Wendy and Robert’s Story

“Wendy was wonderful,” says Robert. “She was gorgeous, funny and kind, and she really made my world sing. I’d wake up every morning, look across at her and feel like I’d won the lottery.

Robert’s wife, Wendy, was 62 when she started having stomach problems. After a year or so of being ill, with investigations not finding anything, Robert took a sabbatical from work and he and Wendy went away together, travelling to New Zealand. While they were there, however, Wendy’s illness worsened. She underwent an operation, during which doctors found a tumour which had been blocking her small intestine and causing her illness. Wendy and Robert returned to England, where Wendy started treatment at Mount Alvernia Hospital, but soon after the treatment started they were told that the cancer was terminal, and were put in touch with the team at Phyllis Tuckwell.

“We knew it wasn’t curable,” says Robert. “It was more a question of treatment to extend Wendy’s life and improve the quality of that life. One of Phyllis Tuckwell’s Clinical Nurse Specialists, Emma, came to see us at home, and talked to us about the options that Wendy had.”

Our Clinical Nurse Specialists (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 therapies or counselling, and also support patients’ families too.

“Emma talked us through the options for Wendy’s end of life care, and explained the support that Phyllis Tuckwell could offer us if Wendy decided to stay at home for her final days. She also put us in touch with Karen, one of Phyllis Tuckwell’s counsellors. Wendy chatted with Karen, but decided she didn’t want any regular counselling sessions at that time, so it was left open for her to get back in touch with Karen if and when she wanted to. It was really good to have that flexibility and openness, because a little while later Wendy did decide to go back to Karen, and ended up having counselling sessions with her once a fortnight, for a good six to nine months or so. We’re a very close family. Wendy and I have four children, Ozzy, Luke and Kelly who all live nearby, and our youngest, Tallulah, who still lives at home, and Wendy is also very close to her sister, Ava, so there were a lot of us here for her, but talking to Karen was different because she wasn’t personally connected to Wendy or her situation. Those sessions became really important to Wendy, because they gave her the opportunity to speak to someone outside of her circle of family and friends. I think she found it a relief to be able to talk openly to somebody about her fears and concerns, and not worry about how they themselves were feeling about it all.”

“Wendy was extraordinarily brave in way she approached her illness,” continues Robert. “She spoke to our priest about the service she wanted for her funeral, and went to the local cemetery to pick out the spot where she wanted to be buried. She wanted everything to be in place before she got seriously ill.”

“Phyllis Tuckwell weren’t all that heavily involved in Wendy’s care at first. Emma kept in touch and visited a few times, but that was all that was really needed at that point. Wendy’s treatment was quite successful initially; she responded well to the first few rounds of chemotherapy. She had six months of treatment, then three months rest, and then another four or five months of treatment. It was then that we were told the chemo wasn’t working anymore. It was making Wendy ill and, as it wasn’t actually helping to reduce the tumour anymore, we took the decision for her to come off it altogether and allow the condition to progress without intervention.”

“All the while she was under the care of Mount Alvernia, Phyllis Tuckwell were in the background, and we knew that even though they weren’t involved in Wendy’s chemotherapy, we could call them if we needed to. When Wendy came off the chemo, that was when the emphasis switched to palliative care and Phyllis Tuckwell became more involved.”

Our clinical teams work closely with other local healthcare providers, including GPs, hospitals and District Nurses. By linking up our care, we are able to provide one joined-up service for patients and their families, with each team involved knowing what care the other teams have been providing so that we can coordinate our services.

“It felt like a seamless transition from being cared for by the team at Mount Alvernia to being cared for by Phyllis Tuckwell and the District Nurses,” says Robert. “We were feeling very vulnerable at that time, so we were really grateful to know that we were in this connected support network. We weren’t once left sitting there wondering what was coming next. Phyllis Tuckwell and the District Nurses stepped in straight away and worked together. It gave us the confidence that we were going to get the care and support we needed.”

“Tori, one of Phyllis Tuckwell’s Occupational Therapists, got in touch with us. She used video call because of Covid, and was able to assess Wendy remotely. She asked me to take a few measurements around the house, and ordered some equipment for Wendy, including a perching stool for her to use in the shower, which enabled her to keep her independence that bit longer.”

As Wendy’s condition deteriorated, she and her family needed more and more support from Phyllis Tuckwell.

“What was impressive was the speed with which Phyllis Tuckwell was able to ramp up the support they offered Wendy, as her illness progressed quite quickly,” says Robert. “She went from being relatively independent, to needing more and more help. Emma visited again and we discussed Wendy’s options for end of life care. When she was first diagnosed she had thought that she would spend her final days in the Hospice, but by the time we reached that stage Covid had changed things significantly. We knew that visiting would be limited if she went to the Hospice, so we decided that she would stay at home and that I would care for her there, with the support of Phyllis Tuckwell’s Care at Home team.”

Wendy was visited by one of our Doctors, Dr Sarah, as the cancer was starting to cause complications and Wendy was getting more symptoms.

“It was such a hard time for everybody,” says Robert, “especially Wendy. She was often in a lot of pain. It was frightening. I was so worried about her, my anxiety went through the roof. One of the most important aspects of the support we got from Phyllis Tuckwell was that we could call them at any time of day or night and someone there would help us. They were there for us 24 hours a day, 7 days a week. I called them quite a lot; I was speaking to someone at Phyllis Tuckwell at least every other day and sometimes more.”

Dr Sarah visited Wendy several times to help manage her symptoms.

“The Covid pandemic meant that everyone was wearing PPE, but it didn’t make any difference,” says Robert. “The Doctors and Nursing teams were so professional and still provided all the support they usually would. They didn’t appear to be phased by Covid at all. Phyllis Tuckwell’s Care at Home team worked in conjunction with the District Nurses and also with Wendy’s GP, who had also supported us throughout her illness. They were all part of one joined up network.”

Robert and Ava had been Wendy’s carers up until that point, but as her illness progressed she needed more support with personal care.

“The District Nurses saw that, and suggested that now would be a good time to arrange for a care team to come in, to take care of that side of things. They spoke to Phyllis Tuckwell, who arranged for their Hospice Care at Home team to start visiting, to help Wendy wash and dress. There was this seamless cooperation between Phyllis Tuckwell and the District Nurses; it was like they were one big team. Wendy had an abdominal drain, so the District Nurses were coming in every day to see to that, but they would co-ordinate their visits, so the Hospice Care at Home team would come round first and help Wendy to have a shower, or when she got more poorly a bed bath, and then they’d be all done by the time the District Nurses came round to sort out the abdominal drain. Just that little thing, timing it like that, made such a big difference to Wendy. It meant that she always felt clean and ready for the District Nurses when they arrived.”

“The Hospice Care at Home team were a wonderful mix of compassionate, warm and genuinely empathetic people. They were friendly, cheerful and always able to make Wendy smile. They were very professional too, really good at their job. You always felt like you were in safe hands with them – you can’t appreciate how important that is until you’re in that situation. It never felt like they were in a hurry, either. They were never rushing to get finished and leave. It was always a positive experience whenever they came.”

“Wendy was still able to get around the house at this point, but her condition soon started to deteriorate. Phyllis Tuckwell arranged for us to have a hospital bed delivered, in fact they arranged most of the stuff we had, like a commode and a pressure mattress. They were brilliant at seeing ahead to what Wendy would need and making sure we had it in place ready.”

What really helped me what that I didn’t have to worry about phoning people up and organising for us to get all this stuff – they did it all for me. I never had to chase anything; they were so quick and efficient. Having them support us in that way took a lot of the pressure off me. End of life is a hard time, but it’s a very important time too. You don’t want the final months, weeks and days to be made even harder by having to organise and arrange things, you just want to focus on your loved one and make that last bit of time with them as happy as it can be. Palliative care has such a big impact on that.”

Because our Hospice Care at Home team and the District Nurses were providing Wendy with the care she needed, and supporting Robert with advice and reassurance too, he was able to concentrate on spending precious time with Wendy, as her husband rather than as her carer.

“I spent those last weeks and days making sure Wendy was as comfortable as she could be, and had as much love and attention as she could get. I was able to focus on other things, like organising family visits, because her personal and medical care was being taken care of by Phyllis Tuckwell. She was being so well looked after. It was very hard as it was, I can’t imagine what it would have been like without that support. Time became very different at the end. Those emotional days become very long; it was a long few months of my life. I was coping, but that was mostly because I was so focussed on my role of making sure that Wendy was ok. The Hospice Care at Home team knew that I needed support though; all the people I spoke to at Phyllis Tuckwell realised that. Normally I’m a very self-sufficient person – I don’t often look for help, but I really needed it then. The Nursing team were coming to the house at a time when everyone was vulnerable, and they made the whole situation easier for us. It felt like friends coming to the house; they never felt like strangers. And it wasn’t just the Nursing team and the doctors who came to the house who were wonderful, it was also whoever was at end of phone when we called. They were patient, friendly, and I always felt as though I was talking to a human being. You build a relationship with them quite quickly, which is really important.”

“During her last few days, Wendy wasn’t able to get out of bed. She deteriorated quite quickly at the end. She was in quite a bit of pain on the morning of the day she died, and the District Nurses had been round to see her. All of the family were there with her too – our four children and also Ava, Wendy’s sister, who had been living with us for a year or so, to help care for Wendy and support us all. Wendy and Ava had always been very close, so it was really nice to have her there with us. When Wendy died we were all with her, around her bed. It was the hardest time of my life, that last 24 hours. We tried to make it as comfortable as possible for her. Right at the end, Tallulah, our youngest daughter, sang Wendy’s favourite song, ‘Summertime’. It was really beautiful and so special. Just a couple of minutes later, Wendy died. We were so glad that she had been able to spend her last days at home, where she could be surrounded by the people she loved.”

“After she had died, we called the District Nurses to let them know and one of them came back to the house. She washed Wendy and put some fresh clothes on her, and some make-up. Then she laid her out with a rose next to her. It was such a beautiful thing to do.”

“I spoke to the team at Phyllis Tuckwell and told them that Wendy had died. We were all offered bereavement counselling, which I haven’t had so far but which Ava has had and has found very supportive.”

“Before Wendy died, I had spoken to her about possibly doing some fundraising for Phyllis Tuckwell, to give something back after all the amazing care they had provided. Wendy had done some fundraising for them before – she’d held a cake sale, and Ava and a friend had both done a sponsored head shave. Wendy had wanted to do some more fundraising herself, but she wasn’t able to because of all the Covid restrictions that were in place at the time. I told her that I’d thought I might do a sponsored Three Peaks Challenge, and cycle from one mountain to the next. She thought I was mad! I was only really a local cyclist, rarely doing more than 20 miles, and certainly never up more than just a gentle Surrey hill! After Wendy died, I decided to go ahead with the challenge. It was the end of April 2021. I had arranged the funeral and sorted out Wendy’s things, and had agreed with work that I would go back at the end of June. I knew that I needed to spend the time I had before that doing something positive, something that would make a difference, and also something hard and physical that would be cathartic. I had just spent two years caring for Wendy, and suddenly all that was gone. I needed something to focus on. I knew that Phyllis Tuckwell needed a huge amount of money to be able to provide its care, and thought that with Covid things were probably doubly difficult, so I set myself a target of raising £1,000 for them. I hadn’t been on bike for six months, so I started training and managed to cycle a few hundred miles over two or three weeks. During that time I also booked all my accommodation and worked out my itinery – once that was in place there was no turning back!”

“I set off 1^st June, and started by climbing Ben Nevis. I’ve climbed a few mountains over the years, but all when I was much younger. Ben Nevis is a long way up and a long way down! I injured my knee on the way down too, which set me back a bit. Once I’d finished the climb, I made the long cycle ride to peak two – Scafell Pike. Cycling in Scotland is hard – you’re either going up or you’re going down, there are no flat bits. The second day of cycling was the hardest. I remember getting to end of that day and thinking that I wasn’t going to be able to carry on. But I took it day by day and pushed through. I didn’t worry about how long it was going to take, I just kept pedalling and walking.”

“Although the Scottish leg of the challenge hurt like crazy, it was wonderful being out in such a remote, isolated place, just me on my own. It was what I needed. Everyone I met there was so kind. If I stopped by the roadside, people passing by would ask if I was alright, or sometimes just stop for a chat. When I told them what I was doing, some even sponsored me. That empathy and kindness meant so much. On day three I took the ferry over to the Isle of Arran, which was stunningly beautiful, then caught another ferry to my accommodation for that night. My sister, Suzanne, and her husband joined me for the Scafell Pike climb, and then I was off to Mount Snowden. Although I had company during the climbs, I did all the cycling parts on my own, apart from the penultimate leg when I was joined by my eldest son, Ozzy, and some of his work colleagues. He works for Turtle Beach, and I was joined by the CEO of the company, who is a keen cyclist, and some of the other guys who work there. Together we cycled 40 miles through Wales – it was nice having that bit of company, and knowing that I wasn’t the only one who was tired and aching all over!”

“I finished the challenge on 18^th June, on what would have been Wendy’s 66^th birthday. I was joined by all my children, along with my sister and brother. It was a very emotional day. I’d taken just two rest days, and was elated but exhausted. I’d aimed to raise £1,000, but had hit an incredible total of £14,147. Turtle Beach alone had donated £6,000!”

“I’m so pleased to have been able to raise this money for Phyllis Tuckwell. I cannot over-emphasise how important all the staff and volunteers there were in allowing us to give Wendy the end of life she wanted. They enabled her to spend the last weeks and days of her life in the comfort of her own home, with her loving family. They were unceasingly kind and compassionate, but also very professional. Because of them, all I had to worry about was giving Wendy all the love and attention she needed at the end of her life.”