When Life Gives You Lemons

For anyone that doesn’t know about BRCA, there are two genes, known as BRCA 1 and 2 and named after BReast and CAncer because they dramatically increase a person’s chance of developing breast cancer and ovarian cancer during their lifetime.

After reading stories online about how surgeons refused younger patients preventative surgery, I worried I would have the same outcome. After organising an appointment with my surgeon to discuss future plans, I didn’t have high hopes, knowing there was a high chance I’d get the same answer – “but you’re young, you have years to decide.”

However, I walked out of Airedale Hospital with my head held high, and the answers I wanted. I was ecstatic. You must be thinking, why are you so excited about having a mastectomy? For the last five years, this has been a decision living in the back of my mind, rent free. It never leaves, whether I’m eating my tea, with friends, falling asleep or writing! This September I am fortunate enough to have the chance to save my body, a chance not every person can have.

After all, how lucky (sort of,) am I to have the prewarning that I am at an increased risk of getting cancer? It was, of course, an extremely difficult decision to make, but whenever I feel down I remind myself how fortunate I am to be given the opportunity to potentially save my own life.

“Breast cancer can often feel like a death sentence, which is why I made the decision straight away to have a preventative double mastectomy at 22-years-old.”

It’s also not to say that I have outgrown any fears, I still become overwhelmed by the thought of a cancer risk, this is a long journey that I have barely begun. I gain more confidence, knowing I will slash my breast cancer risk down to about 5%. It’s not to say that risk-reducing surgery is the right decision for everyone and it’s not a decision to be made lightly, every woman or man has the right and the power to decide what is right for them.

I had spent hours scouring the internet and searching for articles hoping to find other people in the same position and finally, here I am, surrounded by the most inspiring and positive people in support groups. All of us have different backgrounds and a different story but the one thing we have in common? We all carry a mutated BRCA gene. It’s helped me realise how normal and common a mastectomy is!

My mum, Lucy D’Evelin, passed away in 2014 because of breast cancer. I can recall sitting on the carpet as she did her usual daily boob checks, this became the norm in our household. I remember looking up and seeing her eyes frozen, this was a look I had never seen before, her hand still holding the side of her breast, I said, “what is it?”. “I can feel a lump that’s not usually there, it feels like a pea.” she whispered back. Weeks later, she was diagnosed with breast cancer.

The weeks following after she came home from the hospital after her double mastectomy, I would often find her in tears about how she felt like her femininity had been stolen from her. Her hair was short from the chemotherapy, she had to have her eyebrows tattooed on, her nails were still growing back. Not only had she just had a double mastectomy without reconstruction, but a hysterectomy several weeks before.

I remember looking at her and thinking that she just looked like mum. But, seven years ago, there was much more of a stigma to how mastectomies looked, but in recent years there has been a sudden growth in awareness. Without a doubt, if she had been here today, I know she would have accepted her scars. She would have been straight to the tattoo shop and had something crazy inked across her chest. I remember her friend dropping off black glitter nipple tassels to try cheer her up, and it worked. If there’s a will, there’s a way and it’s shiny tassels!

“I don’t know exactly how long I have, but I promise I’ll make it to your prom.”

There are lots of memories of my mum, but the most vivid are the ones when she wasn’t well because we were so young, I was 14 and my brother was nine. I remember visiting her in hospital but she never seemed sad. Angry at the world perhaps, but always laughing. She obviously knew she wasn’t going to be here much longer, but we were oblivious. One evening after school, she sat me and my brother down. “I wanted to talk to you about something, the cancer has spread, and this time I don’t think my body will be able to fight it off,” she said. “I don’t know exactly how long I have, but I promise I’ll make it to your prom.”

The time we had left with mum, she never stopped smiling for us, even when she was laughing about what funeral song we would choose for her! Towards the last few days, she slept peacefully, she couldn’t talk or open her eyes, but we would play her music and she would tap her fingers along to the beats of the songs. Our mum died peacefully in her home on August 3rd 2014, and prom was still two years away. Little did we know, my grandma Sarah had also been fighting cancer, but she kept it a secret so that she could give her daughter the best care possible, and weeks later, she passed away too.

I hope my mum never worried about passing down this gene, as she had me and my brother Marc before she knew about her own gene, it’s just life, and genetics! An improvement in modern technology means that I’ll get the chance to have IVF to ensure I will never pass this gene onto my children. BRCA wasn’t well known about when I entered the world. But, when life gives you lemons…

ColneLife Autumn 22