I thought my cancer center had given me excellent care. I loved my medical oncologist, who drew extensive illustrations on blank white paper to teach me about my cancer. My radiation techs were fabulous. My breast surgeon was funny and straightforward. I felt really good about the whirlwind of the months in the middle of 2016: diagnosis to two surgeries to six weeks of radiation in less than six months. I felt like I was in good hands from start to finish.
Except nobody told me it would never really be finished. Nobody told me how it would feel when the whirlwind stopped. Nobody told me what it would be like to have the ground rushing up to meet me.
The cancer center offered a support group/survivorship course called “Finding Your New Normal.” (FYNN) The program was full when I finished treatment in September. I didn’t get to start until April, more than six months after I finished radiation. In that time the whirlwind released me, and I hit the ground hard.
I did not have a good six months before FYNN started.
April came around, and here I was, angry and miserable. I walked into the only support group that I had been offered and realized that I was the youngest person there. At 36, I knew that I was not your typical breast cancer patient – hell, the pamphlet they’d handed me in the “bad news room” on the day of my diagnosis had not a single person who looked like me in it – but as I looked around the room and saw women my mother’s age – my grandmother’s age – I felt out of place. But I was there for support, and I was determined to give it a shot.
On the first night, as part of an icebreaker, the facilitator laid out a deck of cards, each of which bore a picture. We were told to go through the deck and pick a card that represented where we were in our recovery process.
We made our selections and sat down in a circle. One by one, each of us held up a card, and briefly said why it spoke to us.
One after another, the women in my group held up their cards. A rainbow. Sunlight dappling through the leaves in a forest. Peaceful waves lapping at the shores of a beach. I heard stories of hope, of transformation, of strength and determination.
I held up my card. A stormy sky, angry grays, and blacks.
That was me: a tornado, a thundercloud, a lightning strike. As I spoke, I looked around the room, and I realized that nobody there understood how I felt. People looked uncomfortable with my anger.
What kind of support could I possibly find here?
I finished my eight weeks, but I never felt comfortable in that room, nor with my fellow survivors. Not only were they in different stages of their lives than I was, but they were at different stages in their recovery, too. A couple of people were years out. I had nothing in common with them.
I tried poking my head into different online support groups. But what I saw felt less like support and more like a constant death knell, with post titles like “My sister lost her battle” or “It came back” or “Bone Mets.” What I saw overwhelmed and terrified me. For me, newly diagnosed and prone to anxiety at the best of times, no support could be found there.
The best ally I found that first year – the only ally I had for several years – was someone I ran into on one of my favorite websites. Just days after I got the news, I posted about my diagnosis in the comments. A beautiful stranger responded to me that she’d survived breast cancer in her 30s too and invited me to email her. We eventually met in person. We text at least every few days. Liz was my anchor and my shoulder to cry on when it felt like nobody else in the world knew what I was going through.
With the help of Liz and my endlessly supportive husband, I muddled through the next few years, mostly alone. Embittered, depressed, irritable, angry. Trying to mix the right cocktail of hormone inhibitors and SSRIs that might help me feel a little more normal on any given day. Weekly therapy that mostly ended in tears and not much progress. Treading water.
Two years post-diagnosis. We moved; I had to get a new oncologist. Then, after being forgotten in the waiting room for my monthly Zoladex shot one too many times, I got another oncologist. This practice came with a social worker who specialized in oncology patients that I got to talk to whenever I wanted, for free.
Kerry is soothing and kind and radiates earth-mother energy. She listened and guided and smiled and praised and one day, she gave me a list of organizations I had never heard of. Organizations that dealt only with AYA cancer survivors: Stupid Cancer, the Young Survivors Coalition, the YA arm of Living Beyond Breast Cancer. Before then, I didn’t even know they existed. I didn’t even know AYA was a thing.
I looked them up. I joined Facebook groups. I interacted with other young women with breast cancer. I swapped tips about Tamoxifen, about hot flashes, about mental health. I felt better, more welcome, more comfortable… but there was still the anxiety, still the isolation. Still too many people whose cards were rainbows and puppies and unicorns. Still nobody a thunderstorm inside, like me.
Then COVID hit. Weirdly, I think my years of struggling post-cancer prepared me pretty well for this. Aside from a couple of good anxiety attacks at the very beginning, I’ve been handling this mostly with aplomb. Does the isolation suck? Well, sure. But there’s a twist!
An email landed in my inbox. StupidCancer would be going digital with its annual CancerCon this year. Registration was free.
I probably wouldn’t have ever gone in person. I turned 40 this year; by the range that’s generally used, I’ve aged out of the AYA community. I’d assume that everyone would be too much younger than me, that we’d have nothing in common, that it’d just be awkward for this middle-aged lady to show up.
But digital? For free? Why not, right?
During a long weekend staycation, I poked around in the chat rooms that stood in for the mingling between sessions that would happen at a real conference. I chatted in the Zoom sessions I went to on mental health and on sexual health, in the keynote session and in the open mic session. At one point I found myself chatting with one of the keynote speakers, Steve G (Giallourakis) himself!
On the last night, there was a dance party. Dozens of people in our little Brady Bunch windows in the Zoom room, with DJ CherishTheLuv pumping out the tunes. People I’d run into throughout the whole conference and greeted wholeheartedly when they appeared on my screen. In between dancing, we chatted. As the night wound down, someone said “hey, let’s start an Insta chat to stay in touch!”
Next thing I knew, I was in a group with a dozen amazing AYA survivors and patients. As I looked at the pictures next to the names of my new friends, it was the inverse of what happened when I walked into my first support group: this time, I was the oldest person in the room. But where FYNN had alienated me, this felt like a warm embrace. It was like suddenly being among people who speak your language when you’ve been trying to communicate through Google Translate for years.
We have dance parties once a month, now. We have Netflix watch parties. We have inside jokes and T-shirts and when two of us ran into each other in an online research panel, I weirded everyone else out by laughing about us being in a cult. I have known these folks for barely months (seriously, CancerCon was only in June!) and it’s like I’ve known them for a lifetime.
They’ve inspired me and motivated me and they’ve connected me to more AYA resources that are exactly my speed, exactly the vibe I was missing when I walked into FYNN all those years ago. Because of them, I’ve just been accepted to a young advocate program with a breast cancer organization. Because of them, I have been inspired to write this essay.
Turns out, my tribe was never just young women with breast cancer. Before this, I had such a narrow lens – after all, you’d expect only the people with the same cancer to have the same experiences, right?
I was so, so wrong. Nobody needed to have my cancer to be on my wavelength. I can joke one minute and get sentimental the next; I can confess the poor state of my mental health and then spam Golden Girls gifs. They get it. Every one of them gets it. They’ve known the whirlwind. They’ve faced the storm.
I’m not alone anymore. I promise, neither are you. Open your heart and open your mind. Your people are out there, waiting for you to find them.
All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer. If you have a story or experience you would like to share with the cancer community we would love to hear from you! Please submit your idea at https://elephantsandtea.cdn-pi.com/contact/submissions/.