The worst pain

I hate that my social media has become a cancer diary, and that cancer is all I think about, talk about and feel right now. When I write about Ichthyosis, I am very deliberate to share the social barriers encountered, like discrimination, bullying, exclusion and violence; and I advocate for equal rights, accessibility, representation and inclusion. I’m used to living with a rare severe skin condition, to choosing treatments that give me a quality of life, and to living the very best life I can while still experiencing pain and discrimination.

Leading up to diagnosis, I had a lot of symptoms that didn’t make me feel unwell, but were inconvenient. There was some pain close to surgery but it was manageable. After I had a hysterectomy and the tumours were removed (one was 25 cm!) and I had recovered from surgery, I felt quite well. My worst fear was that chemo would make me feel worse.

It is a week and two days since I’ve had chemo and I am experiencing the most pain I’ve ever felt. My skin is in agony. There’s not a lot that can be done in hospital for my skin so I’m doing all I can to ease it at home. But it’s agony to lshower, to walk, to dress and even to lie in bed. I’ve not been out in days. I am reliant on Adam and friends and family. It’s so hard.

I will talk to the doctors about how the next round of chemo can be tweaked to make it easier on me. Its hard because there is literally no research on how chemo affects ichthyosis – and i guess I’ll be the trailblazer by default.

I’m exhausted and just want to live life like I was doing in the first half of the year – doing ordinary and extraordinary things and my pain levels being low.

The best thing to come out of this shituarion is the kindness of so many friends and strangers. It’s breathtaking. Today a friend who I am connected with on Facebook but haven’t seen for more than 20 years sent me a message saying she lives near me, she’s coming over, how can she help? She helped out, and we had an hour long chat about her incredible family. Thank you for making me feel less alone and so well supported.

Please no advice, horror stories or woo woo in the comments.

If this post, or previous posts, has helped you or made you think, please consider buying me a drink. Thank you.

Image: a Facebook post from me. It reads: “I don’t understand how the treatment for cancer can make people feel worse than the cancer itself. It isn’t fair.”

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