In 2015, 10 years into my career as a clinical and advanced practice oncology nurse, I received the news no one wants to hear: my mother had a CT-scan suspicious for cancer. I’ll never forget the sound that escaped me as the agonizing reality of what lay ahead set in. I immediately traveled home to be with my parents with thoughts running through my head. What resources were available where they lived? What will the financial situation for this look like? Above all, I was desperately hoping for a diagnosis that was curable.
Within a week of hospitalization, we were told by a hospital physician that they suspected the GI system, possibly the pancreas was the diagnosis. The vague information provided by that doctor was soon clarified by reading the reports in the health records we requested. Metastases “too numerous to count” crowded her lungs and made treatment unlikely, even as a palliative measure. An appointment with her oncologist a few days after a hospital discharge confirmed the diagnosis of Stage 4 pancreatic cancer. We were sent home with a referral for hospice care. In the days and weeks ahead, we navigated caring for my mother, a nurse herself. This included an emergency trip to inpatient hospice for symptom support, learning to manage her medications at home, and working with her to ensure she was comfortable, while simultaneously “putting her affairs in order.”
The thing is, I come from a family of health professionals. We have a nurse, a physical therapist, and a dietitian among my siblings, plus two nurses and a dental hygienist among my aunts. My sister and I are both nurses at a National Cancer Institute-designated comprehensive cancer center, a premier center for oncology care and research. If anyone, we should know exactly what to do in this situation, right? Yet, the reality of finding out our mother had cancer was an emotional shock which still proved challenging to navigate. She chose to forego treatment, but as caregivers, we still needed to learn the systems, referral processes, insurance reimbursement, and process of caring for her at home, particularly as she became less able to do activities of daily living herself. Cancer is a complex disease, even for those of us who know how to speak its language. Its impact on individuals and families extends far beyond the disease itself.
The Lived Reality is More than a Diagnosis
Each year over 1.7 million individuals in the US are newly diagnosed with cancer. In addition, approximately 16.9 million are cancer survivors, living with a diagnosis in remission or in chronic therapy. The lived reality of these individuals and the families that care for them is that cancer is so much more than the diagnosis. It changes the way you live and interact with the world around you. Your physical and emotional well-being, your finances, your community engagement, your work or school, and often the way you view life itself, that all changes. You are immersed in a new culture: one of scans and needle sticks and a new vocabulary of treatment, and potentially clinical trials or treatment that may not even have names yet. You are thrust into an intricate choreography of life before cancer and life as an individual with cancer, balancing getting to appointments, managing medications, coping with fatigue and other symptoms, and figuring out what is often described as “a new normal.” For those with the best resources and connections, even cancer professionals themselves, this can be challenging to navigate. And for those who are underinsured, experience financial hardship, undergo treatment without a caregiver nearby or at all, and often, are experiencing cancer with other co-morbid conditions like heart disease and diabetes, the full-time job of cancer management can be harrowing. Unfortunately, the demands of life don’t stop when a cancer diagnosis occurs.
As we acknowledge World Cancer Day 2020 we recognize that cancer profoundly impacts both individuals and communities. I want to share some pieces of knowledge I have from witnessing two different perspectives of cancer: the treatment, research, and care I’ve done on the clinical side, and the emotional, personal side of caring for my mother with a cancer diagnosis.
For individuals diagnosed with cancer:
- Start with yourself. Everyone’s diagnosis, treatment, coping style, life circumstances, and resources are unique. In the face of an overwhelming diagnosis, consider what’s important to you and talk through these preferences with family and friends, documenting them to share with your healthcare team. Identifying a person (or people), who can assist with decision making and logistics can help take away some of the burdens of managing cancer. Though every experience is unique, there are resources that can help to provide information and support, including:
- Organizations like the National Cancer Institute and American Cancer Society are excellent sources of evidence-based information about cancer types and treatment
- Condition-specific organizations like the Leukemia and Lymphoma Society, the Pancreatic Cancer Action Network, and Susan B Komen Foundation can be great ways to connect with individuals with personal experience or professional expertise for a particular cancer diagnosis.
- Programs, such as digital health coaching, can provide the support that complements clinical care received from your medical team by focusing on understanding your diagnosis, managing your symptoms, maximizing coping skills to reduce stress, and accessing nutrition and exercise to support your total wellbeing.
For individuals supporting a family member or friend with cancer:
- Listen and be there. Sometimes individuals with cancer just want to be heard but may not be certain how to start the conversation. Offer to listen, let them lead the conversation, and recognize that talking about something other than cancer is sometimes the best medicine.
- Offer to help and provide concrete support. Many times friends and family want to help and may set “let me know if you need anything.” Sometimes it can be difficult to figure out or ask for what is needed. Try some of these suggestions, checking with your friend or family member to ensure they are comfortable. Instead of saying, “would you like me to do grocery shopping for you?” try “I am going to the grocery store and would like to pick up some things for you. Would you like to come with me or can you make me a list of favorite/needed items?”
- Recognize your own needs. People who provide caregiving for individuals with cancer can also be impacted by the diagnosis. Being aware of your own health, support needs and resources is equally important to providing care for your family member.
One thing I have observed, both in the individuals I have cared for and in my mother, is the irrepressible desire to live as fully as possible and for as long as possible. Managing cancer can feel like a 24-hour job, one that largely occurs beyond the clinical setting. When I think about the resources that have been most helpful to the individuals with cancer I have cared for, and for my family as well, it is often those that provide holistic support for the whole person, as well as their caregivers. In our case, this was the exceptional care provided by the hospice team, who acknowledged my mother as the person she was, and not simply the diagnosis with which she was coping, ensured she was comfortable, and that we were empowered to care for her at home until her death 5 weeks after her diagnosis. For those who do not require end of life care, resources like digital health coaching can serve as a similar role in supporting the whole person as they navigate cancer care and empowering them to not only manage but to live fully beyond the cancer diagnosis.
Kelly Brassil, PhD, RN
Director of Medical Affairs