This is still one of the most important posts I’ve made. One of the ways you can be a good friend to someone going through a difficult time is to use open-ended questions. In this way, you are not projecting your own feelings onto them; neither are you assuming what feelings they are having. Trust me: they’ll appreciate it.
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There are ways in which I will never make you as readers understand what it’s like to have cancer if you haven’t. However, part of the reason I write this blog is to try to explain some of the cancer patient “mentality” (if you’ll accept such a generalization) to those of you who haven’t had cancer. To that end, you can hopefully be better friends, partners, spouses, sons, and daughters. There are things I didn’t know before I had cancer that I wish I had understood.
It’s not that I am special. It’s not that I am so smart. It’s that I have been there. Hopefully sooner than you have. And so I am reporting back from the field. To try to help you. Prepare you. Because if there is one thing I know, one thing I know for sure: you will know someone. It might be your friend. Your parent. Your child. Or even yourself. Maybe you already know someone. But one thing is for sure: you will know someone who gets cancer. And you know what? You already know me.
One of the ways your life changes when you have had cancer is that you begin to understand the phrase “It’s never over” in a whole new way.
As soon as you hear the three words, “You have cancer” your life changes. From the time you hear those words everything is different. You now have a history of cancer — even if it’s a cancer that can be removed and you don’t need any other treatment. It is now a history that puts you at risk. Now every medical problem, every medical history you give, every question mark, every medical mystery must be filtered through the lens of a history of cancer.
A woman I know from college was writing a brief note to me by email to thank me for something nice I’d done. The last part said, “Hope you’re feeling on top of the world (or close to it).”
My reaction? First I burst out in laughter.
Ah, the naiveté of the healthy!
On top of the world! Ha!
Then it actually got me riled up.
Angry.
How dare she think it was over.
Then I got angry at myself for lashing out.
I became contrite.
Why should she know better?
How could she know better?
It isn’t fair to expect people to know better.
Only once you know better can you do better.
If she only knew.
What was I going to do?
Write back and explain to her the error in her thinking?
Should I write back and say:
I counted every day, every hour, every minute, every second to be “done.” But when each thing was “done” there was always something else I was counting toward. Always something else looming. I’m never “done.” It’s never “done.” It’s never “over.”
The language we use reveals a lot.
When someone says,
“You must be on top of the world,”
that means:
“You should be”
“You ought to be”
or
“I expect you to be.”
For someone like me, if I don’t feel like that it’s hard.
I get angry. I want to say all of the reasons why that’s not realistic– why that’s wrong. Why that’s precisely what I’m not feeling.
But then, when my anger cools, I take that and turn it inward. And all I feel is disappointment. Disappointment in myself. Maybe I should feel like that. Maybe I really should feel on top of the world. The fact that I don’t means I’m not as far through this thing as I thought. It reminds me I’ve still got a lot of work to do.
Maybe the battle is not really with cancer. Maybe it’s with myself.
But I think the point remains: just surviving cancer isn’t necessarily enough. It’s not enough to make you feel on top of the world.
You can help those who have had cancer by not making the leap that just because they have lived through this round that they have “won”; don’t assume that they will necessarily be ecstatic, “done,” and ready to move on.
Rather than telling people what they “must” feel, we all can be better friends and listeners by asking questions rather than making statements.
Rather than saying “you must feel on top of the world” think of the difference it would have made if my friend had said, “Now that your treatment and surgeries are over, how do you feel?”
An open-ended question is always a safe conversation starter. I’m going to try it more often in my everyday life; I hope you will too. My wish is that it begins some good conversations between you and someone you care about.
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Lisa, this is exactly right. There is almost an imperative in “you MUST feel better.” It’s not really an exploration into your experience. The conversational stakes become high in telling the truth. You have to whip out a bald contradiction: “No, actually, I am quite fatigued and in a lot of pain.”
Thanks for sharing this insightful post.
Thank you for helping those people who haven’t been there to understand a little better. So often we don’t know what to say. There’s coaching and tips for us when someone we care about is diagnosed with cancer or how you can help when someone is going through treatment. But after it’s over? Then even well meant comments can be plain wrong. I could list quite a few of the wrong, but would appreciate someone writing more about good open-ended questions or conversation starters to help.
Thanks for getting the conversation started. I’d like to hear from other people who’ve had cancer. What are some of the good things people said to you when you finished treatment?
Lisa, I really appreciate this post. It does seem people expect things to be over at a certain point. Hmm. Well, those of us who have been there know this is never really the case. Asking an open-ended question is a great piece of advice. Actually, I think this is true no matter who you are asking. No one wants to live up to how others expect them to be feeling. Thanks for writing this.
Spot on, Lisa! As a cancer “survivor,” I know exactly what you are saying. When I thought I was done with breast cancer, I actually wasn’t emotionally and physically. The healthy population simply likes to think that once we are lucky enough to have our treatments over, we can just pick up the pieces and continue with life as “normal.”
I’m glad you reposted this piece. I get very confused much of the time with the messages I receive. They are closed ended and generally, the person states that they are on they way out, or something else that doesn’t really leave room for a conversation to start. I have been having a very hard time lately, it started with the Arimidex treatment and went downhill from there. I handled it, with my doctor and we decided it was not the right plan for me and my lifestyle. Needless to say, this was a major disappointment, to be left without a plan in place.
Anyway, the people who did message me, to show concern didn’t leave the door open for me to just blurt out what was bothering me. I was “on top of the world”, so to speak once my oncologist told me I could declare my self a breast cancer survivor. For a few days, I felt good, as though I had accomplished something and even baked a batch of brownies declaring with frosting that I was a “survivor”. Within a few days, that elation wore off and I was in trouble, feeling there was nowhere to turn. The side effects became unbearable. I didn’t want to ask anyone any questions because I felt like I failed at surviving breast cancer and that my happiness was just ridiculous. People were happy for me and it was like a celebration, all good, happy ending. I was actually ashamed that the medicine didn’t work out for me, so I just kept quiet, not wanting to let anyone think that I was anything less than a champion at beating breast cancer.
Lisa, I read everything that you write. I can’t speak the truth out loud the way you do. I try to pink wash everything, or just report the “good” stuff. Well, that’s over. There is nothing good about breast cancer, and now that I am without a long term plan, I don’t feel as safe as I did before. At this point, the doctors are letting me readjust as the side effects wear off. I am not sure what my future holds at this point.
Let me just say this. Right now, at this moment, I understand your words better than I ever have before. I appreciate them and understand that it IS never over. The fight continues forever. I’ve learned a hard lesson about getting carried away, then ending up disappointed again. So, thank you, as always for telling it like it is.
I have a friend with whom I’ve taken the journey from sudden diagnosis, to immediate double-mastectomy, to now 9 cancer-free years. But, for her, these 9 years have not been free of fear, complications, and long-term effects. From the beginning I have done as you suggest: ask how she is and then listen. More than once her answers have surprised me; there is often a difference between my assumption of what she is feeling—what she cares most about—and what she is feeling. You are right: don’t project, or assume, ask. I also agree with you that getting angry at genuine attempts to be kind that are off the mark and that may result in anger turned inward are an opportunity to educate as you are doing. You write about grief, and I think your suggestions apply to all grief. Asking, without assumption or projection, gives each of us an opportunity to share our lives in an empathy-enriching, intimate way.
Lisa,
It is hard to respond when others place their suppositions on us. One of my favorite ways to kick off a conversation with people, whether I know them well or not, is “How’s your day been?” I don’t think I’ve ever had someone not get fully engaged with me when they answer it. Great post!
Thank you,
Brenda
Lisa, very thoughtful post. I always appreciate the perspective you share. Thank you.
carol
I think this is spot on and in a perfect world everyone would take this advice – cancer or not. Because we all want to share and we all want to be heard.
But, in my opinion – and I’ve had cancer – people say these cliche statements like “you should be on top of the world” rather than asking how we feel because they really don’t want to know. Cancer scares people. They maybe want us to be OK and healthy but they don’t want to know details and they want us just to move on with life as it should have been.
I hate to be so cynical but this is truly what I’ve experienced. Great post though!
but, really, shouldn’t this be true of any and every interaction? Projecting one’w own wishes onto another can be unconscious, a reflex. I experience it all the time wih a different diagnosis. I agree with Wendy, everyone wants to be authentic and to be heard. But do we also want to hear? Being a good listener is an art that isn’t much valued by the culture of our society; it doesn’t favor such intimacy and generosity of time, so we don’t have that experience to draw upon.
thanks for expressing your experience so well. I have been working on developing my listening skills, and your perspective is gratefully received.
I commented on this a few days ago but alas, my comment is not here. Yikes!
I’m always here reading you and supporting you. I’m so glad you re-posted this, it’s such an important topic (lesson).
I think it’s important that we are able to tell our truths and that we are able to listen to the truths of our friends — even in the difficult conversations.
Lisa,
This is a fabulous post. When I was diagnosed there were times I felt like saying, “DON”T TREAD ON ME” to those who felt compelled to share their cancer stories. My cancer isn’t your aunt’s/uncle’s/neighbor’s/etc. I won’t regale you with horrible delivery stories if you are pregnant, so keep your cancer stories to yourself, thank you very much.
The kind of listening and gentle questions you describe lead to authentic communication where both participants learn from each other. Fears can be aired, if need be, but that prerogative is left with the patient. This is as it should be!
Thank you for such a thoughtful post:)
Jody
One of the things I like about your blog is your honestly. So I’m going to be honest — I don’t understand your reaction. Obviously I am one of those ignorant people who’s never had cancer. But your college friend said “I HOPE you’re feeling on top the world,” not “you MUST be feeling on top of the world.” I don’t understand what’s so wrong about someone wishing you well. One, she doesn’t know you have cancer. Two, she’s actually hoping for your health and well-being. A futile gesture, probably, but a well-meant, cheerful, and positive one. Now, I have not had cancer but I have had a chronic illness. People say things like “hope you’re doing well” and “get better soon” and other niceties you say to sick people. While I did wince a little, the overwhelming reaction was more like “wow, that’s very nice/kind/thoughtful of you, thanks for thinking of me.”
Thanks for the comment. I agree it’s confusing that I go from what she said to a discussion of the many times people say “You must…” and they are different. We all say “hope you feel better soon” or “Hope things improve for you” or “Hope tomorrow is better.” After all, there aren’t that many things we can say.
However, it was an example of being pushed to think “Wow, she thinks I should be on top of the world… I’m just getting through the next hour… am I doing this ‘wrong’?” When we deal with the death of a loved one or an illness, my point remains: asking someone how they are doing rather than projecting our hopes/wishes onto them is best. But I agree. “I hope” is always better than “You must be…” But that one was said many times to me (and others, judging from comments).
And by the way, just to clarify: she knew I had cancer. The nice thing I’d done was help a friend of hers during the friend’s chemo/surgeries.
Thanks for reading, and for the discussion. It’s always good for me to clarify things I’ve been too vague about even if you disagree with me.