Skip to content
  • Home
  • About
  • Blogs
  • Contact
Search for:

Shrinking the Silence

Sharing a voice on living with rare disease

Categories

Share this:

  • Twitter
  • Facebook

Like this:

Like Loading...

Instagram

About 3 years ago I started my blog, Shrinking the silence, with my Instagram account (@shrinking_the_silence) coming a year or so later. In my first ever post I wrote about about my inspiration for the blog and reflecting over the years I’ve been writing, it’s done that and so much more! Here’s a snippet of what I wrote: “Many rare diseases are not widely talked about or known about, yet there are lots of people who live with them every day. I’ve found that at times because you don’t hear a lot, it can be isolating and there is a lot of silence on information and finding common experiences. So by sharing more, I hope to shrink the silence and have more stories shared and found online….shrinking is also in relation to my hope for my desmoid tumour to continue to shrink!” #desmoidtumor #familialadenomatouspolyposis #raredisease #chronicillness
A crazy and awesome 24 hours in Tokyo on my way home from Hawaii! Japan is a country I love and haven’t been in 5 years. The last time I was here was the year I was diagnosed - I remember being incredibly blocked up, not knowing it was because I had several incredible large pre-cancerous polyps in my rectum. Like I’ve said so many times, it’s amazing how much healthier I feel post-diagnosis and intervention even though I’ve lost so much! #familialadenomatouspolyposis #bowelcancer #nocolonstillrollin
This week I’ve been chasing waterfalls in Hawaii! It’s not easy to love my body post surgery and chemo. My weight and tone have been a lot harder to maintain through a combo of out of whack hormones and no large bowel. I like that here you can see my scars and my less than flat tummy... yet despite it all, I’m happy and in a beautiful place and sometimes that’s enough to forget your insecurities #nocolonstillrollin #chronicillness #postchemo #familialadenomatouspolyposis #desmoidtumor
Feeling fresh like these flowers 💐 Next week it’s back to treatment and so begins appointments for 2020. I can never be sure what’s coming at me with #familialadenomatouspolyposis and a #desmoidtumor, but I’ve made it through 5 years of the unknown and unpredictable so here’s to another! #chronicillness #nevertooyoung #raredisease

Tags

ampulla breakup cancer Chemo chronic illness Desmoid tumour diagnosis empowered Familial adenomatous polyposis family FAP hair hair growth Hair loss Ileostomy invisible illness J-Pouch jpouch nurses oncology pixie cut polyps Proctocolectomy Rare Disease Rare Disease Day relationship Relationships scars surgery travel Wig work young patient

Enter your email address to follow this blog and receive notifications of new posts by email.

Create a website or blog at WordPress.com
%d bloggers like this: