Kathryn’s Story

22 Mar 2019 by Krystal Barter

My name is Kathryn, and this is my story.

In 2013, I decided to take a genetic test after I discovered my mum carried the BRCA2 gene mutation. I already had a feeling that I was a BRCA2 mutation carrier and decided before I took the test, if I was positive, I would remove my breasts.

During my life I had terrible nipple spasms which made the idea of parting with my breasts that bit easier. My mum had a double mastectomy in 2015 and it changed her life for the better so it was encouraging to see her results and made me feel confident about my decision.

I went in to surgery thinking that it would go perfectly and that I wouldn’t be in pain anymore from the spasms, but that’s not what happened.

I was 34 at the time of my double mastectomy. Although I had inverted nipples, my surgeons wanted me to keep them because of my age. It turned out that one of my nipples was so badly inverted that it had adhered to one of my breast walls – they were concerned about losing the nipple after my surgery but didn’t think it was a huge deal.

Seven days after my surgery, the left nipple was doing great but the right nipple was narcotic and I was rushed to surgery to remove my implant and replace it with an expander to give my breast/skin time to heal.

I was then released from hospital but 72 hours later I was back with serious infections. I was very ill and needed to have the expander removed. I was so upset and felt like everything was out of my control. After surgery I was attached to a machine that flushes the wound out.
The machine hurt for a while but eventually I got used to it. I had an open would and every three days I had to go into surgery to try to get the infection out – I had ten surgeries in total trying to get the bad flesh out.

The antibiotics I was taking caused a massive drug reaction and my body burnt from the inside out and I became neutropenic. No one knew what was wrong. At that point I had spent 100 days in hospital and my hair had fallen out from the medications and stress.

I had to be sent home eventually but there wasn’t enough skin to close the wound. So I went home with it open wound which did close up eventually.

Right now, I am on the waiting list to get a free flap breast reconstruction.

Despite all that has happened, I do not regret for one minute having my breasts removed. I was having six monthly screenings and at one point I got stuck in the machine – which was the straw that broke the camel’s back. I did not want to spend my life wondering ‘what is the next scan going to show’ and the last thing I wanted was to have my daughter sit through chemo with me.

This entire experience has been cleansing for the rest of my life – I have a new appreciation for the little things. I didn’t get to see my daughter very often, I couldn’t hug her or hang out with her and she had to become resilient. It has taught me so many things. Nobody is going to look after you – you need to take care of yourself. I am so appreciative of this journey because it has shown me who I am and removed toxic relationships that I had surrounded myself with in the past. I have a passion for my life now and everything that I do. I went through this so that I could be a better mum. I wanted to be there for my child. I never wanted to tell her I had cancer and I wanted to take charge of my risk for her.

I feel like I need to tell people about my story because I had no idea that I would walk out of hospital with one boob and the other that looks like a shark attacked it. I never knew it could happen, I didn’t know Pink Hope existed, and I was turned away from support from other foundations because I didn’t have cancer. It wasn’t until I started talking about different surgery options and looking through other women’s stories that I found Pink Hope. I wanted to find a community of other women who have been through what I have been through. It has been a godsend in terms of finding out that things go wrong for people all the time and I’m not alone. Other people have had complications too and there is comfort that I find in that thought.

Having Pink Hope in my life means that any questions I have, can be answered by women who have been through it.

It is also important to me to share my story because living outside of Sydney in a rural place – I don’t know anyone who has been through what I have and if I can help one person by opening up then I will know I have done enough.

I was so fortunate to be given the opportunity to attend the Mudgee Getaway which is a free holiday hosted by Pink Hope and Girls Getaways. I felt so empowered and loved and I finally felt like I was a part of something bigger and I am so happy that I had the opportunity to feel that. It gave me energy and it made me realise that there is a bigger picture here. It isn’t about me, it’s about something more. It was my first ever holiday on my own in my entire life. The weekend inspired me to share my story.

My advice for women who are going on a similar journey, you are not alone! Remember to speak up if something doesn’t feel right because what’s normal for one person may not be for you – always trust your instinct.

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