When I was first diagnosed with breast cancer back in 2017, one of the major changes I noticed immediately was a lack of control. For someone Type A like me, this lack of control was a big difference from how I usually live my life and the adjustment has been really hard. Actually, if I'm being strictly honest, I'm still adjusting, years later. What I have found is that there are some things I can control and adjusting appointments or medication or details of how things happen has helped me regain some small parts of that control.
And then COVID-19 happened.
Impact on the medical system
Overnight, the medical system that I'd finally started to understand a little better and that I'd started to mold into what I needed, changed. Overnight, there were new rules. Overnight, there were new protocols. Overnight, I had to jump through extra hoops in order to get done what needed to happen. Overnight, there was a sense of danger and fragility and scarcity. Overnight, it wasn't what I needed to do or not do, but what others were doing or not doing.
During this pandemic, I've seen quite a few memes pointing out that the fear and anxiousness and precautions that are mandated worldwide are those that we cancer patients have already assimilated into our daily lives. And yes, we've long adjusted to those very things, especially those of us who are immunocompromised; however, despite the things that we are able to apply from our cancer experiences to this pandemic, we have lost a great deal too.
People forget that we have been given a shorter life expectancy and that we want to make the most of the time we have left. Those of us who are terminal now get to grapple with the loss of experiences that make it feel like the life we have now is worth living. Trips, spending time with people who are important, attending conferences to reconnect with our community, and things that make us feel "normal" -- getting a haircut, a manicure, a massage, etc.
The lack of those things that make life easier is more difficult for us; more profound.
Returning to life as we know it
Others will return to life as they knew it. Others will go back to work. Others will go back to school. Others will reconnect with their loved ones. Others will reschedule trips, reschedule grooming appointments, etc. Will I live long enough to make up what I've missed during this pandemic? I don't know the answer to that question, but I doubt healthy people are asking themselves this question with any degree of seriousness.
What I think is universal and just a matter of degrees is the feeling of helplessness. We are all helpless to a certain extent when it comes to COVID-19. Sure, there are some things we can all do to limit our risk, but we can't see the virus. We can't avoid it 100% of the time. There are rules that are changed, limitations, social distancing, that are out of our control. We are helpless in the face of these new rules. The whole world is. The whole world is feeling that same sense of helplessness.
And so, what to do with that sense of helplessness? Here are some things I've done to combat the feeling of helplessness in the world gone mad:
- I schedule Zoom calls with friends far and near - My husband and I moved from Orlando to Miami in October of 2017. In all that time, I've seen old friends from Orlando when I traveled but haven't had many calls and definitely no video calls. Now, I'm remedying that.
- I'm writing letters and sending cards in the mail - When I was younger, I exchanged letters regularly with my grandmothers. This was a lifeline for me while away from home, a reminder of my family, and that they love me. Not only am I participating in a formal pen pal program through Wildfire Magazine (an amazing publication with a rockstar for an editor), but also reconnecting with other friends.
- Through some friends and the online support group that I admin, I've scheduled zoom support group calls for stage IV ladies - My cancer center also finally listened to me complaining and started a stage IV support group. Attending these support groups, asking for help and giving it, talking about what's going on, this all helps.
- I get out of the house - We live in a small community and they've closed many of the amenities - the pool, tennis courts, marina, etc. They haven't closed most of the walking paths or the small beach. My boys and I take advantage of the fact we live in Florida by getting outside.
- Distance learning - While I've moaned a little about all the time I'm spending doing distance learning with my first grader (common core math sucks!) and my PreK kiddo (he NEEDS to run frequently), I know that this time I'm spending with them does alleviate any feelings of boredom. When I do have downtime, I mostly want to nap, which I'm doing nearly every day.
- I made sure that I have a 90 day supply of all my meds - I keep hearing about shortages of various meds and I took advantage of the fact that when there is a natural disaster like a pandemic, insurance companies are required to be more accommodating in terms of refills. I feel better when I know that I won't be worried about my medication.
- With my families' help, I've been able to delegate all of the activities that would put a person in our household in contact with the public - I only go to my cancer center for things like infusions or bloodwork. Limiting my exposure to possible carriers of COVID-19 means that I can breathe a little easier.
- For me, writing about my feelings helps me to deal with them - Even though there's lots of stuff going on, I've stuck to my blogging schedule and I joined a writing workshop run by the editor of Wildfire. Lacuna Loft also has some great writing workshops!
- I give myself permission to not finish things - If we can't finish science one day or my kiddo doesn't want to read the whole book or I just don't feel well, we give ourselves breaks or permission to just do something tomorrow.
- I try to find the silver linings, the good things to focus on - For instance, since I'm not jumping out of bed in the morning and doing all the things that need to be done to get my kids ready for school and all the morning stuff, I haven't had to take as much pain medication. This is huge for me since I never wanted to take oxycodone but my pain level demanded it.
What steps are you taking to take care of yourself during this pandemic? Has anything been more difficult to access? What's one thing you wish you had not done during this pandemic? Share in the comments below!
Editor’s note: This article was published on May 13, 2020. Further developments in what we know about COVID-19 are continuously emerging. For more information about COVID-19 and strategies for coping, visit Advanced Breast Cancer and COVID-19.
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