how to breathe on the way up there.”
The team also runs 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 managing stress or getting a good night’s sleep, and the creative sessions include activities such as pottery and cooking. These groups can provide patients with helpful information, advice and guidance, and taking part in the activities can reduce stress and anxiety, and improve wellbeing.
“I’ve been to both of the Living Well courses. When I arrived at a session, I’d have a chat with some of the other people who were there; we’d have a cup of tea and some of the lovely biscuits they have at Phyllis Tuckwell. The Living Well with Illness sessions covered techniques for managing pain and stress, breathing skills, all kinds of challenges that happen when you’ve got an advanced illness. That was extremely useful. We would have an interactive presentation by an expert, on mindfulness for example, and they would maybe explain how to relax your body if you’re in a particularly stressful situation, or talk about sleeping techniques and routines that you can put in place to help you sleep better. After that we’d have more tea and chat, and then we would all head off home. If there was anything with your health that was a particular issue at that point in time, the nurses would ask you about it and would very often be able to find some way in which to help. If they didn’t have the answer themselves, they would certainly put you in touch with someone who could help.”
“The Creative course allowed me to do things hands on. One of the sessions was clay modelling. I made a little plaque and managed to spell out in clay ‘cancer sucks’. I really had great fun doing that; everybody had fun that day. Another of the sessions was on cooking. I got to make a stuffed pepper, which was really good fun. I think I probably changed the recipe a little bit from what everyone was meant to do… the volunteer lady who was there had a lot of ingredients, so I nicked a couple of those to add in as well, and I came home with some gluten-free stuffed peppers for my darling gluten-free wife. That was really good fun and it was quite a useful thing to do. I made some chocolate brownies too, and I pilfered a bit of brandy that was in the ingredients box too, so I put that into them, and then everybody else started taking it as well!”
“He never follows the recipe,” smiles Julie. “He always adapts it.”
“One of the problems I was having at the time was that because I was very anaemic, if I was holding something, my hands would cramp up really badly, and that was very difficult. I love cooking, but if I was chopping something up I often ended up not being able to do it, and I had to ask my dear wife to help me. I saw various occupational therapists and physiotherapists during the times when I was at the Living Well courses, and they helped to solve some of the problems I’ve had. The occupational therapists provided me with a lot of aids, such as cutlery which I can use if I’ve got severe cramps, and a perching stool, which I can use in the kitchen, because if I was to stand there for a long time I would probably end up feeling pretty unwell, so I’ve been using that extensively. I’m interested in practical things, such as learning and understanding about my condition and trying to figure out what my next steps might be. If you’re in a cancer situation, you have to take decisions at every point along the way. I’m not really someone who’s going to worry about it – I’m going to try and figure out a solution. When I started to discuss some of my problems with various people in the Living Well team, I knew that there was support there that I could turn to. The nurses are absolutely lovely, every single one was always so friendly, so attentive, so helpful; I can’t praise the whole service enough. Every time that I’ve had a problem, they’ve had a solution. Having a very responsive group of committed individuals at Phyllis Tuckwell has been very reassuring.”
As well as benefitting from the expert advice and support that our clinical team have provided, Scott has also appreciated meeting other people who are in a similar situation to him.
“It’s been really interesting to meet other people at these different sessions. It wasn’t only the people on the Living Well programme, there were also other sessions that I was invited to and different people who I met there, who were in the same situation as me, with an illness that’s not going to go away but which we were all trying to find the best way to deal with, so that we could live life and have the maximum quality of life as possible. There were people with all sorts of different ailments, not just cancer patients, but all these illnesses have very similar issues, such as pain or sleep problems.”
Our patients’ mental and emotional health and wellbeing is very important, and to supplement the Living Well sessions, we organise regular ladies’, men’s and carers’ pamper days. Held at our Beacon Centre, the sessions offer nail care and complementary therapies such as massages, from our complementary therapists, and hair care from our volunteer hairdresser. A two-course lunch is included, and patients and carers can chat and get to know each other throughout the day. These days help to ease patients’ and carers’ stress and anxiety, boost confidence and self-esteem, and encourage peer support.
“I’ve been to a pamper day at Phyllis Tuckwell,” said Scott. “I hadn’t been particularly well before it, but I was so glad I made the effort to go. I had a neck massage and a foot massage, and I also had my hair cut. There was a lovely lady called Jules who was doing hair, and I managed to get a place with her. I went into a little room and she said ‘what sort of haircut would you like?’ and I said ‘can you do a Mohican?’ and she said ‘oh that sounds great fun!’. So away she went and she took my rather normal looking hair and turned it into a Mohican. And she said ‘I’m really sorry but I don’t have any colour with me’, and I said ‘that’s ok, because I’ve brought some’, and I took some out of my pocket and she dyed my hair blue! When I walked out, all the other people attending the pamper day were in fits of laughter and it’s been really quite funny ever since. This was basically the haircut I had when I was 15, so it’s another 40 years later and I’m back to my Mohican. Jules was really quite thrilled to do the haircut. She was laughing all the time!”
“The support I’ve had as a carer had been really good too,” said Julie. “I’ve had neck and shoulder massages, which are very nice and stress-relieving. I was invited to join a course too, but mine was online. It was a six-week course and it covered various things. One of the sessions was about end of life, another went through what benefits you could apply for and all the different help you can get as a carer. It was all very interesting. The support they give is very good. It’s always there for you. It’s made me feel better because you can talk to them about something and they give you an answer near enough straight away. It eases your mind.”
“Everything at Phyllis Tuckwell has been so helpful,” said Scott. “From the doctors, nurses and therapists, to the many kind and helpful volunteers who support them in the Living Well sessions, spending time talking with patients and helping them with the practical activities. There were so many lovely, kind-hearted people who made a huge positive difference to the sessions I attended. I just can’t describe my thanks.”
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