Diane’s husband Martin was diagnosed with cancer in January 2018. As his illness progressed he was referred to Phyllis Tuckwell, and we cared for him both at home and on our In-Patient Unit. After Martin’s death, Diane found comfort and support through our individual and group counselling sessions.
“Martin had a tumour on his kidney,” says Diane. “They were going to operate, but unfortunately it just wasn’t possible in the end. We were referred to the cancer unit, and that was when Phyllis Tuckwell got involved. One of their Clinical Nurse Specialists came to see us at our house, just to make us aware that they were there to support us if we ever needed them. They said they could help with his care, and as his illness progressed they could start to see him on a regular basis.”
Our Clinical Nurse Specialists (CNSs) are often the first members of our team to see a new patient, and are able to introduce our services to these patients and their families. They are pivotal in assessing each patients’ individual needs and the needs of their families, and referring them on to other services within Phyllis Tuckwell where appropriate, such as our Care at Home team, In-Patient Unit (IPU), or counsellors. As each patient’s illness progresses, their needs may change and their CNS will be mindful of this, referring them on to each relevant team as and when they need additional or different care and support.
One weekend, Martin started to feel quite sick. “He was regularly nauseous and quite often sick, but this was worse than usual,” says Diane. “Our District Nurse suggested that she ring Phyllis Tuckwell and ask them to come out and see him. She thought it might be that he needed a blood transfusion or something.”
One of Phyllis Tuckwell’s CNSs came to see Martin on the Monday, and arranged for him to be admitted to the IPU for a blood transfusion. “She found him a bed on the provision that he was going to go for a blood transfusion, and also to see what it was like on the IPU,” says Diane. “So he went in to have the blood transfusion and they did that, but quite slowly, over a couple of days. Normally that perked him up, because he had had quite a few blood transfusions over the course of his treatment, but this one didn’t really make his blood count any better. So he was then kept in under observation to see how he went, and that’s when we had talks with doctors about what was going to happen next.”
When Martin was admitted to our IPU, it was quite a relief for Diane. “By this time, Martin already had a bed downstairs at home. He was quite a big chap, so it would have been hard for me to look after him as he became more ill, especially when he became bedbound. I just wouldn’t have been able to – I would have had to have round-the-clock care for him. So for me it was a relief when he was admitted, that someone was looking after him. I could go and visit him, and then come home of an evening and not worry, knowing that he was in safe hands. Then I could go back refreshed the next morning to spend the day with him. And he wanted to go there too. He knew it was for the best.”
When Martin was admitted to the IPU, it had been intended that he would then go back home once his symptoms had been brought under control. However, his condition continued to worsen over the following days, and Phyllis Tuckwell’s doctors recommended that he stay on the IPU so that he could receive 24 hour medical and nursing care.
“We started making plans for him to come home,” says Diane. “We had equipment delivered for him so he could come home, but by this time he was very weak. He then became bedbound, and soon after that he said he wouldn’t be coming home. I think he knew that he wouldn’t quite soon after he was admitted. He made that decision himself. And for me it was a relief, because I didn’t want him to die at home, I didn’t want that memory, for me or for our two sons.”
There are no visiting restrictions at the Hospice, and visitors can come and go at any time of day or night. “Martin had lots of visitors,” says Diane. “Someone would go and see him every day, whether it was work colleagues, friends, our two boys, or Martin’s mum or brothers. We had visitors throughout the day and into the evening. You could come and go as you wanted, there were no time restrictions, which was great. When he was there I visited twice a day. I’d go there in the morning, stay until early afternoon, then come home and make the boys their dinner, and then go back in the evening. For the last four or five days before he died, I stayed there overnight as well. I’d come home to see the boys in the afternoon, and then go back in the evening and stay for the night. I slept next to him, on one of the recliner chairs. He had his own room, so it was quite private. There is a relative’s room which I could have stayed in, but I just wanted to be with him.”
The compassionate care and support which Martin and Diane received on the IPU helped them greatly at this difficult time. “The nurses were brilliant,” smiles Diane. “They couldn’t do enough for you. Nothing was too much trouble. When you rang the bell, they would come straight away. They would wash Martin and help to make him comfortable. The Housekeeping staff would make me cups of tea, cups of coffee, bacon sandwiches when I stayed, they were just so friendly. In the evening when Martin was sleeping but I couldn’t sleep, I’d go and chat to the nurses, or go for a little walk along the corridors, just to get a bit of headspace. I didn’t really know what to expect when he was first admitted to the Hospice, I’d never been to one before, but it was just so warm and welcoming. The care they give there is above and beyond. I can’t thank them enough.”
“The doctors were lovely too, really nice. We had two doctors and they were quite honest with us right from day one. They were very open with Martin, asking him how he felt, inside and outside, and asking him if he had any concerns. Martin knew he had cancer and I think he knew he was dying, but he just took it all in his stride and accepted it, which I think is quite brave.”
Phyllis Tuckwell’s Patient and Family Support team offers emotional, financial and practical help to its patients and their families, and Martin, Diane and their two sons were all asked if they would like to speak to one of their counsellors. “Martin didn’t want to see a counsellor,” says Diane, “and initially neither did I, but as time went on I did talk to a couple of them. They would come and find me, and ask me how I was doing. I had a couple of chats with them while Martin was resting. They were very kind.”
Martin’s condition continued to deteriorate, and one weekend became quite a lot worse. “He was fine until the Sunday,” says Diane. “We had lots of visitors, and he was talking and joking with them. He never lost his sense of humour all the way through his illness, which was him to a tee. But on the Sunday he started to get a bit agitated, and by the Monday he was sleeping a lot. I stayed overnight on the Monday and popped home for a few hours on the Tuesday morning, but when I went back to the Hospice later that day the doctors told me that they thought it would be today. One of his brothers was already there, he had taken over from me in the morning, because as a family we had decided that we would make sure someone was with Martin 24 hours a day. So I phoned his other brother and he came, and Martin’s best friend came too, and we all sat there together just talking – talking about Martin, talking amongst ourselves, trying to make it as peaceful as possible. And he was peaceful, which is what we wanted. After he died, the nurse opened the window to let his spirit out. It was such a lovely thing to do. There were a couple of ladies whose mum was staying in the room next door, and they came out and gave me a hug, and said they were sorry. I was in no fit state to drive, so my brother-in-law offered to drive me home. I left my car at the Hospice to collect the next day, and the nurse walked me to reception with her arm around me, to check my car would be ok overnight and to see me off. She was so lovely.”
After Martin’s death, the team at Phyllis Tuckwell continued to support Diane and her family. “The day after he died, I went to pick up his belongings,” she says. “They give you lots of leaflets and information on help and support, so when I got back I went through it all. There was a leaflet about counselling, and I thought it would be a good idea to talk to someone, so I filled in the form there and then, and sent it back. Martin died in November 2018 and I started seeing one of Phyllis Tuckwell’s counsellors in January 2019. I had individual counselling every two weeks, and it really helped. I finished that in the August, and was then invited to a group counselling session which started in the November. I was a bit apprehensive, because I’m not very good at talking in a group and I didn’t quite know what to expect. I decided to go along to the first one and see what it was like, and then maybe not go back if I felt it wasn’t for me. I needn’t have worried though – they were lovely, such a nice bunch. There was no pressure. If you got upset, it didn’t matter. You could laugh or cry, and no-one looked at you differently. Everyone was there to support you. I was really glad I did it.” “The support we received from Phyllis Tuckwell was amazing. I couldn’t have wished for anything more. They were all brilliant, they deserve medals!”