Hospice News

Patient & Carer Stories

Here's Leslie and Elaine's story told by their daughter, Kirsty...

Kirsty's dad, Leslie, was diagnosed with Advanced Melanoma in April 2022. He received immunotherapy but suffered a severe reaction, leading to a three-month hospital admission and an additional diagnosis of Myasthenia Gravis, a rare condition that causes muscle weakness. It was at this point that the family were told no further cancer treatment could be given to Leslie.

Leslie and Elaine

On discharge from hospital, Leslie needed care as he had a nasogastric tube - a thin plastic tube that helped him get the nutrition and hydration he needed, as he didn’t have the ability to swallow. Kirsty and her sister, Tammy, took on care responsibilities to support their mum, Elaine, taking it in turns to stay at their childhood home to oversee medication and feeds as Elaine didn't feel confident doing it by herself.

During Leslie's hospital stay, Elaine was feeling unwell, but it was put down to worry and stress. Once Leslie was out of hospital, Kirsty and Tammy encouraged Elaine to book a GP appointment. What followed was a series of tests and scans, and devastatingly, a terminal lung cancer diagnosis.

Elaine's health deteriorated quickly, and her GP referred her to St Peter's Hospice. The very next day, a St Peter's nurse from the Community Nurse Specialist team visited their home. Kirsty and Tammy, who were now caring for both parents, had previously felt as though they didn't know what they were doing, so were amazed by how much support the St Peter's team could offer. As well as supporting Elaine with personal care, they also engaged district nurses to help with practicalities such as ordering a bed which could be set up downstairs. The St Peter's team also helped support the family with advance care planning.

Elaine, who was naturally quite an independent person, was initially reluctant to accept support or acknowledge the need for a bed, but soon saw the benefits and quite quickly began to welcome the Palliative Care Support Workers into the home for their support. Kirsty describes them as being "bubbly, yet calm and steady. They had an amazing level of care and attention for mum."

Kirsty recalls one day when the St Peter's support worker said she offered a 'sit and stay' and told Kirsty and Tammy they should go and do something for themselves. At first, Kirsty and Tammy were taken aback - they had become so used to caring for their parents that they had forgotten they needed time for themselves too. That day they went out for coffee together, safe in the knowledge that their mum was being looked after.

Leslie, Elaine, Kirsty and Tammy

During the weeks leading up to Elaine's death, the family also had support from a night support worker who visited the family overnight, meaning Kirsty and Tammy could focus on caring for their dad through the night.

Elaine passed away just three weeks after her diagnosis, but the family felt relief that the care their mum had received up until that point was consistent, and dignified. Whilst it was a traumatic time, the family also felt a sense of peace, knowing Elaine was settled. Reflecting on that time, Kirsty said: "St Peter's helped so much during those final two weeks. I'll never forget one of the team saying to me 'we're here so you and your sister can be daughters again, and not carers'. That meant so much to me and I realised I had got so tied up in caring and performing a role. That will stay with me forever."

Following the loss of their mum, Kirsty and Tammy continued to care for their dad. But it took its toll, and Kirsty sought further support from St Peter's through the bereavement therapy service. She said: "I was really struggling but didn't realise how much. As the oldest child, I took on the role of protector and looking back I don't know how I coped. During those therapy sessions I had many lightbulb moments. One of which being that I realised that the roles had reversed - my sister and I were now the parents, and our parents were now the children. Therapy helped me to understand that I didn't have to do it all by myself. It was invaluable."

Whilst Leslie's health had been relatively stable during Elaine's illness, following her death, Leslie's health started to deteriorate. In March 2023, the family were told his cancer was progressing and there was still no further treatment options for the cancer. At this point, the family knew what support St Peter's could offer. Following a referral, Kirsty said when she put down the phone after that first call with St Peter's, she sighed relief as she knew they were going to get the support they needed.

Leslie, Elaine, Kirsty and Tammy

When the support workers showed up, they remembered Kirsty, Tammy, and Leslie. "That was an amazing thing," said Kirsty. "They see so many different patients and meet so many families, and they remembered us." Leslie had support from St Peter's in the days leading up to his death, and he sadly passed away on 7 July 2023.

Unfortunately, the family's story doesn't end there. Since the passing of Leslie and Elaine, Kirsty's uncle and Kirsty's husband's auntie have both passed away but both received care from St Peter's. "My husband's auntie and family tried to cope on their own and initially declined support. I really encouraged them to take the support they were being offered by St Peter's, and once they accepted that help, I do think they wished they had taken that support sooner."

Following the loss of both parents, Kirsty is determined to give back to St Peter's. She's taken on a range of fundraising challenges including a 50k walk and she regularly volunteers at fundraising events including Tour de Bristol and the Rugby March.

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