It was spring 2022, and I was undergoing radiotherapy for breast cancer. What no one told me was how challenging it would be. The radiotherapy machine targets cancerous cells, and tattoo markings are used to pinpoint the precise area. But for me, a Black woman, the tattoo markings were virtually invisible on my dark skin tone. Every radiotherapy appointment, instead of taking the expected five minutes, dragged on for 20 minutes or more due to the difficulty in locating the markings. This was just one example of the ineptitude I faced throughout my treatment – an ineptitude that could have been avoided if healthcare professionals had better understanding and training in treating Black patients.
It all started in June 2021 when I discovered a lump in my breast during a playful tussle with my two young sons. Initially, I dismissed it, but a nagging voice in the back of my mind urged me to get it checked. My GP referred me to the hospital, and a consultant at the rapid diagnostic center immediately identified the lump as malignant. That day, I underwent a mammogram, ultrasound, and biopsy, and the devastating news came: I had breast cancer. My mind raced to my children, my sole focus. The thought of leaving them behind was unbearable, and I told them the news immediately. My seven-year-old, in his innocence, asked the inevitable question, “Are you going to die, Mummy?” My answer was resolute: “No, Mummy has no intention of dying.” My children became my motivation to fight, to keep going.
The symptoms of breast cancer are often overlooked, so it’s important to be aware of them. These include:
* A lump in your breast, armpit or chest
* Nipple discharge
* A change in the texture of the skin of your breast, such as dimpling
* Red skin on your breast
* Inverted nipple
* Rash on the nipple
* Pain in your breast or armpit that does not go away
I underwent surgery to remove the tumor in July 2021. However, a second surgery was needed because cancerous cells remained. Despite learning that most patients undergo chemotherapy prior to a second surgery, my oncologist was hesitant to recommend it. I had to research and advocate for this crucial part of my treatment myself. Chemotherapy was incredibly arduous, but I held onto the hope of a brighter future. One of the many side effects I experienced was neuropathy, causing numbness and tingling in my fingers and toes. This debilitating condition was not mentioned in any of the information leaflets, and I struggled to find any data about its prevalence among ethnic minority patients. One American study I discovered found that neuropathy was far more common in African American patients. The lack of awareness and information regarding this issue was disheartening.
During chemotherapy, I felt incredibly isolated. Seeing no one who looked like me in the leaflets, I longed for a support group, a community I could relate to. That’s when I found Black Women Rising, a cancer support project that became my lifeline. I connected with other Black women going through similar experiences, and I realized I wasn’t alone. My journey sparked a question in me: “Does something in the system need changing?”
Black Women Rising is a flagship program of The Leanne Pero Foundation, a UK charity offering essential support and guidance to people of color diagnosed with cancer. You can find more information about them online.
In January 2022, I had my second surgery and started radiotherapy in April. And once again, I encountered difficulties with the tattoo markers. A Black nurse, asked if it was truly that difficult to find the markings on my skin, simply replied, “No, it’s not, but there isn’t really any training on how to deal with different skin pigmentations.” This revelation left me feeling deeply disappointed. If someone had simply explained this to me, I would have understood. Perhaps, a larger marker could have been used. All I wanted was for extra precautions to be taken to save my life.
A severe burn developed on the area targeted by the radiation machine, and when I contacted the hospital helpline, the nurse on the phone asked me to describe it. I said, “Well, it’s black, because I’m Black.” There was a pause, followed by the response, “If it’s not pink, it’s not a problem.” “I think you’re referring to a white skin tone,” I replied, but she insisted it was fine. I knew it wasn’t fine. The pain was excruciating. I couldn’t even touch my breast and chest. I sent a picture to my breast care nurse, and it turned out I needed antibiotics.
My entire cancer journey was a constant battle to access the treatment I needed. The healthcare professionals were all lovely, but the systemic issues faced by ethnic minority patients could be avoided with more open dialogue, knowledge, and awareness about how to effectively treat us.
After my last round of chemotherapy, I received immunotherapy injections, a treatment intended to continue for a year to reduce the risk of recurrence. However, this treatment was abruptly stopped due to complications with my thyroid and heart. Following the start of immunotherapy, I had been experiencing fatigue and brain fog, which I initially attributed to the treatment. During routine ECGs, one in August 2022 revealed that I had heart failure. It was another devastating blow in a challenging journey. Thankfully, I am now receiving treatment and my heart is improving, but it has been a difficult and painful experience.
I am now cancer-free for two years, and for that, I am deeply grateful. However, life has not simply bounced back. A recent mammogram triggered a wave of anxieties, reminding me of the ever-present possibility of the cancer returning. I am working to find a balance, to prevent these fears from consuming me entirely. Through my experiences, I am advocating for greater inclusivity in clinical research and medical training, recognizing the gaps in knowledge when it comes to treating Black patients with cancer. I urge medical professionals to be open to collaboration with Black communities and grassroots organizations to learn from their experiences and adjust treatment accordingly. The government must address this issue as well, as systemic change must come from the top down.
I do not want anyone else to go through treatment without knowing what to expect, without understanding what is happening to their bodies. I am in the process of rebuilding, physically and mentally. It is a gradual journey, but I know that I will get there. Life will never be the same, but it will get better. That I know for sure.
