When Rhona’s husband, Chris, was diagnosed with terminal secondary bowel cancer, his GP and hospital referred him to Phyllis Tuckwell.
They were contacted by one of our Clinical Nurse Specialists, (CNSs), Sophie, for an initial introduction and assessment to find out what support Chris and Rhona needed.
“Sophie was fantastic,” said Rhona. “She was the font of all knowledge! She put the practical side of care in place and also referred us both for counselling.”
Our CNSs are often the first members of our team to see new patients. They play a pivotal role in determining each individuals’ needs, and referring them on to other services within Phyllis Tuckwell, such as occupational therapy, complementary therapy or counselling.
“Chris was sceptical about the counselling, but he went along and actually benefitted hugely from it. He died at peace. I had counselling too, which I carried on with into bereavement.”
As well as referring them for counselling, Sophie also introduced Chris and Rhona to our Living Well service, which is designed to help patients and their families to manage their symptoms so that they can live everyday life with their illness. It includes support through physiotherapy, occupational therapy and complementary therapies, as well as sessions on specific topics such as resilience and remaining active.
“We were both offered complementary therapies, and I had some massages from Vanessa, one of Phyllis Tuckwell’s Complementary Therapists. I was so tense with all the stress of coping with Chris’s illness, that my muscles were as stiff as a board! Chris had aromatherapy and reflexology, which he also found very beneficial. He used to get dry, itchy skin, and he also found it hard to sleep, so they made some lotions for him using essential oils, which really helped. We both went to a session on relaxation, and Chris participated in a resilience course. That was really good; it helped him a lot. He learnt about pacing himself and prioritising, and got lots of ideas of how to conserve his energy. He also said it was good to interact with other patients and see how they approached the thought of death. Throughout his illness, Chris was always remarkably accepting of death. He was open to talking about it; it was never a closed subject.”
As well as caring for our patients, we also support their families and carers too. Many family members are the primary carers for our patients, looking after them day and night at home, with support from our team. Our Carers’ Group, held at the Beacon Centre in Guildford, where we run many of our group sessions, offered Rhona a place where she could go to meet other people who were in a similar situation to her, and find out more about what support she could get as a carer.
“There was a mix of people there,” said Rhona. “Some had partners who had longer term illnesses, like Motor Neurone Disease or Multiple Sclerosis, and some who had shorter term illnesses as Chris did. There were visiting speakers and they talked about a range of topics; things like resilience for carers, for example. It was nice to meet other carers and be in a group where we could be honest about the situation and just say ‘it’s rubbish!’ We were allowed to complain, and we all knew what everyone else there was going through.”
“As well as seeing people at the Hospice, we were also visited at home. Tori, one of Phyllis Tuckwell’s Occupational Therapists, came to assess what equipment Chris might need, some of which Phyllis Tuckwell supplied and some of which we got through the NHS. We had a hospital bed, an over-bed table, a walking stick and a ‘glideabout’ chair – which became our new best friend! It was lightweight and designed for indoor use, and using it meant that I could move Chris around the house, from his hospital bed to the kitchen, to the downstairs bathroom, to the lounge. He could remain part of family life, and didn’t have to stay stuck in bed in one room, with people having to go in to see him.”
As Chris’s illness progressed, he and Rhona were shown around the In-Patient Unit (IPU), in case Chris needed to be admitted towards the end of his life.
“It was good to have a look around the IPU, but Chris’s wish was to die at home,” said Rhona. “He was cared for at home by our wonderful CNS, Sophie, and another CNS called Luke. They worked closely with our District Nurses and also our GP, who made sure Chris got the medication he needed. We were also visited by Phyllis Tuckwell’s Hospice Care at Home (HCAH) team for a short while, but Chris wasn’t really bedbound until the very last few days of his illness, so we didn’t need their support for all that long.”
Our HCAH nursing team visit patients who have chosen to spend their last days, and to die, in the comfort and familiarity of their own homes. They visit as much as is needed, offering important nursing care for patients, and emotional support for their families and carers, too.
“Throughout our time with Phyllis Tuckwell, Sophie always made sure that we knew how Chris’s illness would progress. She told us about the symptoms that he might experience, and we felt forewarned. I knew what to expect, and so when it did happen, I wasn’t shocked and didn’t panic. It made things that bit easier. Because Phyllis Tuckwell are specialists, they have a great deal of experience in end of life care. Their CNSs have seen lots of different scenarios, so they can support you really well because they know all of the different things that you might be faced with.”
“Before Chris died, Phyllis Tuckwell put us in touch with a company who offer a biography service. A lovely lady from the service spent an hour with Chris, recording him as he talked about his life, and we were given a USB stick with his voice on it, telling his story. It’s very special; I’ve got his voice forever now. We also held a goodbye party for him, so that people could say nice things to him while he was still alive, instead of saying them about him after he had died. The party was in January 2020, he died in the February – and then Covid hit and we all went into lockdown in the March. That was mixed for me. It gave me the opportunity to stay in and not have to go out, because no-one was going out. I didn’t have to pretend. I could just be on my own. But then when lockdown lifted and things went back to normal, that was harder for me because I have no normal now, I’ve got to make my own new normal.”
“During lockdown my counselling continued, but went to video call, which was not ideal but definitely better than nothing. I was invited to join First Steps, a bereavement group for those whose loved ones have recently died. I made some really good friends there, whom I still meet up with now. It’s been two years since Chris died; people ask how you are and want to hear that you’re OK, but sometimes you’re not. The others from First Steps understand that. We had six fortnightly sessions, and then were invited to join Second Steps, the next bereavement group, with another First Steps group.”
“Another very therapeutic thing which I have found has really helped me is quilting and sewing. I’ve taken some of Chris’s clothes – his shirts, ties, handkerchiefs, that sort of thing – and have used them to make quilts, cushion covers, and pictures to hang on the wall. Using some of them to make an item like a quilt or cushion, which I now use every day, meant that I was able to then let go of the rest of them, knowing that I had kept part of them. By repurposing them, I was able to move forward.”
“Chris and I really valued all of the services that Phyllis Tuckwell offered to us to make his last months meaningful and fulfilled. He had a good death. We were supported all the way through. It was inevitable – everyone has to die at some point but he was far too young. We had had precious time to prepare, although there is never really enough time. We were lucky that we had Phyllis Tuckwell, our amazing District Nurses, and a really good GP. All of the care that we received was joined up; all the different care providers knew what each other was doing. Everyone was so kind and caring, and nothing was too much trouble. And I have some wonderful memories to take with me into the future.”
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