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Shelley’s Story

20 Aug 2015 by Krystal Barter
Shelley’s Story

My name is Shelley and I’m a BRCA2 mutant.

Sometimes having a genetic mutation is somewhat akin to an addiction, in the sense that there are times when it can be all consuming. For me it comes in stages, but there have definitely been times when this has been the case and while I try not to let it impact my life on a daily basis, I guess it is always lurking in the background (like a slowly ticking time bomb) – with moments when it is very much in the foreground.

I first discovered that I carried a genetic mutation in September of 2011, after being informed in the January of that year by my Father that he carried this mutation and that my brothers and I should be tested to see if we were also affected. My brothers both tested negative and while at the time my knee jerk reaction was anger and a little resentment, I am now extremely glad that they will never have to worry about the impacts that having a genetic mutation can have on one’s life and also that my gorgeous nieces and nephews will also never have to bear this burden.

I wish that I could say the same for my own wonderful children and grandchildren, but alas there is a 50% chance for each of them that they too may carry the gene. It’s a horrible feeling as a parent to know that you may have given your children such a trait, but I have high hopes that with the marvellous advances in research and medicine that the discovery of this genetic predisposition has brought about, the decisions my children may potentially have to face in the future will be a whole lot simpler.

In 2015 I underwent a preventative bilateral mastectomy, with expanders and then implants in 2017, after having opted for monitoring until this point. I didn’t make this decision lightly, but it is one of the best decisions that I have ever made in my life and I know that I will never regret this decision or forget the feeling of relief that overwhelmed me on recovery.

I am now approaching my mid forties and need to start preparing for the removal of my ovaries and to be honest this surgery terrifies me much more than the thought of the mastectomy did. The irony is that the thought of ovarian cancer terrifies me infinitely more, therefore; you would think it would be a no brainer, just whip ’em out! So why is it then that I obsess over the possible side effects of menopause, the increased cardiovascular risk (which for me is a big one given that my paternal grandfather and my father both died of heart attacks in their early 50’s and 60’s respectively) and the effect that this surgery could have on my personal relationships…..aggghhhh!

It must be the hormones!

I am not great with the hormonal ups and downs of life as a woman anyway, let alone the potential turmoil that surgical menopause could invoke. With two young children still at home and a new relationship, potential emotional turmoil is not something one would intentionally choose and yet I know that I will, when the time comes, as we all do….we take the cards that we are dealt and we play the hand as best we can. The risks associated with the option of not having this procedure are far too great to gamble with.

Luckily for me, I have another card up my sleeve. An ace one might say!

An amazing support network of women and men in the same or similar situation, who have been through or are going through very similar situations, have walked the walk and can talk the talk.
These women in particular have become the sisters that I never had…my Pink Sisters, all the wonderful women that I have met and befriended through Pink Hope and I couldn’t imagine this journey without them. And because of this and my fantastic, friends, family and partner, I know that I will get through this, just like I have in the past, with some tears along the way, but hopefully also some laughs.

In light of the wonderful support that I have received as a member of the Pink Hope community I am honoured to have been able to give back in a number of ways, by attending the annual Information and Support Day in Victoria, by becoming an Outreach Ambassador, by being involved in Bright Pink Lipstick Day campaign and in a couple of months will be hosting my first ever She Shares event for the rural women in Central Victoria, like me, at high risk.

I plan to continue to be involved in the future with all of these events and would love to see more events hosted in regional and remote areas, but my real passion is to engage with and involve the men that are affected by these genetic faults as well, not only those that carry genetic mutations and the associated risks of prostate and breast cancer (yes men can get it too!), but also those who are supporting women at high risk.

Last year I was fortunate enough to have the opportunity to trek the Inca Trail in South America with an amazing group of women raising funds for Ovarian Cancer Australia.

Similarly, we all have our own personal mountains to climb in life’s journey, and as we high risk men and women continue to conquer our own personal mountains to prevent having to deal with these insidious diseases, we know that we can always count on the support of Pink Hope and I hope that they know that they in turn can always count on me!

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