Shrinking the Silence

Sharing a voice on living with rare disease

Feeling empowered as a young patient — April 12, 2018

Feeling empowered as a young patient

I often write and think about how unfair it is to face such health challenges in my 20s when I should be at the prime of my life. It was also my young age that almost didn’t get me diagnosed in time to have preventative surgery. I was too young to be considered to have cancer, instead I was just not exercising enough and needed to improve my diet.

On the flip side, I feel that my age has really contributed to me getting such great care and having doctors, nurses, allied health, secretarys, admin staff go the extra mile to make my life easier and digging for treatment options that factor in how much life I have ahead of me.

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Going through a breakup with chronic illness — October 25, 2017
The four things that keep me going — March 15, 2017

The four things that keep me going

The last couple of months have been hard for me. I think last year I was in the groove of things, I had recovered really well from my bowel surgeries and even when I got the news that my desmoid tumour had come back, I was feeling positive and treatment didn’t seem to daunting. It soon started growing really aggressively and for a few months it was pretty scary and I did wonder if it would ever stop growing. Continue reading