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Shrinking the Silence

Sharing a voice on living with rare disease

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It always makes me so happy seeing beautiful sunsets from my balcony - I can forget about anything worrying me. As it’s winter in Australia, I rarely get to see them because it’s dark by the time I leave work. But not today! 🌅🌅 #selfcare #mindfullness #chronicillness
This is me - claiming my identity back in my third year as an oncology patient. In June 2016, I met my oncologist for the first time and had no idea the mountain ahead of me. A month later my abdominal desmoid tumour had tripled in size and was running out of space to grow, and was putting lots of pressure on nearby organs. Looking back now, things were really bad - my fantastic oncologist was completely honest with me but managed to keep me calm and focused on the road ahead - whilst at the same time learning himself about how to treat desmoids with the limited treatment options. That bumpy road included chemo-induced hair loss, adapting to side effects of treatment and hormone deficiency’s from treatment - basically it wasn’t pretty. Add on top of that the end of a long-term relationship... I didn’t know who I was anymore. I could never imagine how much I would struggle with my self image, but glad that it opened me up to being vulnerable, rediscovering what makes me happy and coming to terms I will never be the same person I was before chemo and FAP... but i can learn to love the new me and celebrate when parts of me come back #familialadenomatouspolyposis #oncologistsarethebest #chemo #hairafterchemo #desmoidtumor
June is bowel cancer awareness month in Australia, and 3-9 June is Never Too Young week to raise awareness of the rising cases in people under 50. Living with #familialadenomatouspolyposis for 5 years now, I’ve been through a lot of tough medical procedures and been challenged on so many levels.... I still think back and am most traumatised by how long it took for my symptoms to be listened to, how unwell I felt with no solution for years, and how close I came to not being able to be treated and have the life I have now. I’m so grateful there is a week dedicated to young-onset bowel cancer and I hope patients and the health system can work together to better listen, diagnose and treat young people with the symptoms they present with. Thank you @bowelcanceraustralia! ✨⭐️ #bowelcancerawarenessmonth #never2young #earlydiagnosis
The ureteric stents are back in place but my left kidney didn’t like being dealt with so I now call it Kidney Kardashian for sass levels. Hoping my body accepts the stents this time and doesn’t give me a million UTIs 🤞🏻#desmoidtumor #uretericstent #kidneyproblems #familialadenomatouspolyposis

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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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