What can we learn from cancer patients in the time of coronavirus
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Republished with the kind permission of theΒ Fred Hutchinson Cancer Research Center
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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.
Youβre washing your hands like crazy. Staying 6 feet away from people with the sniffles. You donβt know if itβs safe to hug your friends or family, or go to work or what. You donβt even know if youβll be alive in a year.
Itβs scary. Itβs surreal. And for a lot of cancer patients, itβs β¦ a Tuesday.
βFacing cancer twice has taught me to embrace my ever-changing life status,β wrote thyroid and breast cancer survivor Ghecemy Lopez during a recent breast cancer βTwitter chatβ on coping strategies for the COVID-19 pandemic. βSurvivors have so many lessons to share. Weβre experts in adapting to βnew normalcyβ β even before it became popular.β
For those whoβve been diagnosed with cancer, the onset of the coronavirus pandemic has felt a little, well, familiar. The frantic Googling and data-gathering. The denial and disbelief. The uncertainty and panicky behavior. Cancer patients have been there. Same goes for all the handwashing and hypervigilance. People whoβve been through surgery or radiation or chemotherapy or bone marrow transplants or other immunocompromising treatments are routinely forced to hunker down at home, avoiding crowds and friends with colds, skipping weddings and air travel and ordering their groceries online.
As one Seattle survivor put it, βIβve sheltered in place lots of times.β
Now the whole country β the whole world β is experiencing the initial shock of a new βdiagnosis.β Not cancer, but a brand-new coronavirus to which we have no immunity and no treatment. At least not yet.
But we do have pros we can tap for advice on how to get through these strange days ofΒ social distancingΒ and relentless anxiety. We turned to cancer patients, caregivers and experts from Fred Hutchinson Cancer Research Center and its clinical-care partner, Seattle Cancer Care Alliance, for their hard-fought insights on living with uncertainty, dealing with self-isolation, soothing fear, staying connected and, as much as possible, remaining resilient.
Denial is not a strategy for coping with a diagnosis
βCancer absolutely preps you for something like this,β said Cari Roy, a 59-year-old New Orleans psychic and cancer survivor whoβs also endured 9/11, multiple hurricanes and an oil spill. A year out from treatment, Roy said sheβs increasingly concerned about the number of people who refuse to take the coronavirus seriously.
βIβm seeing a lot of people in denial,β she said. βBut people need to be aware of whatβs going on and get real. Weβve all just received a diagnosis. And the treatment plan for all of us right now is to just sit down and pay attention to self-care. The universe is telling us to slow the βFβ down.β
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Read more:Β COVID-19 and living in a country that disables us
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ββThis too shall pass.β These words soothe me,β she said. βI use them when life is great, to remind myself to be grateful, and during the challenges.β
Donβt like whatβs happening? Few patients do. But just as with cancer or other life-threatening diseases, pretending itβs not happening only makes it worse.
βEverybodyβs going to be inconvenienced by this,β Roy said. βWith cancer, we understand what thatβs like. I lost six months, a year to it. So far, anyway. Itβs OK to miss out on stuff right now and go inward. Thatβs what you do with a disaster and with cancer.β
Be prepared, not panicky β and pace yourself
Kristin Kleinhofer, a 45-year-old patient advocate from Oakland, California, went through numerous treatments for her leukemia, including chemotherapy, a Fred Hutch immunotherapy trial, and a stem cell transplant. Avoiding infection is standard operating procedure.
βItβs extreme, particularly with a transplant,β she said. βYouβre living in a bubble β staying away from people, only going out if necessary, wearing a mask, sanitizing everything constantly. All the things theyβre recommending now. People are freaking out because they have to be inside for three weeks. Cancer patients do this for months, for years!β
Her advice? Stay positive, stay focused, and stay informed.
βAttitude is huge and knowledge is power,β she said. βRight now, itβs good to educate yourself, but you want to find the right resources and avoid stories that feed into the panic. The more informed you are, the more youβll feel in control of whatβs happening.β
Pacing yourself is also key.
βI feel like Iβm back in survival mode here,β said Liza Bernstein, a 54-year-old artist, patient advocate and three-time cancer survivor from Los Angeles. βBut you canβt do it all at once. You have to be able to prioritize. Itβs important to remember what we can and cannot control.β
Her advice for those dealing with the sudden stress of social distancing and looming disease?
βTake this moment to moment, hour by hour,β she said. βItβs one of the mantras I used to get through the tough treatment times.β
Cathy Leman, a dietitian, nutrition therapist, and 59-year-old breast cancer survivor and cancer guide from Glen Ellyn, Illinois, said to focus on the things you can do, not what you canβt.
βIt helps to control what you can,β she said. βFocus on food, sleep, exercise, getting outdoors, and challenging negative thoughts.β
Learning to live with uncertainty
Cancer patients and caregivers, by necessity, have to become adept at living in limbo. Will the cancer come back? We donβt know. Will we be alive in two years? Again, undetermined.
Itβs maddening. Itβs also a way of life.
How do patients maintain their equilibrium when the ground starts to shift, as itβs been doing since the pandemic hit?
A 39-year-old Washington, D.C., woman who asked that her name not be used because sheβs not public with her metastatic cancer status, said she turns to nature to help her stay balanced.
βWalking outside reduces my anxiety,β she said. βI go to nature for a walk. I meditate and call my friends and family and laugh together. I also sleep long hours and donβt watch a lot of television.β
Tambre Leighn, aΒ certified professional coach from Los Angeles, said sheβs been using βevery darn tool I have to stay groundedβ during the COVID-19 crisis, just as she did while acting as caregiver forΒ her late husband, who died of Hodgkin lymphoma in 2001.
ββThis too shall pass.β These words soothe me,β she said. βI use them when life is great, to remind myself to be grateful, and during the challenges.β
Anxiety-busting strategies from cancer patients
- Β I listen to a lot of rock and roll. And disco. I love music, period, but mostly happy, upbeat music that makes me dance and feel like a teenager again. β Breast cancer survivor Cari Roy
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DarkΒ chocolate. ItΒ boosts your immune system. And makes you happy.Β β
Inflammatory breast cancer patient advocate Ginny Mason - Take time every day and count your blessings.Β Write out five of them every day.Β They can overlap but keep them nearby so you can visually see them and remind yourself how blessed you really are.Β β Lung cancer survivor Randy Broad
- Stick to your routine as much as possible. Get outside β fresh air works wonders. And read. Iβve got a stack of books. Pets are a godsend, too.Β β Breast cancer survivor and blogger Nancy Stordahl
- Youβve got to stop watching the news. Only check-in twice a day. Try and meditate and think about your happy place.Β β Breast cancer survivor Susan Ruddick
- Enjoy the gift of time. Seclusion gives people the opportunity to get away from their busy lives and focus on whatβs really important, what really matters. Itβs not your job or your car or your clothes. Itβs your health and your loved ones.Β β
Leukemia survivor Kristin Kleinhofer
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 βincredible resilience.β
βSo many of us are grappling with the initial affront and lack of control,β she said, regarding the current crisis. βIβve been struck by how my patients find strength through uncertainty, how they use it to crystallize priorities for living each day.β
Fred Hutch psychologist and patient outcomes researcher Dr. Salene Jones described resilience as the ability to adapt to stressful events.
βA person can be sad, unhappy or stressed, and still, ultimately, be resilient,β she said, pointing to resiliency tips recently published by the American Psychological Association. βResilience is not the absence of feeling stressed but finding a way to cope with it. Itβs OK to be a mess sometimes. Just not all the time.β
Stay connected with others β and yourself
Cancer patients have also been staying connected, while apart, for years.
#BCSM (short for βbreast cancer social mediaβ) 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.
βItβs easy to become isolated and lonely,β said Renee Kaiman, a 38-year-old metastatic breast cancer patient and mother of two from Toronto, Canada. βRight now, itβs good to reach out to people via FaceTime or have phone calls. Try to do things you enjoy to keep your mood up.β
Staying connected with yourself is also key, especially when dealing with isolation and angst.
βThis is a great time to explore creative projects, to listen to music, to try new recipes theyβve never tried before,β Kleinhofer said. βWe canβt control whatβs happening right now, but we can control how we respond to it. Things may seem crazy but every day thereβs something to be thankful for. Find what makes you happy and focus on that, whether itβs family or friends or the sound of birds chirping outside. And if you start to spin out of control, thatβs when yoga, meditation and mindfulness can come into play.β
Leman, who had to celebrate her birthday in quarantine, decided to throw a βglobal virtual dance partyβ (she also danced daily during her cancer treatment). Now itβs become herΒ daily routine.
βIn times of uncertainty, we can always count on the predictable rhythm of music,β she said. βMovement soothes, alleviates stress, moves emotion through and out. We need that now more than ever.β
Breast cancer patient Dennis Keim, a 66-year-old retired teacher from Lincoln, Nebraska, said heβs using his newly mandated alone time to learn a new instrument.
βI ordered a ukulele for self-isolation days to come,β he said. βMy goal is to be able to play this late 1890s-era tune. I love those old, largely-lost-to-history tunes.β
Jones, the Hutch psychologist, emphasized the importance of coping with stress in such positive ways.
βDo things that help you,β she said. βFor someone thatβs extroverted, that could be regular FaceTime calls with friends and family. For others, it could be exercise, meditation, or reading a book. Find what makesΒ youΒ feel better.β
Embrace empathy
Even in the midst of cancer, people look for silver linings. Thatβs no different for COVID-19. Some believe others will gain perspective.
βOne thing that helps me is to remind myself that many friends with metastatic cancer practice social distancing, and even self-isolating, every day,β said breast cancer survivor Nancy Stordahl, of Menomonie, Wisconsin. βTheyβre used to taking precautions and being extra careful. It may be hard for us, but itβs part of their daily lives and always will be. It kind of puts things in perspective.β
Ghecemy Lopez, who now works as anΒ advocate for underserved patients, was diagnosed with breast cancer at the age of 30, then thyroid cancer at 32. Now 39, sheβs living withΒ 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.
βI used to get comments from people who thought I was βexaggeratingβ my immuno-related issues,β she said. βNow 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.β
Kleinhofer sees signs of that already.
βIβve seen people sharing amazing resources,β she said, pointing to theΒ museumsΒ andΒ performancesΒ that are offering free livestreaming as well as authors, artists and celebrities providing onlineΒ doodling lessonsΒ andΒ readingsΒ for kids. βHealthy people on [the neighborhood website] Nextdoor are offering to get groceries for those who are elderly or immunocompromised. People are stepping up.
βYou see that during a cancer journey and in times of crisis like now,β she said. βYou see the pure beauty of the human spirit.β
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs atΒ doublewhammied.comΒ and tweetsΒ @double_whammied. Email her atΒ dmapes@fredhutch.org.
Republished with the kind permission of theΒ Fred Hutchinson Cancer Research Center

Diane Mapes
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications.
Caption:
Even in the midst of cancer, people look for silver linings. Thatβs no different for COVID-19. Some believe others will gain perspective.