Elaine's story

Kayleigh was referred to St Margaret’s after being diagnosed with terminal cancer. With support from our nurses at home, Kayleigh was able to get her pain under control so she could focus on enjoying the time she had left and spend one last Christmas with her family.

We spoke to Kayleigh’s mum, Elaine, to find out more about the support we gave to Kayleigh and how it made a difference to her.

“When we found out Kayleigh’s cancer was terminal I was absolutely devastated. It almost felt like it was a bad dream that I would wake up from, but it wasn’t, it was real,” Elaine, said. “It was hard on her daughters; Mollie was 3 at the time and Mia was 10 and it was heart-breaking for us all.

“My husband, Stuart, told us we should make the most out of Christmas in 2020 as it could be Kayleigh’s last, but I didn’t want to believe it. I only took one photo that day, but I wish I had taken more. It was a lovely family Christmas.

“Kayleigh was referred to St Margaret’s after the hospital had tried all the treatments available and told us there was nothing more they could do. The biggest issue Kayleigh faced was pain, she had been in agony for a long time and kept coughing so much that she wasn’t able to sleep. A nurse from St Margaret’s came to visit Kayleigh at home. They assessed Kayleigh and started her on some medication straight away to help control her pain and the difference was immediate.

“The hospice nurses continued to visit Kayleigh regularly. After a few months, Kayleigh started struggling to get around the house. The nurses took the time to understand the problems she was facing and ordered equipment to help her.”

Kayleigh and her family on holiday to Paignton 

Every day, St Margaret’s nurses are visiting patients across Somerset with an end-of-life diagnosis, bringing hospice care to them at home. For patients like Kayleigh, being able to access this support is vital as it can help them to make special memories like Kayleigh did on her family holiday to Paignton.

“Before Kayleigh died, we took a family holiday to Paignton with Mollie and Mia. Kayleigh had a bad cough and was weak while we were away, but she didn’t want a wheelchair no matter how much we offered it to her!” Elaine said. “However, after a short walk completely drained her of energy to enjoy the time with her girls she begrudgingly agreed! It turned out to be an amazing trip. We went to the zoo, and she got to spend quality time with the children. I’ll treasure the memory forever.” 

Shortly after the family holiday, Kayleigh’s condition began to deteriorate and by the end of July 2021 she was admitted to our In-patient Unit in Taunton where she stayed for her last 3 weeks. Our nurses and doctors helped to get Kayleigh’s symptoms under control and ensured she was comfortable so she could spend precious time with her family before she died in August 2021 aged 33.

“We were able to stay in the Sunflower Suite in the two weeks leading up to Kayleigh’s death. It was lovely to be by her side. It meant such a lot to us to be close to Kayleigh, especially in the last few days. They set up a bed for me and I stayed next to her in the last two days so I could be right there with her.

“All the while Kayleigh was receiving support from the team at home, Penny from the Family Support Team was also an amazing support to us. She visited us at home and also when Kayleigh was in the unit.

“One of the ways the Family Support Team help young children when a parent is unwell is through transitional objects. The child chooses a set of identical handmade animals, one big and one small which represent the adult and child. The child keeps the big one which represents Mum and Mum keeps the small one to represent the child.

"Parents can bring the animals into conversation so that when they’ve died the animal can bring them comfort and help them remember the time together. These soft toys played quite a big part at that time, I bought some and crocheted some for every member of the family including Stuart and Carl, Kayleigh’s brother. Kayleigh had them all at the bottom of her bed, they meant a lot to her, and I know those soft toysare precious to us all.

“The nurses at St Margaret’s are angels. They are so understanding and were great with the girls. Mia wanted to be with her Mum throughout the journey, so she came to the hospice a lot, but Mollie was too young, she didn’t understand why her Mummy was unwell and found it difficult to be around her, which of course was upsetting for Kayleigh. My niece Annette flew over from New Zealand to be with us while Kayleigh was in the hospice, she was such a massive support to us.

“When I told Mia that Mummy was dying, she flew down the corridor to be with her. The rest of the family came and then Kayleigh died peacefully with us all by her side. They treated Kayleigh with such dignity throughout her illness and carried this through to her death.

“Even now I just can’t believe that I am never going to see Kayleigh again. I’m trying to cope with my grief and help Mia and Mollie with theirs. Some days are easy, and some days are hard, it’s a rollercoaster. Since Kayleigh died, I’ve been speaking to the Bereavement Team on a regular basis which has really helped me and me, Stuart, and Mia had some family sessions together too which were really helpful. Mia and Mollie also attended Samsara this year and I think they really benefitted from it. It was really interactive, and they both met other children who had lost a parent or sibling.

“Samsara also runs a session for adults running alongside the children’s activities, I was nervous about going as I didn’t know what to expect but I got so much from going along. It was nice to speak with other parents/grandparents who were caring for children in similar situations.  I felt like I could discuss my feelings about Kayleigh and listen to others who felt the same way, it was really good.

“The hospice is an amazing place; I can’t praise them enough. I honestly don’t know what I would do without them. The staff are so lovely and will give you support whenever you need it.

“Now as life starts taking on its new normal, we are learning to live without Kayleigh. We miss her and there isn’t a day that goes by that me, or the girls don’t think of her but thanks to the support of St Margaret’s things are slowly getting easier. We started to look forward to things again, signing up to The Colour Run Remix in 2023 being one of them! When I told the girls they were so excited. It was a great opportunity for a family day out, remembering our wonderful Kayleigh and raising money so that other families in our position will receive the care and support they need. It was just a great way for us to say thank you.”

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