Breast Cancer Voices is a way for me to continue to give back

Please tell us about yourself

Hi I’m Nes. It’s been 5 years since I was diagnosed with metastatic breast cancer, a crushing and life changing event. It felt like a double shock, firstly to be told I had breast cancer and then secondly, it had spread to my bones and liver.

We all know we are mortal, but having to face your own mortality on an almost daily basis is very challenging. I decided very early on to embrace the challenge and to truly live my best life with cancer. After chemotherapy (I can only describe this as brutal) I now have immunotherapy every three weeks, along with regular scans and oncology reviews.

Tell us about your life after diagnosis

After my diagnosis I retired from my full-time job and now work part time. This has given me the time to focus on my fitness, travel, and to think about how I can give back to the cancer club no one wants to join!

Keeping fit and well is hugely important to me. Swimming, golf and Pilates do it for me. Swimming makes me feel normal, I can forget the past me and focus on my new normal. Golf is a great way to meet other like-minded people and to do something active with my husband. And my body thanks me daily for Pilates! I have Breast Cancer Now to thank for sign posting some Pilates sessions that piqued my interest and got me hooked.

How has joining Breast Cancer Voices helped?

Two years ago, a good friend suggested I look at getting involved with Breast Cancer Voices. She’d been working with their leadership team on the future strategy and thought I could add value through getting more involved. In essence I’d meet "people like me". It’s been a good fit for me, allowing me to feel more connected to my cancer through a specialist charity with a clear focus; Breast Cancer Now until we’re Breast Cancer Never!

There are more of us living in the "long middle" where there’s no cure, but death is not imminent. We want to and are living well with cancer. I’m proud to work with Breast Cancer Now and be part of their vision that "by 2050, everyone with breast cancer will live and live well". I can relate to that.

Being part of Breast Cancer Voices is a way for me to continue to give back and use my professional skills to make a valuable contribution to the future strategy.

Tell us about your involvement in Breast Cancer Voices

When you join Breast Cancer Voices, you get the monthly bulletin which tells you about different projects and research you can take part in. And you choose what you get involved in. This is a good starting point for anyone thinking they’d like to dip their toe into contributing to the charity.

I was very excited to be part of the advisory group working on a project to see how Breast Cancer Now can show up in every hospital setting. This is set out as a gamechanger in their new strategy. Spending so much time in hospital waiting areas myself I feel well qualified to give good insight, without prejudice and in an objective way.

We’ve reviewed proposed models, always focusing on what difference this would make to people affected by breast cancer, the practicalities of delivering this and the impact it could have on health care professionals. The breadth of experience we all have has made for some lively discussions, always constructive and thought-provoking. As we move onto the next phase, I’m keen to see how we can do more to support people like me in the future.

What else have you done with Breast Cancer Now?

Over the last year I’ve become more involved with Breast Cancer Now through a few projects. I’ve become a patient advocate with the Service Pledge, working to improve breast care services in hospitals for both patients and staff.

I’ve recently signed up to be a local representative for Breast Cancer Now through the Volunteer Hub and that has been such a positive, heart-warming experience. I’m amazed at the fundraising local communities do and it’s great to represent Breast Cancer Now in accepting their donations and thanking them for their efforts.

What would you say to someone thinking about joining Breast Cancer Voices?

In my experience Breast Cancer Now immensely values our input and truly welcomes it, so I’d encourage anyone to give Breast Cancer Voices a go, you will be very well supported and be making a positive difference for the future.