When I squeeze my eyes shut, and think of my very first childhood memories, I recall skipping around the tree at preschool with my friend Christina, playing the piano with my sister at our Aunt’s house. I have vague recollections of my Grandfather secretly feeding my sister, Ella and me Coca Cola and Fantails, I remember my first day of kindergarten.
But one memory painted perhaps most vividly is standing at the back door, crying to be let out, so I could ride my bike to see my Mum in hospital. I was three years old.
Dad’s boiled peas were terrible, and all I wanted was my Mum.
My beautiful Mum was diagnosed with breast cancer she herself was only 40.
I don’t remember the battle that would have ensued for Mum, I don’t remember the trauma of chemotherapy, the self-acceptance of life post-mastectomy. I just remember an incredible woman in her white night dress giving me cuddles and holding me tight when we visited her in hospital.
I also don’t remember when Mum got better, when things went back to ‘normal’ I suppose as children we were oblivious to the needs of our parents above our own, or the rollercoaster ride Mum was on.
Mum lost her own mother to breast cancer, as well as a cousin. It had touched several other women in the family and so our lineage and history is strong
As a self-absorbed teenager, I didn’t think much at 17 when Mum had her other breast removed, or at about 19 when she had her ovaries and tubes out. I figured it was part of the aging, I really didn’t ask the questions I should have.
I dropped her to the hospital both those times, I even threatened the anaesthetist not to hurt my Mum. I could see she was scared, but I really have never seen my mum cry.
Even at 23, when Ella suggested that we get tested for this gene mutation called BRCA, which could have been responsible for our strong family history, I didn’t really think too much about how all this could impact my own future health, or that of my now young family, having just had a beautiful baby of my own, Bonnie.
The genetic testing journey probably came at a great time. Mid-new Mum, sleepless nights stage, I had very little time to give this all much thought.
So the day I arrived with Ella to receive our results, my apprehension probably wasn’t where it should have been.
Strong memories are evoked from the day I learnt I was BRCA, my sister Ella, was not.I recall a lot of grey.
A lot of numbers. Statistics, risk. But I don’t think I cried.
I remember that day seeing Mum cry, not big sobs, but quiet tears, “I always knew it was you” she said, “I could just feel it.”
At 23, I was told I had an 80% lifetime risk of developing breast cancer, and a 60% lifetime risk of developing ovarian cancer.
As a fearless, focused and determined young woman, nothing takes the wind right out of you more than having to face your own mortality, and the thought that you may follow in your mother’s footsteps, your grandmother’s footsteps, and too have to face a future of uncertainty and almost certainly cancer.
But I boxed it up, and I put BRCA in the I’ll deal with it sometime later, department, wanting to focus for the interim on completing my family and enjoying my young life.
After a childhood of what was almost a normalisation of cancer, my increased risk almost felt as though cancer itself would be inevitable, and so I pushed on with the view to deal with it when I was old enough to fully understand the ramifications.
But I suppose this didn’t take long, because by 27 I was into the high-risk screening clinic to face my uncertain future. I had just had my second gorgeous child, Joey, and knew more than ever that being around for my children was something I simply wasn’t willing to compromise on.
I was still weighing up my preventative options and wasn’t sure where I would land. But, the decision was really made for me when I quickly realised I was only able to emotionally put myself through this for two years because every year I would sit at the hospital waiting to be seen for a breast MRI and ultrasound, wondering if this would be the visit they found something.
Last year in July, when going in for my routine check, my fears were close to realised.
In what should have been a regular ultrasound, the technician excused herself saying she needed to get the doctor to look at the scan.
What, she wouldn’t say, but in those 10 minutes alone, laying and waiting for them to return, without a hand to hold or a blanket to conceal my vulnerability I honestly cried properly about my risk. A BRCA cancer isn’t like most. It’s aggressive, it’s often bilateral, and it’s most certainly diagnosed before the age of 40.
I think my decision was reaffirmed the first time I went to meet with my breast surgeon and a three-stage process was agreed, I was booked in and I was on my way. The day we booked that first appointment, I felt empowered. I felt as though I was on the road to putting this breast business to bed, and I was taking control of my future.
Stage one was a breast lift to correct my ‘saggy’ breasts – a term my incredible surgeon used to describe them following breast feeding my two children. This was a simple surgery and would reduce the risk of losing my nipples during the second surgery, which occurred in February this year; a double mastectomy with tissue expander replacement.
To say the mastectomy was easy would be a lie.
To put yourself into a hospital bed, when you aren’t sick, to put yourself through what I would describe as on-par with natural childbirth, is confronting, and yet, incredibly empowering. Because in an incredibly bizarre way, I am lucky.
Unlike my grandmother, my great aunt, my mother, her cousin, I got the chance, and the choice, to change my future, and that of my family.
For the first few weeks, it was almost impossible to look in the mirror. What had I done to my body? Was this all worth the pain?
Perhaps however, the hardest thing of all, was talking to my children, namely my daughter, about the choices I have had to make, the reasons why and trying to teach her that while the pain now is bad, the future is much brighter because of it.
And while the pain does subside, there is, and will always be a constant reminder of what I’ve done, and what I’ve been through. The scars, the loss of sensation, the reflection in the mirror.
The physical side however, is far outweighed by the hope I now have for my future, and while I still have to make the decisions about my ovaries, I feel grateful every day to be here.