Gill's Story

“I love Thursdays,” says Gill. “Thursdays are my days. I look forward to them all week. In the morning I come to the Hospice for my exercise class and in the evening I go to a choir for breast cancer survivors.”

Gill started attending our exercise classes after having been referred to our Physiotherapy department by a counsellor she was seeing, following her diagnosis with breast cancer and lymphoedema.

“It’s been a transformation,” she says. “I can walk more since using the tread machine, and my joints are so much better – because I trust what they tell me to do. It works. It’s gentle, it’s not exhausting, you go at your own speed, it’s non-competitive, but I think the best thing I’ve had out of it is the camaraderie. It blew me away how a group of people who all have various different things wrong with us and are all having different treatments, can get on so well. We laugh all the time! I’ve made such wonderful friends. It’s therapy – it’s good for my body and it’s good for my head.”

Gill was diagnosed with breast cancer in 2002 and then again in 2014. “In 2002 there wasn’t much support after the treatment,” she remembers. “I’ve noticed a huge difference now, having gone through it again. I went to my GP in 2014 because I knew something wasn’t right. She said ‘ok, you’ve had this before, I’m going to send you straight to hospital’ and referred me to Frimley, where I was given the diagnosis: an aggressive grade three tumour between my breast and ribcage.”

“I had an operation and chemotherapy, and after that another operation and radiotherapy. After the second operation I developed a seroma, which is a build-up of fluid under the skin. Sometimes it disperses on its own but sometimes it doesn’t, and this didn’t. It was getting bigger and bigger, so the consultant had to drain it, which they don’t like doing because of the risk of infection – and sure enough I got an infection.” The infection cleared up quickly, but soon afterwards Gill noticed that her hand was slightly swollen. “It got bigger and bigger, so I went to see the breast care nurse at Frimley and was diagnosed with lymphoedema.”

“Everything I had gone through, I had gone through with the help of family and friends, and I had managed ok, but the lymphoedema seemed to be the final straw. You can control it and they can help you control it, but once you’ve got it, it doesn’t really go away.”

Gill’s hand had become very swollen and she had to have a gauntlet fitted – a fingerless glove which, along with a sleeve on her arm, would reduce the swelling through compression. “They measured my hand and arm, and ordered me a sleeve and gauntlet, but while I was waiting for those to arrive they gave me some temporary ones from the stock they had at the clinic,” says Gill. As the nurse was fitting the temporary sleeve and gauntlet, she noticed that the colours didn’t match. “She said ‘oh I don’t suppose you’re too worried about that’ – but I was, and it’s a stupid thing but in my head I was thinking ‘oh that’s how worthless I am now, I haven’t even got a matching glove and sleeve’. Bless her, she picked up on that and suggested that I might benefit from having a chat with a counsellor.”

The nurse referred Gill to Therese, a Phyllis Tuckwell counsellor, and Gill went to see her at the Beacon Centre. “Therese was amazing. I had no idea I had all these feelings, these worries, this anger, sadness, fear; that 12 years later cancer can come back and bite you again. I had no trust in my body. I got such a lot out of those sessions with her; she helped me to get my head in a better place.”

Gill’s chemotherapy had caused neuropathy in her hands and feet, which is a combination of numbness and pain. “It’s hard to describe – your feet are sore but they’re numb. I’d been given various pills to try and help it. Therese asked if I’d thought of having acupuncture or lymphoedema massage, as she’d heard that they can be beneficial. I said quite frankly I’d try anything. I was somewhat sceptical about the acupuncture if I’m honest, but I just needed to try something, anything.”

However, when Gill received a letter detailing the appointment times for her acupuncture and massage, her heart sank. “It was headed Phyllis Tuckwell” she remembers. “I never thought I’d come here. Phyllis Tuckwell is palliative care. You come here when nothing else can be done. I knew it was a wonderful place, I’d visited relatives here in the past, but I didn’t want to come here as a patient.”

Despite her apprehension, Gill attended the appointments, and her view of Phyllis Tuckwell changed almost immediately. “The atmosphere is wonderful. Everybody is friendly and chats to you. It’s fantastic. I can get in touch with anybody when I need to, because everybody has always said phone whatever time. There’s always somebody here who can help; nothing is too much of a problem. There’s always someone to talk to and you know it’s in confidence. It’s a wonderful thing to have behind you, the care. It’s been a brilliant experience. I can’t say more than that. It’s been wonderful for me, absolutely wonderful.”

Gill had both acupuncture and lymph massage at the Hospice. “Sue did my acupuncture and she became like a friend to me,” Gill smiles. “It was almost like therapy, coming here.” Although Gill had been sceptical, the acupuncture did help reduce her neuropathy, and the massage helped reduce the swelling in her arm and hand. “I went in with a heavy arm,” she explains, “fatter than it is now, and relaxed on a beautiful couch with soft music and a lovely lavender scent, and had a beautiful, gentle massage. It has to be gentle, to disperse the lymph fluid. When I had the operations to remove the two tumours, they also removed the lymph nodes under my arms, so the lymph doesn’t drain away like it should do. The idea of the lymph massage is to train other channels to redistribute the fluid, so it drains away through other lymph nodes in the body.”

During one of her acupuncture sessions, Sue mentioned to Gill that she was starting a new exercise class at the Hospice. “I wasn’t very active,” says Gill. “I used to be sporty. I played a lot of badminton, and we played matches and all sorts, but the chemo knocked me for six. I was struggling. I wasn’t fit, I’d put on weight, I couldn’t play badminton, I couldn’t run, I couldn’t even walk very far. The medication I’m on hurts my bones, too. Because of all that I was feeling really down. So when Sue asked if I fancied an exercise class, I thought that’s a really good idea.”

“When we first started the class, we were timed as to what we could do – how many times we could walk up the corridor and back in two minutes, and how many times we could stand up from sitting on a chair. Initially I managed about six or seven times, but after six weeks I had doubled that! The strength in my legs had come back. The treadmill was great for me because I like walking, but because of my neuropathy my balance isn’t great and I’m not very trusting of my body. Using the treadmill, and increasing its speed as and when the physiotherapists suggest I should, has given me the confidence to go out and walk on my own at home, around the estate or woods, which I wouldn’t have done before.”

“I’ve even had a gentle game of badminton with friends, when I thought that part of my life was completely over,” she continues. “It’s given me the confidence to do a bit more. The exercises get varied every now and then too; a new bit of equipment comes in and you get on it and think, oh that’s using muscles I didn’t know I had! So it’s progressive – the physiotherapists increase your exercises as you get better at them, and they offer you more of a variety, too.”

“We’ve had some sad times, when people in the group have died, and at times I’ve thought I’m not sure I can cope with this, but chatting to the Physiotherapists has helped – I had a long chat with Sue when I was a bit wobbly about a good friend dying, and she persuaded me to keep going, and it is wonderful. The physiotherapists and volunteers at the classes are second to none; they’re so friendly and kind. Nothing has matched the services here at Phyllis Tuckwell. I can’t speak highly enough of it, really.”

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