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Shrinking the Silence

Sharing a voice on living with rare disease

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Some of the best advice I’ve been given for my #mentalhealth is to focus on what’s happening right now, but it’s advice I find hard to follow. The nature of the disease I have is that for the rest of my life I’ll have disease growing in me with the potential to turn cancerous - it’s hard for the mind not to wander. Earlier this week though, I felt relief for the first time since I was diagnosed in 2014. At this moment, all of my health concerns are stable. A few years ago I never thought I’d have an opportunity to say that. This moment may not last longer than a month, or could stay this way for a while - but for this moment I am happy that my health is going so well right now. #familialadenomatouspolyposis #desmoidtumor #liveinthemoment #chronicillness
Life’s given me lots of 🍋 Luckily these ones are just handpicked from my mum and dads lemon tree. #chronicillness #whenlifegivesyoulemons #selfcare
September hair: the month of legit ponytail and wavy bangs 👏 #chemo #postchemohair #chemohairgrowth #pixietobob
If only I could live everyday as free as a whale diving around the water 🐳 🐳

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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 nurses oncology pixie cut polyps Proctocolectomy Rare Disease Rare Disease Day relationship Relationships scars surgery travel Wig work young patient

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