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The Etiquette of Cancer

by Stacey Winkler

Filed under | Living With Cancer

Lumpectomy, chemotherapy, radiation, menopause-inducing medication, Herceptin, homeopathic remedies, injected three times a week and a double mastectomy - almost six years later.

I’ve become an unintentional expert on the “etiquette of cancer.” Or the lack thereof.

In truth, what my disease has done to disrupt my life sometimes pales in comparison to the episodes “well meaning people” (WMPs) have often made me endure. Looking back, the list is seemingly endless . . .

Even those who didn’t manage to offend or hurt me with their words frequently managed to unhinge my self-confidence with a phenomenon I call “pity eyes.” You remember those girls in high school who could, with a single glance, convince you that your skirt, your shoes, your hair were somehow wrong, your very self not up to par? I witnessed the cancer version of that look all too frequently when I ran into someone who already knew I had been diagnosed with breast cancer. The “pity eyes” are inevitably compounded by a tone of voice that is really difficult to describe on paper. It’s a high-octave, perky, “Hi, Stacey!” followed by an immediate and dramatic drop to a low, alto, very concerned whisper: “How are you?”. The emphasis inevitably falls on “are.”

I want to believe that these really are WMPs (Well Meaning People, in case you’ve forgotten) who probably just don’t know what to say. But come on: it’s 2008! How many of us don’t know someone who is fighting cancer? “Pity Eyes” and high-octave “empathy” only made me (and would make anyone) feel like I was, to channel my mother, “right at death’s door.”

Another brilliant faux pas is the WMP phone call. The caller, often hysterical and fighting tears, proceeds directly into telling you how devastated they are by the fact the you have cancer. It’s your very own cancer and their day has been ruined by it. One “friend” called and said that his wife had just told him the news earlier in the day.

“I was so upset, Stacey. I feel like I’ve just been hit by a truck… I haven’t been able to eat one thing all day.”

This is where I must insert that I am such a pathetic caretaker myself that in all these situations I found myself exerting tremendous effort on a show of somehow quite genuine sympathy for the WMP. It usually went like this: “Oh please-I’m fine-I’m feeling great-please don’t cry-don’t be upset.”

If I was encountering the WMP in person, I usually went straight for a bear hug coupled with a consoling pat on the back. If only to shut them up.

Another “friend” told my husband that his wife had been inconsolable since she found out I had cancer. He was distraught because his wife hadn’t been sleeping. Hello? Is anybody home for the person with cancer?

Since my life was made up of tests, it took me a couple of go-rounds to realize how staggeringly impolite it was when WMPs called to ask about my “numbers” or my “tumor markers.” The constant questions from these layfolk, none of whom, of course, had any medical training and none of whom had any personal experience with cancer, added to the numbing sensation of being a stranger in a very strange land.

The questions didn’t stop there.

“Exactly when will your treatment be finished?”

“What side effects will you have?”

“How soon do you lose your hair?”

“Did you know you’ll have no eyebrows or eyelashes?”

“Why is your breast reconstruction taking so long?”

“Why didn’t the doctors keep your right nipple-couldn’t they have frozen it?”

“Wow, this is weird you feel bad-my husband’s secretary never missed a day of work.” “My girlfriend did Pilates and two-hour walks everyday and she really felt empowered being bald!”

Okay. Here it is: Maybe I’m extra sensitive, but all these comments and all the extremely invasive questions never ever made me feel any better or even remotely good. More often then not, they hurt my feelings terribly.

I finally stopped taking most calls. I decided to control my life and my environment, to protect myself, by controlling the people I talked to. Not just about my cancer but about everyday things. The people closest to me would allow me the great privilege of treating me like a full fledged, pre-cancerous person. We could converse about my kids, my garden, and how much chocolate I would have liked to have on hand at a given moment. I was more than just my cancer to them.

Not that I didn’t want to know anything and everything about my cancer. But wait. Not such a good idea. The personal etiquette of cancer, how the cancer is dealt with by the person who has it it, is another important set of techniques to be learned.

My brilliant cancer therapist (there is indeed such a vocation), Leonne Schillo, gave me some invaluable advice the day I was diagnosed:

First: Stay off the computer. No matter what. There is too much misinformation out there. Stay away.

Second: Everybody has a story-and more than likely, it is not a good one. Do not get involved with these stories or the people who feel the need to share them. Do not listen. Protect yourself at all times.

Third: Don’t let people judge you.

I feel adamant about people keeping physical assessments and “constructive criticism” to themselves. This immediately brings to mind seeing a cousin on the street, who upon greeting me pronounced that it was “absolutely not possible that you could have gained weight with breast cancer.” Once again, information that was not helpful for my self-confidence or a “speedy recovery.”

Another WMP said she’d “really be happy when you finish your treatment because you just don’t look or seem like yourself.” One girl I’ve known for 25 years, upon hearing I had breast cancer, immediately lamented the fact that the very best wig she had ever seen was worn by her dear friend, who had died the previous year-and foolish her, she had forgotten to get the wig maker’s name. I ask you-is that surreal or what?

Since my recent mastectomy (January 3rd, to be exact), when I am approached by anyone who is familiar with my latest chapter, I feel like an air traffic controller. Rather than “Pity Eyes,” I am subject to “Airplane Eyes” making an emergency landing on my chest. As if on autopilot, as soon as the Airplane Eyes drop to my chest, they make a conspicuous beeline back up to my eyes. Without fail, every single time.

My kind husband says, “Everybody means well, and they really cannot help it.” Once again I am left with my jaw dropped, scratching my head, trying to figure out why I’m not as nice as Henry. Do people really think I can’t see the shift to check out a breastless chest?

The best was yet another WMP who had a huge compliment for me. Both she and her husband agree: I look 10 years younger without my breasts, and definitely much, much thinner! While sharing this nugget, she simultaneously reached out to touch my stomach and waist, like the witch in Hansel and Gretel making sure there would be enough meat for dinner. Trust me-I could feed a village.

To raise public awareness regarding cancer etiquette, I would like to propose a piece of legislation mandating that when someone has cancer, they are given a temporary pass on “thank you” notes. Please understand that I am one of those people who writes a personal note if I hear that an acquaintance’s eighth cousin twice-removed mentioned that I possibly but not for sure had cancer and is weighing the possibility of at some point in time asking for my address to perhaps send something to me in the distant future.

However, in the middle of a particularly difficult patch of chemo, a “friend” who I had not spoken with in over 10 years sent me a lovely arrangement of flowers. I was grateful for the thought and generosity. But I had also just commissioned myself as the Four Star General in my Army of One. Several times each day, I mapped out a strategic assault on every beachhead in my bedroom like I was Dwight Eisenhower. I was trying to make the most out of my dreaded, perpetually repeating journeys from my bed to my bathroom.

I’m not talking downstairs here, or even down the hall, just simply from my bed to the bathroom.

The planning had to be impeccable, the execution flawless:

Push covers back, proceed to chaise, pick up book, get that soft foot pillow on the bench at the base of the bed on my way to picking up a cold water-located in my bathroom, mind you—toss soft pillow toward bed en route to the bathroom, continuing my mission to the vanity to run a brush through my hair or wig or perhaps just to grab a fresh clean cotton turban for my cold head, depending on the hour of the day. Continue to bathroom sink, brush my teeth, unexpectedly vomit, just barely making the toilet (my scheduling has already been blown), grab the book by the toilet, writhe around on the floor with incredible stomach pain for about four to seven minutes, call out to see is anyone is close by, okay - forget the water, pull myself up by holding onto the edge of the bathtub, brush those teeth again, and this time include the tongue, carefully avoid the sores in the mouth, major detour to the closet for a fresh non-vomity nightgown, shobble back to my bed (that was my walk at that time, somewhere between a shuffle and a hobble), realize I left the water and the book.

I blew it.

I didn’t allow for the unexpected, which is a cardinal rule! It’s fine. I’ll just organize better next time. Right now I need to buy as much rest in bed as possible until the next time I have to relieve my bladder or throw up again.

Fuck the girl who’s doing Pilates and walking everyday.

It’s in between these many strolls around the bedroom that I’m told we have received four calls from this latest WMP, asking if I saw the flowers she sent. The florist even called to reconfirm the delivery and I was told by another acquaintance that “Mrs. X” told her how rude I was by not responding properly when “Mrs. X” had reached out and sent flowers with a note that read, “You are in our prayers.”

What do you think I did? Obviously I sent the stupid note immediately. But still.

Let random acts of kindness be just that. Who in the hell is counting? Who cares about notes versus flowers, who calls and who doesn’t? Let it go. Check your ego at the door. If you really want to make a difference, accept the fact that the person who is ill is allowed a pass on the normal niceties they would offer if they were feeling normal.

Get that this is not about you, “Well Meaning Person.” It’s about the person who feels as though the rug was pulled out from under them the moment they heard the word “malignant.”

Please do not think me ungrateful. I truly have been deeply touched by so very many acts of loving behavior. I have never ever thought of myself as a victim, or felt like one. I have never ever said “Why me?” because why not?

So here are the answers to today’s Cancer Etiquette column.

1. Save the “Pity Eyes” for a Kodak commercial or for watching the nightly news. Lose the sad voice altogether. No one needs pity. No one needs any more sadness. Try to make this about the patient, your friend, and not about you. Behave as normally as possible. By all means, acknowledge the huge elephant in the room: “I heard you had/have/are having cancer. I hope you’re feeling better.” Sometimes it’s nice to offer to take over the carpool for a day or to go to the market. Whatever. Just know how good it feels to not have to comfort the person who is offering comfort to you. What a concept! Please understand that with just a glance or a few short words, you have the ability to unhinge all of the emotional progress the person in treatment or survivor has made just to get out of bed in the morning. Of course you don’t know anything. But the person you’re looking at can’t be sure of that. You have the power (unfortunately) to send someone in a fairly fragile state into a thought spiral that is, to put it mildly, no fun. Next?

2. Guess what? Everyone does cancer in their own way. There are no rules. Allow that knowledge to sink in. Everyone does cancer their own way. Please do not be an armchair quarterback. Your friend has doctors. Your friend does not need to know or be reminded of any of your mutual friends who have died of what you are trying to survive. The WMP’s also constantly reminded me about others they knew who were facing breast cancer, and to which site in their body the primary beast had spread.

Again I say: “Come on.” What purpose do these comments fulfill? If I want to tell you about my blood results I will. Do not ask. “What does the doctor say?” “When will you be well?” “When will you look like yourself again?” “We really feel it’s time you start getting back to going out at night.”

Try to hold back on the comparisons with your friends who are running marathons at the same point in treatment as your friend with cancer who is not running marathons. And that remarkable woman who is on an archeological dig in Central America and gets her chemo at a different hospital every time? Just give the CP some space. Just allow your friend to be whoever they need to be at this time. I can only speak from personal experience, but I felt so utterly out of control that I just wanted to grab at anything that made me feel like I was “in charge.” I wanted to be allowed the freedom to either offer information about my health or not. No one needs to go to someone’s house and hear about the private medical problems of other people. No one wants to feel they are being offered up as dinner table conversation. I swear to you, not a single person is interested in hearing about how hard your cancer has been on the WMP’s life because so many of their friends have cancer now.

Absolutely no one needs to know about the frightening new statistics you’ve pulled off your computer and just want to “share.” Get a grip and reverse the situation. If you do not have anything positive to say, do nothing. Call another day. I can honestly say about all those things the WMP offers up under the heading of “helpful” tips: the person with cancer has already gone down that road, and in depth, so don’t bother!

3. Just shut up! No one wants to hear how “fantastic” they look, and certainly no one wants to discuss how awful they look. Avoid bringing up weight loss or weight gain. Avoid the beauty tips, unless asked. Hold back on pointing out the yellow pallor of your friend’s skin. Do not try to make the situation more comfortable with these insane remarks. Guess what? It is an uncomfortable situation. Just get that it is and leave it alone.

4. Please do not have expectations. Do not bother sending a gift or a note or calling for any other reason than that you want to reach out. Don’t do it to cement a social contract or to initiate anything other than wishing your friend well. Even if there is no reciprocity, if you choose to offer your help in any way, do so without the expectation of getting something back. For me personally, there are no acts of kindness I will ever forget. Absolutely none. I will always cherish the memory of anyone who let me decide what parts of my illness and I wanted to share and when. These people will be in my heart for the rest of my life. I will always be in their debt. My chemo nurse Cecilia, who never failed to make me laugh, always addressed me with a smile and a kind word. She always managed to miraculously find a vein when it seemed like every single one had collapsed. She was always irreverent and never ever flashed me the Pity Eyes. Not once. Raoul, the guy in the parking lot of one of my doctors who always had a smile for me and kept my car really close by. There were gazillions of spectacular people who touched me so deeply-I will never, ever, forget them. Through this experience, I made lifelong friends.

If and only if you feel you want to put yourself out there for a friend or an acquaintance with cancer, do it selflessly. Even if the “thank you” note is late or non-existent.


Stacey Winkler graduated USC with a BA in Sociology, and proceeded to dedicate her life to volunteer work and children’s advocacy through Foster Care Works, service as a volunteer at Maclaren Children’s Center, and successfully lobbying for a separate children services department in Los Angeles County. Along with a bevy of public service awards and citations, Stacey has served on two presidential commissions. She recently underwent a double mastectomy after her breast cancer recurred. Stacey lives in L.A. with her husband Henry and is the proud mother of Jed, Max and Zoe.

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