Sarah has always wanted to improve things for people diagnosed with secondary breast cancer. She has thrown herself into being a Breast Cancer Voice, getting involved in many projects and advocating for Voices to be involved in all our work across the charity. She tells us why it’s so important to centre people with lived experience.
Can you tell us about yourself?
I’m Sarah, I live in Oxford with my husband Toby. I love baking (roll on the next series of Bake Off), gardening, and listening to podcasts. I volunteer with Citizens Advice and a homeless charity, delivering food on pushbikes.
I recently went on a paddle-boarding holiday in Norway. I fall in a lot, but I have a small step to help me stand up and get back down. I’ve got a real fear of missing out, and a growing sense of adventure.
I wanted to leave my breast cancer journey until later in my introduction. It’s a big part of me, but it doesn’t define me.
I was diagnosed with secondary breast cancer in 2015. It had already spread to my bones. 4 years ago, it spread to my brain and caused seizures and permanent damage to my right-hand side. I’m positive and on Phesgo with 156 treatments under my belt.
Why did you join Breast Cancer Voices?
Early on in my diagnosis, I was lucky enough to find the Living with Secondary Breast Cancer group in Oxford. It’s a face-to-face meeting with speakers covering a range of useful topics. I gained a lot from those meetings, and I still attend. I want to give hope to people newly diagnosed.
In one of these sessions, I met a member of staff from Breast Cancer Now who really listened to me, not just heard me. She put me in touch with the Voices network, and I’ve never looked back. I wanted to help push for people with lived experience to be involved in every project, conversation and decision across the charity. If we’re involved from the start, we can be advocates, not just users.
What have you done so far as a Voice?
I feel like I’m pushing on an open door as a Breast Cancer Voice. I’ve been introduced to so many teams within Breast Cancer Now who are keen to involve us in their work.
For example, I was asked to join a call with all staff across Breast Cancer Now. There were more than 200 people on the call and I was petrified. I talked about the benefits of involving people like us in the charity’s work. We ran a follow-up workshop and lots of people were interested. I hope this was the start of a sea of change.
I’m also part of a new advisory group specifically for secondary breast cancer. It’s exciting but scary. I feel a huge responsibility to reflect the needs of the secondary breast cancer community and make sure our voices are heard.
Is there anything that's been especially meaningful to you?
In the past, I wasn't very engaged with Breast Cancer Now. Today, that couldn’t be further from the truth.
I’m really excited by the opportunities ahead. I was lucky enough to meet Claire Rowney, the new CEO, and highlighted many areas where Breast Cancer Now needs to support people with secondary breast cancer. Claire was receptive, and I sensed a real buzz about the future.
After my brain tumour diagnosis and seizures, I was unable to carry out my job to the best of my ability, and I took medical retirement. I’ve struggled to find a purpose and a new identity. Being a Voice has given me that challenge. I know that my voice is listened to and I’m making a difference.
Why is it important for someone to be involved in our work?
It’s critical that the work of Breast Cancer Now reflects the people it’s supposed to help. We’re a diverse group, and all our experiences are unique. When people with lived experience get involved, it means that Breast Cancer Now has the best information to move forward.
Personally, I want to make it easier for the next person diagnosed with breast cancer. I believe that my work with Voices achieves that.
What would you say to someone thinking about being a Voice?
What I like about Voices is that it’s on your terms. You can choose the campaigns you want to be involved in and how much time you spend on them. It’s flexible too, so you can pause if life gets in the way.
We can all make a difference for people diagnosed with breast cancer, so please sign up and get involved.
Use your voice
People with lived experience of breast cancer shape everything we do at Breast Cancer Now. If you'd like to get involved in our work like Sarah, join the Voices network.