Meet Caroline, Uncovered
Caroline (she/her) — Nigerian-Canadian
Diagnosed at 44 years old — Stage 2, Invasive Ductal Carcinoma, HER2 triple positive breast cancer
I am strength. I am a mother. I am a thriver.
In a strange way, my breast cancer journey began more than 20 years ago, when I lost my mother to breast cancer. I was 24 years old. That same year, months before she died, I had my first biopsy. I remember her sadness and fear when I told her about the surgery and her relief when we learned that the tumor was benign. So, breast cancer has always been lurking in the shadows, yet it still shook me to my core when I learned that the lump my doctor felt in 2018 was breast cancer.
I immediately thought of my mom, who was diagnosed at the same age 44 and died two years later at age 46, the age I am now. I was struck by the similarities, and I had a lot of fear, but I held onto the hope that things would be different for me.
“Speak up and do what is right for you.”
There is so much I have learned along the way and every experience will be different, but I offer the following. First, you are not alone. Surround yourself with people who love and care for you and who uplift your spirits. This can be an isolating journey, but it doesn’t have to be an awful one. There can be moments of joy even in the most trying circumstances. So, surround yourself with people who bring you joy. I am immensely grateful to all the people who supported and rallied around me—old friends, new friends, family, co-workers, neighbours, and even strangers. The kind woman at a boutique who let me cry on her shoulder when I broke down in tears… What you will need are people. And the way to go about getting the support you need is to TELL OTHERS. Ask for help and when it is offered, accept and receive it with gratitude.
Second, advocate for yourself and ask questions. Don’t be afraid to ask clarifying questions. If you are unsure about what is being said, ask your providers to explain things to you in plain language. It is your body, so don’t be afraid to advocate for yourself. Speak up and do what is right for you. And, if possible, take someone with you who can also serve as your advocate. The volume of information you will receive will be overwhelming and you will not be in the right state of mind to absorb and ask the questions that you need to ask.
Lastly, cry, laugh, scream, get angry, feel what you need to feel so you can deal (in whatever way you choose) with your diagnosis. It is easy to be overcome by your emotions, give yourself time and permission to feel. You will have good days and bad days and one day the good days will outweigh the bad.
I am very grateful to my oncologist who understood and prepared me on what to expect, and also told me he would be with me every step of the way, and he was. He warned me of some of the unique changes I could experience as a Black woman going through treatment—changes in my gum colour, skin pigmentation, etc. I was very fortunate to have had an oncologist who understood what Black women with breast cancer often experience. I felt seen and respected, and my wish and hope is for other Black women to have a healthcare team who sees them and can better support them through their journey, as I did.
“The notion of not talking about cancer needs to change.”
The biggest cultural barrier in navigating health as a Black person is this: We don’t talk about it. This society is not structured for Black girls and women. As a result, I was raised to be strong, to be independent, to not show weakness or vulnerability. It was best to do things on my own or keep things quiet within the family, and that’s harmful because you can’t always be strong.
Family members told me not to tell anyone when I informed them of my diagnosis. My mom followed that ethos and did not share her diagnosis, and that needs to stop. Having gone through this experience, I can’t imagine doing it alone, suffering in silence.
I chose to go against those cultural influences and to share my breast cancer diagnosis, but it had to be on my own terms. It was very difficult for me to share and express my fear. It went against my instincts and how I was raised.
The notion of not talking about cancer needs to change. Once I overcame my fear and hesitancy about talking about my diagnosis, I felt freer. Talking about it helped me better understand how I was feeling. It also connected me to others who were experiencing the same thing. Sharing and listening to other women’s stories inspired me and, most importantly, it gave me hope. I was reminded that I was not alone and there are many who have gone through this and are thriving.
I was and continue to be inspired by Michelle’s vision—to uncover Black women’s stories and experiences on their breast cancer journey. My mom died from breast cancer and her story was not told because she hid it. I think it is so important for Black women and women of color to share their stories because it is only through telling our stories that we will get the attention and the support we need and, ultimately, better health outcomes.
“We need to be seen, we need to be listened to and we
need to be better supported.”
Until the day I was diagnosed, I thought of breast cancer as a white woman’s disease, how can that be given my own family history? It’s because we don’t see ourselves in the images and stories being shared in public health campaigns, the public fora, or the media. There is a void of representation of Black women and women of colour in the breast cancer community and it’s a harmful oversight that needs to change. We need to be seen, we need to be listened to and we need to be better supported.
It is my hope that this resource will continue the dialogue that Michelle, Faith, Indira, Tonia, Laura, Kristal, Vivene and Keisha started a year ago; and inspire other Black women to tell their stories.
Why am I writing this? I am writing to tell my sisters out there that your life is now and not later. My breast cancer diagnosis woke me up. Live your life now and don’t wait to take care of yourself. Don’t cancel doctor’s appointments. Don’t skip out on that long walk. Don’t wait until tomorrow… Slow down and yes, do stop and smell those roses. — Caroline