Hello, and I’ve been asked by many people recently what they should/could say to cancer patients, caregivers, and survivors. So I thought I would re-publish some older blogs.  I’ll combine two articles here with the goal of sharing how you can be helpful and how to avoid unhelpful things!

Dana and Tracy Babies_1961

PART I

For the estimated 1.6 million Americans diagnosed with cancer each year, being out in public can be both a personal triumph and a huge blessing. However, for many cancer patients, conversations with the public carry an element of dread. Nearly everyone who has gone through treatment for a life-threatening illness will tell you that there’s likely to be at least one guest with “foot-in-mouth disease” at every event; one friend who doesn’t quite know how to handle the situation.

As most of you know, I recently lost my identical twin sister, Tracy, to breast cancer, and I continue to fight cancer too. I was recently diagnosed with my 3rd time with breast cancer. Over the years we kept a running list of things you should never say to a cancer patient, sort of like the Letterman Top 10.

As Tracy and I alternately battled the disease together, we learned ways to cope with the off-color, insensitive – and downright strange – comments we encountered at public gatherings. Once we heard a comment, we called each other and announced a new “Letterman’s Top 10 Stupid Things People Say to Cancer Patients”.

We know everyone is touched by cancer but we don’t want to hear other people’s cancer stories. And sorry, I really don’t want to hear that your dog, cat, guinea pig, whatever, had cancer.  My conclusion: if you’re feeling awkward, probably whatever you say will come out awkward.

Dr. Joe Taravella, a psychologist at NYU Langone’s Rusk Rehabilitation, said it’s natural to feel uneasy in the presence of someone you know is very sick. “I think basically what happens is people don’t know what to say in difficult situations, or sad situations, or when they hear not-so-great news,” Taravella said. “People just don’t know what to do with it. Instead of actively listening, they want to give advice and make someone feel better.”

But Tarvella said these social encounters are not the time to offer medical advice, even though it might feel weird not to address the “elephant in the room.” People often are going to be insensitive, whether it’s intentional or not,” he said.

If you’re interacting with someone you know is seriously ill, he says it’s best to let that person take the lead and determine what they’d like to talk about, whether it’s the weather or work or their cancer treatment.

Still unclear about what NOT to say to someone with cancer? Here’s a quick primer.

Do NOT say:

“You’re going to be fine. Everything will be fine.”

“I know how you feel.”

“Oh MY GOD” (followed by moans, crying, drama, pathetic looks, sadness)

“God doesn’t give you more than you can handle.”

“I have a [friend, cousin, grandmother, relative, dog, fish] who survived cancer.”

“My [friend, cousin, grandmother, relative, dog, fish] just died of cancer.”

“Why aren’t you trying this treatment I read about on the Internet [or heard about from a friend of a friend]?”

“What are your odds?”

“Best of luck on your journey!”

“Which breast did you lose?”

“Well, you don’t look sick!”

YES, say this instead:

“Is there anything you need?”

“Is there anything I can do?”

“Would you like to talk about it?”

“It’s so nice to see you!”

“How are you feeling?”

“How is your recovery going?”

“No matter how you feel, we’ll stick with you through this.”

“How are you feeling? I’m here to listen.”

Compliment them (without ending it with “for someone with cancer”

Some other helpful hints:

• Instead of saying “Please keep me posted” or “Call me after the procedure,” say, “I’ll stay close and ask how you are doing after.”
• Remember not to share stories of other people either recently diagnosed or experiencing any type of illness. Just not helpful. Period.
• Avoid the word should, as in: “You should try this…should do that…”
• Avoid asking about the past. “When was your last check-up; when did it crop up, did you have regular mammograms?” It doesn’t matter, right?
• Don’t send a book on death and dying or on the afterlife. Instead, ask them if they would like any reading material.
• Sometimes the best thing to say is nothing at all. Simply sit with that person, listen to them and just be with them.  That quiet comfort can many times be just as welcomed.

Part II

More on the conversation about “Dos and Don’ts” to help you and your friends be great cancer patient supporters.

FACEBOOK: Facebook “likes” are NOT connecting with people going through tough stuff. Click away, however, please feel free to comment as I read every single comment and they bring me joy. Don’t worry if other people have said the same thing. Just speak from your heart.

Hey, what if we all wrote Zuckerberg and asked him to put a “This Sucks” thumbs down icon right next to the “Like” thumbs up button?  It’s definitely awkward to click “Like” when someone is sharing bad news!

Some of you are still uncomfortable saying anything. I got the following note from a friend who said, “Been following your news on Facebook… praying for you!” Well, those are nice, but why not comment on FB or give me a call, e-mail, or text? That’s where the feel-good stuff begins… for both of us! If cancer makes you so uncomfortable that you can’t send me a, “Hi, how are you?” text, get over it.

MIA: And what if you have been MIA – Missing in Action? It’s just been too hard and now it’s to the point where you really do feel awkward connecting, right?   Here’s a trick that I teach in my networking sessions:   Simply try again and start your communication with TWO WORDS: “I’m sorry.”

Here’s a sample: Dear <name>, I’m sorry I have not connected since hearing of your health news. How are you feeling? Is there anything you need?   I’m always thinking about you and I’ll do a better job staying connected in the future.”

REAL WORLD EXCUSES:

1. I haven’t called for fear that I would wake or bother you. Just know that our phones will be on silent or off if we’re napping. And we can flip your call into voicemail and listen to it later. And you can e-mail, comment on FB, or comment on my cancer blog.
2. I just don’t know what to say… so I don’t call. Read the first article of this series as it provides a great script you can steal from!
3. Other people are saying the same thing so I don’t want to look like a copy-cat. Don’t read other people’s stuff… just write yours! So what if there are other similar ones! It’s the thought, silly!
4. I’m so busy during the week at work and then mean to call on the weekends, but…   Well… I don’t have much of a response other than a smarty-pants one: ”It’s just not that important…” and there’s no need to share why you can’t or didn’t call.

THE GOOD STUFF:

1. Great greeting cards (old school paper) that I am keeping.
2. Care packages of cozy things like lavender, magazines, munchies, socks.
3. Friends just offering to pop by and not staying too long (maybe they see me fading).

ADDITIONAL SHORT LIST of “things not to say or do:”

• “Will your beautiful eyebrows fall out, too?”
• “I’m sorry.” I never know how to reply and end up reassuring people that my cancer is not their fault. Also, it’s the number one way to bring down the vibe.
• Don’t recommend or send cancer books, special remedies, or recommend we watch a cancer documentary. Yes, I know it’s my choice to keep or toss the idea, but my purpose in life is to be healthy – physically, spiritually, and emotionally.   To me, that’s all positive thinking. I don’t need more information…just peace and happy, healing thoughts.
• Watch the “should’s,” please. You should do this, gotta try that, this worked for a friend of mine who had cancer. I love my doctors and am under tremendous tender loving care.
• Don’t come over if you have the slightest sniffle please. Best to re-schedule. If you are healthy, use the Purell bottle hung around my staircase.
• Don’t gawk! Yes, I see you, total strangers gawking at my naked head. Haven’t you ever seen a scalp before? Bruce Willis has been around since the dinosaurs. So avert your eyes or tell me you loved V for Vendetta.

Just trust your heart and don’t be afraid to stay connected! It will bring joy to me… and you!

With gratitude and hugs,

Dana Manciagli