The Brain Tumor Community’s Unique Perspective During COVID-19
While the world is facing a global pandemic and adjusting to the new normal, brain cancer patients are going through the same challenges while also facing the harsh reality of their diagnosis. Anxiety-inducing events, such as routine MRI appointments are having to be attended alone due to hospital visitor restrictions. Some caregivers are dropping their loved ones off at the hospital for surgery not to see them again until they’re discharged days later. Many patients are relying solely on pick-up services for groceries and medications, and most are having to cope without face-to-face interaction with their family and friends. Despite these challenges, the brain tumor community continues to demonstrate resilience and for many, they feel their diagnosis prepared them for what the world is currently going through with COVID-19.
We asked our network of brain tumor patients and caregivers how they’re navigating the world’s new normal and what kind of advice they would like to give to anyone facing hardship in their life. We hope that their feedback will help others feel less alone and give strength to those who need it the most.
What strategies have you found helpful in coping with the additional stress and self-isolation of this pandemic?
“My beautiful wife has been great at talking with me about everything which helps a lot with stress relief.” – Nathaniel, Survivor
“Video chatting with loved ones has been wonderful! Getting outside, taking walks, playing with the kids and trying to keep some sort of routine has helped our family. Also, lots of baking. When it gets tough, we try to remember that by staying isolated, we’re doing our little part to keep ourselves and others healthy.” – Abby, Caregiver
“I’m grateful to have the practice of yoga and a strong faith in God. Through prayer and meditation, I have found an abundance of peace.” – Heather, Survivor
What are you doing to stay connected to friends and family while practicing social distancing?
“Zoom meetings, Facetime with multiple friends, social drive-bys to a friend’s house to say hi but staying in the car and keeping at least 10 ft of distance. Lots of text messages. Facebook messages and Facetime through FB as well. Walks in our neighborhood have been helpful in meeting new neighbors I have never met before.” – Oscar, Survivor
“I am making lots of calls to homebound brain buddies. I send texts just to check on people. I have increased my card-sending by over 50%. Social media time has increased. I check up on my family with phone calls and my 96-year-old grandma I visit through the glass at her care home.” – Lanette, Survivor
“Texting, Facetiming and sending cards of encouragement.” – Melanie, Caregiver
Do you feel as though cancer has prepared you in any way for what the world is experiencing right now? If so, how?
“I’ve heard some friends say that they have a whole different perspective on life and what’s important after being a few weeks into this pandemic. I think a cancer diagnosis does that too — it changes your perception of life, and what matters most in life. You don’t take the small stuff for granted and I think many are experiencing those same realizations right now. Since our family had that “switch” happen three years ago with Ian’s diagnosis, in some ways yes, that primed us to better handle and cope with other challenges down the road like this pandemic.” – Abby, Caregiver
“Absolutely. The past 4 years have trained me to be resolute and incredibly resilient. I’ve battled through 8 brain surgeries in 4 years. Chemo/radiation seeds. I find that if I am still alive and thriving from something that’s been trying to kill me, I feel confident I can weather this storm of the virus. Specifically, my attitude. The ability to stay sane while socially isolating myself from the world. I keep reminding myself of the positives of it. Moreover, health-wise, I’ve been on a strict keto diet, rigorous exercising, and organic healthy eating for some time now. I’m confident my body would be resilient if I would contract the virus. In essence, I’ve been through so much, I’d like to think I’ve hit rock bottom, so dealing with this obstacle is something I’ve been equipped to handle.” – Oscar, Survivor
“Definitely. It reminds me exactly of how I felt when I first got diagnosed. I remember feeling like the world I once knew didn’t exist anymore and nothing will be normal again. I learned however through all the time that passed that there is such a thing as a new normal. It gave me comfort in dealing with what is happening now because I can see that a new normal will again happen. Also the isolation that all of this has brought on the last couple of months reminds me of how I felt when first diagnosed, the difference is this, I am experiencing with the whole world, which in many ways is so much easier and harder at the same time.” – Melissa, Survivor
As a brain tumor patient/caregiver you’ve likely had to face a lot of unknowns along your journey. What advice can you give to those struggling with the uncertainties that accompany this pandemic? Have you adopted any unique coping mechanisms?
“Taking things a little bit at a time. Most people know some days are better than others. My previous radiologist at Barrow also reminded me that ‘some parts of days are better than other parts.’ A coping mechanism is accepting the feelings that I am feeling are real and stem from somewhere.” – Nick, Survivor
“It takes someone brave to admit they are struggling. Suffering in silence does not make you a hero. I think if you reach out to a friend or someone professional it will help and empower you to help others.” – Lanette, Survivor
“Panic, worry and irrational behavior only feeds fear. It’s important to accept that we cannot control what is happening, but we CAN control how we respond. That is where our power is and we should be intentional with it.” – Andy, Survivor
“Find something good in every day to celebrate. Attitude is everything and we are choosing to get busy living…in spite of our circumstances. Life is precious.” – Melanie, Caregiver
“Don’t ever give up or lose hope and don’t let fear consume you. You are stronger than you know and tell yourself that daily! You are a warrior!” – Heather, Survivor
“Only focus on what you have control over — the biggest lesson I’ve learned in the past 4 years. I had the ability to combat my disease through nutrition/exercise/research. Similarly, for COVID-19, stay at home/listen to the guidance of using masks/gloves, eat healthy etc. Better to use time/resources on those things you can control vs the death count/politics/# of contracted cases. Look for the silver linings. As we don’t know how long this environment that we’re in will last, it’s best to look at the things that have improved since we’ve been tasked to stay at home. Similarly, with brain cancer, instead of looking at it like a death sentence and pain it has given me, I tend to focus on how it’s given me new purpose in life to help others combat their disease. It’s given me perspective on how important life really is and to focus on the important things (i.e. family/friends/home) vs trivial things (i.e. work stress, traffic, Mondays).” – Oscar, Survivor