“I’m more positive, because I really didn’t think I was going anywhere,” says Marilyn, a patient in our Living Well sessions at the Beacon Centre in Guildford. “I think it’s the coping techniques that I’ve learnt, and being able to talk about it. I was so down in the doldrums about it, I didn’t think there was any point, but now I so look forward to my Mondays and Wednesdays, and that keeps me going.”
Marilyn attends Living Well services at the Beacon Centre on Wednesdays, and on Mondays visits the Hospice in Farnham, for our Brush with Art sessions, a volunteer-led class which helps patients express their feelings through drawing, painting and pottery.
“I try not to think about the cancer all the time,” she says. “I’m still going to the Royal Surrey for treatment. It hits me when I go there, but at the Hospice and Beacon Centre it’s always so calming. And the staff have been brilliant.”
The first sign of Marilyn’s breast cancer came in 2014, when she found a lump. She went to the Royal Surrey County Hospital where she was diagnosed with grade three breast cancer. “I had chemo for about six months,” she explains, “and in 2015 I had a mastectomy. I’ve been having chemo on and off ever since. I was getting lower and lower, quite depressed, and I didn’t have anyone to turn to. My District Nurse referred me to Phyllis Tuckwell, and I came to the Hospice and saw a Clinical Nurse Specialist (CNS). She introduced me to the Beacon Centre – I didn’t know anything about Phyllis Tuckwell or the Beacon Centre – and from there on it’s been a completely different story.”
Our Clinical Nurse Specialists are often the first members of our team to see a new patient, and are pivotal in assessing each patients’ individual needs and the needs of their families, and referring them on to other teams within PTHC where appropriate. Some patients may need help from our Physiotherapists or Occupational Therapists, or might benefit from our counselling or chaplaincy services. Others may need advice from our Social Work Advisors or may benefit from accessing our Living Well services. As each patient’s illness progresses, they may need support from different services within PTHC. Their CNS will be mindful of this and will refer them on to each relevant team as and when they need additional or different care and support.
An Occupational Therapist and a Physiotherapist from Phyllis Tuckwell both visited Marilyn at home to assess her needs. “Occupational Therapy have helped me with the walking stick, because I didn’t realise I was dragging my foot and I was quite unsteady, but they picked up on it. That’s really helped. They’ve given me a stool to help me with ironing and at the sink. It’s all those little things that make a difference.” She then came to the Hospice where she saw a Complementary Therapist. “I had a massage on my feet and hands, that was lovely,” she says, “and they made me some cream and a stick for when I was worried, which I’ve used all the time. I now get a hand or foot massage every Wednesday at the Beacon Centre.”
Marilyn attends Living Well services at the Beacon Centre every Wednesday and looks forward to these sessions, but when her CNS initially suggested them to her she was reluctant. “I didn’t want to go. I was really frightened when I first went there; it was a bit mind-blowing to begin with because I just didn’t know what it all entailed. But now I couldn’t do without it. There’s a lovely atmosphere as you walk in the door. To me that’s important, you get that vibe. The staff are lovely and you’ve always got a Nurse on hand. I came to a beauty therapy day and that was lovely, and I think I changed then really. I’ve been doing craftwork there and we have discussions, I’ve learnt so much – and they introduced me to the art group.”
Our Brush with Art sessions, which are held at the Hospice on Monday afternoons, have been particularly helpful for Marilyn. “We’ve been doing painting,” she explains, “but there’s a lady who does clay, so I’ve been working with her and that was just amazing. We’ve done buttons pressed into wet clay, and then painted the tiles, it’s really effective – I love it. While I’m here I don’t think about the cancer, you know, it totally takes my mind off things.”
Marilyn has also made many friends at the Hospice and Beacon Centre. “You don’t have to go through everything on your own,” she says. “I’ve learnt so many tips. I wasn’t sleeping, so I came to a sleep therapy workshop and I’ve talked to other patients about it and learnt things that can help.” Marilyn’s husband has also come to a few of her appointments with her, and they have both attended sessions on sleep and fatigue.
“I do Social & Therapeutic Horticulture too,” continues Marilyn, “and I find that so beneficial.” Marilyn is a keen gardener but had found that she has been unable to tend to her flower beds since becoming ill. She was missing gardening, but now she has started attending our Social & Therapeutic Horticulture sessions, is able to do it again. “The first thing I did was a Christmas wreath – I’ve never done one of those before. We’ve made baskets with flowers in and a vegetable planter which did our salads,” she enthuses.
Marilyn also benefits from our physiotherapy exercise classes, which she attends weekly. “We do a circle of exercises, just feet and hands, and breathing exercises as well, which are helpful. I was quite short of breath, and they taught me how to calm that down and do deep breathing to help. It’s much better now.”
Our Patient & Family Support team have also helped Marilyn, both practically and emotionally. “I’ve had help with my disabled badge, which I didn’t think I was entitled to. They asked if I drove and if I had a blue badge, and I said no, and they went ahead and got it for me. I wouldn’t have known how to do it and I didn’t think I was entitled so I didn’t get a form or anything. And attendance allowance, they sorted the paperwork out and they’re now looking at the care papers, because my husband has to do quite a bit. I’m no good at filling in all these forms in, so that helps.” Both Marilyn and her husband have had counselling, and Marilyn has also met with Bryony, one of our Chaplains, whom she has received a great deal of support and comfort from. “I’m having sessions with her at the moment. She’s got such lovely ideas. I was drawn to her; I feel a connection with her. We were talking and I said that it was worrying me about arranging a funeral, because my boys have had so much hurt, I didn’t want to put other things on them. That was worrying me, and she’s taken that worry away. She’s going to show me about Wills too, and all the other things that go with it, because you haven’t got the energy to keep going off and finding these things out yourself.”
“Hospice Care means to me a safe place,” she concludes. “I know if I’m worried about anything I’ve got someone at hand to talk to. It’s the caring side of it as well. You just feel safe when you come here. It’s happy, and everyone talks about other things, they don’t talk about their illness. It’s opened up so many avenues.”