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
  • Google

Like this:

Like Loading...

Instagram

December hair: this time last year I wrote a blog that 2018 would be the year of my hair and the bob. I didn’t believe it at all, I was certain my hair would never grow back to how it was. Here I am, 12 months later and with a bob and my hair looking healthier than pre chemo days 🌟 #postchemohair #desmoidtumor
A specialised drawing for when you don’t match the standard diagram of the bowel 😂 Not the best news that there are polyps at the join of my jpouch and rectum, but all part of the regular screening process and most importantly I can make the polyp removal a 2019 problem ✔️✔️ #familialadenomatouspolyposis #jpouch #nocolonstillrollin
This old note I found on my phone really puts into perspective the incredible response my tumour had in 2017 and has continued to have in 2018. My oncologist had asked me to measure my waist every couple of weeks to see progress without doing too many scans. Hard to imagine I had such a large mass in me that I could lose 13 cms off my waist in 9 months. The nature of these beasts though is that they are unpredictable and could start growing again at anytime. Until that happens, I look at things like this and feel so incredibly lucky #livingwithcancer #raredisease #rarediseaseawareness #desmoidtumor
Sydney summer ☀️one more treatment and one more procedure then 2018 is over medically ✔️✔️

Tags

ampulla breakup cancer Chemo chronic illness Desmoid tumour 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: