I’ve written before about the Fear of Missing out or “FOMO” as it pertains to parenting and the limitations of MBC that affects my ability to actively and physically participate in life with my children. Thanks to COVID-19 and the pandemic, we’re definitely drowning in family time right now. At the same time, the lack of traveling and interacting with others in the metastatic community has affected me in a different way.
When I was diagnosed with Stage IV metastatic breast cancer in 2017, my doctor told me that the average life expectancy I could expect was 2-3 years. In an instant, my life irrevocably changed and we have had to make decisions based on a timeline that was really really hard to get used to. I think the biggest change we made is that we don’t put anything off. We make plans to live life and then we do it. In the last two (2) years or so, I also dove into the metastatic community, engaging with other patients and traveling regularly to conferences. The friends I’ve made and the experiences I’ve had have truly been priceless, even through the regular deaths of precious souls taken way before their time.
Then COVID-19 happened.
For those of us whose life expectancy has been cruelly truncated by Metastatic Breast Cancer (MBC), the prohibition on traveling and gathering has eliminated some of the most important methods of maximizing the time we have left and has limited our ability to gather with friends whom we may never see again. Others who have more time in their lives to take a cruise or a vacation or just to be with family and friends will be able to do these things for years after the quarantining has ended.
When I travel to a conference or meet up with other friends who have MBC, we are acutely aware that the time we have with that person may be the last time we see them alive except for electronic communication. I can think of at least a dozen people who I hugged for the last time at a conference and then watched online while they declined and died before I could see them again. It’s one of those parts of the MBC experience that is hard to explain at times. Definitely something that healthy people don’t think about.
I’m sure the MBC community is not the only community who is feeling disproportionally affected and those perspectives are certainly valid. I think we will see the affects on the world for a long time, especially and particularly in mental health. The feeling of missing out and never being able to replace this time we’ve lost is weighing on me and I’ve heard others express something similar.
And so, what to do? How to remedy this?
I’ve found a few things that are helping me feel more connected to my community even when I can’t physically be with them.
- Writing letters. I used to exchange letters with my grandmothers regularly through college and law school. Getting back to the thoughtful and careful exchange of thoughts has been very worthwhile for me. A friend of mine set up a pen pal program too and that’s been fun. Plus I got to buy pretty stationary!!
- Electronic Learning Opportunities. I participated in the very first online course when I was in law school, I got my Master’s degree almost entirely online and I’ve been doing Continuing Legal Education (CLE) classes online for quite a while. All of that did not prepare me for having to do EVERYTHING online and I can’t say I’m a huge fan; at the same time, I’ve had the opportunity to help with the transition of certain conferences from in person to electronic. Applying creativity and careful planning/thought to the transition has occupied time and energy and that has helped.
- Expansion of Support Group Activities. I’m involved in local support groups as well as online support groups. In each of the groups I’m participating in, we have expanded the connection opportunities, including zoom and other q&a interactions. While not perfect, I think we are all learning the value of digital communication in a new way.
- Continue Making Plans. We may not be able to book a plane ticket or a resort or a conference right now, but we can still virtually travel to coveted destinations and plan for when the pandemic ends and traveling is available again.
- Make the Most of the Time we Have. Sometimes I think this is one of the most precious silver linings of a terminal diagnosis. I’m nearly always thinking in terms of now being all I have. Each holiday feels as though it will likely be my last. The benefit of this is that I’ve learned to make the most of now, the most of what we have right in front of us.
While I’d written most of this a few weeks ago, I would remiss if I did not add that we just completed the Living Beyond Breast Cancer 2020 Metastatic Breast Cancer conference entirely virtually. There were so many opportunities to connect, to chat, to see one another on the screen and it was more than lovely. As some people said, no lines to the bathroom is a major plus! Also, no traveling and worries about luggage and traveling with medication, etc.
And yet, as wonderful as it was and as amazing a job as all the staff and volunteers did, it was still a huge bummer not to see everyone in person. Some of us got together for an impromptu happy hour at the end, but it was still not enough.
It wasn’t enough. Our community is built on the community we create together. This is missing out.
What else? Tell me, what have you learned about making the most of now?