Penny was looking for a way to get involved at Breast Cancer Now after her diagnosis. She didn’t feel ready to take on a physical challenge. But she soon found that she could make a difference by using her voice. She tells us about all the ways she’s made an impact as a Breast Cancer Voice so far.
Tell us about yourself
I’m 63 years old and I live in London. In 2014, I was diagnosed with triple negative inflammatory breast cancer, a rare form of breast cancer. Back then, I didn’t realise there were different kinds of breast cancer, I thought it was just one thing. How wrong I was!
What happened after your diagnosis?
I was thrown into a whirlwind of tests and jargon that I didn’t understand, and honestly, I didn’t want to understand. But it quickly became clear that I had to advocate for myself during my treatment. I really didn’t know how, I just felt lost.
I felt really alone and my hospital team directed me to Macmillan Cancer Support’s online forum. I asked if anyone knew anything about inflammatory breast cancer, and I was met with virtual tumbleweed. No one could offer any information.
I really tried to understand everything that medical professionals were telling me. I had to make decisions about my treatment based on little information, and I just wanted to know more. I wish I’d known back then about Breast Cancer Now.
How did you find out about Breast Cancer Now?
One day when I was at a clinic, I was lucky enough to meet a woman named Julie, who became a good friend of mine. She’d also been diagnosed with inflammatory breast cancer, but her cancer had already spread.
She told me that she was a patient advocate with Breast Cancer Now. Back then, she was campaigning to make Kadcyla, a medicine that can block the growth and spread of cancer, available across the UK. It opened my eyes to how important it is to share our experiences as patients. It can make a real impact.
At that point, I found Breast Cancer Now. My friend Julie died. But she inspired me to do something practical.
I wanted to get involved, but I wasn’t fit enough to take on a massive physical challenge to raise money due to my treatment. But through Julie’s work, I learned there were other ways I could make a difference by drawing on my own experience. That’s when I joined Breast Cancer Voices.
What have you been involved in as a Breast Cancer Voice?
My time as a Breast Cancer Voice has been really fulfilling and varied.
Before I was diagnosed with breast cancer, I led an active and healthy lifestyle, so it was hard to come to terms with my diagnosis. But my consultant told me that my fitness would help me handle my treatment. So, when I heard about the chance to get involved with a project in collaboration with Sport England, I jumped at the chance. The project explored how to support and motivate people to become more active after a cancer diagnosis. I felt like it fit me perfectly.
I was also invited to observe a day of lectures with students at the Clinical Pharmacology department at St George’s University London. The tutors wanted to understand how to improve teaching and enhance students’ understanding by drawing on the patient experience.
It felt so rewarding to sit down with students and talk about my experience with breast cancer. They were eager to hear from me, and they talked about how my experience might influence them when they work in a healthcare setting.
What else have you been involved in?
Recently, I was a patient voice on Breast Cancer Now’s strategy steering group. We were setting the priorities of the charity and the direction for the next 5 years.
This was such a privilege to be involved in. I saw first-hand the ambition, determination and passion of the trustees, board, and every member of staff I met. Everyone is working together to make Breast Cancer Now the very best it can be, from funding world class research to providing support and information.
The process was rigorous. We took time to look into every aspect of how the charity works. We listened to the voices of patients, staff and healthcare professionals, learning about what Breast Cancer Now does best and what they can do better.
As well as all the opportunities I described, I also appeared on Breast Cancer Now’s Christmas raffle tickets when I was totally bald. I sold a lot of raffle tickets in my workplace that year. I felt like a celebrity!
What would you say to anyone considering becoming a Breast Cancer Voice?
I’d say just do it, I promise it can be hugely rewarding. The opportunities are so varied. You can take on as much or as little as you like.
Sometimes, I think we underestimate the power of the patient experience. When people hear human stories, it really resonates, because they have an emotional response.
Our voices can make change happen. Together, I’ve seen how we can influence pharmaceutical companies, government policy, funding for research and more. We can even inspire other women to take up breast cancer screening, hopefully leading to more women being diagnosed earlier.
So if you want to use your voice to create change, sign up today.
Use your voice
Like Penny says, you can use your voice to create change for others affected by breast cancer. To find out about opportunities, sign up to Breast Cancer Voices today.