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Shrinking the Silence

Sharing a voice on living with rare disease

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A shout out to my amazing body. This time four years ago I was a few weeks away from having major surgery and as much as I read up on recovery, I was no where near prepared for the long long road ahead over the next year. Reading my diary entries again, I can’t imagine my current self being strong enough to get through that. Many of the goals I set myself were simply to have enough energy in a day to get out and about for half an hour. I remember that on the many days when I couldn’t, I felt trapped and powerless as an otherwise healthy 25 year old. But at the end of the day this surgery saved me from cancer and gave me a future which I’m now living. #familialadenomatouspolyposis #bowelcancer #never2young #nocolonstillrollin #surgeryrecovery #jpouch
Thanks @bowelcanceraustralia for including me in this fantastic resource for young onset bowel cancer (available on their website). I certainly faced many of the challenges explained. And a reminder for those over 50 as well, take the screening test - bowel cancer is treatable when found early. I’m proof of that, because I had my colonoscopy at the right time I narrowly avoided a cancer diagnosis. Only difference is due to my age this was completely due to luck and a LOT of self advocating #bowelcancerawareness #never2young #cancersupport #cancerscreening #nocolonstillrollin #familialadenomatouspolyposis
I wrote a new blog about reclaiming hope, as chemo finally leaves my body.. long after stopping it. Link in bio #desmoidtumor #familialadenomatouspolyposis #chemo #lifeafterchemo #never2young
Today was my last appointment with my Oncologist before he moves to America. In one of my first appointments 3 years ago he reminded me I should plan my treatment around my life, not the other way around. It’s a hard mindset to be in with cancer and chronic illness, but that’s where he worked his magic by listening to me, letting me have some control over decisions and pushing to get me off chemo and on to the experimental treatment I’m on now which has next to no side effects. It’s very sad to see him go, but I know I’m in good hands with my new oncologist and the amazing nurses at the cancer clinic. #desmoidtumor #oncologistappreciation #raredisease

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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

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