This is my experience with Cancer during this pandemic. Each person's experience will differ based on location, timeframe of diagnosis, and specific diagnosis.
When I started this blog a year ago, I had no idea where 2020 would lead me. Here we all sit in uncertain times, unchartered waters. When we all celebrated the New Year in January, none of us could have predicted what this year would bring, especially me.
Cancer is a hard pill to swallow. Your entire world is turned upside down when you are told you have it. Everything changes. You are brought in a room, given a binder with resources, and assigned a whole team of doctors that each have a role in your care. Meanwhile, you’re head spinning, trying to process what you’ve been told. They start to explain your team. You have a nurse navigator, who is there for you from diagnosis and until it ends. His/Her role is to support you with acquiring resources, setting up appointments, getting transportation to appointments, insurance issues, billing issues, and just general support. You have a general surgeon. His/Her role is to remove your cancer. You might have a plastic surgeon (self explanatory). You have a medical oncologist. They are the ones that manage your chemotherapy and other medicinal therapies (hormone, targeted, etc). You have a radiation oncologist (self explanatory). This team becomes your lifeline. You go to them for everything. And the list of resources you are provided is unbelievable. It is more than you can take in. More than you can comprehend. Everything from support groups (In person and online), to free cleaning services, to free wigs, to support groups for the kids/teens, to Facebook groups, to free classes on makeup and caring for your skin. Everything you could possibly think of is listed in the binder. There are so many resources available to cancer patients.
Well, there were until Covid-19. So let’s talk about Cancer during Covid. Hospital policy has changed and visitor and volunteer policy has changed as well. My first surgery was to remove my cancer. Only my husband was allowed to be with me or in the waiting room. Nobody else was permitted to be at the hospital. So he had to sit and wait alone while I had my surgery. It was an agonizing decision on what type of surgery to have, but my surgeon told me we needed to move quickly (I had an aggressive tumor) and get it out now and I could always go back later when the Covid situation isn’t threatening to shut down surgeries and possibly push my surgery back. Then my post-op appointment was virtual. At this point, our entire state was under phase 1. All elective surgeries were cancelled. All regular checkups with doctors, pediatricians, dentists, etc were cancelled until further notice. So, my post-op was virtual because it was safer to conduct it that way than have me seen in-person. I had never done a virtual doctor appointment before. This was my first and it was for a follow up on surgery. And I knew she would want to see my incision. How would that work virtually? Was that safe? Would she be able to tell if something wasn‘t healing right? Would she even be able to see it properly? And was I really comfortable showing that through a screen? Then I had to have PT for my arm from the lymph node removal. That was in-person, but very different than any PT I’ve experienced before. I was instructed to wash my hands and then wisked into a private room where only the PT and I were at. She was wearing gloves and a mask At each session, the entire session. My entire PT went like this. In the office, every other chair was turned around so people wouldn’t sit next to each other. I was scheduled for PT all the way out so that I wouldn’t have to have contact with additional people on my way out. And the PT room was ghost town. There really was only one other person there each session in the main area. If there were more people, they were in private rooms like myself.
My initial consult with my radiation oncologist was done as a televisit. As of this post, I still haven’t met my radiation oncologist in person. Then the medical oncologist appointment came. That required me to answer all the Covid questions and have my temp taken before I could even enter their office door. I was kept in the corridor as I answered the questions, had my temperature taken, and deemed safe to enter. That is the protocol still.
Then on May 1st I was scheduled to have my port placed. I received a call a few days prior from the hospital for normal check-in routine, or at least I thought it would be normal check-in. I was then informed that due to new hospital policy I would be required to have a Covid-19 test two days prior to my surgery or they couldn’t do it. I must come alone to the drive-thru Covid testing center at the hospital and have it completed by that Wednesday morning. This is where the impacts of Covid-19 started to really take effect for me.
I went to the drive-thru site and had the test done, alone. Two days later, I went to the hospital with my husband. This was an outpatient procedure and I would be under conscious sedation, so I required a ride and was told my husband could escort me. We entered the hospital that morning and he was told he couldn’t enter with me. I argued and told them that I needed a ride home due to my procedure. They turned him away anyway. So, again I was alone. I had to go into the hospital, to the check in, to the back to prep...alone. I had to wait until they were ready for me, alone. I came out of surgery and was alone. I got myself dressed alone. I had a very kind nurse who took very good care of me before and after, but I still felt alone.
Then I received my chemo education via phone because it was safer and better for the office to keep patients inside at a minimum. My oncologist assured me at my appointment that my first chemotherapy session I could bring one person because there was no way of knowing how I’d react to the meds and for my own comfort and psychological well-being it would be good to have a friend or family member with me. But then, Covid took that away too. Suddenly, no visitors or volunteers were allowed in the chemotherapy center. Beginning the week before my first treatment, it would be patients and staff only, no exceptions. So I walked into my first chemo treatment alone. I have completed three sessions as of this post alone. Each of those treatments has brought a change. The first time, I was alone, but not required to wear a mask. In my state, wearing masks started in late May. Some of us have treatment that is quick, just a shot and we leave. Some of us are there for 4+ hours and are now wearing a mask the entire time. When I went for my second treatment, these partitions had been installed between each chair creating a barrier between patients. And for my third treatment, the mask, the partitions, and new restrictions on the waiting room and distancing in the lab were put in place. I had to have my blood drawn in the hallway that day.
My first treatment...completely alone.
From my 1st to 2nd treatment, plexi partitions were installed from the ceiling between each chair.
Me, during my 3rd treatment
The chair at the intersection of two halls, outside the lab, where I had my blood drawn.
Now, let’s look at those resources that are available. The classes that teach you how to do your makeup, proper skincare, and deal with the changes that happen to your skin, all cancelled. Nothing in person being offered. There are some virtual ones, but the difference is the in-person ones are catered to your specific needs and the virtual ones are not. The boutiques that offer free head coverings and wigs. They are run by volunteers, so they are closed. I’ve been on the waiting list since April and it’s now July. Free house cleanings for those going through chemotherapy were not available because of the closures. And now, well, it isn’t deemed safe to allow people in our homes. During chemo, the treatment center is usually filled with volunteers, or so I’m told. I never got to experience the center with the volunteers. When I started treatment it was already empty, depressing, cold...patients and staff only. But I’ve heard the place was awesome before, if you can call a chemo center awesome, with the volunteers. They passed out sandwiches, drinks, snacks. They even sat and talked with patients, read with them, played games, and did other things to keep the treatment off their mind.
As if having cancer wasn’t hard enough, Covid-19 has robbed cancer patients of so many of the comforts and things needed to keep their spirits up during treatments. So many of the things needed to keep us going day-to-day have been taken away. Something as simple as a free wig can really be a huge help and boost for someone. Someone, like me, for example who has no idea where to start with something like this. A free fitting, in a safe space with volunteers who have dealt with this themselves and will be sensitive to my situation, and know how I’m feeling, even if I don’t. Something like that is the best treatment a cancer patient can receive right now.
But, we are all learning now how to do this without any of the resources, volunteers, and supports we should have. We are battling cancer like we have never had to before. But, make no mistake, we will fight and win this battle still!
Please note that my friends and family have been awesome during my journey. They have stepped up in ways I could never have imagined and I’m so thankful to have them. I am blessed to have them as a resource, but not everyone is so lucky and relies on the resources offered that are on freeze right now due to Covid-19.
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