After Cancer for the Caregiver and the Patient

Nancy (my primary caregiver during my cancer) and I went to University of Colorado’s Cancer Day program recently. It was an extensive program with breakout sessions for specific cancers like breast cancer (my diagnosis is metastatic breast cancer), colon cancer and lung cancer. Then they had general sessions with topics that included nutrition, fertility and survivorship. The handouts for the general sessions are available at this link

The presentation Coping as a Cancer Survivor was given by Marianne Pearson an oncological social worker in Fort Collins. She offered that “An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted.” As she talked about the emotional issues one faces including: worry, feeling stress, depression, anxiety, anger, grief, sadness and being alone, I realized that now that I am in recovery so to speak, I have experienced them all at times. Less than nine months ago, I had a 3-6 month terminal prognosis, and now I am back among the living. Instead of planning my funeral I am trying to figure out how to plan my life.

When Nancy and I talked about the program afterwards, she felt they left out a big piece when they didn’t address from her standpoint as a caregiver, going from being totally depended upon to having nothing to do for the person with cancer. Her life had been completely turned upside down by devoting her full time to caring for me and now suddenly, I don’t need her any more. She said it was very disorienting. A friend I talked with this morning said some caregivers would find it relieving, but obviously there is a continuum between the two poles. It is clear that both of us have to figure out where we go from here? Am I actually well enough to do any meaningful work? How long, how much? Who will want to risk hiring me if they know I still have what is considered a non-curable and terminal illness? How much am I still worrying about when it will come back or in what form? Does that worry ever go away no matter how long we are “survivors?” For Nancy, how does she move on? Will she find some kind of volunteer work to fill her time, make new friends, or find new outlets for her creativity like she has in her art classes?

In some sense for us both, it is a brave new world with completely different parameters than we faced before. It will be interesting to see where we go from here.

Fay Octavia Elliott is a three time cancer thriver.