I was invited by Breast Cancer Now to take over their Instagram Stories for #BreastCancerAwarenessMonth2022
Alt Text: A screen shot of an Instagram page. A white lady with long brown/blond hair, wearing round pink/brown glasses, a black top, large silver hoop earrings and a silver chain, leans against pink wallpaper with skulls & butterflies on it. She is smiling. The main text in black on a white background says – ‘Breast Cancer Now, 55m, Welcome to Suzanne Bull’s Instagram Takeover.’
During the summer, I was contacted by Breast Cancer Now to takeover their Instagram account & describe what it’s like to be diagnosed with breast cancer when you’re already disabled. There’s a link to it here but you can also find it on @BreastCancerNow Instagram account.
https://www.instagram.com/s/aGlnaGxpZ2h0OjE4MzIzNzg5OTg5MDA2OTY0?igshid=YmMyMTA2M2Y=
Originally my IG Stories Takeover was supposed to come out in the summer. However, I was struggling with my pain levels due to my 6-monthly Zometa infusion & trying to save my energy for returning to festivals. I had also underestimated how long it would take me to think of what I wanted to present, how to present it, & then to storyboard & script it. Not only did I want to make it authentic to my lived experience, but I also wanted to make it accessible. I found out that Instagram Stories isn’t a completely inclusive format but I’m hoping in the future that I can work out a way putting my story into a post with all the alt text provided in the photos. The video clips are captioned, & where I could, I self-described on film (I should say, in truth, when I remembered as my brain fog is terrible at the moment). I want to say thanks to my colleagues in the Comms team at Attitude is Everything who gave me lots of guidance on how to make the film clips accessible, & also Breast Cancer Now who uploaded all the captions, film & pictures for me.
As time went on & my piece still wasn’t finished, I suggested to Breast Cancer Now that my IG Story Takeover could go out during October, which is #BreastCancerAwarenessMonth – they agreed. It went out on 11th October.
I could have done a “live” blog where people send their questions in & I answer them, but I really wasn’t confident about doing a live Q & A. I was scared of getting a question that I couldn’t answer! I also wanted to control the dialogue & the way in which my story was told because I had never seen a story from a disabled person with a breast cancer diagnosis. It’s so important that disabled people tell their own stories because we’re still so misrepresented in society.
Over the course of a couple of months, I planned, scripted & filmed the story. Yes, I do discuss challenging times, especially during the early months when I was diagnosed & then I had my operation cancelled because of COVID-19 spreading across the UK. I also describe many complex decisions, like having a lumpectomy instead of a mastectomy, & how I accessed radiotherapy as a wheelchair user – subjects all previously covered in my blog. But additionally, I didn’t want to make it seem like every moment was really horrible. I had some fun times, such reinventing myself as an artist & taking part in Grayson’s Art Club (all thanks to Maggie’s West London’s Expressive Art Group) & joining The Invisible Café’s Writing for Wellbeing sessions.
I wanted to demonstrate that I was active & enjoying my life, so there are pieces about yoga & swimming. But at the same time, I wanted to make the point that it’s not easy exercising as a wheelchair user, & I’d got support to plan out an exercise routine. The final take happens at Elton John’s gig at British Summer Time at Hyde Park, London.
I had a lot of fun making the IG Stories Takeover. Now I reflect on it, it was another way of helping me process what I’d been through.
I learnt new skills. Through the planning, I began to shape how I present myself & my story. There are many breast cancer stories out there, but I want to tell a breast cancer story from a diverse perspective, because I only know one other person with my disability & who lives with a breast cancer diagnosis (she’s been utterly brilliant throughout my ordeal). I learnt how to make IG Stories as accessible as possible, & it’s given me ideas about how to use other digital platforms that allow a greater level of accessibility.
I got some great feedback on my own social media – one of my twitter followers said that she was glad that a large charitable organisation had backed me because it was important for marginalised people who have breast cancer to be given a voice. That made me quite emotional. Breast Cancer Now also said that they’d had a lot of positive feedback because of the different perspective, but they also got a personal message from one of my oldest friends who said that my mum would be so proud of me. That made me cry. In many ways. I’m telling her story as well as my own, because she never got the chance to.
I want to finish by saying a MASSIVE THANK YOU to everyone who commented & who sent messages of encouragement & love to me & to Breast Cancer Now, to my newly-found Twitter #CancerBuddies, to my friends & my boyfriend Stephane who gave their permission to be part of the story & to my PA’s who supported me at the filming locations.
And I think Breast Cancer Now are wonderful. Their social media team encouraged & guided me but never pressurised me with deadlines or anything like that. They took accessibility on board, & they were so enthusiastic. But most importantly, they let me tell my story in the way that I wanted to. I can’t thank them enough.
You can find them on www.breastcancernow.org
The Musings of Spu 