Meet Victor

Victor Barley

This year, Myeloma Awareness Week is on 17-23 June. Patient Involvement Network and Cancer Insight Panel member Victor shares his motivation for getting involved in our work following his cancer journey.

Victor, a former Oncologist was diagnosed with multiple myeloma in 2014. His daughter was diagnosed with breast cancer in 2019 and is currently well. Victor advocates for people affected by cancer by being part of several panels and forums at Cancer Research UK, Myeloma UK, and other charities. He is also involved with his local carers forum having looked after his wife who had Alzheimer’s disease.

“I wanted to use my experience as a patient and supporter for my daughter during her treatment, to help Cancer Research UK improve treatment and care, earlier diagnosis, and prevention of cancer. After 6 years of watch and wait, I began treatment for Myeloma which included a clinical trial in 2020. The treatment gave positive results however the disease has begun progressing again so I’ll need more treatment within the next few years.

I like to contribute using my experience as a patient, carer, and former oncologist. It’s been encouraging to be part of Cancer Research UK’s research projects and work including the co-production of information leaflets. This means participants in trials will be appropriately informed and understand what’s involved before consenting to take part.

As well as being a member of the Cancer Insights Panel I respond to requests relevant to my experience included in the Patient Involvement News e-mail. The most recent opportunities include reviewing the 'About Cancer’ breast cancer information web page, commenting on the smoking cessation web page, and reviewing a section of the Annual Report and Accounts. I found the Annual Report interesting as it gave a nice overview of what Cancer Research UK is achieving.

Myeloma is not uncommon but is not as well-known as leukaemia, lymphoma, or cancer. It can be detected on a routine blood test and is best treated before there is damage to bones and other organs. Treatment has improved greatly through recent clinical trials, but it is still not curable in the majority. It needs to be tolerable and acceptable to patients, and feedback from patients is essential to optimise the benefit/harm ratio in clinical trials.

I enjoy finding out about what’s happening in cancer services and I’m keen to continue my involvement with Cancer Research UK, and other charities and groups to facilitate relevant improvements to help fellow patients, hospital staff, and research workers of all cancers in any way I can.

If you want to find out more about the signs and symptoms of Myeloma please visit our About Cancer/Myeloma page.

Have you or a loved one been affected by cancer? Are you looking for an opportunity to do something different and develop new skills? Use your experience of cancer to influence our work.

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