“Paul was always a very active, sporty person,” says Carol. “He played golf and bowls every week, and we both loved going cycling and playing tennis with friends. We would organise skiing trips and walking holidays every year, and regularly met up with friends for walks. We have known about and supported Phyllis Tuckwell in the past, taking part in Walk for the Wards a few years ago and also supporting them through our golf club’s fundraising days. We were also volunteer Puppy Walkers for the Guide Dogs Association. After our last puppy left for training school in 2018, we decided that we’d have a short break and then take on another pup for a year, but that all came to a halt when Paul became ill.”
Paul was diagnosed with skin cancer in July 2019. As his illness progressed he was referred to Phyllis Tuckwell, and in November he and Carol were visited by Pam, one of our Clinical Nurse Specialists (CNSs).
“Pam would visit us at home,” says Carol. “She would ask Paul how he was feeling and adjust his medication if it needed changing at all.”
Paul’s condition deteriorated throughout February, and he spent a week in the Royal Surrey County Hospital.
“When he came home, we were visited by Phyllis Tuckwell’s Occupational Therapy and Physiotherapy teams, to loan us some specialist equipment for him to use. We also had a visit from Dr Sarah, who reviewed Paul’s condition, as it had worsened quite significantly. In addition to her very thorough and in-depth review, she referred Paul to the Hospice Care at Home service, and we had a visit from Aileen, one of the team, soon afterwards, to find out what help we needed. Two of their Health Care Assistants also started visiting us twice a week to help Paul with washing, shaving and changing clothes.”
“Following Dr Sarah’s visit, Pam was available to further discuss pain management and medication. Having those visits from her, and the weekly phone calls she made to us too, was really reassuring. I was also able to call Phyllis Tuckwell’s Medical team if I was unsure of how to handle any medical issues that arose or needed to clarify drug usage. The ability to call and speak to someone at any time was a great lifeline for me.”
As Paul’s illness progressed, Pam suggested that he be admitted to the In-Patient Unit (IPU), where he could receive 24 hour specialist medical and nursing care. “His symptoms had become more acute,” says Carol, “and he needed the medical care that the IPU would provide. Pam was very timely in her recognition of this.”
“Both Paul and I felt the inevitability of the journey we were on. Paul accepted the need for us to take this next step of going to the Hospice; he knew it would help relieve the pressure on me, and that he would receive the increased medical care he now needed. His condition had worsened quickly, and it was really hard to watch the physical and mental changes that he was experiencing as it became harder and harder for him to do things that he was previously able to do.”
“Paul was admitted to the IPU on Easter Sunday. We were met by a very helpful and caring professional team, in a calm environment. His room was quiet, bright and comfortable. Because of the Coronavirus restrictions, visiting had been reduced to 6pm-7pm each evening, which meant that Steph, Paul’s daughter, and I had to visit on alternate days. We were just glad that we were still able to visit though.”
“As well as this being the next step for Paul, it was also a big change for me – the beginning of the end after so many months of caring for him at home. It was hard to suddenly change from being a carer for so long and then to relinquish that care. As his symptoms worsened, Paul needed much more help with mobility, eating and personal care, but the nursing staff helped him with all of these things. They were attentive and considerate; they talked to him and listened to his responses. It was a great comfort to see that they didn’t just focus on his illness, but cared for him as an individual.”
“It was now April, a time when we were usually busy getting ready for the London Marathon. For many years we had volunteered there as baggage handlers at the end of the run in the Mall, and Sunday 26th April would have seen us and our team in action. As a team leader, I received an email from the Events Management team on 16th April, the week after Paul was admitted to the Hospice, explaining that the marathon had been cancelled and promoting the 2.6 Challenge. This encouraged participants and supporters of the marathon to focus on completing activities involving the figures ‘2.6’ or ‘26’, because a marathon is 26.2 miles long, to raise funds for charities that now would not be benefitting from the marathon itself. With Paul being cared for by Phyllis Tuckwell, I decided to set up a Just Giving page, and emailed friends and family to pass on the challenge. I had hoped that we might together raise around £500 for Phyllis Tuckwell, as a way of giving something back for the kindness, care and support we were receiving. Within a week we had raised over £3,000, and by 26th April, the date that the marathon would have taken place, it had risen to over £4,000! It has finally come to rest at over £5,500 – an amazing amount and so much more than I had ever hoped for! I was overwhelmed by everyone’s support and generosity, and grateful to be able to give something back to the charity which had done so much for us.”
“Paul’s final days were long and drawn out, and really quite harrowing. The staff at Phyllis Tuckwell supported all three of us throughout, though. Chaplain Jill visited Paul daily and got to know him well. She was a huge comfort to us all at the end of his life. She and all the staff treated both me and Steph with exceptional kindness, respect and consideration at every visit, from when we arrived at the reception desk to when we left the Hospice.”
“After Paul’s death, the continuing Coronavirus restrictions meant that I was unable to meet up with other family members, who all live some distance away. My friends gave me invaluable support, but much of my contact with the outside world was by phone, email or text, which was hard to deal with. However, with this isolation came peace, and a solitude which gave me time to reflect and to grieve, and to gather my strength after this hugely demanding time of anxiety and sadness.”
“Phyllis Tuckwell has a strong support system in place following a patient’s death and they phoned me to ask how I was doing, and to remind me that they are there to help if Steph or I needed them. It’s comforting to know that they’re still there for us.”