I’ve had about 8 eye operations, 2 bowel surgeries and 2 chemo treatments, but the most traumatic experience so far has been losing my hair as a result of chemo to treat my desmoid tumour. Continue reading
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
