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 stayed with my daughter in London, but the house was small, so we moved to Blackwater. I had quite a lot of fears because I didn’t know about the kind of life that I was going to lead.”
"I am 73 years old and originally I am from Zimbabwe. I came to the UK in 1970 and worked as a nurse and as a social worker. I really enjoyed my job. When I retired, I helped my sister to look after my brother, but sadly he died at the same time I was diagnosed with cancer. At first they just said it was a shadow on my left lung, but then I went for CT scans and the results were not very good. The consultant called me and said it was not only the cancer on the left lung, but also kidney cancer, spinal cancer, and a lump outside my heart which showed some cancerous cells. The prognosis was not that good. I was given three months. They said that if I don’t get treatment within three months, that will be the end. After just a few days they came back and said they’ve got a treatment for my lung cancer - target therapy - so I started that.”
“When I was advised that I had three months to live, I started preparing for dying. I started organising my will, my funeral, everything. I didn’t have any hope of living; it was just I'm going to die. But when I was seen by the consultant at Frimley Park Hospital, they said that I was responding to the treatment. There was still life in me! At first I was in denial, because I thought there was no hope, I was just going to die. I could do a few things for myself, but mostly my daughter used to care for 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 our care. They assess each patient to find out more about their illness, symptoms and situation, and to see how best we can support them. Katie visited Violah at home to talk to her about her needs and tell her about the care that we could offer her. Violah was also visited by one of our doctors too, Dr Fiona.
“To my surprise, 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, and that’s when I started receiving the hospice care.”
"It involved the nurses coming to monitor me and monitor my pain and encourage me. Mentally, I started getting better, and physically I started having the energy to do a few things for myself. 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. Then I started attending the Living Well programme. I had thought oh it isn’t going to do me any good. You know, when you lose hope of living, you just think there is no light at the end of the tunnel, you think I’m just 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 really important in helping patients to feel less isolated and alone, and many build strong friendships within their group.
“We started sharing information in the groups, and also we had specialists coming to talk to us about how to live well. This included nutrition, diet, resting, relaxing, and how to cope with the psychological problems one can have, 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 and I still feel safe in the group. I know the things that I’m saying are not going to be shared all over, that really motivated me to see that oh there is life at the end of the tunnel, there is a green light, I can do it. It was through the encouragement from others and hearing from them what they were going through. That was really a blessing, and it’s still a blessing because I can look back. 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. I can really say that I can walk straight now. I still have pain, but it’s one of those things that I have to work with, taking my medication all the time. So I can say Phyllis Tuckwell has actually revived me from where I thought I was dying, I was hopeless, I had no hope of the future - now I have got hope, I’m going to live longer, and I will continue to like myself, attend the groups and improve my overall health. I’m really thankful to everybody who entered into my journey and supported me. It hasn’t been easy, but right now with the support I’m getting from Phyllis Tuckwell, I can say there is life, I can live longer. Psychologically I’m much happier with my illness. I keep on telling the cancer that you can’t live in me if I die, so it has become my little friend. I still have quite a lot of pain, but the kind of care and attention that they gave me, and they continue to give me, is really wonderful. When I am in pain, they just look at me and see what is wrong, and then they provide me with some cushions or whatever it is I need. 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 better, more bespoke care.
“The Story of Me booklet really helped me to reflect on my illness, and on my feelings. When I started, it talked about how you feel and I actually said I don’t have any feelings about my future, neither my present. It was just a very negative way of looking at myself because I had no hope of living, but now I have hope of living because of the support that I’m getting.”
“I was so angry and that anger really affected my mood because I was sad, not forgiving, sometimes I kept on saying why God, why me? I was very angry, with myself as well, what have I done to get this cancer, how can I come out of it, 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 mood swings and 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 with the members of the group I could see myself changing. I started looking at the things that can make me happy - being positive within myself, looking at my self image, how do I look, how can I change, how can I be happy - and I found that 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 coming up, getting stronger, physically, mentally getting a little bit satisfied with what was going on around me, because I had friends who were supporting me from the group, I had professionals who were supporting me from the group. That really gave me some sort of 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 making me happy and giving me confidence. I myself can’t believe it’s me. It’s all the love and care and attention, the people here, honestly, 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 a group of six to eight 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 are really important to our patients’ wellbeing, and show patients how taking time out for self-care can help boost their self-esteem and ease any tension that they are feeling. Lunch is provided, and patients can get to know each other, forming friendships with others who are in a similar situation, and drawing peer support from this.
“The pampering was really fantastic. To think of it, having people to touch your body, and do things for you that you can’t do, that was really beautiful. 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? Yeah, they are mine’. And then I had my hair cut. It’s something that I never wanted, to have my hair trimmed, because it took a long time for it to grow, but after the trimming I just 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. I have to be thankful. The whole group, there was quite a lot of laughter, jokes, oh my goodness it was really good, I will never forget it because it was an experience where there was quite a lot of love, laughter and caring. Phyllis Tuckwell is an amazing organisation, with wonderful people working in it with love and care, and wonderful volunteers, and the attention is just great. They’re not only helping me, they’re also supporting my daughter as my carer. I can recommend the organisation to anybody.”
