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Shrinking the Silence

Sharing a voice on living with rare disease

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Tonight’s stormy sky is an accurate representation of life with #chronicillness and #familialadenomatouspolyposis. It’s all about finding the glimpses of light and the good in life at times when it should be impossible. Somehow I seem to see the good more often since getting sick #randomskyanalogies #selfcare #chronicallyliving
February hair: excited about a good hair day and how much my hair has grown these last few months #postchemohair #chemo #desmoidtumor
Holidaying with some of my oldest friends this week and you could hardly tell I had surgery 2 weeks ago to remove polyps. Laughter, sun and beautiful turquoise water is the best recovery 👊 #familialadenomatouspolyposis #nocolonstillrollin #invisibleillness #selfcare
Back into it for 2019 on my no name drug! Over a month off treatment has done me amazingly mentally, I have hopes that this year if my tumour stays stable and shrinking that I can phase off treatment and see what happens. We will see... 🤞🏻#chemo #desmoidtumor #raredisease #drugtrial

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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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