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Romy’s Story

It’s often the most difficult times in our life we learn from the most. A time when a band aid, antibiotic or a weekly massage just isn’t going to fix it. Mine was 4 years ago. My mum called, as she usually does several times a day but this time there was silence. Knowing her routine mammogram had been that morning, I feared the worst. Cancer. Breast Cancer. Our world fell apart in an instant.

We entered a very scary world of doctors, a crash course in terminology and fast decision-making. Trying to remain strong and positive for Mum as well as our own families was all consuming. Hours in hospital as Mum underwent several surgeries and chemotherapy felt like a marathon. A race against the cancer. And we all know, not everyone is blessed to win that race. My late grandmother hadn’t.

As my mums’ story developed we found out her cancer was due to a genetic mutation called BRCA2. This word wasn’t completely foreign to me, as only a few weeks prior I saw the gorgeous Angelina Jolie talk to the press about her BRCA mutation. But what exactly did this mean? This gene mutation causes a significantly increased chance of developing breast and ovarian cancer in women, and breast and prostate cancer in men. What is startling, is that it affects 1 in 40 Ashkenazi Jews as opposed to 1 in 800 for the general population.

Mum’s oncologist explained that because my mum is a carrier of the gene, there was a 50 percent chance for every birth, that she passed the mutation onto her three children. She strongly suggested taking a simple blood test. Six agonising weeks we waited for the results to come in and determine my fate. I walked into the room, and instantly knew by the look in her eyes. I tested positive. I was that 1 in 40.

My family and I began a roller coaster of unimaginable heights. Juggling a family of three kids and a business whilst trying to remain strong for Mum while she was going through treatment was all consuming.

Why me? What had I done to deserve this? And what exactly was I going to do with this new fate? I had a big decision to make. To be tested regularly, or undergo risk reducing preventative surgery. A hysterectomy and a double mastectomy. There were many nights of tears. Hours of ‘what if’ discussions with my husband. I dissected all I knew and had known. My perspective on life changed instantly. I needed a crystal ball to see my future, in hope it would tell me what to do. I played the statistics over and over again trying to make sense of it all until I finally realised I wasn’t making this decision for myself, but for my three young children. I knew one thing for sure, that I’d do anything to watch them grow up and prevent history repeating itself.

With the gift of time, and an incredibly supportive husband, I found my team of surgeons and took a major leap of faith. I made the decision to undergo preventative surgery. Despite having so much support around me, I had to face my demons on my own and dig deep to find strength, acceptance and perspective.

I’ll never forget the morning I woke up after surgery. I had this incredible sense of calm and relief. As I looked out the window that morning I saw an unforgettable sunrise with hot air balloons. I picked up my phone and took a picture. I don’t think I realised what this image would represent to me in time. This was the start of the new me, a new journey with different perspective. Despite being a very private person, the last few years I’ve been incredibly vocal sharing my journey in hope that I can be there to support others walking in similar shoes. The connections I’ve made are immeasurable; inspiring, heart-warming and empowering. I had no tangible concept what it felt to turn such a disheartening and painful experience into something so equally empowering.

A tribe of people that have felt each other’s pain and fears, celebrated surgical milestones and offered support and guidance. I began to realise what community and friendships are all about. Making connections, feeling secure and free to share our stories, open our hearts and empower one another. My body had changed, and so had my perspective on life. I now understand that modern medicine had given me a gift of choice, that knowledge meant power and with fear, empowerment. Yes I had made a brave decision, but I wanted to show my children that’s it’s not just about what we do, but what we do with it. How we can choose to face challenges in life and turn them into something positive, and powerful. I still don’t know which of my children I’ve passed the gene on to, and sadly I have no control over this now. What I do know, is the more support we have, the more money we raise to help eradicate this gene, the more chance there is for a brighter, life changing future.