When Terry became ill with cancer, he moved back from Los Angeles to live with his best friend Gary and wife Lorraine. There he was visited by our Hospice at Home team, who offered him compassionate medical, nursing and therapeutic care at home, where he wanted to be.
“Terry and I met nearly 50 years ago, when we were 16 and both working at the Skyline Hotel at Heathrow,” said Gary. “That was where I met my wife, Lorraine, too. Terry and I were in a family fun band together for 11 years during the ’80’s and ’90’s; he loved David Bowie and Elvis Costello, and he was a great Beatles and Rolling Stones fan.”
In 1994, Terry moved to Los Angeles, working as an accountant for some of the Hollywood stars. In 2021, however, he was diagnosed with cancer, and phoned Gary to ask if he could move back to the UK to live with him and Lorraine.
“He said ‘I need to come home’,” said Gary. “He used to live with us before, so we didn't have a problem with him living with us again. He was part of the family. He'd always been like another father figure to our children, Dale and Nicole - they loved him.”
“Terry came back to the UK in November 2022. I didn't know what to expect, but he was in good spirits. For the first few months he was ok. He used to walk up to Frimley Green once a month to have his hair cut, and he loved going for walks along the canal that runs behind our house.”
As Terry’s cancer was terminal, he was referred to Phyllis Tuckwell and was visited by our Hospice at Home team. This team supports patients who have chosen to receive care in the comfort of their own home or care home, instead of on our In-Patient Unit or at the Beacon Centre, and includes doctors, nurses, therapists, counsellors and social work advisors.
“Terry was adamant that he didn’t want to go into a hospice,” said Gary. “He said that when people go into those places, they don’t come out. When the Hospice at Home nurse came over to see him, she spoke to him about end of life care. They talked about what it was going to be like for him and what his choices were. She said to him, ‘we can bring Phyllis Tuckwell to you, or you can come to us’, and because he didn’t want to be admitted to the Hospice, we planned for him to spend his last days at home, at our house.”
“The nurses would come round every so often to see how Terry was doing, check his medication, see if he needed anything. They really were a breath of fresh air, all of them. It was always good to have a Phyllis Tuckwell staff member coming through the door. They just had a way about them; they put his mind at ease. At first, they visited about once every three weeks, then as the year went on and he got weaker and weaker, they would visit more and more frequently. He was generating a lot of fluid and getting aches and pains, and the nurse who came to see him referred him to Phyllis Tuckwell’s Complementary Therapies team. That was about June or July time, and he saw them once a month. They gave him massages on his back, his arms, his legs. I would drive him to the Hospice for the treatments and wait there to take him home afterwards. When he came out, he would always say how brilliant it was, how it had done him the world of good.”
“Earlier that year I’d suggested that he write a bucket list, and one of the things he'd put on it was to do a cruise. I arranged one for that summer, and we went to Ireland and to Rome, where he’d never been before. Later that year though, towards the beginning of November, he began to deteriorate. Fiona, the doctor from Phyllis Tuckwell, came out to see him and did a few tests, and gave him some stronger pills. But he still got weaker and weaker. He stopped going out along the canal; he just couldn't walk that far anymore. Dr Fiona referred him to their Physiotherapy and Occupational Therapy teams and Sarah came out to see him.”
Sarah is one of our occupational therapists, who support patients to continue with activities, or ‘occupations’, that are important to them. These include personal care, staying mobile, and continuing with hobbies and activities that they enjoy. Terry was very independent and wanted to continue managing his everyday life at home himself, as much as possible. Sarah assessed his needs and provided equipment and strategies which would support him to do this as his illness progressed.
“She was very good. She assessed the house to see what support he needed. We had a stair banister which was embedded into the wall; you couldn't put your hand around it. So that's the first thing she sorted out; she arranged for a company to install a new banister. She also provided toilet frames around the toilet, a seat for Terry to sit on in the shower, and a walker. We didn’t need bars and rails all over the house, but there were certain areas where we did, especially on the stairs. We were really concerned though, because Terry was just getting weaker and weaker.”
“About two or three weeks later, Terry started hallucinating. It got worse and worse throughout November, right through to December, to such a degree that we had to ring Phyllis Tuckwell. Lovely Dr. Fiona came straight out to see him, and asked if he would agree to being admitted to their In-Patient Unit, so that they could do some blood tests. By then it was the 23rd of December.”
“So, ultimately, he did go into a hospice, but with the hallucinations and needing tests and everything, he did really need to go there. He was so poorly. When we walked in, he sat down in a chair and they brought out the food menu for him to have a look at. And when the nurse went out, he turned to me and said, ‘I don't think I'm supposed to be here’. It was so lovely, he thought we’d walked into a hotel! And the way they treated him, it was second to none.”
Our In-Patient Unit provides 24-hour care for patients who need symptom management or end of life care. Its doctors, nurses, therapists, counsellors and advisors provide compassionate care, advice and reassurance for patients and their families and carers, who can visit their loved ones at any time of day or night.
"Lorraine and I would go and see him every day, and his family went down there, and in the end we had to do a rota system, because his sister, his two brothers, were all going to see him every day, along with us and a couple of other friends, and it was too much for him, with us all around the bed.”
“When Terry first became ill, he had said that he wanted to spend his last days at home, but once he had been admitted to the IPU, Lorraine and I agreed that there was no way we could provide the kind of care that he was getting there. He had five or six nurses, and all the equipment. It was 24-hour, around the clock care, and we just couldn't have provided that at home. So I was sad, because he had wanted to stay at home, but we knew that the IPU was the best place for him, with the care that he needed.”
“I was working on the morning that Terry died. Lorraine and my brother were both with him, and I got a phone call. I was there within 15 minutes. We knew when Terry came to live with us that he was going to die, but it didn't sink in. It was only when we went on that journey with him that we really realised. All of my energy and time, not just mine but Lorraine’s too, had been on Terry. It was hard, especially towards the end, when I was helping him to shower and get dressed. In the later stages of his illness, if I knew the doctor was coming, I had to start getting him ready two hours before she arrived, it took that long. When he died, on 5th January this year, I went into a black hole that I never knew existed. I couldn't work, I couldn't focus, I was all over the place. It was horrible. All I wanted to do was sleep. Lorraine suggested that I get in touch with Phyllis Tuckwell, and lo and behold, they offered a bereavement service.”
Our bereavement service offers individual and group support to the families and carers of our patients, both during their loved ones’ illness and after they have died. This support enables patients’ relatives and carers to share their thoughts and feelings around their loved ones’ illness and death, in a confidential space where they feel safe and listened to.
“It was a six-week course on the telephone, with a counsellor, and it was really, really good. I had a choice of group sessions, but I chose to do the one-on-one. We spoke about Terry, we spoke about my mum, who had also died recently, and we talked about what I had experienced and how I felt about it all. I can't speak highly enough of Phyllis Tuckwell. I knew about them, before Terry came here, I’d seen the shops, but I didn't really know much about them. When I saw the service they provided, the way they cared for Terry and supported me, it’s just the way they go about things. Everyone loved Terry; he was a really nice guy, he never had an argument in him. He was very special in so many ways, and it was an absolute privilege to care for him.”
