Breast screening, cancer, and Black women
Artwork by Richard Kahwagi. Photos by Pawel Czerwinski and Diana Simumpande on Unsplash
Black women from Caribbean and African backgrounds are up to two times more likely to receive a late-stage diagnosis for some cancers than white British women in England. – The bmj.com Published 27 January 2023.
My name is Helena, I am Mixed with a White Irish Mom and a Black Caribbean Dad. My nickname is ‘Noodles’ purely down to my spiral curly afro hair.
I would describe the space I grew up in with my mom and 2 older brothers as very ‘white’. The city and area I lived in, my school, teachers, friends, and colleagues at work.
If it wasn’t physical fights at school, it was my clever reversal of the attempted verbal degradation from anyone that wanted to challenge my ethnicity. My quick wit saw me shielding attacks from discriminatory ogres on a regular basis. I experienced overt racism, ranging from mild to aggressive and I was used to being on the receiving end of endless microaggressions, covert racism, misogynoir, and ignorance. So much so, that it blended seamlessly into my everyday life.
I’m a proud mother of 2 and as someone who works in education, the summer holidays are that time of year to look forward to! School’s out, Sun’s out, the B-B-Q gets dusted off, and for me, I can stop work and finally enjoy time with my own children.
It’s August 2014 and a Big 9th Birthday Party was planned for our son and his friends at a local bowling alley. I’d done all the usual checks: Minecraft Cake, Matching colour Party Bags, Party Food, Decorations and Presents. Everything was sorted and ready to go.
Just one small thing I needed to do first, and that was to head to a hospital appointment to find out what the deal was with the lump I’d found in my right breast a couple of weeks before.
At the time, aged 36, I was working across the country as the Head Trainer for a leading fitness company. I was in the best shape of my life and with abs for the 1st time since I was in my 20s, and I was excited to be doing a BodyBuilding Competition later that year.
But here I was on a bright summer’s day, the day of my Son’s Birthday Party, sitting in a clinical boxroom with white walls and ugly blue speckled lino flooring. A cold and uninviting leatherette examination table was placed across the room where the Breast Cancer nurse half perched herself and attempted small talk “Haven’t you got really lovely hair…” until the surgeon arrived holding a thin cardboard file and a bunch of leaflets.
The surgeon sat in front of me, and after a brief intro he quickly got to the point and said “unfortunately, you do have breast cancer”. At this point it may surprise you that I wasn’t scared, I wasn’t worried or full of panic. I replied swiftly “OK, so when can we get the fucker out?” when his answer was that ‘it wasn’t quite that simple’, the reality began to sink in.
I should probably add here, I knew what the result was going to be. When I scratched my boob and felt the lump, I knew immediately that it was Cancer. After all an egg sized lump at 4.5cm x 2.5cm wasn’t likely to be much else. Plus, the biopsy lady took double the number of samples from my breast that she said was needed and left the room halfway through to take a closer look at them, so I think that pretty much confirmed it.
The words Surgery, Mastectomy and Radiotherapy were mentioned. I asked questions like: “Do you have to cut my boob off”, “Am I going to die?” to which the answers were that they couldn’t safely allow me to keep my boob and that death was an unlikely outcome.
I remembered hearing the word “Chemotherapy” in there somewhere and I immediately pictured myself as that horrendous vampiric creature, Nosferatu in the old black and white movie I had seen once as a kid. Grey, dusty skin with dark, lifeless eyes and sunken cheeks and of course no hair…wait! NO HAIR! Shit!
It was only at that point that tears began to flood my eyes and blur the room. I never really thought about what it would mean to lose my hair. I mean, everyone who has chemo has this problem right? And hey, at least I was getting a £100 voucher towards the cost of a wig! *thumbs up emoji*
“Haven't you got lovely hair”, I remembered what the nurse had said that day as I stood looking at a display of wigs at my first appointment with the lady who would be helping me order one. The large UK Charity service offered a range of colours, styles, and lengths. All could be cut and styled to fit my ‘desired look’, which was great if ‘European’ was the look I was going for. Not even one was suitable for me as a woman of colour.
Picture me, confused at this point, as I’ve already sent her pictures of my hair pre-chemo and links to a range of wigs that would be a perfect match to my natural hair.
After many messages rejecting the links for wigs I had sent that would be perfect for me and explaining that they can only order from a ‘registered/authorised’ wig company, I finally received a text, weeks later, to tell me she had found ‘the perfect wig’! I headed to the hospital the next day to try it on.
My head flicks back with the wig secured and as I looked in the mirror, I saw the most ridiculous thing balanced on top of my head. I adjusted it a little, hoping that might help, it DIDN’T. My only words were “WHAT THE FUCKING FUCK!”
It was as if the Dukes of Hazard and the 118 boys had angry sex and spawned a Dynasty mullet from the 1980s. Absent of curl pattern, colour correctness and shape I burst into laughter, later calling the wig lady who must have left the wrong wig for me, right? Wrong!
“It was the closest thing I could find, I think it’s actually a good match”
“Well, don’t forget we can cut it and style it to a shape that’s more like your natural hair”
“It’s a nice opportunity for you to try something new”
And then came the gut-punch:
“Most ‘coloured ladies’ I’ve got wigs for like to have their hair straight”
Are you kidding me!
In my best attempt to remain calm I explained that cancer is not an ‘Opportunity’ to try something different, I didn’t ask for something different and by the way, I was NOT ‘coloured’ and that this is NOT a term that can be used, ever!
She wasn’t available to meet me that day to try the wig, which may have been a blessing for her. I’m certain she would have ended up, up the wall by her neck with said wig shoved snugly into her mouth!
11 weeks later, I was able to force the large UK Cancer charity to give me the money to buy my own wig, which I did, from eBay and it arrived within a week!
But I couldn’t help but question, WHY? Why when I was already fighting for my life, fighting with severe mental health trauma and PTSD, did I have to fight to be seen and acknowledged and for the right to access something that, if I was white, would have been immediately available?
Make it make sense!
I was convinced it was a geographical issue until I met women who have faced the same problem. It’s not a geographical issue, it’s an ‘institutional racism’ issue. And it wasn’t just the wig. I had to explain to the Semi-Permanent tattooist why I needed to have brown nipples instead of the pink she wanted to give me!
As proven by ‘Black Women Rising’s ‘100 Women Survey’, *41% of women weren’t even offered a free wig, *78% reported that there was no suitable wig option for them, just like me, and *74% of the women who use softie, prosthetic breast or nipple were not offered one to match their skin tone!
It's all about representation. Representation gives power. It gives a clear sense of belonging to those that see people who look like them. It results in broad and far-reaching inclusivity and contributes towards the eradication of inequality.
I’m fortunate to have caught my HER2+ ER- Breast Cancer at Stage 1, both in 2014 and again in 2017.
But many people within our community see cancer as a white problem, because we only ever see adverts and booklets with white faces. They don’t have something to relate to that may prompt them to prioritise regular checking and symptoms go unnoticed.
I look back to the times, flicking through the many leaflets I was given after my 1st and 2nd (2017) breast cancer diagnosis, and realising I felt numb. Emotionless. Not because I was in shock or denial, but because I could not connect on any level with a single person, I saw in any of the pages. I was handed leaflet after leaflet sympathising, celebrating, and supporting people that didn't look like me, and the more invisible I felt, the more it hurt.
A whopping 96% of respondents to the *Black Women Rising’s ‘100 Women Survey’ reported that they do not see women of colour represented enough in the media talking about breast cancer. And this MUST change NOW if we are to see a reduction in the number of Black Women being diagnosed in late stages of cancer in the UK.
As a young, black (mixed race) woman at her peak in physical fitness, I had absolutely fuck all in common with White, 78-year-old Mildred and her blue-bloody-rinse!