Advanced Cancer's Emotional Cost
Hester Hill Schnipper, LICSW, OSW-C Program Manager Emeritus, Oncology, Social Work
NOVEMBER 03, 2020
During a meeting of my weekly support group for women with advanced cancer, one woman said: We are all living on borrowed time. Immediately, another retorted: No, borrowed time is free. We are paying a very high rent for our time. For several moments, there was quiet in the room as we all considered her statement. Then came animated discussion and unanimous agreement with her.
Even if there are only a few days of feeling poorly after chemo, those are days when the rent is highest.
People living with advanced cancer most certainly are paying a high cost for their days. They receive ongoing cancer therapy that often brings unpleasant side effects. They may experience symptoms from the cancer itself, and always worry that pain or increased disability are in their futures. They may not be able to continue with their usual routines and responsibilities, and they worry about their families. If they have children, their sadness and concern is limitless.
The high cost can also be literal as medical bills accumulate, and their incomes are often reduced. If someone is fortunate enough to have disability insurance, they might receive 60% of their usual salary, but that leaves a big gap. There are probably additional expenses related to having advanced cancer; things like at-home care, childcare, transportation and parking costs at the hospital, which add up to more bills.
But it is the psychological/emotional high rent that I am contemplating. All of us who have received a cancer diagnosis and gone thorough cancer treatment are aware of the challenges. When one is being treated with the hope of cure, there is a specific plan and timetable. During the months of active treatment for each of my breast cancers, I could look at the calendar and know that better times were ahead. We can plan on X number of chemo cycles and Y number of radiation treatments. We can schedule around them, tolerate the difficult days, and always remind ourselves that someday our lives would again be ours. People with advanced cancer don't have that comfort.
The general strategy for treating advanced/metastatic/Stage IV cancer is continuing treatment. Any one drug or set of drugs is given for as long as it is helpful. At some point, the cancer progresses, and it is time to change treatments. This is always an emotional crisis as it means that one less drug is available, and we worry how many others remain on the list of possibilities. Beginning a new treatment also means adapting to its demands and rhythms. It makes a big difference if the medications are oral or if we have to go into the hospital for infusions. If we have to go in, it makes a big difference whether we go every 4 weeks or every week. Most of all, it makes a big difference how our bodies react to the new medication and how well we feel. Even if there are only a few days of feeling poorly after chemo, those are days when the rent is highest.
When you are feeling badly, it is almost impossible to sustain a cheerful or even calm outlook. Inevitably, physical malaise is paired with emotional distress. Patients can't help but wonder how much worse it is going to get and whether they will ever again feel well. It is tough to remind yourself that easier days are ahead when no one can predict or promise when they might come.
One of my patients recently added another thought-provoking phrase to this conversation. She is currently on a clinical trial for a recurrent cancer. She is doing quite well right now, but she is scared and sad and sometimes sick. On a Zoom call with her family, someone asked how she is doing. I’m hanging in, she said. A sister corrected her: It's more like you have to keep doing pull ups.
The whole world in 2020 is having a lesson in uncertainty, unpredictability, unending pull ups, and the absence of promises. We all may feel that we have been robbed of any sense of control and that the year is not the one we anticipated. We know that eventually the pandemic will end. Unfortunately, people with advanced cancer will continue living on rented time.