‘Disability & Breast Cancer’ – the new chapter in ‘The Complete Guide to Breast Cancer.’

It all started with a simple exchange over social media. If only all co-authorships were as easy as this!

Alt Text: The back cover of a book called ‘The Complete Guide to Breast Cancer.’ There is one line of text highlighted and it says ‘A new chapter on disability and breast cancer.’

I’ll start with Happy Breast Cancer Awareness Month, whether you partake or not. Being diagnosed with Breast Cancer is a far from happy event, and Breast Cancer isn’t pink or fluffy, it’s brutal, cruel and relentless, but nevertheless, I use Pink October to raise awareness. This year I’m one of the faces of Breast Cancer Now’s ‘Wear It Pink’ & I’ve fundraised over £500 for them (thank you to all of my donors).
My ‘Wear It Pink’ story can be found here:

https://breastcancernow.org/wear-it-pink/about-wear-it-pink/meet-our-supporters/suzannes-story/

Those of you who follow me across all of my social media will know that I co-authored a chapter on ‘Disability & Breast Cancer’ for ‘The Complete Guide to Breast Cancer’ by Dr Liz O’Riordan and Professor Trisha Greenhalgh. Yes THAT Breast Cancer book. Basically the book that Breast Cancer patients, their family, friends and colleagues, Breast Cancer organisations and the medical profession refer to.

My involvement did honestly start with a simple exchange of messages over ‘X.’ Dr Liz announced that Professor Trisha and her were updating the book & what was currently missing. I tweeted back ‘A chapter on Breast cancer in disabled people – shall I write it for you?’ and to my surprise, Liz tweeted back ‘yes!’ and then she private messaged me. The rest is history as they say.

This is the second book that I’ve contributed to this year & my pieces come from having the relevant lived experience & understanding the access requirements of other disabled people through the knowledge that I’ve built up through my job. My blog has really helped me to process this weird & wonderful new life living with a cancer diagnosis as well as connecting with a whole lot of new people affected by cancer. Now the blog content is being published in other areas where it can help a wider group of people.

The chapter covers the communication issues that can often occur when disabled people seek treatment – for example, when medical professionals talk to the person with the disabled person, not the disabled person directly, you know, the “Does he talk sugar?” scenario.

Alt Text: An excerpt from the guide’s text. The title is highlighted with a circle in black pen “Breast Cancer in people who identify as disabled.” The other highlighted section is an example of how disabled people can be spoken over & when medics assume that disabled people can’t understand what they’re being told. Part of the text that’s been highlighted with a black circle says, ‘…if this happens to you, you should say, “I’m disabled, not stupid.”’

The chapter also encourages you to plan ahead, so doing an access visit to treatment facilities could be beneficial & getting support from PALS (the Patient Advice and Liaison Service that most hospitals have). It prepares you for mammograms, radiotherapy sessions & other scans. It discusses surgery & aftercare, including making sure you have care cover arranged for when you return home. It talks about ‘Survivorship’ & moving forward with your life. It gives some ideas of additional questions that you might need to ask of your medical team because you’re disabled. Over the next week or so, I’ll be reading a question a day over my social media as part of Breast Awareness Month.

The closing paragraph of this book states that whilst it might not be easy having treatment for Breast Cancer when you’re disabled, you have every right to be treated the same & be offered all the options that a non-disabled person takes for granted.
When I was going through my treatment, I read this guide, in fact, I’ve reviewed it in a previous blog. I really wished I’d had more tailored information as a disabled person. I needed to be ‘seen’ within this process. I needed to connect with other people. I had a right to equity in treatment.

I truly hope you never need this book, but if you do, you can get it from here:

Over the coming months I want to be able to reach as many disabled people as I can – reviews, features, articles, contacting disability groups, organisations & charities, & so on. Please get in contact through the blog if you can help me in any way possible.

Alt Text: Another excerpt from the guide. This is from the Acknowledgements section & ‘Suzanne Bull’ is highlighted in a black circle.