Violah’s Story

When Violah was told that her lung cancer had spread to her kidneys, heart and spine, she felt there was no hope left. But after being referred to our Living Well team and attending sessions at the Beacon Centre, she has changed her view on life.

“When I was taken ill, I couldn’t really manage,” she said. “I could do a few things for myself, but mostly my daughter used to care for me. I had quite a lot of fears because I didn’t know about the kind of life that I was going to lead.”

“I went for CT scans and the results were not good. They said that if I don’t get treatment within three months, that will be the end. I started preparing for dying, organising my will, my funeral, everything. I didn’t have any hope of living. But when I was seen by the consultant, they said that I was responding to the treatment. There was still life in me! So I carried on with the treatment.”

Violah’s consultant also referred her to Phylis Tuckwell, and Violah was contacted by Katie, one of our clinical nurse specialists. These specialist nurses are usually the first of our team to speak to patients who have been referred to us. They assess each patient to find out more about their illness, symptoms and situation, and to see how best we can support them.

“I was phoned by the Phyllis Tuckwell nurse and then the doctor, and then they came to see me at home. They reassured me that Phyllis Tuckwell had services that could meet my needs. I didn’t believe them, because I just thought what’s the point of having the services? I’m going to die. But they gave me that hope.”

“The nurses came to monitor me and my pain. I had quite a lot of appointments, people coming in and out of my home, a physiotherapist and a complementary therapist, as well as the nurses and the doctor. Mentally, I started getting better and having the energy to do a few things for myself. Then I started attending the Living Well programme. I had thought oh it isn’t going to do me any good. When you lose hope of living, you think there is no light at the end of the tunnel, you think I’m dying so what’s the point?, but my daughter encouraged me, so I started coming to the groups.”

Our Living Well team runs two eight-week programmes – Living Well with Illness and the Creative programme – to help patients understand their illness and manage their symptoms. Violah was invited to attend our Living Well with Illness programme, which offers a two-hour session each week, on topics such as how to manage your mood, improve your sleep and remain active. The sessions are run by our nurses, physiotherapists, occupational therapists, complementary therapists and dietitians, who are supported by our volunteers, and each session includes six to eight patients who get to know each other over the eight weeks. This peer support is important in helping patients to feel less isolated and alone, and many build strong friendships within their group.

“We had specialists coming to talk to us about how to live well. This included nutrition, diet, resting, relaxing, and how to cope with problems like getting anxious or depressed. I found that I started feeling so free to share my feelings with others; I felt safe in the group. That really motivated me to see that oh there is life at the end of the tunnel. It was through the encouragement from others and hearing from them what they were going through. My eating habits have changed, my sleeping pattern is changing, and having the physiotherapist sessions when they give us information on how to do things and having exercises at home really improved my walking, my mobility. Phyllis Tuckwell has revived me from where I had no hope of the future – now I have got hope. It hasn’t been easy, but attending the group made me feel there is life here.”

Before patients start attending our Living Well sessions, one of our nursing team sits with them to help them fill out our Story of Me booklet. This booklet asks patients some background information about themselves, such as where they grew up, what relationships are important to them, and what interests and hobbies they have. It also asks what makes them happy, sad or anxious, and what matters to them. By finding out a bit about each patient, we can understand their needs and provide more bespoke care.

“The booklet really helped me to reflect on my illness and my feelings. When I started, I said I don’t have any feelings about my future, neither my present. It was a very negative way of looking at myself. I was so angry, and that anger really affected my mood because I was sad, I kept saying why God, why me? I was very angry, with myself as well, what have I done to get this cancer, what’s going to happen to my daughter when I die? It made me think deeper of why I was angry, and through the discussions and hearing other people talking about their feelings, and also some were angry with what was going on, I felt better knowing I was not the only one. And then we started talking about how to deal with the pain associated with the feelings.”

As well as talking about their negative emotions, the group also shared with each other what things made them feel happy and positive.

“At first I didn’t have many things to talk about in terms of happiness because I was just sad, but as we gelled together I could see myself changing. I started looking at the things that can make me happy – being positive within myself – and I started having the joy of looking at myself and saying yeah my hair is growing and even though I’ve got this cancer I’m still very beautiful and I still have a role to play within the family. Also, I was also contributing to the group, I could see my confidence getting stronger, because I had friends and professionals who were supporting me from the group. That really gave me happiness and joy, that I’ve got people around me who have got the love to give, and in return automatically you start loving people, you start loving yourself, and looking forward to all the sessions. I was isolated for nearly a year; coming out of that shell through the group discussions has been really wonderful. It’s giving me confidence. I can’t believe it’s me. Everybody is so amazing. I start thinking ‘how did they manage to get the staff who are so devoted, so caring and lovely?’”

As well as coming to our Living Well groups, Violah has also attended one of our pamper days, where patients are invited to come to the Beacon Centre for complementary therapy treatments such as massages, reflexology and Indian head massage, makeovers, manicures and pedicures, and haircuts from our volunteer hairdresser. These pamper days show patients how taking time out for self-care can help boost their self-esteem and ease tension. Lunch is provided, and patients can get to know each other, forming friendships with others and drawing peer support from this.

“The pampering was fantastic. Having my nails done, my toenails done, and a nice bright colour which I’ve never had, that was really beautiful. Looking at my toes, I said ‘oh my goodness, are these my toes?’. And I had my hair cut. It’s something that I never wanted because it took a long time to grow, but after the trimming I find myself thinking my goodness that’s me now, I’m coming back to life. And to crown it all, having a massage on my feet – oh it was a beautiful sensation. There was a lot of laughter, jokes, it was really good, I will never forget it. Phyllis Tuckwell is an amazing organisation, with wonderful people working in it with love and care, and wonderful volunteers, and the attention is great. They’re not only helping me, they’re also supporting my daughter as my carer. I can recommend the organisation to anybody.”