Why I’m Sharing My Cancer Caregiving Experience
Why I’m Sharing My Cancer Caregiving Experience
Have you ever had the experience of getting news you didn’t anticipate - and it was terrible?
I was a few month’s shy of my 30th birthday when my mother was diagnosed with ovarian cancer. Her debilitating pain required a trip to the hospital. I remember I was standing in the emergency room when I received the unexpected news. The tragic part about my mother’s diagnosis was, because the cancer had developed to stage IV, the doctor’s didn’t give her the greatest prognosis. In fact, it wasn’t until later in her cancer journey that we learned how difficult ovarian cancer is to diagnose. It goes undetected with a regular pap smear. It is also one of the deadliest gynecological cancers because the symptoms are often subtle and resemble normal stomach issues.
Life can stop in an instant, can’t it?
“Your mother has ovarian cancer.” This was my new reality. I couldn’t imagine what my mom was experiencing. The doctor’s didn’t think my mom would last a year, given that the cancer had spread to her liver. Anger filled my mom’s eyes and voice when she inquired about yearly appointments she kept as well as how seriously she took her health.
Breaking the news proved to be the least of our new challenges. At the time of my mother’s diagnosis, I had been laid off from my job and was deep in the midst of finding another one. Now my attention had to be turned away from my life to becoming a caregiver and looking after my family. In addition to supporting my mom with her daily care needs and helping her schedule and get to doctor’s appointments, I also had two younger siblings who began to depend heavily on me. Because my father was working, I assumed responsibility for keeping track of their busy schedules, after school activities, and taking them to and from school. I also helped with homework while keeping an eye on my mom and what she needed.
This wasn’t the first time I had been exposed to caregiving. I remember, as a teenager, watching a close friend of our family care for her mother as she battled cancer while caring for her own family. When her mom passed, it wasn’t a year later that her father got ill, and she cared for him as well. I noticed the stress in her weary face, but she always held herself with a resilience that I never understood until I faced the same situation.
My mom didn’t choose the traditional ways to treat her cancer at first. She felt that chemotherapy and radiation would have destroyed so much of her body, so she tried a more natural treatment routine first which led to endless nights spent digging up suggestions and doing research. She switched to an entirely vegan diet, eliminating all processed foods and dairy. As a family, this wasn’t easy to process because it meant that we had to put aside our suggestions - and even concerns - while we honored her wishes and allowed her to take the best course of action for herself.
My mom was stubborn, and there were times we had bad arguments. We didn’t have the best relationship - she wasn’t always kind to me. Being her caregiver meant we were spending more time together. It was then that our relationship began to change for the better. As the disease progressed, my mom decided to go to Cancer Treatment Centers of America. We spent a week there meeting with various doctors and going over a treatment plan that they felt was best suited for her. During that same week, my little sister was in the hospital. So while I was on the phone with one doctor about my sister, I still had to look after my mother.
While mom was recovering from a procedure where they drained fluid off her abdomen, I decided to explore the facility and came to learn that there were many support groups available for patients and families including some specifically for caregivers. We met many other patients and families that week from around the world, all coping with various cancers. Some received good news, others not so much. The encouragement that everyone shared during the time we spent at the Cancer Treatment Centers of America made me teary eyed. Shortly after we left the facility, mom caught a blood infection and was hospitalized. She never recovered from this infection and died from complications from a stroke.
Racial Identity Affects Caregiving Experiences and Outcomes
I am sharing my story because, in communities of color, caregiving looks different. Often family members take on the role of caring for a loved one and are leary of facilities, such as nursing homes or assisted living homes, because of bad experiences, lack of finances, insurance issues, and more. Speaking from experience, caregiving can take a serious toll on your physical and mental health. When you are in the position of caring for others, you are normally too tired to look after yourself properly. Furthermore, caregiving can cause financial strain as most people cannot care for a loved one full-time while also working a job that is demanding. Careers often go on hold for a lengthy period of time while caring for a loved one. Often, the burden is left to one person, and the responsibility is not equally shared. This can lead to burnout and caregiver stress. Sometimes caregivers don’t take the help available to them out of guilt or not wanting to feel like a burden to others. What helped me maintain my health - and sanity - while caregiving was keeping personal doctors appointments and maintaining my schedule as best I could. I recommend that caregivers seek help when possible, take breaks, pace themselves, and seek out support groups.
What is National Black Family Cancer Awareness Week?
The FDA Oncology Center of Excellence has declared that June 17-23rd is National Black Family Cancer Awareness Week. Black Americans die at higher rates of cancer, they also face greater health disparities and barriers to treatment than any other race - which is why early detection and screenings are key for minorities. This week focuses on raising awareness of the Black cancer experience as well as encouraging more participation in clinical trials. It’s important to have an open conversation with your loved ones and encourage each other to be proactive about your health and your lifestyle choices. There are huge gaps in clinical trials and cancer research because there isn’t enough participation from Black communities. If you have a cancer diagnosis, be your own advocate and bring any concerns you have to your doctor, and do your research!
Part of my national advocacy work with the Ovarian Cancer Research Alliance is to participate in conferences. Once a year I, along with other national advocates, travel to Washington D.C. to conduct meetings with our House and Senate leaders and request their support of the various bills that support cancer research and funding. Whether you’re a patient or a caregiver, you can also participate in advocacy work by using and following along with the hashtag #blackfamcan on social media. Share your family traditions, remember those you may have lost to cancer, and - if you are in remission or currently living with cancer - share why this week is significant to you. Finally, share what you plan to do moving forward to keep yourself and your family in the best health possible.
Please join me in recognizing and participating in National Black Family Cancer Awareness Week.
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