Being a voice is so empowering and allows you to give back

Breast Cancer Voices is a community of people affected by breast cancer who help shape what we do. Everyone in the network can use their voice and experience to play a part, whether that's in our research, partnerships, policy, or our support services.

Can you tell us about your diagnosis?

My whole world changed when I was diagnosed after my routine mammogram in 2019. On Christmas Eve, I had the call that it was HER2+ grade 2 invasive ductal breast cancer. I had plans to travel through Europe for winter, but instead, I had a bevy of hospital appointments, for scans, chemo and the oncologist.

There were some light-hearted moments, like comical wig appointments, which left us crying with laughter. But most of it was very difficult.

What was it like to be treated during the pandemic?

It was isolating. I just felt very alone. From March 2020, I no longer had a hand to hold in waiting rooms or anyone to keep me company in the chemo unit, and I couldn't have hugs from friends, family or my grandchildren. There were no face-to-face appointments with my oncologist, just an unknown doctor at the end of a phone. My husband Terry was my rock - he spent weeks in hospital car parks when he couldn't go into the hospital with me.

So, I decided to turn to Breast Cancer Now to offload this huge mass of feelings and emotions. I felt so isolated and craved support and someone to talk to.

How did we support you during this time?

I rang the nurse helpline and they put me in touch with a Someone Like Me phone counsellor who rang me every few weeks. She recovered from cancer 10 years earlier so really understood my feelings. It was amazing to have somebody to talk to, who got it. I trusted her and she gave me hope.

A big worry of mine was recurrence, so I sometimes used the helpline to ask about any concerns. And they always put my mind at ease.  

After treatment, I wanted to give something back, so I set up a ‘Pink Party’ to fundraise. A month or so later, the enormity of the past 2 and a half years hit me like a sledgehammer. My mental health was very low. I used the Helpline again and they organised a counsellor for me. Enormously grateful doesn't cover it. It felt like I’d been rescued from a lifeboat in a turbulent sea.

Is there anything else you’ve done to celebrate finishing treatment?

At 66, I took part in a topless photoshoot called ‘The NewNormal’ with an independent photographer. The photoshoot series celebrated women’s bodies and scars in all their diversity.

I also had a tattoo done of the moon and stars, with the initials of my grandchildren. They really were the focus of my fight all the way through - especially the 2 babies born during my treatment.

And I signed up to become a Voice in Breast Cancer Now’s Voices Network.

Why did you sign up for Breast Cancer Voices?

The network’s a way for people to authentically give back, and it’s amazing to be involved in this way, when everything else is taken from our control. To me, being a Voice is a go-between being a patient, researcher, and part of Breast Cancer Now.

And I think it’s vital that researchers understand symptoms and treatment effects first-hand from people like us.

What have you got involved in so far, since becoming a Voice?

The network gives you so many opportunities to get involved. I was involved in a virtual tour of a research lab which showed the different things going on in breast cancer research. I think it’s so important to be involved at research level, and to be able to talk to scientists about the human side of breast cancer and what it’s like to be a patient.

I hope to be involved more as opportunities come up, to help others in their breast cancer journey. 

What would you say to someone considering joining our Voices Network?

Definitely sign up. Being a Voice is so empowering. It’s amazing to be part of such important work.