After lobular breast cancer, Darlaine felt alone and wasn’t prepared for her ‘confidence to hit the floor.’ After receiving support from Breast Cancer Now, she decided to give back by joining Breast Cancer Voices, a network giving a voice to people affected by breast cancer. Find out how the network helps Darlaine fulfil her passion for helping others feel sexy again.
Can you tell us a bit about yourself?
I love food, music, theatre, glitter, opera and flamenco! And I work in sexual health.
In 2016, I was diagnosed with invasive lobular breast cancer – a breast cancer that’s harder to spot, because it doesn’t always form a solid lump. This led me to co-found Lobular Breast Cancer UK (LBCUK) over lockdown, offering tips, advice and community for people with this unique type of breast cancer.
Working in sexual health, I’m really interested in how breast cancer can impact sex and relationships.
How did you feel after treatment finished?
I’ve had 4 lumpectomies and a bilateral mastectomy, and I decided to have breast reconstruction. When surgery, chemo and radiation is over it's like ‘well you are fine now,’ except that it’s not. It can be worse. I took hormone suppressors which can have unpleasant side effects and some people would shut me down if I talked about cancer.
I’d never felt lonely before, despite the curveball I had, but at that point in time, I did feel alone.
And I wasn’t prepared for my confidence to hit the floor in such a forceful way. I didn’t look in the mirror; nothing felt the way it used to. My body doesn’t move the same and my hands seize up sometimes from medication.
My confidence started to come back after I redecorated my breasts with tattoos. All the flowers in my beautiful artwork represent ones I love.
How have you got support during this time?
Cancer social media groups have been amazing. You can rant and scream to people, and they just get it. This was how I met the co-founders of LBCUK.
Breast Cancer Now have also been amazing, and I’ve been part of the charity for a while now. When I was recovering from surgery, sitting in my caravan on my own, crying, everything hit me. I used their helpline, and the response was just fantastic, and it made me want to give something back and volunteer.
Through volunteering, I heard about Breast Cancer Voices, a network giving people an opportunity to share their stories, join a community and have a voice on how things work at Breast Cancer Now. I decided to sign up.
How has being a Breast Cancer Voice helped you turn your experience into something positive for you and other people?
One of the most exciting and rewarding things I've been a part of through Breast Cancer Voices is the Ann Summers MyViV project, around intimacy after breast cancer.
I work in sexual health, so for me it was incredible to work with Breast Cancer Now and Ann Summers to design the range. We took part in focus groups to decide on the colour and smells, and we ensured the products had natural ingredients and no colour or perfume for intimate areas. So much thought went into all of them, to help people feel sexy again. It was amazing to be part of something that’s still helping women today.
I also attended the Ann Summers conference and spoke about breast cancer and its effect on relationships, intimacy and confidence. I was overwhelmed by the responses I had from everyone there. They all had experience directly or indirectly of someone with breast cancer and they were incredible and so supportive.
Interested in the Voices Network?
If you’ve been affected by breast cancer and want to share your voice, like Darlaine, you can sign up to become a Breast Cancer Voice. Find out more about about Breast Cancer Voices or ask our team by emailing voices@breastcancernow.org.