What can we learn from cancer patients in the time of coronavirus

Republished with the kind permission of the Fred Hutchinson Cancer Research Center

Lessons from cancer patients in the time of coronavirus

For the immunocompromised and those with a disease, social distancing and uncertainty are a way of life. Daily walks, gratitude, and dancing help.

SCCA psychiatrist Dr. Nicole Bates, who splits her time between patients with cancer and those without, said uncertainty can either demoralize or empower people. Some cancer patients, she said, become depressed or anxious, while others develop “incredible resilience.”

“So many of us are grappling with the initial affront and lack of control,” she said, regarding the current crisis. “I’ve been struck by how my patients find strength through uncertainty, how they use it to crystallize priorities for living each day.”

Fred Hutch psychologist and patient outcomes researcher Dr. Salene Jones described resilience as the ability to adapt to stressful events.

“A person can be sad, unhappy or stressed, and still, ultimately, be resilient,” she said, pointing to resiliency tips recently published by the American Psychological Association. “Resilience is not the absence of feeling stressed but finding a way to cope with it. It’s OK to be a mess sometimes. Just not all the time.”

Stay connected with others — and yourself

Cancer patients have also been staying connected, while apart, for years.

#BCSM (short for “breast cancer social media”) holds weekly Twitter chats, drawing patients and survivors from around the world. Ditto for other patient communities on Twitter, including for brain cancer, lung cancer, pancreatic cancer and many more. People living with disease also regularly gather in closed Facebook groups or vast online patient communities like Inspire, Smart Patients, Colontown and others to ask for advice, grouse about side effects and gain strength from others.

“It’s easy to become isolated and lonely,” said Renee Kaiman, a 38-year-old metastatic breast cancer patient and mother of two from Toronto, Canada. “Right now, it’s good to reach out to people via FaceTime or have phone calls. Try to do things you enjoy to keep your mood up.”

Staying connected with yourself is also key, especially when dealing with isolation and angst.

“This is a great time to explore creative projects, to listen to music, to try new recipes they’ve never tried before,” Kleinhofer said. “We can’t control what’s happening right now, but we can control how we respond to it. Things may seem crazy but every day there’s something to be thankful for. Find what makes you happy and focus on that, whether it’s family or friends or the sound of birds chirping outside. And if you start to spin out of control, that’s when yoga, meditation and mindfulness can come into play.”

Leman, who had to celebrate her birthday in quarantine, decided to throw a “global virtual dance party” (she also danced daily during her cancer treatment). Now it’s become her daily routine.

“In times of uncertainty, we can always count on the predictable rhythm of music,” she said. “Movement soothes, alleviates stress, moves emotion through and out. We need that now more than ever.”

Breast cancer patient Dennis Keim, a 66-year-old retired teacher from Lincoln, Nebraska, said he’s using his newly mandated alone time to learn a new instrument.

“I ordered a ukulele for self-isolation days to come,” he said. “My goal is to be able to play this late 1890s-era tune. I love those old, largely-lost-to-history tunes.”

Jones, the Hutch psychologist, emphasized the importance of coping with stress in such positive ways.

“Do things that help you,” she said. “For someone that’s extroverted, that could be regular FaceTime calls with friends and family. For others, it could be exercise, meditation, or reading a book. Find what makes you feel better.”

Embrace empathy

Even in the midst of cancer, people look for silver linings. That’s no different for COVID-19. Some believe others will gain perspective.

“One thing that helps me is to remind myself that many friends with metastatic cancer practice social distancing, and even self-isolating, every day,” said breast cancer survivor Nancy Stordahl, of Menomonie, Wisconsin. “They’re used to taking precautions and being extra careful. It may be hard for us, but it’s part of their daily lives and always will be. It kind of puts things in perspective.”

Ghecemy Lopez, who now works as an advocate for underserved patients, was diagnosed with breast cancer at the age of 30, then thyroid cancer at 32. Now 39, she’s living with mast cell activation syndrome, an immune disorder she believes was triggered by treatment.

She hopes the COVID-19 crisis will help people find more empathy.

“I used to get comments from people who thought I was ‘exaggerating’ my immuno-related issues,” she said. “Now the world is going to experience for a few weeks what cancer survivors, the elderly or immunosuppressed people feel on a daily basis. My hope is that during and after this pandemic situation, everyone becomes more mindful of the needs of others.”

Kleinhofer sees signs of that already.

“I’ve seen people sharing amazing resources,” she said, pointing to the museums and performances that are offering free livestreaming as well as authors, artists and celebrities providing online doodling lessons and readings for kids. “Healthy people on [the neighborhood website] Nextdoor are offering to get groceries for those who are elderly or immunocompromised. People are stepping up.

“You see that during a cancer journey and in times of crisis like now,” she said. “You see the pure beauty of the human spirit.”