Shrinking the Silence

Sharing a voice on living with rare disease

Why I smile — July 3, 2017

Why I smile

I smile to put on a brave face.

I smile to distract myself from my worst fears.

I smile to feel normality.

I smile because I have supportive family and friends.

I smile to show I’m more than my illness.

I smile because I have a future.

I smile because there is hope.

Catching up on my thoughts — June 8, 2017

Catching up on my thoughts

I didn’t realise there were so many things and emotions I’d built up over the two years since finding out I had FAP until now, and a lot of my blog posts so far have been catching up on this time of my life that has been crazy and overwhelming at times.

Since sitting down to write this blog I’ve actually realised that 2017 has been a good year so far. A good year for me right now probably doesn’t look like the typical 27-year old’s good year, but given what was thrown at me in 2015-2016 I’ll take it. Continue reading

Learning to trust — May 30, 2017
To all the nurses who have cared for me, thank you! — May 12, 2017
When there’s no end in sight — April 19, 2017
My scars — April 4, 2017
Starting a treatment with no name — March 27, 2017
The overwhelming experience of losing my hair — March 19, 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

You’re making poor choices for a 22 year old — March 10, 2017