Taking over-sharing to a new level

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Today I went on national TV and talked about getting my boobs chopped off. I almost cried when I talked about my mum, and I now want to remove a mole I have on my face but apparently I did very well. I managed to get a plug in for http://www.pinkhope.org.au and am chuffed that I did my bit to get our story out and raise awareness of BRCA. I’ll try to get a clip and post it up here.

The other highlight was that Angelina Jolie ‘favorited’ my tweet to her. We’re so going to be BFFs forevs and evs.

Angelina; Helping Previvors find their place

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So it appears that I have more in common with Angelina Jolie than I ever thought possible. No, it’s not a gaggle of children, adopted from the far corners of the world. We’re both women who have voluntarily decided to undergo mastectomies in order to prolong our lives and reduce our risks of breast cancer. And like Ange, I also have a (better looking) version of Brad Pitt in my rock, Mr F.

Her letter to the New York Times about her decision to undergo a prophylactic mastectomy following her BRCA1 diagnosis is beautifully written. I applaud her for using her celebrity status to raise awareness and understanding of what it means to be a Previvor and the choices we have available. http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html?smid=tw-share&_r=2&

Finding our place

Part of the reason I think that Angelina’s sharing her experience with the world is so important is because as Previvors, we’re a bit of a funny bunch that don’t neatly fit anywhere. We’ve not actually had cancer, but at the same time, face a different reality and decisions from your genetically favoured, Josephine Bloggs.

Not cancer enough

When people first found out about my decision to get my boobs chopped off many, very kind and generous friends offered to put me in touch with people they knew who had been diagnosed with cancer and had undergone a mastectomy.  I found this generous offer a difficult one to reply to, or explain.

Most Previvors will be too familiar with the heartbreaking effects of cancer and many will have lost more than one family member to the disease. But we haven’t actually had cancer. We’re the lucky ones who were given a choice and could take a part in somewhat guiding our fate. Many of us have no idea what cancer personally feels like and hopefully, if we follow the course of continued expulsion (boobs, followed by ovaries or Fallopian tubes), never will.  At low points, when things get tough during this experience, I often feel ashamed that this fact is not front of mind.

Our surgery follows a similar course, but aesthetically, physically and mentally, a Previvor’s journey is much more straightforward. We don’t have to endure chemo or radio-therapy and as a result, things are much easier.  So for me at the time, talking to a cancer survivor to help me come to terms with my experience felt a little insensitive.

Not quite healthy enough

For many of us, we’re not sick at all and could be living extremely healthy lives. However, we don’t fit into the genetically favoured crew either.

Imagine waking up each morning with the mindset that one day you’ll get cancer. Not maybe, but you will definitely get cancer? I’m not saying statistically this is the case, but there is a really high probability that you will and for me, mentally, it was definitely going happen.

Many Previvors have had to face their mortality from a very young age. I avoided mine throughout my twenties, but I was always running from it. For those who do face up to it, how young is too young to put the information you have been blessed with to good use?

You see, we have been given a gift. The gift of information and more fool us if we don’t use that information responsibly. If we are diagnosed with carrying a BRCA mutation and continue to smoke and drink too much alcohol, are we complete idiots? Should we never take the contraceptive pill because we know the risks? And if we don’t decide to get our boobs chopped off and we get breast cancer, is it our fault for waiting too long and not acting?

On the subject of breeding, am I selfish for wanting to reproduce the normal way and just hope for the best? Will I be able to forgive myself if I pass my faulty gene to my daughter who has to undergo a mastectomy in her twenties?  Will I be able to watch her make decisions about freezing her eggs just in case she doesn’t meet Mr Right before she has to have her ovaries removed?

I’m not playing my small violin and complaining about it, it’s just, we don’t quite fit here either.

The Previvor crew.

Thank goodness for my crew, the Previvors. Like any group of people, we’re a disparate bunch spread all over the world and our stories are all different.  Some women are happy to share their experience along with their post-op booby pictures, and others aren’t. We’re all at different stages in our lives and being BRCA positive has different implications for each of us. What we do share is a huge level of compassion and a willingness to be there for each other. We are all, in our own ways, pulling together to form a strong community. To be there for each other and help others understand us too.

So thank you Angelina, for helping more women like us find our crew and know they are not alone. As well as helping the rest of the world understand where we fit too.