August 30, 2011

‘The Cancer Club’: Do Thyroid Cancer Patients Belong?

By Jackie B-F

Thyroid cancer is referred to as the “good cancer” to have.  Treatment generally involves surgery followed by radioactive iodine, and cure rates for the disease are incredibly high.  After surgery, the only drugs I took were my daily hormones and a lonely round of radioactive iodine.

Less than a month after learning I was in remission, I joined a young adult cancer support group where almost everyone but me had been treated with a stem cell transplant.  My week and a half of radioactive quarantine paled in comparison to their experiences, and I felt that I wasn’t part of “the cancer club.”  I was reminded both how lucky I was and how alone I still felt, even among other young adults with cancer.

Since then, I have become active with a few young adult cancer advocacy and outdoors organizations. Unlike like the support group, participating in these organizations has affirmed my experiences as a thyroid cancer patient.  When other cancer survivors comment, “At least you got the good cancer,” I explain that my experiences haven’t been so easy and no cancer is a “good cancer.”  I went through treatment with co-morbid health issues, poor health insurance, and while living across the country from my family.  When I speak about the quarantine period required with radioactive iodine, other cancer survivors commend me for doing it all alone, and in some ways this is my right of passage into the cancer club.

It was during campfire on a First Descents trip with other young adult cancer patients that I realized my story is worthy of telling.  As I listened to other survivors whose diagnoses covered a wide spectrum, I understood that I shared in their stories.  On the most basic level, young adults with cancer know something that our non-cancer friends do not.  Many of us know what it’s like to live in a hospital, to battle insurance, and to feel isolated by a diagnosis.  Thyroid cancer patients are no different in that we too may fear recurrence, feel lonely, and are unsure about the future.  At the end of the day, regardless of our cancer type, we are all still young adults with cancer and this community is too small to have any outsiders.

For thyroid cancer patients, do you feel like a member of the ‘cancer club’?  If you have another cancer diagnosis, have you ever felt like an outsider in the young adult cancer community?

Read about life with thyroid cancer in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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January 08, 2010

Smart Responses to Stupid Comments?


It’s frustrating and soul corroding when friends, family members, co-workers, even doctors shower you with stupid comments about your disease.    And it’s even worse to think of the perfect comeback three hours later when you are laying in bed.  Venting online with like minded patients about how we’d like to smack these people is all fine and dandy. But, I’m actually more interested in realistic responses that will make us feel better.

I’ve started trying to turn these situations around. Here’s an example: A friend recently said: “You gotta think positively and it will make your test results come out okay.”  I replied in a really nice tone: “I know, I hope everything is okay.  But did you know that studies show positive thinking doesn’t really impact cancer growth? I guess I usually just let myself feel nervous and then deal with the results when I get them.” She was surprised to learn this piece of information, became even more interested in what I was actually feeling and going through, and we had a cool conversation. So, here’s what I’ve learned to include in my comebacks.  I know this all may sounds a bit therapisty – so forgive me:

I get friendly instead of confrontational. Being a smart-ass only shuts the door. I think of my response as an invitation to more conversation, rather than a statement that will put someone in their place.

I try to teach them one thing about my life, my illness, or my reality. Not a lecture, but just one little nugget of info that helps them better understand what my life is actually like.

I start by saying something simple like: “Actually, that’s interesting I have the opposite experience…”

Does this work with everyone?  No.  There are some people I don’t have the energy or desire to deal with.  With these folks, I just note in my head, “This person’s so wacko I don’t really care what they have to say.”

What are there smartest, most useful responses that you’ve said (or could have said) to people’s stupid comments?  Am I full of it or do you think my ideas are actually applicable to situations you find yourself in?

Want to learn more especially about how to communicate with your docs?  Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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November 22, 2009

Your Advice to Someone Newly Diagnosed?


When I was first diagnosed with cancer, everybody and their mother was telling me what to do, how to handle it.  Some advice was so off it made me want to stick my fingers in my ears and chant “blah, blah, blah” like a three year old.

This is one of many reasons why I wrote my book Everything Changes.  I wanted advice that didn’t make me regress to toddlerhood.  I wanted really smart advice that I hadn’t seen anywhere else.  I wasn’t finding it in other books or cards or tee shirts.  So I found it in long intimate conversations with other cancer patients.

The end of my five-hour conversation with Wafa’a really stuck out to me.  She described herself as always being hyper with fear, constantly on the run, going clubbing, to yoga, hanging out with friends.  (Yep, that gorgeous woman with the disco ball is Wafa’a.) And, she was a ball of energy in our conversation too – quite wise but loaded with freneticism.  And then at the end of our conversation, she busted out with this really calm, clear statement that blew me away.  Here it is:

“Right now, I just tell myself what I would tell anyone who just got diagnosed: It’s just one day at a time. Remember to breathe. Be a little selfish and don’t feel guilty. Tell people how you feel and be open. Remember to tell people that you love them. Don’t play games, don’t be fake, don’t try to be tough all the time. If you need denial right now to get through, do it. If you need to cry and feel it every day, do that, too. You’re not alone, no matter how alone you feel, and you will feel alone, ’cause you feel like you’re the only one going through it. And we are, because we’re all different in our own way. But there are people out there that can kind of understand, and when you’re ready, they’ll be there for you.”

I’m curious, if you were to give advice to someone who was recently diagnosed, what would you say?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s for more words of wisdom from Wafa’a.

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