“I'm a "Previvor", I'm gonna make it, I will survive, keep on previving".
"Previvor" - such a strong yet confusing word. But this is what I refer myself to now. For the last 2 years my life has changed more than I could have imagined, in both good and bad ways.
"Previvors are individuals who are survivors of a predisposition to cancer but who haven't had the disease. This group includes people who carry a hereditary mutation, a family history of cancer or some other predisposing factor". - www.facingourrisk.org
I've never been keen on 'labels' but this one does do my journey justice, I think. In saying that, I would never try to compare my experience against someone who has or is fighting cancer. The word for me, signifies strength, experience and knowledge.
I am a strong believer in the phrase "everything happens for a reason". As clichéd as that sounds, I really do, even the bad stuff. It was fate that I was late for work one day and found myself watching the Lorraine Kelly show back in November 2013. It was fate that Michelle Heaton was there discussing her decision to have been tested for the faulty cancer gene that seemed to run in her family.
Unless you've been living under a rock the last couple of years, then you're bound to have heard of the cancer gene mutations, BRCA1 and BRCA2. These two buggers are responsible for around 20% of familial breast cancers. I carry BRCA1. In August 2013 I underwent a preventative double mastectomy and reconstruction.
My family history is quite unique in the sense that even though my own mother was diagnosed at 31 with breast cancer and passed away at 35, I am actually more at risk of ovarian cancer with my grandmother and great grandmother both passing away at 36 and 35. My great grandmother had 4 sisters, 2 of which also passed away at ages 35 and 45, of what they suspect was ovarian and womb cancer. My great grandmother also had a brother who died of cancer aged 67, and his two daughters and grand daughter also succumbed to ovarian cancer aged 49, 41 and 44.
Seeing those facts right in front of my face scares the crap out of me. Since day one none of this has seemed real, it wasn't happening to me it was happening to someone else. Someone else sat through endless appointments of intense genetic counselling; someone else had prosthetic nipple casts made. Someone else disfigured her body; someone else at the age of 32 has to have her eggs frozen, go through early menopause and have her ovaries removed and risk never having children. However this "someone else" is lucky to have had the opportunity to do these things, in order to save her life.
Like so many people, I was under the impression it's just a case of taking a simple blood test. But it's not as easy as that. That blood test is life changing. I didn't realise it at the time. In fact, I don't think even now I realise it. One simple thing can change your whole outlook on life.
If I sound like I'm bitter about it, I am. I'm angry, sad, frustrated and I'm pissed off that I have to make these decisions. I'm pissed off that I can't wear nice lingerie because my new boobs don't fit into any bras. I'm pissed off because I don't have nipples and I'm currently having tattoos done every month, which hurts. I'm pissed off because I have scars that won't go away.
I'm pissed off because my mum has died.
Whilst sitting in a room with my sister, when the genetics counsellor said, "Yes you do carry the BRCA1 gene", I went numb. I don't remember much else. Tears ran down my face and all I wanted to do was run from that cold, dark, miserable room.
I was told what my options were - have prophylactic surgery which will reduce my risk of developing breast and ovarian cancer, or just continue life, as I have been but use enhanced screening tools (MRI, mammograms, internal ultrasounds etc) to catch any cancer at its earliest stage.
For me, personally, I knew I wanted to do anything and everything I could to not be in the position that my mum was in. My decision was already made. Looking back now, and knowing what I've been through (3 ops rather than one), my decision would have remained the same. I've been given the chance to do something about my risks. So many people don't have that opportunity.
My decision to have my preventative surgery was met with some antagonism - even from family members. I've been accused of jumping on the "Angelina Jolie band wagon". Angelina actually revealed she had undergone her mastectomy two weeks after I have found out I carry BRCA1. I'm glad that she told the world - its put BRCA in the spotlight and more people now at least understand a bit more.
I had great support around me, family friends, and colleagues, but I kept my true feelings private. I only cried on my own. I felt guilty that I was in this position (a few people I knew were going through cancer treatment at that exact same time) and they didn't have this chance to change their fate. I did. So I held my feelings in, I wanted to look like I could handle it, but truth be told, I was a mess.
My mastectomy was the easiest yet the most difficult choice I have had to make in my 32 years so far. It was not just about reducing my risk of cancer - I was changing my whole body, changing how I looked. I've always been "blessed" in the boob department, before my op I was a FF and now a DD or D. I've had 3 ops in total, and the left breast isn't quite right but after 2 subsequent ops (once to fix the implant that had slipped under my armpit and the other to remove some extra tissue that had been left in) I still don't like my new breasts, I'm still struggling to come to terms with my new look.
I still visit my own counsellor regularly to try and overcome my body image issues - it's been a huge part of this journey is coming to terms with how different things are now. I know I will get there, it's just going to take some time.
I am now facing the tough decision of having my ovaries removed to reduce my risk of ovarian cancer. When I was told about carrying BRCA1, the main focus was always on the mastectomy, but as I said previously I am actually more at risk of ovarian cancer. And now at 32 years of age, being in a relationship, I know have even bigger decisions to make. I now face the prospect of freezing my eggs, going through early menopause and the possibility that when trying to conceive using IVF my chances of actually having a baby are reduced.
I always saw myself as having kids, and being a mother. I have no control over this and it breaks my heart. I know that I need to have my ovaries removed, and I am currently on the waiting list to start the rigmarole, and when I see my friends having babies, falling pregnant, I do feel slightly envious - will that ever be me? Is it fair for me to have children?, I might pass the gene onto them, is that fair?
I have used my experience and tried to turn it into something positive.
After watching the BBC3 documentary, Kris - Dying to Live about the founder, Kris Hallenga now aged 30 and her experience of living with terminal breast cancer and her charity Coppafeel!, I instinctively knew I wanted to be part of this charity.
I now volunteer for Coppafeel as a Boobette where I don a giant boob costume and visit schools and colleges to encourage others to check their boobs and to try and educate them to know the signs and symptoms of early stages of breast cancer.
Being a Boobette has without a doubt given me confidence to stand up and share my story and not be embarrassed. At our very first training session there were five of us, all young women all there for the same reason but with very different stories. There was a young girl about 17, who had found a lump but luckily it had turned out to be nothing; a young mother of two who had been diagnosed with breast cancer and was just getting her life back on track; a 27 year old woman with incurable breast cancer and her best friend; and me.
I will never forget that day. It did turn into a bit of a counselling session - listening to each others stories, shedding tears. It was that day that I realised how important and life changing my choices had been.
There was however a point during that day that I was overcome with guilt - here I was sitting with two young beautiful women who had no way of preventing their diagnosis and both women certainly did not feel sorry for themselves in any way shape or form. Both of these women still inspire me so much - their zest for life just overwhelms me.
I've never seen my self as brave or an inspiration - that's a label for the people who have fought or who are fighting this devastating disease. And I'd never want to compare my journey to someone who has had a diagnosis of cancer - you can't compare, but my experience has been similar in many ways”.