People affected by breast cancer are at the heart of what we do. Our Breast Cancer Voices, like Carol, help make that happen. She’s taken on loads of projects so far, and tells us how rewarding it feels to help improve things for others affected by breast cancer.
Tell us about yourself
I’m Carol, and I live in South Wales with my daughter. I work for a housing association as a tenant engagement officer, where no 2 days are ever the same.
I’m a big fan of rock music and I go to concerts whenever I can. In my spare time, I love walking, especially at the beautiful Gower here in Swansea. I also attempt my own DIY, not always successfully, but I always give it a go.
Tell us about your experience with breast cancer
I was diagnosed with invasive ductal carcinoma in 2016. It was a big shock for me, especially having surgery and radiotherapy. I had so many questions and I didn’t even know where to start.
When you first get your diagnosis, it’s a lot to take in. I didn’t want to sift through lots of complicated booklets that I didn’t understand. I wanted to find information that helped me make sense of things. When I came across Breast Cancer Now’s information and support, I found exactly what I was looking for.
What support did you receive?
From the very start, Breast Cancer Now’s leaflets were hugely helpful and informative for me. At every stage of treatment, I received an information booklet to take away and digest. It helped me come up with specific questions for my breast care nurse and understand more about my treatment.
I also rang Breast Cancer Now’s helpline. The nurses were just a phone call away, and helped answer my questions about my medication. It was great to have someone to talk to, whatever was on my mind.
So, when I heard about an opportunity to give back to the charity, I couldn't wait to get involved. I joined Breast Cancer Voices in 2021 so that I could use my experience to help others on their breast cancer journey.
What have you been involved in as a Breast Cancer Voice?
I’ve done so many interesting things as a Voice. I’ve taken part in panels, research projects and I’ve shared my feedback with Breast Cancer Now.
One of the biggest projects was reviewing information leaflets for the charity. I made sure that the language and presentation were helpful for people affected by breast cancer. Helping to perfect the same leaflets that guided me through my own diagnosis was such a fulfilling experience.
I was also part of a research project run by Sheffield Hallam University about radiotherapy, called RESPIRE. I took part in an online meeting with 2 researchers from the university, along with several other women who were having or had gone through breast cancer treatment.
It was great to meet the other women involved. Everyone was at different stages of their treatment. I got to see how much things had changed since I was going though it, which was so meaningful for me. Hopefully, our work with RESPIRE will help improve things even further.
It’s amazing that you’ve done so much as a Voice, does any project stand out to you?
One thing that really stands out is a panel I took part in in April 2022. The discussion was about the blue dye used to highlight during surgery, and it was run by NICE, the national body who makes recommendations for the NHS. The panel included several doctors and healthcare professionals, and I was there to make sure they were considering the impact on breast cancer patients.
Taking part in the discussion was so rewarding. I felt like the researchers really listened to what I had to say. I hope my contributions helped influence their decisions about which medicine to use. And hopefully, our collaboration will improve the experience for anyone receiving this treatment.
What would you say to someone thinking about joining Breast Cancer Voices?
By sharing your experience and using your voice to create change, you can really help someone else. It makes a meaningful difference. And it feels amazing to share my voice to help people affected by breast cancer.
A lot of the projects are run by universities or other external organisations. Sometimes, you even get a small payment or shopping voucher for taking part. And there are plenty of opportunities that you can tailor to your interests and your availability.
There’s no harm in trying it out. My message to anyone thinking about being a Voice is to sign up today!
Join the network
Our Breast Cancer Voices use their experience to create real change for everyone affected by breast cancer. There are plenty of ways to get involved, so sign up and explore our opportunities.