“I was diagnosed with terminal pancreatic cancer in November last year,” says Matt, one of our Living Well patients. “Your world sort of implodes – it’s all a bit of a blur really.”
Matt’s oncologist at St Luke’s referred him to Phyllis Tuckwell soon after his diagnosis. Annabelle, one of our Clinical Nurse Specialists (CNSs), contacted Matt and visited him at home.
“Annabelle came over to see me at home,” explains Matt. “She went through a lot of detail about where I was at, what was happening in my life and whether I could still work or not. I was self-employed, I had a little glazing shop, but I gave up work at the end of December. I couldn’t go on. Having to explain to customers that I had cancer, and having to keep going over it with each customer again and again, was very upsetting. My business had been going for 30 years and even though physically I probably could have carried on, mentally I didn’t want to do it anymore, so I closed the shop down. It was at that point that Annabelle and Phyllis Tuckwell really helped. I had been working six days a week for 40 odd years, and then all of a sudden I’m doing nothing. It’s a massive change to cope with, as well as coping with the cancer. The diagnosis comes in and your business stops, and you’ve gone from doing a physical job six days a week to doing absolutely nothing and feeling very ill at the same time. I didn’t know what to do with myself. I didn’t want to just stay at home, watching TV and shuffling around. So I was really interested when Annabelle told me about everything that I could do at Phyllis Tuckwell.”
Annabelle told Matt all about our Living Well service, which is designed to help people who are living with an advanced or terminal illness, and who need a bit of help coping with everyday life. The team includes Doctors, Nurses, Therapists, Counsellors, Benefits & Entitlements Advisors, Dietitians and Chaplains, who together provide a range of clinical and therapeutic care to promote physical, emotional and spiritual wellbeing. Together they help our patients manage the impact of their illness, cope with changes, improve their wellbeing and remain as independent as possible, and they also support the families of our patients too. Matt was keen to get involved, and started coming to one of our physiotherapy sessions.
“I used to be very active,” says Matt. “I didn’t go to the gym or anything; I used to rely on my activity at work for my fitness. Now I might still go for a walk sometimes, but not as often as I used to, because of the cancer. So I went along to the physiotherapy class to see if it could help me get some of my fitness back. The exercises were gentler than I expected them to be, but the next morning I could feel that I’d done them and I realised that I had done quite enough! They were things like holding onto the back of chairs and going up on tiptoes ten times, and going from sitting to standing without using the arms of the chairs to help you up. It was a gentle exercise but it was certainly what I needed. I could feel the benefit; I could feel that it had worked! So that was good. There was a group of about seven or eight of us and there was a bit of camaraderie going on there, which was fun to join in with. I really enjoyed it.”
Matt has also had some complementary therapy treatments. “The problem with the cancer I have is that it’s in my pancreas,” he explains, “so lying down and sitting up are really troublesome sometimes, and having a massage can be problematic. Vanessa, the Complementary Therapist, said we could try reflexology instead and see how we got on. I’ve been to her three times now and she’s been wonderful. The last session I had, it was funny because although she was doing the reflexology on my feet, by the time she’d finished the pain in my stomach had gone. She’s given me oils too, because I was getting twitchy, restless legs. She’s so nice, we chat about our lives and it’s lovely. I look forward to it. I’d never had reflexology before, but I thought I’d have a go and it’s fantastic, you come out feeling so refreshed. It takes my mind off the cancer and I feel so invigorated afterwards.”
Matt and his partner have also had individual counselling sessions, which they have both found beneficial.
“We’ve found it really helpful, because a cancer diagnosis is such as massive thing to go through. It’s unbelievable; it’s a trauma really. Because I don’t look unwell, I don’t have a bandage round my leg or my head, it’s very hard for friends and loved ones to know what’s going on. I don’t want to go around upsetting them either, so it’s very hard to know who to talk to about any problems I have. Who do you talk to? Well, it’s best to talk to a Counsellor really. I mean, I can talk to my partner, but there are some things that it’s hard to talk to with your loved one, but it might be easier to speak to someone impartial about it and get it off your chest. My partner has found the counselling very beneficial as well. She goes every other week and she’s found it very helpful. Between the two of us we’ve been well looked after in that way.”
As well as physical and emotional support, we have also offered Matt practical help with filling out forms to ensure that he is claiming the correct benefits.
“I’d never had to draw any benefits in my life,” says Matt, “and that to me was something that was mentally very upsetting as well. I didn’t want to face up to it. Having worked all my life, for me it was another ‘stop’. It felt like a defeat. I know I’d been paying in all those years, but to have got to a point where I had to claim, it was so alien to me. It’s about personal pride. Filling in all those forms, I didn’t really want to do it, I wanted someone else to do it. Annabelle said that Phyllis Tuckwell’s Benefits & Entitlements Advisors could help with that. I didn’t need them in the end, I managed to do it myself, but knowing that they were there if I needed that help was reassuring.”
In addition to this support, Matt continues to see Annabelle, who keeps a close eye on his overall situation. “She’s very good with taking care of my medication and making sure that everything’s ok,” says Matt. “She also found out that I love art and she told me about the Brush with Art class which they run at the Hospice on a Monday afternoon. I’ve not done that yet because I’ve been bombarded with hospital appointments, but I hope to start going along once I’ve finished my current course of chemotherapy.”
Although this is the first time that Matt has had support from Phyllis Tuckwell, it’s not the first time that he has had cancer. “I had throat cancer five years ago,” he says. “I wasn’t referred to Phyllis Tuckwell that time because it wasn’t terminal then, but it is now. When I went through it before, I didn’t have the support of Phyllis Tuckwell, so we were really left to our own devices to try to work out how to handle getting through that horrible situation. I had to give up work for a year then and that was pretty bad. I’d only just got the all clear from that, when I got this diagnosis. The help I get from Phyllis Tuckwell makes a massive difference. I spend a lot of time alone, so it’s a really big support for me and my partner. She has to work – time doesn’t stand still for everyone just because I’m ill. But she knows she can go off to work and I’ve got access to somebody else on the end of the phone, somebody professional, that she and I can both rely on. It might be something quite trivial, but I know I could phone up. I’ve had some emotional times when I’ve had to phone up and they were absolutely fantastic. Where else could I tap into that? There’s nowhere else.
Even over the weekend, they say “We’ll phone you tomorrow” and it might be a Sunday morning and they’ll phone me up and ask how I’m doing, make sure I’m alright and that everything is ok. No-one else would do that. They tell me to ring them if I’ve got any problems. It doesn’t matter if it’s morning or night, a weekday or the weekend, I can give them a ring. Also, whenever I’ve needed to speak to them, if the person I’ve needed to speak to wasn’t available, they always phone back. They might say “Oh she’s out on visits, but I’ll make sure she calls you back” and she always does, which is brilliant. At a lot of places they don’t. You get used to people not phoning you back! But Phyllis Tuckwell have never let me down, they’ve always phoned back.
There’s nobody else that I could rely on like that. They were there when I was at my lowest, and have been ever since, they always have been.” “If I need to speak to someone, I always phone Annabelle first and see what she says, get her expertise. I feel comfortable speaking to her, like she’s part of the family in a way, although she’s not. I feel that I can confide in her. I feel more comfortable speaking to her than I would calling the oncologist or the doctors, for example. I can speak to her on a personal level. She knows and understands who I am as a person, rather than just seeing me as someone with a problem. To be able to access that professionalism and feel that comfortable about it is a Godsend. When all about you is falling apart, there is that feeling of security that there’s someone there.”
“I feel comfortable coming to the Hospice as well,” continues Matt. “I quite like coming here. There’s a feeling of calm and everyone’s really nice. I’ve had an occasion when I was here to be assessed for the physiotherapy exercise class and I felt a bit unwell, and everybody without any fuss cottoned on to that fact. They sat me down and somebody got me a glass of water, so I sat for 20 minutes or so until I felt a bit better and could carry on. They got the situation under control without having a big drama about it – because it can be a bit embarrassing, you know. I didn’t need to say anything. They couldn’t have done enough. It was a safe environment.”
“The word ‘Hospice’ scares a lot of people. If I say to my friends that I’m going to the Hospice, they look at me with horror! They think I’ll be there for a couple of weeks and that’ll be the end of it. So I explain what it is, that I’m coming here for counselling or an exercise class or reflexology, and that ‘Hospice’ is just the name of the building. They’re associating it with end of days rather than better days, that’s how I feel about it. Before I’d been here, I had that feeling too. When somebody first mentioned the Hospice, with my diagnosis, which was terminal, I thought ‘oh here we go’, but as soon as I walked in the building I didn’t feel that way. Once I’d visited and spoken to a few people and understood what went on here, then it didn’t bother me or faze me or frighten me at all. I felt quite comfortable coming here. It’s a place of positivity. I’ve always felt that since I first visited.”