“Mum was fit and healthy,” says Dawn. “She hadn’t seen a GP for over 40 years!” Marion lived with her daughter Dawn, who has Parkinson’s disease, and Dawn’s husband Mick. She had started suffering from abdominal pains but, despite their increasingly severity, refused to see a doctor. “Then one morning she woke up and the pain was so bad that she said she would go to see her doctor,” says Dawn.
Marion’s doctor examined her and said that he thought she had bowel cancer. “I remember thinking that it must be bad, if he was confident enough to say that straight away” says Dawn. Marion was sent to Frimley Park Hospital where she was seen straight away. She stayed overnight, and when Dawn came back the next morning the doctors took her to one side. They told her that her mother had terminal ovarian cancer.
Marion was very ill and stayed in hospital for a few days, but she was determined to return home. Both she and Dawn told doctors that Dawn would be able to care for her at home, and it was agreed that she would be discharged from hospital. “Mum was desperate to come home,” says Dawn, “and I wanted her to.” However, Dawn’s family were worried that caring for Marion on her own, 24 hours a day, would be too much for her.
When they had discovered Marion’s cancer, the doctors at Frimley Park Hospital had referred her to Phyllis Tuckwell Hospice Care, and on her return home she and Dawn were visited by Caroline, one of the Clinical Nurse Specialists from our Care at Home team. “We met her a few times,” says Dawn. “She was excellent. I could get hold of her easily, and I felt supported by her. She was very nice; we liked her very much. I felt that I could call her at any time.”
Our Clinical Nurse Specialists 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 patient’s individual needs and the needs of their families, and referring them on to other services within PTHC, such as physiotherapy, counselling or the In-Patient Unit, where appropriate. 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.
Caroline explained to Marion that as the disease was already at an advanced stage, she was nearing the end of her life, and hearing this helped both Marion and Dawn to understand and accept what was happening. “She said it could be one month or it could be two, and in the end it was just over one month, so she was about right,” says Dawn. Caroline gave Marion and Dawn advice on planning ahead – sometimes called ‘Advance Care Planning’ – to think and talk about Marion’s wishes for how she would like to be cared for at the final stage of her life. They also discussed potential problems which might arise, so that Marion and Dawn would be prepared and would know what to do.
At first Marion was fine and enjoyed being back at home, but a few days after being discharged from hospital she collapsed. Dawn called an ambulance, but when paramedics arrived they couldn’t find a pulse. As they tried to move her, Marion regained consciousness and started calling for help. The paramedics took her to Frimley Park Hospital, but told Dawn that they thought Marion needed to go to a Hospice. Marion stayed in hospital for a few days, and saw the cancer specialist, before being allowed home again. A few days later she collapsed again. “She was very sick,” remembers Dawn. “It was awful.” Marion was taken back to hospital where she stayed until a bed became available on Phyllis Tuckwell’s In-Patient Unit (IPU).
“Mum came to the IPU in December,” says Dawn. “Even though she had wanted to stay at home, she accepted that she wasn’t able to. She knew she was going to die, but she would still talk about going home. She told the IPU nurses that she didn’t want to know when she was going to die, though. They were wonderful; they were second to none. I, and my sisters Julie and Sandra, are all so grateful for the dignity that Mum was shown. Everyone was very kind. She was very well looked after. She had a lovely massage on her hands and feet from one of the Complementary Therapists, and they washed her hair for her too. She loved it, she absolutely adored it. They were so nice to her.”
Marion also took part in one of our Social and Therapeutic Horticulture classes, where she made a Christmas wreath. She went to our Hospice Christmas Fayre, which was held in our Dove Lounge, just down the corridor from IPU, and which she also really enjoyed. “She wasn’t a sociable person,” says Dawn, “but she was when she was in the Hospice. She really came out of herself. I was so pleased to see it.”
Dawn visited her mother at the Hospice every day, and Phyllis Tuckwell staff cared for her as well as for Marion. “I can’t fault them. The staff all smiled at you, and the Complementary Therapist gave me a neck massage, which was really relaxing. The coffee shop lady was lovely too; she was extremely kind. We were able to stay with Mum until she died, which was in the early hours of Saturday morning on 9th December.”