Comfort in Community
Last updated: November 2022
At the time I was diagnosed with de novo metastatic breast cancer, my support systems were thin at best. Regardless of the reasons, I definitely felt alone when I got this devastating news.
When I knew it was breast cancer—but thought it was early stage, I reached out to one of my friends to ask if she would serve as my health care agent and power of attorney. At this point, I fully expected that I would be fine after getting through one hard year of curative treatment. I mean, I wasn’t going to die from this. Cancer aside, I was of perfect health. Yet, the need for an Advance Directive was long overdue and this prompted me to finally put legal documents in order.
Ensuring my wishes are honored
Leigh Ann was a perfect choice for me. A colleague and officemate when I was a State of Maryland disability advocate, she is an expert in person-centered approaches and end-of-life issues. Who better to ensure my wishes are honored before and after my death?
Leigh Ann was the only one I “let in” about what was going on for me—until, that is, I found out it was Stage IV. Then it became time to let other friends know. Going it alone, and silently carrying something of this magnitude…was not an option for me. Not a healthy one, at least.
People that get it
I opted to set up a private “Cancer Friends” list on Facebook, which initially included around 30 people who could see cancer-related posts hidden from general friends. That initial number came down closer to 25, as I watched how folks reacted—or did not—to the news of my health crisis. I will write more about what a lot of us experience in terms of who is there, and who is NOT, when tragedy strikes. For the purposes of this article, however, I will simply say that I learned pretty quickly that I needed people in my life that “get it.” That meant that I needed to meet other MBC patients.
I was meeting people through MBC forums and other means. A number of times, I would click with someone and we would have a nice phone chat or exchange emails for a while. Then, in January of 2021, I decided to attend a MBC support group run by a local non-profit organization. It was the only time I joined in with this particular Zoom group, as I found it wasn’t quite right for me. Yet, I did get a tremendous gift that day.
Another newcomer was attending that group for the very first time—and initially had difficulty connecting to the video call. I have no idea why it was bothering me so much that she couldn’t get into the Zoom room, but it did. A lot. Maybe it was because I know how much we need each other. Especially when we are newbies. Or maybe I just had a profound, unexplainable feeling that this person was meant to become my friend.
My cancer BFF
As soon as Karen got connected to the call and introduced herself, I knew I wanted to talk to her outside the group. Also sensing that I probably wouldn’t return to this group again, I asked the facilitator if she could provide us with an email list of all the attendees after the call. She and everyone in attendance agreed to that, and I was quick to email Karen afterward. The rest is history, as she is my Cancer BFF to this day. And, today is her 50th birthday! (Happy Birthday, Karen!)
As real as real gets
I have met a lot of wonderful people within the MBC community since that time, and I have never felt more connected, loved, and supported. Any of you who have really plugged-in to the community know what I am talking about.
We can say things to each other that we don’t or won’t say to our non-cancer friends and other loved ones. There’s a short-hand between us. We know what lab numbers mean, what scanxiety feels like, and what it’s like to live each day with the burden of an unpredictable, deadly disease. It’s about as real as real gets. For this, I know that the friendships I am developing with fellow MBC patients will be the deepest, most beautiful and cherished relationships of my lifetime.
Feeling seen and heard
Since the day we met, Karen has been my constant. It might be that we just text a wave to say we are thinking of each other and we are “here.” We keep track of each other’s appointment schedules, and emotions that are often attached to these. If we notice we didn’t hear from the other the day before, we reach out to make sure everything is okay. Because, outside of weekend family time where we talk infrequently, missing daily check-in during the week is unusual for us.
Given that I live alone, it has been a great comfort to me to know that I am on Karen’s radar. She will be the first to detect if something is wrong—and to contact Leigh Ann. Other people in my life might not notice my absence unless it went on for a week or more. She picks up on subtle hints that I might be having a bad day or signs I’ve exceeded my stress threshold, and she is one of those rare people who notices what ISN’T being said as much as what is. Without fail, she always has the right words to make me feel anything but alone. And there has never been a moment I didn’t feel completely SEEN and HEARD by her. She is living proof that angels really DO walk among us. Especially as she patiently stuck it out with me through my early neediness!
I’ve recently met other friends with MBC who are becoming close to me as well. Some are fellow advocates, some are not. As the days pass, I am starting to notice that my world is getting busy. And LOUD! Lots of communication with other people, even to the point that it is sometimes hard to keep up. It’s all connected to the MBC community. Lots of it is advocacy-related; exactly where I want to be. My life now centers on this community. In the best of ways.
Friends without cancer are quick with an emoji or a “you go, girl” on social media. Many times nothing more, even when I talk about my cancer. Many of these relationships are suddenly feeling different to me. It’s not that they don’t love me or that I don’t love them right back. But it’s like a movie where the people in the background fade to blur while the main character remains in sharp focus. Yes, I have a number of incredible friends who continue to reach out and step up to the plate. They are here for the long-haul, and sit with me through harder days and conversations. Still, I am witnessing a changing of the guard with key relationships in my life.
The MBC community
It’s a bittersweet thing. The MBC community is becoming my family. And I am filled with immense gratitude for the people who are entering my life. Today, I am not going to talk about the downside of becoming close to other MBC patients; the inevitable loss. Nope, today… it’s all about gratitude and belonging.
Life sure looks a lot different for me than it did two years ago. For those who have become my friends, I love you. And for those who are new to the MBC community, and might feel a bit alone or lonely, it does take time and effort to meet new friends. But we are looking for you, too.
It is my deepest, heartfelt wish that each and every one of you has... or soon finds… your very own Karen.
Advanced breast cancer is an isolating and lonely disease.