Victor's story
Dr Victor Barley is a former Clinical Oncologist, who has been a champion of Penny Brohn UK’s work since the 1980s and a trustee since 1995. In 2014, he was diagnosed with multiple myeloma, which is a type of bone marrow cancer.
Victor came to Bristol in 1978 to work at the city’s haematology and oncology centre. A few years into his tenure there, Penny Brohn UK contacted Victor to ask him to discuss treatment options with a client, who wanted to avoid surgery or radiotherapy for a curable cancer.
“Following that introduction, I became more involved because the charity found it helpful to have a link with the oncology centre and advice about the medical aspects. I had always tried to think of the whole person, not just the disease that I was treating, and therefore I had empathy with what the Bristol Cancer Help Centre (as Penny Brohn UK was then called) was doing.”
Research into the needs of people living with cancer
Victor was a member of the Opie team, a research project undertaken to better understand what people living with cancer needed in addition to their medical treatment. The aim was to utilise the research to develop Penny Brohn UK’s services.
The findings, based on qualitative analysis of over 60 patients in focus groups from four cancer centres around the country, were presented at Highgrove to about 60 Oncologists. Some of those present commented that the sample was too small to draw any conclusions.
“Nevertheless, the focus groups gave us an idea of the sort of support that people felt they needed beyond what they were getting in hospital, such as having the opportunity to access counselling, relaxation, meditation and the various services that are now provided quite widely as complementary therapy.”
Victor could see that offering people a toolkit of support made a huge difference to their ability to live well with cancer.
“In many cases, there was a sort of transformation. Instead of being frightened, submissive, experiencing the horrors of treatment as they saw it, people became much more active in their own management – looking after their diet, exercise, meditation, relaxation and making their quality of life better.”
Despite the clear benefits offered, these services were not seen as essential by many healthcare professionals at the time.
“Penny Brohn UK had to really rethink what they were doing to try to integrate their offer with traditional medical care rather than something seen as separate or alternative.”
The benefits of integrative cancer care
The value of Penny Brohn UK’s work is much more widely recognised today, and research has shown the huge benefits that integrative cancer care offers patients.
“An opportunity to talk to the specialists at Penny Brohn UK about things you can do to support your health is vital because when a cancer diagnosis is made there’s an immediate feeling of passivity.
“You’re having all these things done to you and you might not fully understand some of the decisions that are being made. That’s very challenging because people like to be in control of their lives and their bodies.”
Victor believes that Penny Brohn UK also has a vital role to play at each stage of someone’s cancer journey – particularly when statutory support diminishes after treatment ends.
“Once the treatment is over, you might be seen a few times in a follow-up clinic. But I think many patients feel sort of abandoned and find it helpful to have some continuing support which the hospital hasn’t resources to provide.
“But through Penny Brohn UK, they can get that support and give mutual support to others who are on a similar journey.”
Victor’s cancer journey
Follow a distinguished 25-year career as a Clinical Oncologist, Victor was diagnosed with multiple myeloma in 2014.
“I was able to manage without any treatment for five years because the disease was progressing slowly. But eventually it got to a point where treatment was likely to be needed. I waited for a few months because I wanted to be able to go into a clinical trial that was about to start in March 2020. But then COVID came along, and the trial was delayed until September 2020.
“Within the trial I was able to have in treatment by tablets rather than having an infusion in hospital. The fact that I was in the trial made it easier for me because I could have my treatment at home, and I also hope that I was helping other patients by being part of this study. Thankfully, the disease responded very well.”
During this period, Victor was able to utilise the advice and expertise he’d accumulated over the years working with the charity.
“Since 1995 I’ve been a trustee and so, in a way, I have absorbed the philosophy and the opportunities over time. But I did attend a wellbeing course, and I did have a session with Dr Catherine Zollman, one of the integrative doctors at Penny Brohn UK. She gave me advice to manage my health as well as nutritional information.
“It enabled me to be a bit more mindful about having enough fruit and vegetables and that sort of thing. I followed the advice given, and I was also greatly helped in that by my daughter Maddi.”
Maddi is a Penny Brohn UK volunteer who runs Client Voice, a group of people affected by cancer who inform and shape our work. Maddie herself was also supported by Penny Brohn UK after receiving her own cancer diagnosis.
“Maddi took advantage of the charity’s services before any treatment started to understand how she can make the possibilities of recovery as good as possible. They greatly helped her with decisions she had to make about her medical care, and then they supported her through the treatment and its accompanying side effects.”
The future of Penny Brohn UK
Victor believes that Penny Brohn UK’s services will become even more vital in the future as our overstretched healthcare service faces ever mounting pressures.
“Now people in hospital for a bilateral mastectomy stay just for 12 hours, and people used to stay in for more than a week after a mastectomy. But things have changed nowadays, which puts more pressure on the individual patient as well as the community services.
“We can give patients the tools to look after themselves, improve their quality of life by simple measures, and gain the benefits of feeling in control of their health and wellbeing.”