This World Cancer Day, Let's Involve BME People In The Wider Conversation

Traumatised by our ordeals, women are seriously suffering – not just during treatment but months and years after
|
Me baring my double mastectomy scars for the Black Women Rising Cancer Exhibition
Noam Friedman
Me baring my double mastectomy scars for the Black Women Rising Cancer Exhibition

If someone would have told me years ago that there was a chance I’d be diagnosed with stage 3 breast cancer at the age of 30 years old, I shamelessly admit I would have been the first to start laughing. Breast cancer at 30, surely that’s not possible? That’s way too young? That type of stuff only happens on TV right?

Like most people my age I liked a drink and had an occasional cheeky cigarette from time to time but generally I was a fit, active, busy, happy, healthy social butterfly, living out the best year of my life so far. I certainly wasn’t holding any prisoners – holidays, parties, dinners and a new sense of confidence and direction were serving me well so far. It had been my year to start a fresh after going through some serious difficult teenage years continuing into most of my 20s – as a child sexual abuse victim, regular depression and anxiety sufferer and more recently nursing my mum through her second diagnosis of cancer it was meant to be my time to live.

But unfortunately for me life had other plans, and on 20 October 2016 when I popped to my local hospital to get the results of a biopsy taken from a lump on my breast the week before I was told the worst news I had ever received in my life time – the breast lump that thought was just a cyst was actually cancer. Stage 3 breast cancer.

“How much more can a person take, why does life keep throwing these things at you” were the words of my older sister through tears, the day I returned home from the hospital after my diagnosis. For the first time in my life, I was speechless. In all honesty, my initial thoughts were that after all I had been through this was just one battle I couldn’t fight, it seemed too tough even by my standards. Nevertheless, in the weeks and months that followed my diagnosis, although horrendous, I did fight. I actually fought the hardest battle I had ever fought and got through it – the shock, anxiety, panic attacks, sleepless nights, Herceptin injections, six months of chemo, three operations, removal of both my breasts, , the lot. I did it and, on 29 June 2017, I got the all clear.

Amazing news, right? It was the best news, news that a year earlier I could have only dreamed of receiving. But I just didn’t feel ok, and the realisation that my mental health had taken a huge battering because of my cancer ordeal came down on me like a ton of bricks.

So, I decided to go back to the hospital for answers – was there anyone I could speak to about this? Was I normal to feel this way? but my questions fell on death ears as it soon became apparent the emotional support I was promised at the start of my treatment – although very much needed now, was practically non-existent – so I began blogging about my cancer experiences online in order to reach and connect with other members of the cancer community. I was left overwhelmed by the huge outpouring of admiration from fellow cancer patients, particularly BME females like myself echoing my experiences with the inadequate emotional support and referral services offered by the hospitals they were being treated at, and the general lack of acknowledgment and disregard for their individual as well as cultural needs.

Traumatised by their ordeals, most women I spoke to were seriously suffering- not just during treatment but many months, even years after. I soon became an ear for many of these women, and was presented with stories from women who had been banished from their families and communities because of their cancer diagnosis, who were told cancer wasn’t a black disease, women who had family members disappear from their lives because they were too scared that they may catch it, women who had been told their cancer was karma for bad things they had done in the past, many women who had lost their hair through treatment and didn’t receive their free wig they were entitled to because their hospital had run out of the wigs in the “ethnic section” and, more shockingly, women who were advised against vital lifesaving cancer drugs because they were ungodly. The judgement and stress put on these women had led to severe depression, permanent hair loss and even suicidal thoughts to name a few. Where was the targeted help for these women?

After a deeper look in to this, further findings suggest the NHS know this is an issue, according to a NHS publication, published on their site in 2017, they have evidence to suggest that these cultural stigmas, taboos and general myths about cancer amongst various BME communities stops individuals from talking about their experiences – often completing their treatment without giving the vital feedback the NHS, so desperately need in order to successfully cater for the needs of these individuals emotionally and physically. Two quotes from that article include:

BME patients are less likely to give feedback about treatment, making it difficult for the NHS to identify areas where care can be improved”- Simon Stevens- NHS England Chief Executive
The NHS needs to know more about the experience of black and minority ethnic people who have cancer treatment in order to ensure services understand their needs”- Lord Victor Adebowale- NHS England board member

Armed with these findings I knew change had to come. How can we expect these services to cater for us if they don’t know enough about our experiences?

In March 2018, I set up the Leanne Pero Foundation to house various cancer initiatives aimed at mentally supporting the cancer community during and after treatment. My first project, Black Women Rising, was born a few weeks later – a free, safe, friendly open access meet-up group aimed at getting more BME female cancer patients connecting and talking about our cancer experiences, to aid our recovery process, spread some much-needed cancer awareness amongst our communities and educate some of the UK’s leading cancer care organisations including the NHS about our needs. My first group was oversubscribed and the mission was clear – cancer needed to become part of the wider conversations within our BME communities.

What’s the day-to-day mental reality battle for someone living with a cancer diagnosis during and post-treatment? Well if there anything like myself and many of the ladies I am blessed to work with, huge victories for us consist of getting through our days successfully reassuring ourselves that our cancer is NOT spreading any further than where it is or is NOT returning and seriously believing we are NOT going to die anytime soon, not to mention getting five or six hours of uninterrupted sleep without waking up in cold sweats dreaming about hearing bad news in smelly hospital consultation rooms.

We must face up to the likelihood that cancer is something that will affect us all either directly or indirectly at some point in our life time. So, let’s use this world cancer day to start the necessary conversations about cancer awareness within our households, because cancer doesn’t exclude regardless of race.

Before You Go