Paula R's Story

Four years ago, Paula was diagnosed with secondary liver cancer.

“Nothing’s really making any difference to it,” she says. “I was under Guy’s hospital and had 70% of my liver removed, but the follow up scan showed it was back again.”

Not keen to keep travelling to London for her treatment, Paula transferred her care down to Royal Surrey County Hospital in Guildford. One day, when she was chatting to the oncologist and nurses there, and they mentioned that they would like to refer her to Phyllis Tuckwell for palliative care.

“I was a bit concerned about that, as I always thought palliative care meant end of life care, but it isn’t, it’s just your perception of hospices. I was worried, but I didn’t need to be. They explained that it was all about dealing with the cancer, living with it, not just dying from it.”

Since being referred to Phyllis Tuckwell, Paula has received regular phone calls from one of our nurses. “She started phoning me every couple of months,” says Paula, “just to check up on me. And one of the days she phoned I’d been in a pretty bad place. I was feeling very isolated, very much out of it. I felt like I just couldn’t carry on anymore. I had started chemotherapy treatment and I was quite poorly. Because of that, I started working from home. My boss was fine about it and I was happy to be able to carry on working. Nobody forces me to work, they’re really flexible. They know all about me and my work ethic; they know that if I have to go to the hospital then I’ll make up the time, I don’t like to take anything for nothing. But I had got to the point where it was either all about the work or all about the cancer. If I wasn’t at the hospital, I was working. I was so totally demotivated, I just didn’t want to do anything, I didn’t want to work, didn’t want to go out, didn’t want to see anybody. I was in a pretty rough place. The nurse picked up on that, and that when Hospice Home Support came about.”

The nurse Paula had spoken to referred her to our Hospice Home Support (HHS) team, and HHS co-ordinator Nicola got in touch with Paula.

“Nicola contacted me and came over to see me,” says Paula. “She chatted to me about the service, and explained that she could arrange for one of Phyllis Tuckwell’s volunteers to visit me once a week, for three hours. It sounded like something I really needed. So Nicola arranged for Kath to start visiting me. That was six months ago, and it’s made a big difference to me. Firstly it’s something to look forward to, you’ve not just got the endless days of sitting at your computer working – you’ve got somebody coming round who you can sit and relax and have a cup of tea with. She comes round weekly, sometimes we miss it if I’m really busy – I’ve had to cancel a couple of times – but apart from that it’s once a week for three hours. We drink coffee, have a chat, watch a bit of telly. I’m 60 this year, and my lovely niece said ‘we have to have a party!’ So I’ve been trying to find balloons and table decorations for that. Kath’s sat and listened to me whinge about organising it! And last week we went through a couple of decoration websites – that was really helpful. She’s taken me to the hospital a couple of times too, and to an Open House session at the Hospice. I was so impressed. They’ve got quite a few things going on that I’m really interested in. I’m hoping to do one of their Living Well art sessions. Kath and I have talked about going out for a coffee too, or just to mooch around a garden centre or something, but I haven’t felt up to it yet. Her visits have made a big difference to me though, because I’ve got somebody coming around who isn’t talking about work, or other trials and traumas. It’s somebody to sit and have a good old chinwag with. There’s completely no pressure.”

“I’ve been working from home for three years now,” continues Paula. “I’ve had two more surgeries, more chemotherapy and yet more treatment to come. But it fits in with everything, because if I have a hospital appointment I can come home and carry on working. Phyllis Tuckwell has given me a real boost, and Hospice Home Support is a service I would definitely advise anybody to take. It’s that little bit of extra something that you don’t realise you need until you’re getting it.”