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By Vicki Strong
3/21/20
 
First of all, breathe!  As cancer patients and caregivers, this is not totally unfamiliar territory.  Most of us have learned a lot of coping skills that serve us well in these uncertain times.  We have been here before – canceled plans, social isolation, fear, financial insecurity.  We are maybe better equipped than most people to navigate this crisis.  Rely on those skills…  
 
Here are some specific recommendations for coping during the pandemic.   
 
Keep It In Perspective
 
The American Psychological Association has five hints:
 
  1. Keep things in perspective.
    Follow recommendations by the CDC for your own safety and the safety of your family to reduce your risk.  This is one thing you DO have control over – reducing risk by changing your lifestyle for now. Remember, this is a temporary situation that will eventually abate.    
  2. Get the facts.
    Make sure you are listening to and reading reliable sources (see Stick to the Facts below for more information). With regard to your own situation, contact your primary physician or your oncologist with questions.
  3. Communicate with your children.
    Be honest, but don’t share more than you need to.  Turn off the evening news.  You need to be aware of what is happening, but you don’t need to be constantly bombarded, either.
  4. Keep connected.
    Use Facebook and other social media to reach out (not to glean “facts”).  Make phone calls.  Try to keep schedules by sending Emails or setting up Facebook video chat or Zoom for meetings.
  5. Seek additional help.
    Whether your needs are financial, spiritual, physical or mental health, help is still out there.  Don’t hesitate to ask.
Stick to the Facts

Maybe the biggest challenge for all of us is to separate fact from fiction with regard to the disease itself.  In the U.S., the best information is going to come from the Center for Disease Control.  This comprehensive site contains information on everything from symptoms and treatment to community safety to how to best protect yourself and your family.  It is constantly being updated.
 
 
Treatment

Current cancer treatment and scan recommendations are evolving as medical personnel measure the impact of Covid 19 on those with cancer. 
 
If you have had a scan or treatment delayed in recent days, you are not alone.  Many scans and treatments are being put on the back burner.  A recent article in MedScape, https://www.medscape.com/viewarticle/927215, brings the issue to light. 
 
We’re headed for a time when there will be significant disruptions in the care of patients with cancer,” said Len Lichtenfeld, MD, deputy chief medical officer of the American Cancer Society (ACS), in a statement. “For some it may be as straightforward as a delay in having elective surgery. For others it may be delaying preventive care or adjuvant chemotherapy that’s meant to keep cancer from returning or rescheduling appointments.”
 
Do not be surprised if you get notification of cancellation of routine scans and even of adjuvant chemo or radiation.  The risk of Covid 19 to those with cancer, especially when they have compromised immune systems, is greater than the risk to the general public. 
Your doctor or clinic is measuring which is the greater risk to you. 
 
If you disagree with a decision that has been made, as always you have a right to speak with your oncologist.  Call, send an Email, or request a video conference if your clinic has that capability.  Ask for the big picture. 
 
The most helpful thing is to remember this is a temporary response in a crisis.  We have no reason to believe what we are seeing now is “new normal.’  All logic says that scan and treatment schedules will return to previous schedules when the crisis is over.  
 
The American Society of Clinical Oncology has published recommendations that are being regularly updated on their website, https://www.asco.org/asco-coronavirus-information/care-individuals-cancer-during-covid-19.
 
Stay Connected

Even for those of us with tried-and-true coping skills, this is a trying time. Staying connected is important.
 
Reach out to family and friends via phone calls or social media.  Set up a weekly (or more often) teleconference (as simple as a Facebook video chat) with your family.  It helps to see their faces and hear their voices and know they are all OK. 

Continue support groups, book clubs, Bible studies, etc., via voice or video chat, or in a weekly Email to all members.  “Go to church” every week via a live feed. If your church does not have live feed, it is easy to find one that will fit your need for spiritual nourishment.

Stay on routine with physical activities as much as possible. Many gyms and fitness chains offer online downloads of exercise routines.  Many individuals who work in gyms or studios are continuing their fitness teachings on social media.  Reach out to your friends in the business, or your fitness trainer.
 
Use your new free time for self-improvement.  Explore the arts with virtual gallery tours, website download theater classes or performances and free concerts online.  Libraries are posting free downloads of popular books.  The world is at your fingertips, with websites such as https://www.iflscience.com/editors-blog/going-stir-crazy-in-self-isolation-travel-the-world-from-your-couch-with-these-virtual-field-trips/?fbclid=IwAR1iyOMldTaIwUOe_7E4_9LYL-_zO_YDeDo91re6dbOH4Z3GqbD7RMEMypI. 
 
Go outside if you are able.  If your area is not on total lockdown, take a walk around your neighborhood.  Write encouraging messages in chalk at the end of your driveway.  Talk to your neighbors over the fence or across your balcony.
 
Be an encourager.  Write cards and notes to people in senior housing or nursing homes. Have sandwiches delivered to your nearest police or fire station. Send personal notes to your health care team; they are working extra hard and making difficult decisions.
 
If you are in good health, look for volunteer opportunities in the community. Organizations are still looking for volunteers, primarily to help distribute food to people in need.  Procedures are in place to keep volunteers at recommended distances from each other to reduce spread of the disease while still keeping the supply chain going.
 
Get Help 
 
For still more information on how to keep yourself emotionally well during this crisis (and any time), visit the American Psychological Association website, www.apa.org.
 
Last of all, join a sarcoma support group in Facebook to connect with others with LMS.  LMSDR sponsors a very active group, www.facebook.com/groups/lmsdr. We welcome you there if you are an LMS survivor or immediate caregiver.  Please be sure to answer the questionnaire in full that will be sent to you by Facebook when you ask to join the group.
 
We will be waiting for you there.    
 
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