Breathing through the pain

I wouldn’t have predicted that losing my hair would be the brightest part of my week.

But here we are.

This has been one of the hardest weeks of my life – I’ve experienced unprecedented pain levels in my skin. It was a reaction to the chemotherapy.

My hands and feet have been impacted the most, and so it’s been very hard to do anything involving my hands, and even harder to stand, walk or have shoes on. I’ve not been able to do a lot for myself, and the things I have been able to do take extra long as I’m breathing through the pain. Two showers a day took all of my daily energy – I praised myself when I managed to put on socks. 

Every moment has been focused on the pain. It’s been exhausting, and really frightening. It’s had a huge impact on my mental health, too.

Of course, song lyrics hold great meaning for me. There’s a line in Darren Hayes’ Poison Blood that goes “And it’s not that I don’t want to live, it’s the pain that I wish I could kill”. Skin pain permeates so deeply, that’s how I’ve felt on the most painful days. Please know I am safe, I have mental health support in addition to medical care, I am loved, and I am here.

Thankfully the pain is being managed better now, and I’m improving – slowly. I have a new path forward for chemotherapy. And I have a few tools that help me be more mobile and do things more comfortably – a shower chair, fold up wheelchair and lots of cotton gloves and fluffy socks. But it’s going to be a while before my body feels like my level of normal again.

So many people have rallied for me, and I’m very grateful. I know it’s been hard for them to see me this way, and it’s hard for me to show my vulnerability and ask for help.

Yesterday my hair started coming out in big tufts. And I quite like the new look. Of course, dopamine dressing has made me feel a little better, too.

I was able to go out for fun today – not just to the hospital. I’m glad to see the sunshine again.

If my writing has helped you, please consider buying me a drink. Thanks!

Lifeline: 131114

💗

Images: Carly, a woman with a red face and patchy curly hair with bald spots on her scalp. She’s wearing a bright pink tracksuit with “# 1 dreamer” appliquéd in different colours on the top, and a white stripe on the pants. In the third photo she is wearing a red and pink heart print hat and pink and red heart pink fluffy jacket. She has Care Bear brooches on. Her hands are in her pockets and she’s smiling, standing near a green hedge.