In Which I Don’t Tell People What to Say

I read a lot of blogs–not all cancer-related.  Indeed, if I knitted as much as I read the blogs of knitters I’d have knitted a sweater for every human being in my neighborhood–not to mention a few chihuahuas.  It amazes me how many of us blog about our cancer experiences.  If we were blogging solely to educate there would be a miniscule fraction of people actually blogging.  But by virtue of living with and exploring this collective circumstance, education takes place.  We each find our niche, our audience, and our influence.  For as many different people there are out there, there are just as many blogs.

With breast cancer blogs I like the variety of styles and approaches; I always learn something new and there’s always something said that makes me think.  And, collectively, we create this cancer zeitgeist wherein certain threads appear more or less frequently.  Pink culture is a big one, treatments and their side effects, the hierarchies of illness–just to name a few.  More recently, though, the thread of how to speak to, with, or about someone with cancer has electrified the collective consciousness.  Blogs, newspapers, magazines–it’s everywhere.

All of these posts and articles have done the right thing–they’ve made me think and perhaps enlightened a few folks.  And it’s not like the points of these many authors aren’t salient.  I do believe they are and the information is valuable.  But I feel the spirit of The Gadfly coming upon me, brothers and sisters!  And, as gadflies are wont to do, I’m going to bite.

One of the things about being human is how self absorbed we can become in our own life experiences.  I mean, it’s almost impossible not to be self absorbed; we’re living an experience that may be very different from those around us and by virtue of that not everyone will understand how we feel or what we need at any given moment. When you get the cancer, it’s all about you.  When you get engaged, it’s all about the nuptials.  When you have a baby it’s all about pregnancy books and child rearing.  I had a boss who was so self absorbed she could easily spend hours telling you all about her allergies, urinary tract infections, and skin biopsies.

I am very open about having cancer.  I don’t particularly care who knows or what they think.  Granted, my lovely friends have all been a warm and receptive sounding board for me in many ways and I am–and forever will be–eternally grateful to them for their patience.  And there are times, when I’ve prattled on about my latest pill container purchase or life decision, I feel guilty for ragging their ear about the same damned thing all of the time.  And I find myself now wanting to know more about other people, because cancer can get boring.  It’s such a large part of my life at this point, it’s hard to remember that not everyone understands that or wants to listen to it.   I am not an island; I need to consider others as well.

Like, when someone is clearly asking me what is wrong without actually asking me I answer this way: I scrunch up my face, tilt my head, and say, in my best Long Island accent parody, “Oi have breast canceh.”  I don’t know why I do this.  On one hand I don’t want to say it with pride:  “I have breast cancer!”  And I don’t want to do the passive-aggressive move where I pat my breast and whisper that “I’ve got the cancer.”   I feel awkward so I try to make light of it.   Making light of cancer!  Sheesh!  But the truth is that I feel their awkwardness (not to mention my own) and I try to defuse it with something humorous.  If it’s making me feel awkward, then I know the person across from me feels awkward.

CaptureIn New York City space is at a premium.  On the sidewalk, in the park, in a grocery store–people are very aware of space.  Which is why I have a particularly pointed dislike of those parents who insist on bringing their double-wide strollers into supermarket aisles barely able to accommodate the monstrosities.  And these same parents look at me–as I eye them with absolute dismay–and demand that I give way.  It’s always a standoff.  If these same folks were reading and writing blogs about parenting (rude parenting), someone somewhere will have brought up the problem of how people without children just don’t understand the difficulties of people with children and people without children need to be more understanding of people with children.  “I don’t care if I’m blocking a fire aisle, you can’t tell me to move my child.”

All of this is to say that it is my contention that when it comes to cancer–breast cancer in this instance–we have become so self absorbed that we forget–or refuse–to acknowledge what life was like before cancer.  I’m not throwing stones, I’m just as self absorbed (we kind of have to be to navigate this nightmare), but like the parent pushing a front loader through a supermarket that could fit on my ass, we think people must understand usThey need to know how we feel.   They need to say the right things so that we do not feel bad.

Why do we need to be protected so?   What, we woke up in a different culture and in a different space in time?  You’re going to tell me that if you never had prior experience with cancer of any kind that you never once . . .

  • . . . expected a stage iv cancer patient to look like a blanched starvation victim and were surprised that they looked outwardly “healthy”?  And had hair?
  • . . .  tried to ease a friend’s fears by saying, “You’re going to be fine.  I just know it.”?
  • . . .  wanted to check out your friend’s implants to see what they felt or looked like?
  • . . .  NOT wanted to help, but you just didn’t know how?
  • . . .  kept your distance–even in the smallest way–because you didn’t want to bother your friend or colleague?  You just didn’t know what to do?  And, frankly, you were scared?

Now look, I’m not saying people aren’t idiots and can’t say and do some pretty awful things.  And I’m not talking about some verbally and emotionally abusive monster in this essay.  But I take absolutely no offense when someone, who has heard about my diagnosis, says “Scorch, you look great.”  Because I think, “I’ve got stage iv breast cancer and you’re goddamned right I look great.  I’m alive, honey.”  Even I am a little mystified that I’m walking down the street feeling awesomer than awesome and then the thought hits me that I have this diagnosis; I think “How could this be?”  So why would I begrudge someone’s awkwardness in the face of this thing?

Two very dear friends of mine always say, “You’re going to be fine, Scorchy.  I know it.  You’re a fighter.  Nothing gets the best of you.”  Sure, I know I’m not going to be fine in the long run, but they’re scared.  They want to believe I’m going to be fine.  Let ’em say what they want.  I know where their hearts are.  When the time comes and it’s time to draw the line and tell them to take off their rose colored glasses I’ll tell them, until then it’s not hurting me any.

A couple of my colleagues have said to me, “I have known so many women with breast cancer and they’re doing fine today.”  I don’t think that’s insensitive.  They’re relating their experience–which has been positive!  Providing we were spared the horror of family members or close friends who have died from breast cancer, we thought the same thing: get a mammogram, catch it early, do yoga, you’ll be fine!  One of my friends mentioned that her nephew’s mother died when he was six–breast cancer at age 31.  Mortified, she apologized.  No apology was necessary.  It is what it is; I might even want to know more about it.  What is the difference between that and a site that chronicles the death of a beloved spouse from MBC?  The latter is a hell of a lot harder for me to look at,  let me tell you.

Someone who isn’t a physician says to you, “My Aunt Louise had lung cancer.  She went through hell, but she’s alive today knock wood!”  We get insulted?  It would behoove us to remember that all cancers are the same to people who never had cancer.  Now, if a doctor said that to me I might ask that he hand over his license, but you get people from everyday life who–if they’re fortunate–only read about it, see it in the movies, or are two shades removed from it.  What the hell do they know?  Leave ’em be.

I’ve read plenty of discussion boards these last eight months and I have lost count of the number of times women with breast cancer have responded to posts insisting that a positive attitude would make someone prevail, a belief that the person to whom they’ve responded will be fine, or regaled readers with stories of every other cancer war story they’ve ever heard and then equated it with someone’s breast cancer.  Or the women who shrugged off one man’s emotional abuse and lack of support as a “guy thing.”  People with cancer can be just as clueless as those without.

I think we have every right to express our dismay or disappointment because the people around us don’t always understand.  How can they?  We live with it every day, so when we talk about it we’re in a safe zone of shared experience and understanding.  We can bitch about the dismissive “friend,” the rude stranger, the clueless acquaintance, and the ignorant fool.  Certainly parodies of the stupid things people say are spot on in their commentary.  Those of us with cancer have to grow a skin that is thicker than normal.  Wanting those who would not normally have a care in the world about cancer to stop and consider how we feel is normal; expecting them to do so is Utopian.

This entry was posted in My Stage IV Life, Social Commentary and tagged , , , , , , , , , , , , , , . Bookmark the permalink.

63 Responses to In Which I Don’t Tell People What to Say

  1. Listee says:

    Just found your blog and as another sarcastic person, love the tone. I did like this post but my question is what do you do when you’ve tried to explain to a close friend what you need and they out and out ignore you? I’ve done this over and over and now my solution is to not tell her anything about treatments, etc because I get too disappointed in her total lack of response. No acknowledgement of what I’m going through at all. BTW, i am MBC, live in British Columbia, Canada, recurrence in May 2011.

    • Scorchy says:

      HI Listee! Thanks for stopping by to reading The Boob and for your comments. Some people have cement for brains. Here you’re going through an experience no one wants and you have to deal with a person who has their head up their arse.

      I would normally begin to wonder where her head and heart are, but sounds like she’s swimming in the denial. And, honestly, how much can you really care when you’ve made a decision not to listen to a friend going through something like this?

      I have family members like this. I just blow them off. Awwww. No money in the will for you!

      Hey readers, do you have advice here?

      • Listee says:

        Thanks for the quick response. I do think it is denial too. I’ve tagged her as an ’emotional moron’, incapable. 🙂

  2. I agree completely with your post. It’s important to look at a person’s intentions. Most people are big-hearted and well-intentioned, even if clutzy. That said, it’s a little different than the baby stroller comparison. Especially when one is newly diagnosed, that person feels traumatized. They walk around raw and shocked and just can’t handle much. I think your perspective is important that we don’t become self-absorbed as the next, but sometimes we need to bitch and complain among ourselves.

    • Scorchy says:

      You better believe it! There is nothing more important than being able to bitch among ourselves and share our experiences. It makes all of the difference in the world to be able to speak openly among others with the same/similar experiences. It is life saving–and I don’t think that can be overstated enough. As always, Eileen, thanks for sharing your point of view. xoxoxo

  3. bethgainer says:

    Scorchy,

    I love your snark, and I love your new angle to this topic. I think most people mean well when they make their remarks, but it’s true that they really want you to be well and are afraid. And we can’t always begrudge this. I really learned a lot reading your post; your posts always make me think.

    • Scorchy says:

      Thanks, Beth. Sometimes I go into my own posts thinking one way and finish them thinking another. I, like Socrates, always want to question my assumptions. I’m so happy that you read The Boob. xoxo

  4. Excellent post – you basically had me nodding along right from the title to the end. Though I can’t comment on that stroller situation, living in Canada where everything is giant aisles are generally fit for elephants!

  5. Roz warren says:

    The world deserves a Scorchy book. Or if it doesn’t, I certainly do. So write one already! (If I still ran a small press, I’d publish it myself.)

  6. Jenn says:

    Thank you for taking a different spin on this, Scorchy. It is so hard to take that step back and have a wider perspective. I admit to being one of the supersensitive and oft insulted types… even when people don’t mean it. Wouldn’t life be easier if I could sometimes let things brush off? Oy vey… thanks for bringing up these things to think about. What a hard journey this is. What a pleasure to finally meet you in Philly this past weekend! xxoo

    • Scorchy says:

      I figure with all we have to worry about, why worry about what people say? (Unless they’re really obnoxious. Then we should bite them.) So happy that we connected finaly. xxxxoooo

  7. TheDirtyPinkUnderbelly says:

    So insightful. When I blogged about things I hate hearing, I got hate-mail from a couple of people who didn’t have cancer. I finally got so fed up with it that I refused to engage. In my defense, it was titled in a way that should have made it obvious that it was MY OPINION. This piece, from the Mind of Scorchy, gives me insight and a little more humility. Thank you, Dear.

    -shelli

  8. MBS says:

    Hi Scorchy. Great post. I was bothered by the rash of preachy articles lately about how *not* to talk to cancer patients. It’s nice to see some counterpoints. I’ve gotten a whole lot of awkward and unpleasant reactions and seen my pre-cancer self in some of those reactions. I try to see the well-meaning fumbling lovable idiots underneath it all.

  9. dear scorchy,

    what a relief to read this post, to turn a running theme of aversion to assholish stuff people do and say to consideration towards self absorption, and all it’s accompanying attitudes. could be that listening, beyond words that are spoken aloud, and then responding in a compassionate way makes far more impact in the universe than our complaints that people are insensitive and stupid. i am not a “god” person. but when people say they are praying for me, i feel grateful and say, “thank you”. who knows – maybe the deeply caring act of sending pleas, in the form of prayer for other’s well-being is just as meaningful as the collective grief we feel when we read about another’s reccurrence or of their death, and the messages of sorrow and support and poetry and tributes. caring can take on many forms – and whatever way it is expressed – i’ll take it! having an open and receptive heart to the caring of others, albeit at times ackwardly expressed, is a gift, and it is one that behooves us to not just to be grateful, but also to be engaged in an EXCHANGE of caring.

    i absolutely love this post, scorchy; because it mostly boils down to getting outside of ourselves, and the realization that being compassionate towards others helps us be compassionate to ourselves, something we often fail to exercise.

    big love and thanks, XOXO

    karen, TC

    • Scorchy says:

      MWAH! I have a colleague who tells me that he and his wife light a candle and pray for me in church once each week. I am not a believer, but I thank him. I appreciate the kindness–and I really do.

  10. Jada says:

    Another great post Scorchy, great illustration of how political correctness has gone mad, some of the things you said are so funny it reminded me of that time my male co-worker from India asked me who I was feeling after my mastectomies while robbing his nipples in circular movements with both hands, that shit was so funny, how can you get mad at that?

  11. helensamia says:

    Love you writing… I have a bit to catch up on… When telling people I had cancer I used to say “I have a little bit of cancer!” … When I look back now that was really silly as cancer is cancer and never little !!!! Lol….. I think I thought I was saving others from the full impact…

  12. LiseyBendy says:

    Passive – aggressive breast pat and whispering “I’ve got the cancer” Scorchy, you crack me up! Seriously though, cancer has given me a VIP pass to self absorption. I created a blog. Something I never thought I do in a zillion years. It has helped shift those with their awkward silences, those who I call the avoidance strategists and stay away, and those that want to check in with me constantly because I have cancer and might die, to those that want to talk to me (not about me and not about cancer), but about my blog like its the latest installment of the Truman Show or something. So when people don’t know what to say, they always can refer to a humourous point in the blog. So it’s been beneficial. I don’t know, I reckon anytime someone says “something” it’s better than those that say “nothing” so I’m just trying not to judge.

  13. Cin says:

    When I have someone approach me with the “well…..you look GREAT! You’ll beat this!” “You are so strong it doesn’t stand a chance”, etc…. I smile and nod, knowing they have not a clue since they haven’t been through it themselves. They are uncomfortable being in the face of someone who has the big C. I’ve been through the first big C in my 20’s when most of us felt immortal. Such a rude awakening! So I’ve been at it a long time. The only way some can relate are through experiences of an aunt, cousin twice removed, coworker, neighbor, etc. Again, I tend to listen and nod…. It’s the shock of they don’t know what to say, so they say something positive to try to be supportive and comforting. To many, prayer is the answer. That one does tend to make the hairs on the back of my neck stand up. Although, I half smile and nod. Indeed they try. They mean well. I have a post i wrote, last year, because a lot of people would ask me, what should they say or do to help someone else they just heard has cancer. I tried to pass on a few hints on how they can respond, and most importantly how they can help.
    Thanks Scorchy, for sharing another great post! XO
    Cin

  14. Carolyn says:

    I posted some links to a few of the “how to talk” articles on facebook, friends say, “I don’t know what to say to you”… I thought the articles would help. Then I started thinking about it. I wondered if I was simply going with the flow, that weird thing some of us do when certain topics gain momentum. It was great to see your essay this morning! I don’t think I have any right to say and do whatever the hell I want, that’s not who I am, why would stage IV change my behaviour? – well, when I’m not a steroid induced maniac anyway.

    I love this post Scorchy, you express so very well many things that swim circles in my head… as an aside, I am a parent of three (adults now), and I’ve never taken up an aisle with a buggy or faced off another human for space. I’m the one who gets out of other peoples way. We have a lot space in Canada, but that’s not my point. 🙂

    I don’t want my health status to change who I am. Cancer has already screwed me over enough the last four years, time to take back my head and live out my days being me. Or is that still self absorbed. Shit.

    xoxoxo

    • Scorchy says:

      I think all of those posts and articles are really helpful. I just know it’ll be my luck that everyone I know will ignore each and every one!

      Every time I run into one of these obnoxious moms I remind myself they don’t represent all moms!

  15. Marie says:

    Love this post. I have a hearing loss. I get really tired of people at large meetings and assemblies who say “Oh, I don’t need to use the mic. Everyone can hear me.” Clueless is clueless. Humans are self-absorbed. We have ego problems. Our job is to remember the “we” in that last sentence, and learn to practice compassion. All of us have made these very mistakes and will continue to do so. If not with insensitivity to cancer, then to something else. Lots of other issues, in fact. How about size, disability, class, race, gender, etc, etc, etc. Like the time my sister got a ticket for accidentally parking in a handicapped zone (tree obscuring the sign) and she was pulling out and another car pulling in. She jumped out of her car to tell the other driver, “Be careful parking here! It’s a handicapped zone!” to hear the other driver flatly state, “I’m a paraplegic.” Wanted to die. We are faulted and we need to learn to grow our perspectives. And reminded again and again and again. And we need to remember no matter which side of the error we are on – giving or receiving. And we need to be nice. For me, the Dalai Lama says it best, ““If you want others to be happy, practice compassion. If you want to be happy, practice compassion.” Thanks for the great post, Scorchy!

  16. Hey, I love being told that I look great. More importantly, this is a great post. My cousin and I are about to embark on a debate about the rules of etiquette for cancer patients. She, who does not have cancer, maintains that you get the right to be an ass hole. Everyone else should be supportive. She was kind of kidding but mostly not.

    I believe that we have a responsibility to try our best. That means sometimes people don’t know how to treat us and vice versa. Communication is so important. We are all different and even on an individual level our thoughts and feelings can change from one day to the next. Awkward conversations can turn into insights.

    And yes, I am sick of my self-absorption. I am working to get the brain space to increase my band width for intent listening and for better tracking the lives of my loved ones.

  17. The Anti-Cancer Club says:

    Reblogged this on The Anti-Cancer Club and commented:
    cancerous conversations

  18. My Sweetheart and I have been talking about this thread for a while. As he says, how can I fault the people who tell me I look great, especially when a few months ago I was being taken for his mother?

    Hmm, my SIL, just starting chemo for a rare cancer, posted something from the course on miracles today to the effect that you’re never angry about what you think you are. When I’m annoyed by the “you look great” comments perhaps its not about someone not being sufficiently sensitive. Perhaps it’s because it is so difficult to accept that my cancer will kill me when I look great.

    As you said, who cares what they say, if they listen.

    Thank you for reminding us to check our perspective.

  19. Victoria says:

    Very nice post. I plead guilty to having said most of the things on your list. My antidote for self-absorption in my own life are my AA meetings. It’s the one place where for one hour where I am forced to listen to other people and take an interest in what’s going on with them. Every time I go there is almost always something that is helpful to me in all areas of my life including dealing with the cancer. Today’s gem was. “Fear is about the butterflies in your stomach. The trick is to get them all flying in formation.” We all had a good cathartic laugh after that one.

    It’s a pretty non-judgmental place and you can say anything you like (and so can anyone else) and “cross-talk” is absolutely forbidden – no interruptions or editorial comments. As for dumb comments, well, I’ve made a few in my day and so has everyone else. We pretty much has a “live and let live” attitude. You can’t control people, places, things or situations, they say, and I’ve found that be 100% true. Doesn’t mean that I don’t still try but I’m a lot better than I was.

    This is not an advertisement for AA. Rather it is to mention the importance of having safe places where we can meet imperfect people like ourselves and get out of our own heads from time to time. Places where we can listen as well as talk.

    Just my take on it.

    • Scorchy says:

      Victoria–this is wonderful! You and dglassme highlighted the very thing that si most important of all–someone listening.

      My mom used to attend Al-Anon meetings and she often spoke of that safe zone. That is the most important thing of all, I think. Having a place to go (whether physical or virtual) where we can feel safe, where we can talk, and where we can listen.

      What was it Dr. Greg Smith said: “No one cares what you know until they know that you care.”

      xoxoxoxo

  20. dglassme says:

    “Those of us with cancer have to grow a skin that is thicker than normal”. How thick is normal skin so I can measure where I’m headed? Thanks for picking on me my dear, thin skin here. You knew I’d come for this hook, line, and sinker…

    There are some very intriguing parts that have come about from my recent undertaking of emailing colleagues about my return with some suggested reading — do I detect a small little war over space and ideas goin’ on there in NY? No…not competitive Scorchy, she doesn’t care how many countries view her blog, who is counting, Greenland. Your points are well taken, and for many years I’ve lived a life of I don’t give a damn what other people think so why should this be different? Maybe because I feel more alone than ever, I was alone before but, now it is all echoes of silence and brief moments of folks muttering at a distance. A very cold isolated environment. Don’t get me wrong I have lots of friends, surface friends, not good ol’ boys like in Ohio. Much to my chagrin, bearing my co-worker’s bullshit now seems to be far more difficult because I’m afraid I’ll hit ‘em smack dab in the middle of their face if I hear them making fun of me. It was already a very catty environment. Essentially the take away is because I cannot change others’ behaviors, all I can do to remedy this situation is to cope effectively with the potentially problematic negativity and, in doing so, reduce the impact that it has on my ability to perform effectively – now that sounds like some sort of pink pussy.

    • Scorchy says:

      YOU are hilarious. You know what they say: Haters gonna hate. I think when we’re faced with the catty bullshit that is precisely the moment that one schools the ignorant. Sort of the cancer version of “You talkin’ to ME?”

      Growing a thick skin isn’t easy–and I surely have some thin spots can get might sore sometimes. I’ve written before how I am a big fan of the Stoics–Marcus Aurelius, baby. Read that pretty much everyday (as I’ve done since the 1980s) and you grow a thick skin. I wrote about him in my post Affirmations.

      You’re not alone, honey bun! You’ve got a collective virtual hug that should be squeezing the crap out of you any minute now. 😛 xoxoxoxoxoxo

    • Scorchy says:

      Effing Greenland, man.

  21. Great post as always, not sure I agree with it all, will have to think about it. I will say this now, tho’….maybe everyone would best be served if they stopped talking AT each so much, and asked the other person to speak, and then really listened. I think a good portion of the “dumb shit people say to cancer patients” issues could be solved this way.

    • Scorchy says:

      Seriously! Something I neglected to think about in the post is that it really isn’t about what people say, it’s those who take the time to listen. That’s really the most important. And I have been blessed 100 times over with people who stop and listen.

  22. Mary says:

    You nailed it, perfectly. Thank for a thoughtful and descriptive post. I will be re-reading this one again and again. You are an excellent writer.

  23. Susan says:

    Great post and I really appreciate the humor you added to the topic. There are times people don’t know what to say and I think you are very understanding of those who don’t know any better when they say you are going too be fine. What they mean is – You are fine!…In fact You are boobalicious! (don’t know where that came from?!)…

  24. I’m gonna be laughing all day at the image of you scrunching up your face and saying “Oi have breast canceh.” Too funny.

  25. As always, a great post ~ perhaps your own talk show is in order? xo

  26. Katie says:

    Very well put. Have you started a line of bullshit-free, “So You Found Out You Have Breast Cancer…” pamphlets, yet?

    • Scorchy says:

      I should, honestly. Or perhaps that pamphlet might become a book?

      • dglassme says:

        Scorchy my dear, what are you waiting for? The Ball Grid Array containing your treasure isn’t likely to survive as long as hardback, leap up and capture your madness for others to enjoy in the future, even if there is a cure it would become part of a historical record of sorts.

      • dglassme says:

        FYI…I do recognize a BGA does not truly contain the data but, it is fun to say Balls to you. BGA provides connectivity between chip and PCB. Like you care…

  27. Knot Telling says:

    Another thoughtful and thought-provoking essay. I especially want to thank you for turning my attention to where I’ve been unkind to some of the people around me. Thank you.

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