What Not to Say to Someone with Cancer

by Carol Fragale Brill

Are you old enough to remember the old Art Linkletter show, “Kids say the Darnedest Things? It turns out, adults do too. Since sharing I have cancer, I have heard some doozies. Maybe it’s that facing someone with an illness or disability unsettles us to the point where we grope for words, or ramble and unintentionally blurt out the not-so-empathetic thing.

Here are some of the “darnedest” things I wish I could un-hear.  

1.    Cancer Stories with unhappy endings - “My (fill in the blank; sister, mother, cousin, neighbor) just DIED from cancer.” Or even worse “Died from the same kind of cancer you have.”

 

I can’t tell you how many times, after hearing I have cancer, the first thing someone tells me is about someone that died. Most of us have at least one personal story about someone who suffered an unpleasant cancer death.

Unless I ask you, this is not a good time to remind me that people die from cancer. If you feel compelled to share, make it a hopeful story about someone who beat the sucker and is cancer-free.  

2.    Chemo Horror Stories. “Do you know how often after chemo, cancer returns with a vengeance?”

 

In what universe does a person in the midst of chemo treatments need to hear cancer and vengeance in the same sentence? The only thing the local store-owner who said this to me accomplished is making me want to avoid him and his store with a vengeance.

Before starting chemo, I was freaked out enough about losing my hair, the possibility of nausea and vomiting, and the long list of other potential side-effects shared by my doctor without being bombarded with unsolicited real-life accounts of organ damage, excruciating mouth sores, fingernails that turned black and fell off, or life-threatening dehydration. There is only so much cancer and chemo horror I can take-in without completely wigging-out. If I want to hear the gory details, trust that when I’m ready I’ll ask you.

And for the record, my experience with chemo isn’t nearly as nasty as those alarming stories. That’s what I’d like someone embarking on their own chemo journey to hear.

3.    The royal “We”. “We will get through this,” “Just six chemo treatments? We can do that.”

On a recent episode of Parenthood, I almost cheered out loud when a character who plays a cancer survivor complained about how much “we” statements bugged her.

Not all “we” statements bother me. I love to hear “we” when you mean you and someone else like, “we are praying,” or “we want to help.”

I know my cancer causes distress to those who care about me. I believe when you say “we” you mean you want to be there and support me. Instead, what I hear is you believe you’re experiencing the same thing as me--that you have as much skin in this game as Jim and me.
“We” can wish it were different. The reality is this cancer is happening inside only my body. That changes my life and Jim’s in ways it doesn’t impact anyone else. There are parts of having cancer I have no choice but to do alone—parts even Jim can’t do for me.

Melissa Etheridge, a cancer survivor, says it poignantly in her beautiful song, “This is Not Goodbye,”  

Where I go now, I go alone.

This path I walk, these days of stone. 

Before using the royal “we” it might help to ask yourself, “How does her cancer change my day to day life?” If you are doing pretty much what you always did, consider ditching the “we.”  

I know no one intends to upset me when they say these darnedest things. Innocent or not, some remarks nearly pushed me over the edge in the early weeks after my diagnosis when I was numb and fragile—when it was nearly impossible for me to hear a sad cancer story and not project the same thing happening to me. While I’m getting better at not agonizing and melting down, there are still things that rattle my hope and that I’d rather not hear. 

This was a hard post for me to write. I don’t know if others with cancer feel the way I do, so in spite of the title, this post is about me with cancer, not we with cancer.

Please share in comments and help me better appreciate and understand the flip-side, What does hearing a person has cancer—or any serious illness or disability—feel and sound like to you? 

And, follow this link to hear Melissa Etheridge’s song, “This is Not Goodbye”

                        https://www.youtube.com/watch?v=ksihRX4kPtM

When Small Acts of Kindness are HUGE

 

by Carol Fragale Brill

A couple of blogs ago, I wrote about my worry that chemo treatments and losing my hair might make me look sick or unable. I imagined people would gawk at my scarf-wrapped head—or worse, dart their eyes away from me, rendering me invisible. 

Like so often when I wring my hands and project about the future, those worries were a waste of energy and time—teaching me once again that worry is like making loan payments before you get the loan. 

Repeatedly, the small gestures of others have reminded me how the littlest ripple of kindness can grow into a wave. Like the first time I wrapped my head in a “dress-up” scarf and self-consciously ventured out to an upscale restaurant for dinner with Jim. The waiter gushed about how attractive he found “my very stylish scarf.” A seemingly little gesture—for me and my self-esteem, it was absolutely huge.

I can’t tell you how often strangers—mostly women but also a good number of men—go out of their way to make eye contact with me, hold my gaze, and smile in a way that telegraphs encouragement and support.

My favorite example of a stranger’s small act of kindness might be the woman who came up to me in the grocery store, gestured discreetly at my head-wrap and said, “I had that same hairstyle three years ago.” She winked and added, “Don’t worry, it really does grow back.” 

Even more encouraging than her headful of hair was her healthy appearance—living proof that you can kick cancer’s butt.

The concept of small acts of kindness might sound cliché. For me, these little ripples from strangers help normalize a time that often feels anything but normal. And, far from making me feel invisible, they validate my experience and boost my self-esteem.

So what small acts of kindness has someone showed to you? And, what can you do today to start a ripple that churns up a kindness wave?

Bald IS Beautiful

by Carol Fragale Brill

Over the last couple of months, my family and friends have repeatedly reassured me that Bald is Beautiful. While I appreciate the sentiment, I didn't believe them and chalked it up to everyone just being supportive and kind.

And then I saw Joan Lunden's picture on the recent cover of People Magazine.

To say I am in awe and inspired that Joan Lunden bared her head on PEOPLE— a magazine read by an estimated 43 Million+ people and seen my who knows how many more— is a huge understatement.

Asked about her decision she said, "It was such a tough decision. . ."And it wasn’t the comfortable decision — knowing you were going to be seen by everyone in such a vulnerable way — but I know it was the right decision. I knew I could be a voice for a quarter of a million women . . . and I wanted to show that your health is more important than your hair. Your hair grows back after you stop chemo, and then you have your life."

I wonder if in weighing her uncomfortable decision she grappled with all the reasons not to do it—if like me, she came up with a long list of what-ifs and buts.

There’s a saying I learned from my Scottish friends, Bella and Julie that goes something like—if ifs and buts were candy and nuts, every day would be Christmas. The first time I heard that saying, I had no idea what it meant. Now, I think it means we can— and often do— stockpile excuses not to do stuff—especially the hard stuff that forces us to face fears or risk being seen as vulnerable.

Before I actually lost my hair, I was sure I’d keep my head under wraps with everyone but Jim. I can count on one hand the family and friends who have glimpsed it. And, then, Joan Lunden showed the bravery and beauty to let People put her bald head on their cover. I had to ask myself, if she put it out there for the millions who read People, is it time to suck-up the fear and insecurity by doing my small part? 

Unsure and uncomfortable, I talked it over with Jim. He asked me why, after being so private up until now, I’d want to take the risk.

The best answer I have is that the sooner I accept that being bald is part of my life right now, the sooner I take away its power and move on.

 

So, it seems like the best way to honor Joan Lunden’s bravery, is to (gulp) find the guts to follow her lead and do the same thing here.

Learning to FIGHT like a GIRL

                                                    

 by Carol Fragale Brill

Recently, I’ve received a lot of gifts with the slogan, FIGHT like a GIRL. They got me thinking about what FIGHT like a GIRL means to me.

As a little girl, I adored frilly dresses and ribbons and lace on my Easter bonnet, but since my teen years, I’ve never been a girly-girl. I like to look feminine, but I’m not big on accessorizing, elaborate make-up, or perfume wearing. I’m more a touch-of-lipstick-dress-for-comfort-left-over-hippie-sensible-shoes kind of girl.

So, it surprised me when in spite of everyone reassuring me my hair would grow back, my first reaction to learning I’d lose my hair from chemo was, “I have to have a wig, I can’t be seen without hair!” Before my hair even started to fall out, without considering other options, I got myself a wig.

Then someone asked me, “What exactly is it about losing your hair that has you so upset?”

Her question helped me realize my reaction was purely emotional. It’s not really about my hair. It’s about how much I value my healthy independence and determination and that when others look at me I don’t want them to see a hairless, sick, unable person. I want them to see self-reliant, determined ME.

Years ago, I had the privilege of attending a panel discussion about disabilities. One panelist was blind, one deaf, one a paraplegic, and another had speech and motor impairment from muscular dystrophy. Each of them held professional jobs—accountant, librarian, banker, computer technician. Their profound message has stuck with me over the years—Instead of disabled, think of me as DIFFERENTLY ABLED. If it looks like I need help, don't just do it for me, ask me. If I say I don’t need help, respect me and my independence and let me do it myself.”

That pretty much sums up for me what it means to FIGHT like a GIRL.

I am so grateful that my family and friends have offered me all kinds of help and support. For me, Fighting like a GIRL means learning to graciously accept help when I need it. And when I don’t, being able to gracefully say no thank you, I can and need to do that for myself.

It means letting go of female stereotypes, and trusting I can fight this fight from my comfort zone where I feel most like myself.

Fighting like a GIRL means it is okay if some days finding the courage to face the day means letting myself weep in the shower as tufts of my hair clog the drain or if tomorrow I need to take the wig off the Styrofoam head in my closet and wear it to feel my best.

And for today, Fighting like a GIRL means learning to rock the bandana and “pirate” wrap look because they take me back to my not-so-girly-girl roots and remind me I’m still ME.

                                                              

Once Upon a Time in the Land of Chemo

                                           

by Carol Fragale Brill

 

Admittedly facing cancer and chemo is less fairy tale than scary tale. 

And yet. 

A few hours into my first chemo treatment when the nurse asked how I was feeling, I said sleepy and dopey--and instantly thought of Snow White. I pulled out my cell phone and whipped off something like the following email to my family. 

Once upon a time DOC gave me anti-nausea drugs that make me SLEEPY, borderline HAPPY, and just DOPEY enough to not be BASHFUL. The miracle drugs are working and I am so grateful not to be nauseous because that would make me GRUMPY. And, I’m not having an allergic reaction like I did with anesthesia after surgery so Chemo didn’t make me SNEEZY. 

Oh, and did I mention I’m sitting here with my prince? 

While my ditty lacks literary merit, my writer-self coming out to play during my first chemo treatment felt absolutely huge. 

If it were up to me, I’d add a couple more dwarfs to the mix. The first time the nurse put the needle into my access port, I filled up with tears. Not because she hurt me, I barely felt it, but that needle under my skin, made chemo feel more real. So I’d add a dwarf named Weepy. And for balance I’d add Hopeful, because that is how I want to face each day.   

The day before my chemo, I had a networking breakfast with one of my writing mentors, and a writer we’d never met before who wanted to pick our brains. 

The new writer told me he believes the prayer of strangers is very powerful and that he would pray for my recovery. My mentor said, “I’m praying for you too. I’m praying you keep writing.” 

I’m pretty sure he wasn’t talking about a three sentence scary tale. And, yet, I’m guessing when he reads this, it will make him smile.

Life is Like a Box of Crayons

              

Lately, I’ve thought a lot about a conversation I had years ago with a doctor where I worked. He was complaining about some change he didn’t like, and I said something like, “Maybe it would help to think of this as one of those opportunities to learn.”

He glanced at me sideways, and in his gentlemanly southern accent drawled, “You know Carol, at this point in my life, I just don’t think I need another opportunity to learn.”

As I learn to live with cancer, I can really relate.

A recent piece of advice I’m trying to follow is that you can’t have cancer 24 hours a day. When I first heard that it didn’t make sense. Slowly, it’s starting to sink in. I’m still the same happily married me, surrounded by devoted family and supportive friends, a beach addict living in a shore town I love, a writer, coach, and educator who is blessed to do work that fulfills me. Cancer is just one part of me now—it only blots out the rest if I let it.

If you’ve read PEACE BY PIECE, you know there’s a line where Maggie says, “I’ve never had a box of 64 crayons.”

A reader recently told me that after reading that line, she thinks Forrest Gump’s mother might have had it wrong. That instead of chocolates, life is like a box of crayons—full of choices every day to pick the color of our mood.

That feels a lot like another way of saying that I don’t have to have cancer 24 hours a day—that cancer doesn’t have to tint my every waking thought and attitude.

Years ago, after Jim read the line about 64 crayons in a very early draft of PEACE BY PIECE, he bought me a green and yellow box of 96 crayons—equipped with a built-in sharpener. For over a dozen years, that box has sat on my desk reminding me of Jim’s unwavering support. No one ever colors with my crayons, but browsing through the colors often recharges my creative batteries.

 

And, now I have a new way of thinking about the 96 colors in that box. As I learn to live with cancer—one day at a time, one color at a time—I will try to focus on all the shades of gratitude that remind me I’m still me.

After You Hear, "It's Cancer"

Peach Ribbon/Uterine Cancer

by Carol Fragale Brill

It’s been fifty years since my dad died from brain cancer when I was twelve. My rational self knows that over those fifty years, there have been countless advances in cancer treatment—that today, having cancer is not the six-months-to-live death sentence it was when he was diagnosed, and many kinds of cancer are completely curable.

And yet.

After a recent abnormal Pap smear and biopsy, when my doctor said, “It’s cancer,” my rational self went AWOL, and my first terrified thought was, “is this how I’m going to die?”

Fortunately, Jim was with me to reinforce all the positive things the doctor said about catching it early because I take care of myself, get regular physicals and Pap tests, and that this type of cancer is typically curable.

After a few more hours of dark thoughts, a fragile acceptance started to sink in. Amazingly, Jim and I both slept better that night than we had for several days. Having an idea of what we were up against was actually better than the fretful days and sleepless nights of imagining the worst.

We’re in another cycle of waiting now as my surgery gets scheduled, and then we'll wait again for tissue and lymph node biopsy results. I hold on to the assurances from friends, who are cancer survivors, that waiting is the hardest part and that it gets easier once you know the treatment plan.

At some point that first night, I had a brief attack of uncertainty about what I was supposed to do next—put my life on hold, cancel everything on my calendar? Jim and I talked and decided I should do exactly what I would have done before my diagnosis. So the next day, I got up and took a bike ride, showed up for my consulting gig, and spent the late afternoon with Jim reading on the beach.

I knew I’d made the right decision about continuing to “do” my life when a friend who is a breast cancer survivor shared a piece of advice that someone had shared with her: Give cancer every bit of time necessary—and not a minute more.

I wish I could say that those first hours after hearing it's cancer were the only time I melted-down. The truth is dark thoughts lurk just below the surface and pop up at some point almost every day. Sometimes it’s a fleeting thought like when I admire a sundress in a shop window and then wonder if I buy it, will I have a chance to wear it. Or, when I reach for placemats, and instead of the everyday ones, I take out the “good ones” asking myself what am I saving them for?

Most days, I can shake those thoughts off pretty quickly. Sporadically, grief hijacks my thoughts and I wallow in self-pity and project about what-ifs. But even on those days, when I put my day in balance, so far, the fear and sadness are always outweighed by hope.

At first, I wanted to hide my fears to protect my family and friends from feeling afraid too. Then a friend sent me a card that says: Cancer is tough but you’re tougher. I realized I can put my feelings out there and trust that my family and friends and readers are tougher than cancer, too.