Frocktober – in my pyjamas and raising awareness of cancer and Ichthyosis

•FROCKTOBER•

Frock it! I’m in my pyjamas!

When I was told I probably have cancer and if I had a uterectomy, I’d go into early menopause, I googled “Ichthyosis and cancer” and “ichthyosis and menopause”.

I wanted to know the impact of cancer, cancer treatment and menopause on the rare severe skin condition that I was born with.

Every little thing affects it. The weather and temperature, stress, excitement, sickness… it’s equally surprising and unexpected.

But there was no information about it. And sadly, I was brushed off by another woman with ichthyosis when I asked about it in a support group.

It was up to me to advocate for my known condition while navigating a scary new diagnosis and way of life. At times it was exhausting – especially when dealing with government bureaucracy.

I connected my dermatologists and oncologists and when things got really bad for me after my first chemo, they worked together to help alleviate the pain and make me more comfortable.

And I made a concerted effort to be public about my own experience with cancer because I didn’t want someone else with ichthyosis to google “ichthyosis and cancer” as I had, only to find nothing.

(Since talking about my cancer, others with ichthyosis told me privately that they had previously had cancer. But there was nothing public.)

A few months after I was diagnosed, Sanna, a woman with ichthyosis in Finland contacted me, telling me she was diagnosed with breast cancer. A different type to me, but she had the same treatment as me. It’s been good to connect, share experiences and cheer each other on. Now we are both cancer free, and we’ve become pretty close friends.

When my treatment ended, my medical oncologist sent me a draft medical journal paper that she and the rest of my medical team worked on. She added me as a contributor – and I requested that photos of my face were used, alongside the medical photos of my skin at its worst. This is to humanise me so I’m not just a medical specimen. The paper is yet to be accepted into a journal, but when it is, I’ll be sure to share it.

To donate to my Frocktober, visit my fundraising page.

Thank you.

Wearing Peter Alexander Hello Kitty pyjamas.

Images: Carly in Hello Kitty pyjamas on a bed.