CANCER, cancer etiquette, METASTATIC BREAST CANCER

HOW TO TALK TO ME: The Don’ts and Do’s List

Hi All! In the past two weeks, guess how many people have asked me when my last bowel movement was? I’m not talking about doctors or nurses now. I mean YOU. Thanks for playing along! (Only Dreamboat has asked about my vowel movements.Unfortunately, I’m back in the hospital this week, having been through a thus-far-unexplained bout of chills, vomiting, and other gory stuff. So, this post is less hot-off-the-press, more something-I’ve-been-working-on-for-a-while.

At the end of this post, I’ll share the latest bad news/good news about my condition. If you’re already up on your Metastatic Breast Cancer Don’ts and Do’s, congratulations! You can skip to the end. 

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That’s right, I’m starting with the Don’ts because those are what you’re worried about, right? Here’s what not to say to your friend with Metastatic Breast Cancer. Like, for example, me. 

DON’T #1: Don’t beat yourself up.

Out of focus pink peonies 1.

With the exceptions of my daughter Progeny—because she’s naturally deeply perceptive (where does she get it, I ask myself)—and Progeny’s aunt, my sister Angela (because she’s probably where Progeny gets it)—most of you have committed one or more of the faux pas I’m about to describe. 

If you’re not Progeny or Angela (and I certainly am not), how would you know not to say these very particularly wrong things to your loved one with this very particular disease? You wouldn’t. You didn’t. You hadn’t read this list yet. Therefore, absolve yourselves, My Beloveds. And read on.

DON’T #2: Don’t make the oh-poor-you face or talk to me like I’m a child.

My husband, Dreamboat, and I were out for a walk recently when we ran into another couple—acquaintances who know I have cancer. “Ooooooooooh Megannnnnnnnn, how are you, dear?” the man purred, and they both looked at me with their oh-poor-you faces. You know that expression: head to the side, wrinkled brow, sad eyes, pouty mouth.

Re the oh-poor-you face: I hate that expression. It shouts, “Dearie! I look upon you with pity, as someone more dead than alive. Poor, poor you.” I’m not saying you can’t feel sorry for me—of course you can. Sit around your fireplace and condole with one another over my misfortune. I don’t blame you. But I’m the only one who should be allowed to feel sorry for me openly. Don’t put your oh-poor-you face in my face.

Re talking like I’m a child: I may have cancer, but I haven’t lost my intelligence yet. Or, if I have (chemo brain is real), why would you want to make me cognizant of that? (Cognizant, by the way, is a fancy word for aware.) Don’t talk down to me just because I’m ill.

DON’T #3: Don’t expect a full update every time you visit.

I know you want to know what’s going on with me—it’s curious and intriguing. That’s why I write the blog: this stuff is curious! And intriguing! That doesn’t mean I want to relive it with you every time you visit. In fact, usually, I’m hoping I’ll get to hear about your life: curious and intriguing, or dull as dishwater. It’s nice to focus on something other than my troubles once in a while.

Which is not to say I never want to talk about my troubles. I’m a writer. I have my narcissistic tendencies like anyone else. So do feel free to ask, “Would you like cancer talk or anything-but-cancer talk?” I promise to be honest with you.

DON’T #4: Don’t say, “Well, you look good.”

Out of focus pink peonies 2.

This is a tough one because people tell me I look good all the time, and mostly I’m grateful. Okay, not helpful so far, but stick with me.

If you read a lot of Metastatic Breast Cancer blogs (as I do), you’ll find a lot of bloggers railing against three little words: “you look good.” I’m going to change the formula, though, and rail against these four little words instead: “well, you look good.”

The difference between “you look good” and “well, you look good” is this:

Most days, I try to look good because this is the rest of my life I’m living—and I’m living it on fast-forward. Whether I feel atrocious or fine, if ever I want to look good again, I have to do it today. Tell me I look good and, like an old-fashioned etiquette book would advise, I’ll say, “Thank you.”

But say, “Well, you look good,” and prepare to see me steam. The idea that looking good is any kind of substitute or recompense for feeling good and having good health? That sucks. “Oh well, at least you look good.” Sheesh.

Fewer than 1% of Americans diagnosed with Metastatic Breast Cancer each year are men; the disease primarily afflicts women. Besides being sick and tired from Metastatic Breast Cancer, we women are sick and tired of being valued solely for our looks. Especially when we’re dying on the inside. Literally.

You get it now, right? 

  • “You look good. How are you feeling?” = Nice.
  • “Well, you look good.” = Not nice. Not at all.

DON’T #5: Don’t ask me when my treatment will end.

Possible answers to this question are “Never,” or “When the treatments stop working,” or “When I die.” Glad you asked?

Metastatic Breast Cancer is a disease without a cure. A patient might go through a series of eight or ten different treatments (and all the side effects that go with them) before running out of options. But, until there’s a cure, running out of options is a certainty. 

Ask how the treatment is going; don’t ask when it will end.

DON’T #6: Don’t offer unsolicited medical advice.

Yes, I’m talking to you, Mr. or Ms. Mindbodyspirit. And to you, Ms. or Mr. Purescience. Here we come to one of the most important Don’ts on this list.

One of the things that has surprised me most about my treatment for Metastatic Breast Cancer is how often I’m faced with really critical choices. Choices apparently only I can make. 

  • Seek treatment at my local hospital or at a tertiary center? Stanford or UCSF? MD Anderson, Memorial Sloan-Kettering, Mayo, Dana Farber, Cleveland, Johns Hopkins…
  • Apply for a clinical trial? If so, which one? 
  • Two radiation treatments per day for a shorter period or one per day for a longer period? 
  • Take another anti-nausea pill after two hours of vomiting or head to the ER? 
  • Go vegan? 
  • Eat the alkaline diet? 
  • Indulge the comfort of comfort foods? 

Or…

Try a little chiropractic/acupuncture/massage/meditation/Healing Touch/music therapy? 

How about one or more of these respected alternative therapies: Insulin Potentiation, Iscador Mistletoe, Ukrain™, Biomagnetic, or Gerson Microbiome Shifting (think coffee enemas!)?

Making choices like this is mind-boggling, emotionally charged, and stressful. “What’s behind Door #1? Longer life? Earlier death?” I do not need to be presented with another onslaught of advice or options for my care.

PLEASE do not present me with another onslaught of advice or options for my care.

If you must give me another choice, let it be this one: “Would you like to hear about a new (shamanistic/grape leaf/bog-walking/FDA approved) treatment for Metastatic Breast Cancer?”

My loving and appreciative answer: No.

DON’T #7: Don’t undermine the advice or treatment I choose.

FRIEND or FOE: How about a martini/cookie/steak/espresso/month-off-of-chemo to make you forget your troubles? 

ME: Thanks, but my doctor says I shouldn’t. 

FRIEND or FOE: Ah, c’mon. What do doctors know?

Ouch.

DON’T #8: Don’t talk about Metastatic Breast Cancer like it’s a video game and I’m a warrior princess.

Out of focus pink peonies 3.

Characterizing my plight as a battle I could possibly win through determination and/or virtue is wrong. Nobody beats the Metastatic Breast Cancer monster. It doesn’t matter if the patient is “tough,” “wise,” “courageous,” “a fighter,” “so positive,” “beloved by all,” or a “warrior princess.” Every day, I try to live because I want to live. When I run out of options—and Metastatic Breast Cancer is very busy narrowing my options—I will die. Until there’s a cure, that’s just the way it is.

DON’T #9: Don’t call me an inspiration.

Because, fuck you. Which means fuck me too, since I said this to a friend with cancer, even after I knew better.

Let’s think this through together. Do we honestly think it is any kind of comfort to the Metastatic Breast Cancer sufferer, or any cancer sufferer, that how they handle their struggles makes other people want to be better people? Yes? Think again. The correct answer is no. 

I repeat: Every day, I try to live because I want to live. 

DON’T #10: Don’t tell me how hard my cancer is on you.

“I’m shocked at your diagnosis. It’s breaking my heart!” “Thinking about what you’re going through keeps me up at night!” “I feel so helpless. Tell me what I can do for you!” 

Really? I hear the love in these statements, but I also hear that my illness is a problem for you.

Isn’t there someone else you can talk to about that? Preferably someone who isn’t busy trying not to die today.

DON’T #11: Don’t—and I mean, do not ever—tell me that everything happens for a reason, or that God has a plan for me.

I will kick you out of my house.

Enough said.

DON’T #12: A Personal Peeve: Don’t call it MBC.

Unless you do a lot of reading and research on Metastatic Breast Cancer, you’ve probably never come across the abbreviation MBC. Now that I’ve imprudently introduced you to the abbreviation, please know I hope you won’t use it. 

Of the approximately 43,260 Americans who will die from breast cancer this year, 100% will die from the metastatic version of the disease. 

Yet, of all the funds raised for breast cancer research this year, it’s estimated that less than 5% will be spent on metastasis-related research.

It is a name that deserves more fear, respect, and recognition, more research, more research dollars, and to be spelled out: Metastatic Breast Cancer.

Enough said.

ADDENDUM: DON’T #13: Don’t ask, “Why you?”

Added from the post entitled “Why Me?“: don’t ever ask me why I think I got breast cancer, or why it came back. 

The thing is—when someone who is not sick asks someone who is sick why the person who is sick is… sick, the real question is, “What can I do to make sure I don’t get sick, like you?” Or, put another way: “You have somehow attracted the wrath of God/the universe/evolution. By pretending I care about you, let’s see if I can get you to tell me how to avoid making the same pathetic mistake.”

DO’S

In focus vase of oink peonies.
Peonies from Pat G.
  • Do get in touch and stay in touch. You’re like a lifeline to the healthy world for me. Talking with you reminds me of the person I used to be, and still am, sort of.
  • When things go wrong, do say “Whoops.” Or “I don’t know what to say.” Or “I feel awkward.” We might discover that we like being so authentic with one another. 
  • Do consider these two little things you can say to your friend who has Metastatic Breast Cancer: “I’m here. I love you.” Imagine. Wowza.

ADDENDUM to the Do’s:

  1. Do say whatever comes from your heart. You’re sincerity will erase any mistakes you make.
  2. Do be as honest as you can be, even if it makes you—and your friend with cancer—feel really very awkward.
  3. Do start a text, email, letter, or conversation with “I hate that you have cancer. I really do.” You will have your loved one’s attention. He or she hates having cancer as much as you can imagine, and more than that. Depending upon the sensitivities of the one with cancer, you can even try “I fucking hate that you have fucking cancer,” because FUCK CANCER. Fucking-fucky-fuck it. 

Now that you know what to say (and what not to), please leave a message in the comments below. Do you agree or disagree with the Don’ts and Do’s I’ve described? Is there anything you would add?

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About my current conditionThe bad news is, the most recent scans confirm there are two cancerous lymph nodes in my neck. The good news is, these cancerous nodes will be radiated to death over the next few weeks. The even better news is that the same recent scans indicate tumors in my liver and lung have now disappeared completely. Hurray!

17 thoughts on “HOW TO TALK TO ME: The Don’ts and Do’s List

  1. Megan – I have not walked in your shoes but have taken a sojourn into CancerLand as a caregiver. Your Do’s and Don’ts are spot on and something for every person to consider when talking to anyone dealing with a catastrophic health event (their own or also with a loved one). #9 especially is a YES.

    What great news that the old tumors have disappeared, hopefully the new ones will do the same after being zapped. I hope this current hospital stay is a short one and you are back home shortly.

    Love, Jan

    1. Jan, I’m sure I was guilty of many of these Don’ts myself—when you were in CancerLand. I’m sorry. Thanks for your input!

  2. Dear One, Very clear and powerful message about Cancerland. Really helpful. I will be sharing this information with my friends and family. I am grateful for your honesty and especially appreciative of how you again have managed to write such an emotionally charged and engaging blog. This is brilliant. Your blog is really well done. It is so important to hear how things really are. xoxox

  3. Holy crikey, these Don’ts sounds like last Tuesday! Did I use every one of them?😔 (suppose to be “poor-you-face” emoji)
    Ok, I might have missed a couple of them, but you DO look good! You ARE my inspiration, and you ARE mt warrior goddess! (OMG, how could you have married such a non-PC bore!)
    Well, now I’m back to #1 don’t.
    Love you so much, baby!
    db

  4. Yep. I’ve said’em all! Maybe yesterday after you read me your post!
    I love you and I’m there for you, though. You’re the best. I have lots of answers to your list. You’ve probably heard them all. And thanks for sharing them!
    Yesterday I saw a quote:” everything happens for NO REASON!”

    1. Nothing happens for a reason. You know that’s my philosophy and I find it comforting. Thanks, eM.

  5. Thoughtful piece, Megan, worthy of publication and wide distribution. Very helpful. I continue to learn from your clear, efficient prose, your humor, precision, candor and logic. And certainly, on the Tuesdays you can’t make, all of us miss your damned good looks. Hope we’ll see you soon.

    1. And here I was just saying how much I miss my damned good looks. Those were the days. (Ah! Vanity.)

      Pretty sure I learned clear, efficient prose from you though, Dick, and Ms. R.

  6. Somehow I didn’t know about your blog before this. I have to say it was very enlightening. Thanks for sharing your honest feelings. It is so difficult to know what to say and you have laid out some good rules.

    Thinking of you and sending good positive vibes your way. Hugo sends hugs.

    Karen

  7. Lucky to know you, write with you, laugh with you, and learn from you. This list of yours shines light on an unfamiliar path. Thanks for all of the above.

  8. Thank you for this blog. I was happy to see you today – your appreciation of my house has always meant a lot to me — and all the little plants you brought to me at writing group. I miss having the group as I loved seeing the people. I will stay in touch through this blog. Thanks again. Nancy

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