WE STRUGGLE BUT WE DON'T QUIT - GUEST POST 6

This is the last post in the series " We struggle but we don't quit". 

Today we meet Sarah, a 29 year old nurse from Australia. Her endeavours to find proper care and advice for herself, and her ability to soldier on in the face of adversity, are truly inspirational.

INTRODUCING SARAH
What do you do next when all your fighting and pushing for your health doesn't pay off? 

When I look back at the time of diagnosis all I did was advocate and fight for my health. The doctors had no answers. I had no answers and yet I knew that something was wrong. Something deep inside told me that something wasn't right with me, despite what people said.

It wasn't in my head; it wasn't because I was overweight and it wasn't about what I ate. This persistent drive inside of me told me that I should keep going. There had to be a reason to the way I was feeling.

Answers did finally come (a lot more then I expected) - multiple medical conditions meaning multiple doctors, tests and hospital visits. Cowden's was a diagnosis that I was expecting but never wanted. A high risk cancer gene meant I was at risk of a plethora of cancers, and in particular breast cancer. My mum lost her battle to breast cancer when I was 19. I wanted my journey to be different.

Despite the challenges I wanted to be proactive. I continued to research and be my own advocate. I quickly realised that the now infamous blank stare from doctors would become part of my life and that it would be my job to educate doctors and medical professionals. In a small part it gave me a purpose to my medical conditions and gave me control back over things I never asked for.

One of the most particularly frightening things for me was the prospect of breast cancer. With an 80% lifetime risk and given my family history, the risk was high. It is a difficult subject for me as I saw what my mum went through. When I saw changes in my scans last year, (although they were benign)it was enough for me to start asking about prophylactic mastectomy. To be honest the mere thought was terrifying, but I knew it was my best option to reduce my risk. So I went to my surgeon and got a referral to a plastic surgeon. I knew this would be an uphill battle as my surgeon said I was too young to have the surgery. I pushed ahead with the consult anyway. Even though I knew the chances were slim, it was still a shock to me when the plastic surgeon also said no.

I put all this time and effort into my health to be told no. I freely admit it threw me. I didn't know what to think. Was I wrong? Was he wrong? Why didn't he respect my concerns about my health risks? All I was told was to lose weight and it would make things better. I felt so useless and confused.

The question continued - what do I do next? After some thought I realised what I needed to do. Keep fighting. I did more research on my Cowden's , talked to people who might understand and developed a new plan with my conditions in mind. A new plan, new doctors, new hope. What I realised is that despite setbacks and "no" from certain people, I'm still my greatest advocate and to never give up.

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I would like to thank Michelle, Georgia, Egbertine, Robert, Adrian, Tanya and Sarah for sharing their experiences with everybody. Together we will continue spreading the word and beating Cowden's.

Till next time...xxx
ST