Many patients with cancer and their caregivers have already had to live through their own forms of social distancing during intense treatment journeys. These lessons can provide perspective on the current COVID-19 pandemic and social distancing.
I was not prepared for so many things when my sister was diagnosed, near the top of that list would probably be the rules and restrictions that would follow. Neutropenia meant that she was not allowed to eat out anymore, that a sniffle from a friend meant they were not allowed to visit and she wore masks so often that I used to decorate them for her. Even having navigated our way through neutropenia, the quarantine both during and after her bone marrow transplant was its own beast.
After nearly three years of battling cancer, in January of 2015, my sister received a life-saving autologous bone marrow transplant. Leading up to that day, she fought multiple infections and was given Neupogen to help stimulate her cells in preparation for the transplant. While having cancer, we had always tried to be cautious about her getting sick, but between her approval of transplant at Thanksgiving and January, I was on edge. Gaining remission had been supremely difficult, and her team was uncertain as to how long she would remain in remission. That meant any delay in transplant from an illness might mean her not receiving the transplant.
As the country now tries to social distance because of the COVID-19 pandemic, I know that many enduring cancer have done the same thing my sister and I did. During the lead-up to her transplant, my sister did not leave the house save for medical appointments and we banned any visitors. In essence, my sister was practicing social distancing before it was a hot topic.
When she was at inpatient, I lived at the hospital with her. Not only was it done for convenience as I was her caregiver and power of attorney — but also because of concern that I would carry infection if I continued to come and go. While I was not susceptible to disease at that time, she very much was. That continued to be true after her transplant as we transitioned from the hospital into a local hotel within proximity to the hospital for a 90-day quarantine. Again, a common occurrence for many patients enduring transplants.
Quarantine at that time was not something that others understood. People asked if they could visit, and except for vetted friends for her birthday that doctors approved, they could not. When I went shopping I had to wipe clean the products before bringing them into the hotel room. I left my shoes outside. Clothes that we wore out were bagged and washed the same day to prevent contamination of our "safe space."
That time was incredibly challenging for the two of us. Cancer can impact one's mental health and being socially removed for months can worsen mental health. As a caregiver, not being to leave her for long periods wore on me and took both a physical and psychological toll on me. About a month into her transplant process, her physicians and my close friends stepped in and encouraged me to reframe quarantine.
So, as many cancer patients and their families now face undetermined lengths of quarantine due to COVID-19, I want to share some advice that helped me endure our quarantine.
First and foremost, you are not trapped.
Yes, you need to practice social distancing, but that does not mean you cannot leave your house. Get outside and enjoy nature. Sunshine does so much for one's mental and physical well-being. Utilize time inside as if you are not stuck there. I took up yoga, something that I could do while being in the same room or just a room away from my sister. We built puzzles and created game nights. We played a game of recreating our favorite restaurant dishes at home. If you are the caregiver, take time for yourself. It was during that time that I became a contributor to CURE®, I wrote and journaled and found doing so to be cathartic.
I am not suggesting that quarantine is without its challenges, but I believe perspective is essential. We cannot change the situation, but what we can do is try to place focus on the good. We can make the most out of the situation before us, and in doing so, we can get something new from a situation that we may otherwise only view as having taken something from us.