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The Cure for Cancer Loneliness: Find Other Young Survivors

Posted Mar 07 2012 2:18pm

As soon as I recovered from my last round of chemo, I decided to bring my baby to a Mommy & Me class. Most mothers would consider this a routine outing, but for me it was groundbreaking. The first five months of my son’s life had been dominated by my cancer care. I was desperate to do something normal parents did.

But there was no escaping the truth: it’s hard to pass as normal when you are the only bald mother in the room. I pulled my little woven hat down as far as I could and fluffed up my remaining eyebrows, but as I listened to the other moms worry about sleep patterns and nursing cycles, I felt like a visitor from another planetone where sleep was more likely to be disrupted by fears of metastasis than by a restless baby.

I was used to being the odd-man out at my oncologist’s office, where I was always the youngest patient. I had come to this group of young mothers because I wanted to blend in again. Instead, I left feeling more alienated than ever.

Getting diagnosed with cancer in your twenties and thirties can be a lonely experience. Our neighbors in the chemo room are usually three or four decades older than we are. And our friends at the bar or the office don’t know how to help someone through a life-threatening illness yet.

Sometimes even the experts don’t know how to respond to us. Nita got diagnosed with breast cancer at 27 during her third year of law school. She had seven months of chemo, a double mastectomy, and failed reconstruction before a second round of breast implants worked. She felt overwhelmed by the changes in her life and decided to talk with a therapist.

At first she went to someone who focused on post-cancer issues. “But she was older,” Nita said. “Her clients were mostly older women. I was 28, thinking about having my ovaries out, because I have the genetic mutation. But I want to have kids. I couldn’t believe I had to deal with these decisionsI should be thinking about what I am doing on Saturday night. This therapist was used to working with clients who already had grown children. It wasn’t a good fit for me.”

I was lucky enough to find a fantastic therapist, but I still had moments of disconnect with my friends. I felt it every time I had a scan and someone said, “Don’t worry about it; I am sure you’ll be fine.” I felt it every time a friend complained about having the flu or turning 35. And I felt it every time I had a question about chemo-induced menopause but didn’t know whom to ask.

My therapist recommended I go to a post-treatment support group for young survivors. I will never forget the feeling of walking into that room, looking around at the other faces, and thinking, “I can’t believe all these people had cancer. They look so normal.”

I still thought there was something freakish about having cancer as a young person, but the people in that room proved me wrong. As we began to talk that night and over the course of the 12-week workshop, I realized I had finally found my people.

They spoke the same language as I dida dialect of bone scans, blood work, and recurrence fears. But they were also my age, and they talked about sex and fertility and how cancer robbed us of our youthful bravado. They could understand in a look or a phrase what it took paragraphs to explain to a non-cancer friend. And they never winced when the talk turned dark or gory.

“The majority of America doesn’t like to talk about things that are uncomfortable,” Denny, a survivor in his late twenties told me. “That’s why the cancer community is so great. You can say, ‘Oh my god! They poked me in the boob and my nipple exploded!’ If I am not around people who get that, it’s no surprise I feel lost.”

The conversations I had at those workshops and in the friendships I forged there made me realize I actually was normalas normal as a woman who gets cancer at 32 can be. The isolation started to melt away.

“After treatment you feel like an alien,” Denny explained. “Then you see another survivor and you realize, ‘That’s one of my own.’”

If you haven’t found your own yet, there is no better place to start than here at Stupid Cancer or at the OMG National Cancer Summit for Young Adult at the end of this month. Even if you can’t get make it to Vegas for the Summit, remember: you are not alone. Other young survivors are a click away .

Emily Cousins is a writer and editor who was diagnosed with breast cancer when she was 32 and nine-months pregnant with her first child. She is currently writing a book about what it's like for young survivors once cancer treatment is over-when the radiation burns have healed and the hair has started to come back, but everything else is completely out of whack. After almost a decade living in New York City, Cousins now resides in Northern Arizona with her husband, son, and the daughter she was lucky to have post chemo.
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