Recently I got some news that was not so great about new complications with my FAP condition, that has challenged my positivity and made me once again come face-to-face with the devastating and unfair disease that FAP is. Continue reading
Tag: polyps
Scan time! This is the first scan in a while that I really have no idea what to expect and for the most part I’m ok with that. I’ve been living well with a desmoid tumour for three years now and have accepted that it will most likely be with me for life - with all of its “I do what I want” attitude (strangely similar to my personality 😂) Yet I am pretty sure that I will have a hard time accepting it if this scan shows it has grown - the mind is a funny thing. Until I get the results I will just do what the CT scan machine tells me.... breathe in and hold your breath... breathe 🧜🏼♀️ #desmoidtumor #familialadenomatouspolyposis #chronicillness #invisibleillness #scanxiety
Yesterday I started a new decade, my 30s! My twenties were bitter sweet with my life changing significantly with my #familialadenomatouspolyposis and #desmoidtumor diagnosis from 25 onwards. But I gained so much more in my friendships and support of those around me and have even made new friends 💕💕 got a good feeling about my thirties! Photo credit and awesome surprise organisation goes to @vicff4129
11/9/2015... 4 years ago, yet I remember it like it was yesterday. Getting to hospital at 6am with the most butterflies I’ve ever had in my stomach... knowing that I was going in for the biggest surgery of my life.
A lot has happened in 4 years since the first few photos. I’ve had a stoma, had it reversed and learnt my new normal with a j pouch... I’ve had a desmoid tumour grow aggressively and cause multiple small bowel blockages, but then seen the tumour stabalise and shrink... I’ve lost relationships, but maintained and gained so many more... I’ve moved jobs... But most importantly, I’ve lived the best I can and shared my story. I’ve stopped taking life for granted because ever since I was diagnosed with Familial Adenomatous Polyposis it’s never been a certainty. #familialadenomatouspolyposis #bowelcancer #never2young #colorectalsurgery #nocolonstillrollin #desmoidtumor #jpouchlife #jpouch
Me and my wombat friends. Animals really are the best therapy 💕✨ #chronicillness #weekendrecharge
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
