“When they first mentioned Phyllis Tuckwell, all he thought of was the In-Patient Unit,” said Carol. “The first thought of a hospice, it really shocked him.”
Carol met her husband Bob in 1962, in Rhodesia, Africa.
“We loved it in Rhodesia,” said Bob. “Carol grew up on a farm there and went to boarding school, and I went out when my father saw an advert for bank clerks. He said to me this is a job for life, so I applied. Carol’s best friend was engaged to my best mate, and when they got married Carol was chief bridesmaid and I was best man. When we first met, we didn’t like each other at all! But in Rhodesia it was the tradition that after a wedding the best man took the chief bridesmaid out for a slap-up meal at a restaurant, so I booked a table at a new restaurant that had just opened up. There was a little band there and a dance floor, so I said to Carol would you care to dance? And as I took her in my arms and looked into her eyes, a voice said to me you’re going to marry this girl, and that was it. Getting Carol to change her mind about me was the hard bit!”
Bob and Carol married and spent many years in Rhodesia, before returning to the UK in 1976. Bob was referred to Phyllis Tuckwell in January 2023, with heart failure.
“He had been in hospital,” said Carol, “and when he came out, he could hardly get up the stairs. We got a letter referring him to the cardiac failure nurse, who he saw, and she said have you thought of Phyllis Tuckwell, which came as a wake-up call. But then she explained not the In-Patient Unit, that was only part of it. The day services, they were different.”
Bob’s cardiac nurse referred him to Phyllis Tuckwell, and he was contacted by our Living Well team, which supports patients who need some help managing everyday life. The team visits patients at home, offering medical and nursing care, Therapies, social work advice and pastoral care, and also offers individual appointments and group sessions at the Beacon Centre in Guildford.
“Louise, their clinical nurse specialist for heart failure, came to see us, and she came for two visits. After that, various people from Phyllis Tuckwell phoned us, and one of them arranged for Bob to do the Living Well with Illness programme. He was a bit apprehensive at first, but now he goes in as if he owns the place!”
Our Living Well with Illness programme offers eight weekly two-hour sessions, each of which focuses on a different aspect of living with an advanced or terminal illness, such as cancer or heart failure. Topics include sleeping well, managing anxiety, diet and nutrition, goal setting, and keeping active, and patients attend in a group of six to eight people. As well as seeing nursing staff and learning more about how to manage their symptoms, the peer support that they gain from these sessions is invaluable.
“I enjoy going,” smiled Bob. “Everyone’s lovely and I enjoy myself there. They’re a nice group of people, not only the staff but also the other patients that I mix with there.”
Bob has had to give up driving because of his illness, so has been offered lifts to and from the Beacon Centre by our volunteer drivers. "They drive me in, they drive me home - I have a chauffeur! They’ve covered everything. I love driving, and even though I’ve stopped driving now, I still love being in a car. But Carol does not like driving, especially on busy roads, so having a chauffeur is great. I find the Living Well sessions helpful. They remind you to keep yourself fit and active, and tell you how to overcome things that are worrying you unnecessarily. It’s day-to-day living. But it’s the company too, that’s an important thing, and the communications between people. It’s good. You suddenly realise you’re not the only fish in the sea, everyone’s got their problems. One tends to think of oneself in isolation, but you go there and you realise, heavens above, you’re human and you’ve got all the failings and the problems that everybody else has, which is good, it brings you down to reality. It’s wonderful.”
“It’s not just help for Bob,” said Carol, “they’ve supported me as well, and the family. Without that support I would have been sunk. It started from the very first morning that I took him to one of the sessions. I drove him there at first, until a volunteer driver was arranged to take him. It was horrible leaving him. I didn’t do anything that morning. I came home and I made a cup of coffee, and I just sat there. And then I went back to get him, and he was bright and cheerful, and I thought what was I worried about?”
Carol has also benefitted from carer support through the Living Well service, and has attended one of our pamper days, which are held at the Beacon Centre.
“I had my toenails painted, and I had a massage. It was lovely. I met several other ladies with different reasons for being there, and just being spoilt was so nice. The support we’ve had from everybody, the nursing staff, the volunteers, the people that do massages and treatments like that, everybody has been wonderful.”
“One of the things we talk about in the discussion sessions at Phyllis Tuckwell is things that are worrying you,” said Bob, “and I’m acutely aware that while I’m sitting here in this chair not doing much, Carol is running around like a busy bee working her hands to the bone looking after me, and I feel so useless. I was really worrying about that, feeling this inadequacy. Before this illness happened, I looked after the books and the house and the security and the computer, but of course it all changed. So I really appreciate what they’ve done for Carol. They said to me, what you’re feeling, everybody feels, you’re not alone. This is the marvellous thing, it brings reality, and you realise that everybody is in the same boat. Psychologically it really is good.”
As well as attending Living Well sessions, Bob has been visited at home by the Living Well team. Physiotherapists, occupational therapists, nurses, clinical nurse specialists and complementary therapists have all been to see him and Carol, to see how they are and assess whether they need any additional support at home.
"You saw the physiotherapist last week; she told you to use your zimmer frame!” said Carol. “We’ve been supplied with all the extra aids we need too, for the bathroom, and a bed-pull to help Bob get out of bed.”
Our physiotherapists and occupational therapists assess movement and function to help patients stay as mobile and independent as possible. This might include issuing walking aids, rails or grabrails and other functional equipment to enable people to manage daily activities. They can also advise on items such as wheelchairs and stairlifts.
“The nurses have been supportive in all sorts of ways too,” said Carol. “Any problems, you just phone them. It’s all the little things they do; they’re just there for you. They’re like a warm hug.”
