When Your Bucket List Gets Kicked By COVID-19
I'm going to say the thing that we’re not supposed to say, but is the truth of what we are dealing with: we don’t have to smile through COVID-19 - it’s okay to be upset, it’s okay to feel hurt or more alone than usual.
It’s okay to be upset
It’s okay to be upset that your support person can’t be in your treatments or appointments to support you or hold your hand when you’re getting that bad news. It’s okay to be upset that your support person has to wait in the car for 4 hours after agreeing to drive you an hour each way to treatment without a clean restroom or place to go that they won’t be exposed to a petri dish of germs they with likewise expose you to on your travels home. It’s okay to be upset that you feel more alone, that you can’t access physical therapy or integrative medical services that manage pain or side effects (like acupuncture or massage). It's okay to admit you miss meeting your support group in person; there is something special with seeing someone who knows what you’re feeling face to face.
It’s okay to admit you miss that hug from your nurse on a bad day in chemo or physical touch from someone outside of your home. It’s okay to be upset that you miss your life before this pandemic; and we need to quit pretending - it’s okay to not feel okay.
It’s okay to feel lost
It’s okay to feel lost. It’s okay to be afraid when you hear you have progression in a room by yourself or over a phone call. It’s okay to be upset that the best option you had to treat your cancer is in a clinical trial that has suspended their enrollment (believe me - I know this one way to personally). It’s okay to cry when you find out you’re severely allergic to the treatment you had to try because you couldn’t access your trial (again something I’ve known personally). It’s okay to feel devastated when you realize you’re running out of treatment options and that the research you’ve been waiting on may be unattainable because the donations that researchers have been relying on to conduct research have stopped coming in because the people and companies that were donating, can no longer afford to give.
It’s okay to grieve canceled plans
For some of us, the goals we set for ourselves that have been motivating us through treatment are the very things that COVID-19 has taken from us, and it’s okay not to be okay with those things being stolen.
Parents who have made goals to stay alive to see their children graduate this year are being robbed of seeing their students walk across the stage to be handed their diplomas or degrees; those of us who have been saving and pushing through to make it to that bucket list trip this year are left wondering if we will ever see the far off places we’ve been longing to experience in person. Regardless of what COVID-19 has taken from those goals we’ve been looking forward to, the reality is for some of us, waiting until next year (or until there is a vaccine) makes some of our dreams, just that; dreams.
When I was on the Vaporetto last year, watching the Venetian sunrise over the lagoon, my heart couldn’t help but break; would I ever see this sight again? My favorite city in the world disappearing in the rearview seemed more precious this time. When I was lucky enough to book a return trip to Italy in January for September of this year, to see it subsequently in limbo after COVID-19 closed international borders for travelers, it was my first big disappointment of the year. Do I wait and see if the border reopens or do I cancel the trip that I may never get to rebook? The fact is I’m dealing with progression on my 9th line of treatment. I want to be positive and think the best - that I’ll see 2021, but we can never know with this disease. On top of Italy, the other things I look forward to every year have either been canceled or are in limbo and may be canceled. It’s hard to find things to hope for when the things you hope and plan for keep getting canceled.
We’re not all in this together, but that’s okay
Even beyond plans being canceled, far more difficult decisions are being made by many. The cost of the life impact of this disease is impacting and in some cases devastating some families. Questions of not just paying for food or ways to stay connected to support (ie cell phone bills or internet connections), but questions remain if layoffs of spouses and caretakers who were supporting themselves and the patient they have been supporting who are on disability will lead to greater housing or food insecurities; leading to the questions of regardless of if treatments are available to extend or improve life; can they afford it while trying to hold on to the things they need to live from day-to-day. With charities losing donations that once supported families like these; some patients are left to wonder if the safety nets we’ve become accustomed to will be there when we need them.
Hearing a person who is generally healthy say “we’re all in this together” feels minimizing. The fact is though we are all experiencing disruptions in our lives, some of us are feeling them greater than others; especially those of us on borrowed time. In a way, when we hear someone who is healthy with years ahead of them saying that popular phrase "we’re all in this together" feel less and less genuine. The fact is, we’re not. Those of us living on borrowed time, those of us who are beyond the average 36 months, or the 20 or so percent of us who have lived past the 5 year statistic of metastatic breast cancer sometimes have a hard time imagining what a year or two in the future looks like. Don’t tell us we will have another chance, maybe we will, but in reality, time is not on many of us with advanced or metastatic cancer’s sides.
Let yourself feel what you feel
So when it comes to COVID-19, my friends; It’s okay not to be okay. Let yourself feel what you feel, and don’t ever let anyone shame you for feeling not okay while living in a COVID-19 tainted world.
Caregivers: Do you practice self-care?