THE BLOG

Life or Breast

14/11/2014 17:19 GMT | Updated 14/01/2015 10:59 GMT

When I was nine years old my mum died of breast cancer leaving me, my older sister, my brother and my dad behind. Changing my childhood from one of security and love to one filled with uncertainty, fear, sadness and grief.

That event changed the course of my life and affected who and what I am today. I was very aware of this growing up and when i was around 17 I made enquires about having genetic testing to see if we had hereditary breast cancer in our family. I was informed that because my mum had died such a long time ago and hadn't been tested for the gene that i couldn't be either.

When my older sister was 25 she was diagnosed with breast cancer. I was in complete shock. All I could think was 'I'm going to lose her'. Her battled lasted six and 1/2 years. Long, tiring, gruelling and devastating. She finally died aged 31 on January 10 2012.

Within the whirlwind that was the first two weeks of my sister being diagnosed she was informed about being tested for the gene mutations BRCA one and two. As my mum had also died reasonably young from the disease and we had reason to believe it was on both her mother and fathers side of the family it seemed very possible that the gene resided in our family.

To test for the gene mutation it is my understanding that you must already have developed cancer. Once the gene mutation is found in the cancer suffer it can then be looked for in relatives who haven't developed the disease. I was one such relative and when my sister tested positive for the BRCA 1 gene i opted to have the test done straight away.

I had a blood test at Great Ormond Street and after several weeks I had to go back for my results. I remember my sister saying to me 'you take after Dads side of the family so you won't have it, I know you won't'. I was pretty certain i wouldn't have it. I was so confident that even if i did have it it wasn't that much of a big deal that despite offers from people to come with me I decided I could do this on my own. The feeling when she looked at me and said 'i'm afraid you have the gene' was like someone punched me in the stomach. She went on to give me a lot of information but the only 1 thing I seemed to hear was 'You have an 85% life chance of getting breast cancer.' I couldn't get out of that room fast enough. I walked along the street outside thinking 'What does this actually mean' holding back my tears. Then i felt bad. Why am I crying? I don't have cancer, my sister does. Then my thoughts turned to my family. How do I tell them? On top of everything else?

I did tell them. I went to a genetics clinic held and Guys and Thomas shortly after to find out my options. Then I got on with my life. Knowing that the only preventative measure would be a double mastectomy I wasn't ready to do it and I wasn't mentally ready to cope with it. I spent the next six and 1/2 years being at every hospital appointment, chemo session, operation, hospital bedside and eventually hospice bedside I could. Sometimes I would get kicked out my sisters hospital room after falling asleep on the floor. Leaving her was the hardest thing I've ever had to do. Sometimes I wish we could have just stayed there forever. Eating chocolate, making jokes and pretending none of it was real.

Sadly it was real. Very real. She got so ill, so disfigured and was in so much pain just seeing her like that hurt. When she died I was relieved for her. Relieved she no longer had to exist like that.

That was two years and eight months ago. Now I'm ready.

I feel so lucky to be in a position where i can actively do something to avoid the same fate as my mum and sister. I feel empowered that there is an action I can take to seriously reduce the risk of my life ending up the same way that their lives have. I have spoken to other young ladies who carry the gene or might carry the gene. One thing is very clear. There is a lot of fear and confusion that surrounds the topic of genetic testing for breast cancer. People. especially young people don't seem to like talking about anything that factors in our mortality. For me both death and cancer are two things I have experience with. They don't scare me I just realise the importance of being able to talk about them and not just 'hoping for the best'.

I always said to myself I would be in a steady, stable and loving relationship when I did this. That way no matter how I looked afterwards that person would still love me. However I'm single, I don't have kids, in fact I won't have kids until this has been done. My worse fear is having children and having to leave them.

I want my journey to rid myself of my breast tissue to reduce my 85% to around 4% to be shared with millions.

Why should my story be told? I'm a young woman who can openly and honestly talk about the fears and realities of breast cancer and being a gene carrier. I am a presenter and story teller. I feel there is no point me going through something so huge and life changing if I don't intend to use it to help and inform others. I want this story to be one that informs and empowers people everywhere to tackle things head on. I hope my story will allow people to feel they can open up and talk to about things that concern them. I want people to know that they are not alone. I want the mystery and confusion that surrounds genetic testing and what it means to be lifted and clarified once and for all. This story is one of positivity in times of adversity. It's a topic that affects millions of people in one way or another, that has never been full explored or told. I want to raise awareness and open peoples eyes. I want people to know the importance of having the genetic test and asking the NHS for it if they are suffering with cancer and think it could be hereditary as it is not offered automatically and it's something that once someone has passed away can no longer be done and thus their relatives can't be tested. Finally the over riding message is that despite the situation war some may consider a negative can be very easily turned into something positive.

Love,

Claira

xxxxx