Single File: Living Alone With Cancer

CUREWinter 2016
Volume 15
Issue 1

A cancer diagnosis is hard enough, but living alone or with only small children can pose even more challenges.

After Dhyan Atkinson’s bilateral mastectomy, her doctors told her she couldn’t return to her Boulder, Colorado, home, where she lives alone. So she stayed with two sets of friends for the first three weeks, and then her sister came to her apartment and cared for her. She was living on her own again when she awoke to find a gaping hole in her body where the stitches had burst. She called the home-care nurse who had been visiting regularly, and the nurse came immediately, wrapped her in a big hug of reassurance and brought her to the emergency room.

She told the pastor of her church about her diagnosis shortly after hearing it, and the pastor mobilized the "caring team." A designated volunteer coordinator set up a Caring Bridge website, which gave Atkinson a vehicle for sharing news about her cancer journey with her loved ones. Despite Atkinson’s diagnoses and complications, “It was one of the best times in my life. I tend to be independent and self-sufficient. I had no idea how many friends that I had to help step up to take care of me,” she says. “I just relaxed into it and enjoyed it.”

On the other hand, after surgery for ovarian cancer, Patricia Cillo, a single mother, gave herself less than three weeks to rest before returning to running her home daycare center. She continued driving her 11-year-old son to his baseball practices and doing all the usual household chores. As her family’s sole source of income, she felt she had no choice but to work through the pain. Cillo appreciated her 28-year-old daughter keeping the daycare going right after her surgery, but her daughter had her own job and apartment to think about.

“I have to be here for my kids. There’s nobody else,” the East Haven, Connecticut, resident says. “The only time I missed my son’s game was when I was in surgery.”

Coping with a cancer diagnosis and treatment is no picnic for anyone, but people who live alone or with young children and no other adult face extra challenges. Besides shouldering practical tasks, such as earning money, taking care of children, running a household and recovering after treatments without another adult on hand to help, single people also may have less help handling the emotional side of things. And that can be tough — research shows that spousal relationships are beneficial to physical health.

A very large 2009 study found that patients with cancer who are married live longer than those who are single. Sixty-three percent of married cancer patients are still alive five years after diagnosis, while 58 percent survive at least 10 years, according to the study. For never-married patients, survival rates are 57 percent and 52 percent, respectively, and for divorced patients, the survival rates are 52 percent and 46 percent. Separated patients had the worst survival rates in the study: 45 percent at five years and 37 percent at 10 years.

In the United States, about 42 percent of adults aged 20 and older, or nearly 700,000 annually, are not married at the time of their diagnoses, according to the National Cancer Institute’s Surveillance, Epidemiology and End Results Program (the marital status of 10 percent of patients was unknown, as was information on how many single cancer patients have young children).

For those with a single family member, friend, coworker, neighbor or acquaintance who has cancer, there’s no one-size-fits-all way to help. Some singles are happy to let others lend a hand, but even those who are independent and private may find they have no choice but to accept rides to treatment, home-cooked meals and carpool help. Because disease types, treatment methods and people are all different, those who want to support someone dealing with cancer should read the signs and respond to the patient’s body language, tone of voice, words and actions.

Tricia Lepofsky, of Arlington, Virginia, had never known anyone with cancer before her single neighbor had a double mastectomy. Prior to her diagnosis, Lepofsky and her husband had chatted with the neighbor, Stef Woods, when they ran into each other while walking their dogs. Volunteering to walk Woods’ dog at night when they were walking their own dog was a no-brainer.

Lepofsky noticed Woods wasn’t eating much, so when she made a meal she thought her neighbor would like, she brought some over.

As she got to know her neighbor better, “I just paid attention to her cues,” Lepofsky says. “You let the patient take the lead on what they need and what they want you to do for them.”

Don't Ask, Just Do

Elissa Thorner Bantug was working full-time, in graduate school and a single mom to a preschooler when she was diagnosed with breast cancer at the age of 23. Her husband left when she was diagnosed, and she had no family close by. Fiercely independent, she maintained a can-do spirit because she didn’t want to be seen as “the woman with cancer.” She could have used support, but she had been living on her own since the age of 15 and had developed a strong sense of self-reliance.

“I didn’t want to be treated special, but then when people didn’t ask me how I felt, it made me feel that people didn’t care,” she says. “I didn’t know how to ask for help.”

Even though Bantug relaxed her standards slightly when a cancer recurrence led to a bilateral mastectomy, she wore herself out, and her blood cell counts dropped. Now Bantug, who holds a graduate degree in health promotion and health education, works as project coordinator of the Breast Cancer Survivorship Program at the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center. One of her goals is to help patients learn from her experiences.

Caregivers should not ask whether they can bring over a meal. They should ask what the patient feels like eating, what her kids’ favorite foods are and then tell the person when it’ll be dropped off. When caregivers divide a big casserole into smaller containers that can be frozen and taken out as needed, that’s even better. When a friend knitted her a hat and told her she didn’t need to send a thank-you note, Bantug was as grateful for that level of understanding as she was for the thoughtfulness of the gift.

If your single friend or relative is undergoing chemo treatments, find out what days she receives chemo and drop off some food. “Even when they tell you, ‘No, I’m fine,’ you can’t ask. You just have to go,” Cillo says. “Most of us don’t want to put a burden on another person.”

Rather than asking whether she’d like you to go to the grocery store for her, call from the store and ask what she needs. Shovel the driveway, cut the lawn or weed the garden.

Still, friends should understand and respect that people who are used to caring for others, or who take pride in their independence, have a hard time acknowledging that they need help. Diane Viveiros, a gynecological social worker at Smilow Cancer Hospital at Yale-New Haven, tries to make it easier for patients by pointing out that they are giving a gift to others when they accept help. In fact, friends and relatives can actually find it therapeutic to provide help.

“We are social creatures and, at some point in our lives, we all need help,” says Anna Millard, an oncology social worker with the University of Michigan Health System Comprehensive Cancer Center.

It Takes A Village

Woods, the breast cancer survivor, says when she needed help getting into the shower and someone to stay with her through the night, her close girlfriends were there. Their support and love was invaluable, but so was the help of other friends. You may not be close enough to a neighbor with cancer to accompany him to treatment, but that doesn’t mean you can’t help.

Woods’ friend’s husband knew she wanted a better TV, so after learning her budget, he researched options, purchased the TV and set it up. Another friend installed a grip bar in the shower. An acquaintance kept her well supplied in home-baked cookies.

Bantug didn’t ask, but was thrilled when an acquaintance picked up her car and brought it for an oil change. Atkinson, who works for herself and didn’t have short-term disability insurance, accepted two months’ free rent from her landlord when her funds ran out. Her bank helped her set up an account so that people could make tax-deductible donations, and she emailed friends and acquaintances a request for help. Some donations came from people she hardly knew, and she received enough to hold her over until she could resume working.

Those who live far away shouldn’t underestimate the value of cards, say social workers, cancer patients and caregivers. Susan Rubin, of Manchester, Connecticut, who has metastatic liver cancer, enjoys receiving cards, especially the funny ones. Out-of-town caregivers can also send books, puzzles and grocery store gift cards.

Emotioinal Support

Single parents of young children have an added burden, since children do better with consistent routines. Patients who are too sick to care for themselves may need to ask a close friend or relative to stay with them in their home, minimizing the disruption to the children’s lives, says Nancy Borstelmann, director of social work at Dana-Farber Cancer Institute in Boston. This provides a safety net for children by ensuring that they have an adult on hand who can help to take care of them, while also preventing children from taking on too much responsibility. Single parents with no local friends or family may contact the American Cancer Society, and depending on volunteer availability in their area, they may be able to get ACS-trained volunteers to help as needed. Religious communities and some municipal government social service offices may also be a source of support.

Major cancer treatment facilities have social workers to help parents navigate the balancing act of their treatment and healing while raising children, but patients often have to be proactive about requesting a meeting with a social worker, since there aren’t enough for every patient. Doctors and nurses try to gauge whether patients would be helped by a social worker, but they’re not going to push it if the patient insists she has everything she needs.

While social workers encourage parents to talk to their children in an age-appropriate way and allow them to help in small ways, it’s important that cancer patients get their emotional needs met by other adults rather than burdening their children, Borstelmann says. Leading cancer treatment hospitals offer support groups, online information and one-on-one phone support in an effort to accommodate a variety of needs.

Loved ones and other caregivers can help by explaining that they’re open to listening to the patient’s thoughts and feelings about their illness, and periodically asking if they’d like to talk about it, but otherwise treating patients as they always have, Rubin suggests. While some patients have the need to talk about their health journeys, others want to put the situation out of their minds and be themselves, not “the cancer patient.” When Rubin told people her terminal diagnosis, for instance, she was bombarded with daily phone calls from people wanting to help. She appreciated it, but needed space.

“I was suffocating,” she recalls. “I was trying to cope with what was happening to me without having to call 12 people.”

Rubin loves to be with her friends and hear about their lives and their problems. “I want to hear about the rest of the world,” she says. “I know what my world is about. I don’t want to keep talking about it.”

Her lifelong friend, Donna Ploss, of East Hartford, Connecticut, had to learn the hard way to back off. Admittedly, Ploss became protective of Rubin, but they’re close enough that Rubin can tell her when she’s out of line.

“She’s like my soul sister, the sister I never had,” Ploss says. “I love her. I panic sometimes. I can’t imagine what my life would be without her.”

Rubin cooks Shabbat dinner for Ploss and other friends, and Ploss says she tries to tackle a few chores while she’s there, but mostly they have fun together like they always have. Ploss is there to listen if Rubin feels like talking.

Atkinson, meanwhile, is back running her consulting business, knowing that she’s loved by many. “I’m so grateful for having had this experience,” she says. “It changed my life.”