Facing Cancer Alone

By Nicholas Zuk

In December of 2023, after suffering for several weeks with severe abdominal pain, my mother went to the emergency room. She had a CT scan, was admitted to the hospital, and within 24 hours was diagnosed with colon cancer. Two days later she underwent surgery. Because I had just begun taking final exams at college, my mother decided not to tell me about her condition until I had returned home for my two-week Christmas holiday. My mother, who lives alone in a small town with limited resources some 1000 miles away from me and the school I attend in Pennsylvania sought to shield me from the emotional and academic disturbance that her diagnosis would have undoubtedly caused. Her decision, made out of love and concern, meant she spent the first week of a frightening diagnosis and uncertain prognosis in utter solitude. Learning about her experience brought to my attention how challenging navigating cancer can be without a strong support system and illustrated the systemic inadequacies in care that exist for people who battle this illness alone or live where resources are limited.

The foremost issue she spoke of was the lack of communication and support she received from her oncologist and the medical staff. Despite being in the same building as her oncologist for her weekly chemotherapy infusions, my mother never received any direct follow-up from her doctor during her treatment. In fact, the only contact my mother had with her oncologist was the initial appointment before treatment began and the appointment after she completed her chemotherapy. During the initial meeting, my mother, who was trying to take notes and comprehend her illness during her initial session, was ordered to “put the notepad down and just listen.” The doctor promised her that a nurse would contact her and provide all information talked about in their meeting regarding her diagnosis and treatment options. This was a promise that was never fulfilled and that set the tone for an even more isolated and stressful experience. After not hearing from the nurse or other members of the medical team for a couple of days, despite reaching out to the office, my mother turned to the internet for answers only to find sources that often displayed worst-case scenarios and statistics.

Another example of her lack of support from the medical team was early in her treatment when she developed pneumonia only a month into her chemotherapy. When she was severely ill, it became apparent she needed medical attention. She called the cancer center only to be advised by a triage nurse to go to the nearest urgent care facility. This cavalier advice, despite the severity of my mother’s condition, resulted in a 911 call and another hospitalization. An additional shortcoming in her treatment was the lack of information she received concerning the long-term negative effects of her chemotherapy. The chemotherapy infusions have caused damage to her veins, peripheral neuropathy, constant exhaustion, and chemo brain fog, all of which she has become aware of through learned experience rather than through prior awareness. The lack of communication and preparation from her medical team exacerbated the mental and physical toll caused by her treatment and left my mother to face not just the illness, but also the unexpected consequences without a plan on how to deal with the side effects.

Despite this, my mother found comfort in her regular routines, notably at work where her coworkers, while not directly involved in her treatment, offered a sense of comradery that allowed her to maintain some semblance of normality. Their concern and simple acts of kindness throughout the day helped her feel less alone in her struggles. However, when she returned home after work, her loneliness and the side-effects of chemotherapy were exacerbated by her solitude. My mother was widowed when I was a baby, and with no one to share housework or chores with, even simple activities were difficult to complete. Exercise is encouraged during treatment to help mitigate side-effects, but any attempts to exercise felt impossible. Grocery shopping became an arduous task. In fact, most days getting ready for work took all of her energy. Eventually, she began using a food delivery service to avoid shopping because it allowed her to conserve what energy she had left at the end of the day.

For people dealing with cancer, fatigue is a common occurrence, and delivery services such as the one my mother used are available to aid in practical assistance. Some of those services are free. Meals on Wheels, for example, is a service that delivers healthy meals, primarily to homebound seniors, but also serves people too sick or otherwise unable to cook for themselves, and is widely available. Similarly, local charity and faith-based organizations often offer meal services to patients in need. If transportation to treatment is too stressful, energy consuming, or not possible, groups such as the American Cancer Society’s Road to Recovery offer free transportation to medical appointments. Additionally, most cancer centers provide information about other resources available to patients.

Facing cancer alone takes an enormous toll on a patient’s emotional wellbeing. I called my mother daily and could hear how the solitude at home fed her fears, and how the lack of support from her medical team made her feel as though there was nobody she could talk to about her experience fighting cancer. My mother says that if she had known about platforms like CancerMatch (a Malecare initiative) she would have utilized its forums and online chat rooms to connect with its community and share her experience with other patients facing similar diagnoses. CancerMatch is unique from other online communities in that it connects patients with peers who have similar diagnoses and treatment experiences, and provides a safe forum and dating platform to share anxieties, seek advice, and find emotional support through each other’s lived experiences. For someone like my mother, who has no close support system, such a platform could have saved a lot of worry and provided much needed reassurance.

Additional online communities like Inspire.com also allow patients to share their stories, ask questions, and offer support to one another. These virtual environments are convenient ways to instantly and remotely offer patients both practical insights and a community that can help them feel less alienated by their experiences. For individuals who prefer more structured or guided engagement, organizations such as CancerCare provide professionally supervised support groups both online and over their telecommunication line. These groups are tailored to specific cancer diagnoses and stages, and offer patients a safe environment to share their circumstances.

Aside from lack of emotional support, a common issue for patients dealing with cancer is the financial burden caused by high treatment costs (combined with the potential inability to work full-time due to treatments). Concern with finances also has an adverse effect on emotional well-being while undergoing medical treatment. There are resources to help patients manage financial hardship. The Patient Advocate Foundation, for example, is a case management service that helps patients address insurance challenges and gaps in care. Organizations such as the HealthWell Foundation and CancerCare’s Co-Payment Assistance Foundation are available to assist in covering the costs of treatment and other related expenses.

While writing this blog, I utilized online forums to read other patient’s perspectives on their own treatments. One commonality I noticed echoed my mother’s experience:  the healthcare system often fails to give patients the opportunity to make their mental health and well-being a priority in their treatment. Instead, lack of communication from medical staff and the overwhelming financial burden of treatment takes priority. The patient is left to deal with the fallout, forcing them to seek a better understanding of their treatment or research initiatives that can help them pay their accumulating medical bills.

It is clear that addressing these gaps necessitates not just increasing access to programs such as CancerMatch and advocacy services, but also cultivating a culture of compassionate care, and providing patients with information about available resources, and emotional support. Furthermore, patients should be checked on during treatment to make sure their medical and emotional needs are being met. If healthcare practitioners acknowledge the barriers isolated patients face, and become more proactive in offering the necessary support, many of these problems could be mitigated and patients would have more confidence in their care.

I hope that anyone who is currently fighting cancer alone recognizes that while solitude can be scary, there are resources available to help and that you are not alone in your struggles. Services such as CancerMatch, local support groups, meal delivery programs, and advocacy organizations listed throughout this blog exist specifically to help patients receive the care and compassion they deserve. My mother’s story is one of struggle, but it is also a reminder of the value of community. She now travels to a larger city for continued care and has been doing well. When I shared information about these services with my mother, she said that joining online communities to make direct connections with other cancer patients would have been invaluable to her. My mother believes that personal connections foster a sense of hope and solidarity that can be transformative in the darkest moments. She is a firm believer that person-to-person dialogue, whether through messaging, phone calls, or in-person meetings is essential for facing challenges and for healing.