Being diagnosed with a rare cancer has challenged my ideas about cancer. I assumed cancer meant you looked sick. But one of the hardest things for me has been people telling me I don’t look sick, like that lessens the burden or means it can’t be too bad. Of course, the reality is different.
Most obviously, I have my hair. My chemo treatment doesn’t typically cause hair loss. Side effects like sensitivity to cold, changes in taste, chemo-brain, fatigue and nausea you can’t see. Similarly there are no outward signs of the cancer itself but my belly full of tumours causes significant pain and discomfort.
Another difficulty with rare cancer is that you often have to convince people it’s a thing. Most assume treatment is easy – remove the appendix. In reality I face an 8-12 hour surgery that will leave an impressive 16-inch scar down my middle (minus a few ‘non-essential’ organs).
Support groups are also hard to come by when you have a one in a million cancer. There is no appendix cancer booklet! Thankfully Facebook provides a way for sufferers to share our experiences of symptoms, treatments, and feel a little less alone.
Naomi Evans is a Newcastle-based writer and editor.
Follow her story each week at newidea.com.au, and you can check out more at wordsandwhatnots.com.au.
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