Visual methodologies for cancer research: exploring patient experiences through an arts for health group
Eleven cancer patients took part in Living Alone with Cancer Explorations, an arts-for-health initiative where they produced creative pieces that reflected their experiences. This involved writing poems, making drawings, paintings and sculptures, collating images and writing a narrative about which parts of their cancer journey do these creative pieces represent. These pieces were then collated into posters about receiving a cancer diagnosis, going through treatment and life after discharge. We are using these posters in public engagement events to start a dialogue with members of the public about cancer survivorship. We have found that art offers a unique starting point in engagement because healthcare professionals, relatives and members of the public initially engage with the aesthetic element of the art and then dwell into message it conveys thus creating a strong emotional reaction that triggers self-reflection as well as a very wide range of conversations.
Cancer diagnosis and treatment often have significant negative impacts on people’s lives long after the end of the medical treatment. Partners and families are often seen as the main source of support for people living with cancer however little is known about how people cope when living alone, particularly in areas of high isolation and deprivation. The aim of this study was to examine the effects that cancer diagnosis and treatment has on people living without co-resident carers. This group of patients includes single people, single parents, people who are divorced and those who have been bereaved.
Our study participants had experienced kidney, breast, prostate, ovarian, thyroid or oesophageal cancer. Their age ranged from 35 to 71 years of age. Years of living alone (without co-resident carers) ranged from 2 to 38 and four participants were single parents. Communication with oncology healthcare professionals regarding diagnosis was reported to be particularly problematic. The main physical implications reported where fatigue, difficulty to do household chores and prepare meals. That was particularly acute shortly after surgery. The main emotional implications reported were feelings of loneliness, depression and anxiety about the future. The main financial implications reported by people in employment where reduced income as a result of reducing hours of working to cope with fatigue. Participants reported resilience regarding the new reality of cancer survivorship and had developed coping mechanisms for dealing with fatigue, depression and reduced finances. Nevertheless, oncology healthcare professionals working on cancer patients’ holistic needs assessments could pay particular attention to the psychosocial needs of those who live without co-resident carers and signpost them to appropriate sources of support.
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Therapy in creating – using art to address the emotional impact of cancer
Getting cancer is not something I ever thought much about. In my mid-thirties, near perfect health, little family history, healthy lifestyle. I was focused on my career, relationships, travel plans, my hobbies, and what I want to do next in my life. Yet in July 2016 I got thrown headfirst into the cancer world. I was diagnosed with breast cancer. It was grade 2 (quite aggressive), large (a whopping 10cm), and had spread to a lot of my lymph nodes. It was stage 3c, one stage before the incurable stage.
It was a whirlwind – hospital appointments galore, tests, new terminology, information. I started chemotherapy nine days after diagnosis. I had 8 rounds of chemo every 3 weeks, and injected myself 40 times in my own belly. I had a mastectomy and temporary implant reconstruction. I had my implant inflated. I had radiotherapy. I had my implant deflated and an urgent surgery on my mastectomy scar. And then I had an LD flap reconstruction, where they took a piece of my back muscle, threaded it under my armpit onto my chest to recreate my breast – with a bit of skin too. I actually have a bit of my back as my boob, which I think is pretty cool. I’m also on hormone therapy and in temporary menopause. I’ve no idea if I can have children. Bone infusions are next up on my list of new experiences. And my chances of getting metastatic breast cancer in five years is an unsavoury 30-40%.
It doesn’t take a genius to conclude that this all takes an emotional toll, as well as a physical one. I am pretty resilient – positive and defiant is probably how my friends would describe me. Yet now I am coming out the other side of the ‘big stuff’, I find myself an emotional yoyo. Preparation for the emotional aftermath didn’t help – it came anyway. The tears. ‘The Fear’. The great paradox of the meaning and meaninglessness of life. I don’t like to admit it, but I’m finding it a little tough.
Yet out of bad can come good, and for me, one of those goods is my rediscovery of art and my creativity. It had always been there, hidden away, neglected as I pursued a career in sciences and never made time for it. Then I was invited to be part of a cancer arts project for Cardiff University by Sofia Vougioukalou, and it was just the carrot I needed. With the help of a wonderful arts mentor, Catherine Lamont-Robinson, I created my first ever painting where I truly expressed myself. The whole experience was cathartic, I cried and smiled as my feelings and experiences started appearing on the canvas in front of me.
Even if it ended right there with that one painting, I’d be grateful for this outlet. But it’s taken a little life of its own, and inspired me to set up the Breast Cancer Art Project, an online platform for those who have or had breast cancer to express themselves through the power of art. The project is in its infancy, yet already we have some incredible images and writing coming in from others who have sought some solace through art. It is open to art in all its forms, and for any ability. What I really hope for now is for it to grow, and help others with breast cancer the way the Cardiff University project helped me.
I was diagnosed with breast cancer in 2012. The next year was the lowest point with many new unwelcome things to deal with including the operation, chemo and radiotherapy roller coaster. I am coming to the end of 5 years on drug therapy to reduce oestrogen. It has acted like an anti-youth potion with various uncomfortable side effects. Sometimes I think about all that has changed for me during these years and the losses – I left my demanding job, divorce, less money, dealing with drug side effects etc and it is easy to focus on the things I have lost in my health, physically, emotionally and financially. This process has also enabled me to look at the road I have travelled and to acknowledge that I have already accepted a new reality. This does include positive elements. The images of trees which became important to me embodied this and gave me the stirrings of optimism that I had failed to see. I realised I can be afraid to see it in case something jumps up to bite me on the bum! The fear of the future comes and goes but is generally in the background.
The art project has given me an opportunity to look at my feelings and express them through words and images. I admit I didn’t feel up to the task to start with – would I have anything meaningful to say and how to say it? With support from Sofia, Catherine and others in the group I decided to grab the chance and go for it. The works are personal and for me it was the right time to examine my experience. I don’t feel as vulnerable most of the time as I did at diagnosis but if I have tests, scans etc whilst waiting for results I can go back to feeling like the polar bear. This image now has other meanings for me such as strength and survival in a harsh environment. I do realise that now it conveys an experience which has a quality which is less isolating and fatalistic as it was in the first few years after diagnosis.