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Tess’ Story

04 Apr 2018 by Krystal Barter
Tess’ Story

Ta Ta to the Tatas!

My name is Tess, and this is my story. In April 2016 I got tested for the BRCA 1 gene – shortly after that, I found out that I carry the BRCA 1 gene. Finding out this result at the mere age of 26 was not ideal, nor part of “my plan.”  The feelings that surfaced were not surprising –I was sad, I cried, I felt lost, but I also felt that I couldn’t waste any time.  I sat on my results for roughly one month, and then decided to book surgery in November.

To give you a bit of context….my grandmother, who I unfortunately never got to meet, was 39 when she was diagnosed with breast cancer on one side only.  She was reassured by doctors that it was not hereditary and that she needed to have a single mastectomy. She passed away 5 years later, when it metastasized.  I always wonder if the doctors had told her to have a double mastectomy, would she have been here today.

My mother was diagnosed with bilateral breast cancer at the age of 37, she went through chemotherapy and had a double mastectomy. She also had a prophylactic hysterectomy approx. 1 yr.  later.  To this day, she is the strongest woman I know and someone who inspires me daily.

I was lucky to have both my mother and sister travel from Vancouver, Canada to be with me for my first two surgeries as well as the local support from my partner and his parents. I started this journey with a nipple delay to ensure that my nipples would survive during the first surgery. Then I ended up getting my prophylactic double mastectomy and breast reconstruction with air expanders. I was originally supposed to have the air expanders for 6 months, but due to complications with one of them, I ended up having to book my exchange surgery only after 3 months. (Thank God!)  Anyone reading this, who has gone through this, will know that the expanders are the worst. They are hard and uncomfortable and as much as the complications were unplanned, I was happy to get them out.

During this already difficult and life-changing time in my life, our beloved dog was very unwell. My boy, Frank, was “my child” and our everything. At the age of 3 he was diagnosed with cluster seizures and sadly, only lived 6 months beyond the initial diagnosis. During these 6 months we had countless trips to the Emergency Vet Hospital and administered multiple medications. He unfortunately passed away, one week before my exchange surgery. I could see myself emotionally and physically crumbling into a million pieces.  The only person I could think of that could pick up these pieces was my mother. Without even hesitating, she booked a ticket and flew from Vancouver to Melbourne in the blink of an eye.

My third procedure and hopefully my last – for now, went smoothly.  Although waking up from this procedure and remembering the loss of Frank was difficult. I felt incredibly blessed to have my loving and supportive mother on one side and my wonderful partner on the other. The sadness around the loss of Frank was heartbreaking and came at such an unfortunate time of weakness in my life. I found strength in my partner, family and friends and tried to remind myself that time would heal this empty place in my heart.

Just when I thought it was only uphill from here on out, I was hit with the shocking loss of an important family member and father figure. My uncle Bill was a father figure to my mother, and like an uncle or grandfather to myself and my sister. He was a thoracic surgeon and played a large role in and around my decisions for taking on the preventative procedures. When I first told him about my decision to undergo the surgery, his response was:

Your decision is a brave one, but one I can wholeheartedly support. Such a difficult decision. You have received good information and your support network is strong. Consider me among your supporters. You will do well, put this behind you and have a happy and long life – now that’s hard to beat. Love you, Uncle Bill”

He was right – all of my supporters helped me get through this tough time. So many people supported me from near and far. They were an imperative part of the entire process, making it easier than I could ever have imagined.

Last May I started having some personal struggles.  I felt alone – I felt that no one understood what I had gone through and I really started to hate my new boobs, my scars, my body and ultimately felt guilty for having these horrible feelings. I never loved my before boobs and I didn’t miss them now, so it was hard to understand these negative thoughts. Why hadn’t it been easier to initially love my new boobs and feel confident in my skin? After fighting these conversations and negative thoughts for long enough, I decided that I needed to reach out and speak to someone. Shortly after making this decision I found Pink Hope Australia on Instagram. It was then that I realised that I was not alone. I discovered that there was a beautiful community of strong women who had fought the same battles and conversations.

I began following Pink Hope Australia on Instagram. Their posts were inspiring. I started to realise that I was surrounded by these amazing women all around the world who I could relate to. One in particular, @paigeprevivor . I would read her posts daily, and I finally felt comfortable enough to reach out and directly message her. I thought to myself – what’s the worst she could do, not respond? I could understand that, she has a boat load of followers that probably message her. But within days, I got a message back. We messaged back and forth sharing similar feelings and stories around our health journeys and breast cancer. I mentioned to her that if she was ever in Australia to let me know, as I would love to meet her in person, even though I already felt like I had known her for years.

Fast forward- 2017 was finally coming to an end and more than ever before I felt like I was ready for a new year – “New Year, New Me” right? I wanted to bury 2017 and move forward to a fresh year.  Through following Paige on Instagram there was one post in particular that really stood out to me. It was a post of Paige with the world behind her and the caption said “Where in the world are you, Breastie?” This post was all about building a community of woman who shared similar stories around breast cancer. This post reached out to many women all around the world requesting everyone to comment from where they lived.

This connected me to some amazing people close to my current home and afar. A few weeks later, I had the pleasure of meeting Paige in person in Sydney along with 20+ beautiful woman who are survivors and previvors, at a Pink Hope Australia event at the Langham Hotel. We gathered and shared our stories, cried together, laughed together and touched our new boobs together. We all bonded in a way that no one can describe.

Everyone made me feel like I belonged, and I had a place and voice in this world. We all heard one another and shared the pain and struggles that we have faced.

Paige and Pink Hope Australia were instrumental in making me feel like me again. And I will continue my journey with meeting more incredible people around the world who have gone through the similar situations going forward, so I can help others just as they have helped me.

I’m also very thankful for my incredible surgeons, Dr.Natalie Ngan (Cosmetic Surgeon), Dr Sophie Nightingale (Breast Reconstruction Surgeon) and Dr Louise Ellard (Anaesthetist) as well as all of the dedicated scientists and researchers at Peter MacCallum Cancer Centre.

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