by Carol Fragale Brill
Are you old
enough to remember the old Art Linkletter show, “Kids say the Darnedest Things?
It turns out, adults do too. Since sharing I have cancer, I have heard some
doozies. Maybe it’s that facing someone with an illness or disability unsettles
us to the point where we grope for words, or ramble and unintentionally blurt
out the not-so-empathetic thing.
Here are some
of the “darnedest” things I wish I could un-hear.
1.
Cancer
Stories with unhappy endings -
“My (fill in the blank; sister, mother, cousin, neighbor) just DIED from cancer.” Or even worse “Died from the same kind of cancer you have.”
I can’t tell you how many times, after hearing I have cancer, the first thing someone tells me is about someone that died. Most of us have at least
one personal story about someone who suffered an unpleasant cancer death.
Unless I ask you, this is
not a good time to remind me that people die from cancer. If you feel compelled
to share, make it a hopeful story about someone who beat the sucker and is cancer-free.
2.
Chemo
Horror Stories. “Do
you know how often after chemo, cancer returns with a vengeance?”
In what universe does a
person in the midst of chemo treatments need to hear cancer and vengeance in
the same sentence? The only thing the local store-owner who said this to me
accomplished is making me want to avoid him
and his store with a vengeance.
Before starting chemo, I
was freaked out enough about losing my hair, the possibility of nausea and
vomiting, and the long list of other potential side-effects shared by my doctor
without being bombarded with unsolicited real-life accounts of organ damage,
excruciating mouth sores, fingernails that turned black and fell off, or life-threatening
dehydration. There is only so much cancer and chemo horror I can take-in
without completely wigging-out. If I want to hear the gory details, trust that
when I’m ready I’ll ask you.
And for the record, my
experience with chemo isn’t nearly as nasty as those alarming stories. That’s
what I’d like someone embarking on their own chemo journey to hear.
3.
The
royal “We”. “We
will get through this,” “Just six chemo treatments? We can do that.”
On a recent episode of
Parenthood, I almost cheered out loud when a character who plays a cancer
survivor complained about how much “we” statements bugged her.
Not all “we” statements bother
me. I love to hear “we” when you mean you and someone else like, “we
are praying,” or “we want to help.”
I know my cancer causes
distress to those who care about me. I believe when you say “we” you mean you want
to be there and support me. Instead, what
I hear is you believe you’re experiencing the same thing as me--that you have as much
skin in this game as Jim and me.
“We” can wish it were different. The reality is this cancer is happening inside only my body. That changes my life and Jim’s in ways it doesn’t impact anyone else. There are parts of having cancer I have no choice but to do alone—parts even Jim can’t do for me.
“We” can wish it were different. The reality is this cancer is happening inside only my body. That changes my life and Jim’s in ways it doesn’t impact anyone else. There are parts of having cancer I have no choice but to do alone—parts even Jim can’t do for me.
Melissa Etheridge, a
cancer survivor, says it poignantly in her beautiful song, “This is Not
Goodbye,”
Where I go now, I go alone.
This path I walk, these days of stone.
Before using the royal
“we” it might help to ask yourself, “How does her cancer change my day to day
life?” If you are doing pretty much what you always did, consider ditching the
“we.”
I know no one intends to upset me when they say these darnedest things. Innocent or not, some remarks nearly pushed me over the edge in the early weeks after my diagnosis when I was numb and fragile—when it was nearly impossible for me to hear a sad cancer story and not project the same thing happening to me. While I’m getting better at not agonizing and melting down, there are still things that rattle my hope and that I’d rather not hear.
This was a hard post for
me to write. I don’t know if others with cancer feel the way I do, so in spite
of the title, this post is about me with cancer, not we with
cancer.
Please share in comments and
help me better appreciate and understand the flip-side, What does hearing a
person has cancer—or any serious illness or disability—feel and sound like
to you?
And, follow this link to hear Melissa
Etheridge’s song, “This is Not Goodbye”
https://www.youtube.com/watch?v=ksihRX4kPtM
As a nurse, I always knew what to say to the "patient", as a friend or family member, I learned that if you can't be supportive and positive at that moment, wait until you can before you say something. I also learned that it is important to know the mind-set of the person with cancer. Do they want hope? Do they want realism? And since I am the nurse-friend-family, what role are they looking for from me? Usually, as with my mother and sister-in-law, it was all 3. That was a balancing act that even a seal would have a hard time with!
ReplyDeleteSo, if I was silent when you were first diagnosed, now you know why. I was waiting to take my cue from you. And, notice I never said "we" because this is not about me. It's about you - your illness, your stress, your coping methods, your healing, your wellness, your survival and your future.
BTW, love the "wigging-out" comment!
Julie V
Julie, that is great insight for me. I have so many nurse friends and others may be waiting too. Thanks for sharing.
DeleteI did notice and wonder about your silence and am so glad you are back and sharing. :)
and, I knew you'd like wigging out
I have learned to ask, "How can I best support you right now?" What you need today might not be what you need tomorrow, but it is about what would help you most right now. Not me. Not we. You. Thank you for sharing this important information that we all need to hear, Carol.
ReplyDeleteThanks Diane. You nailed it, asking an open ended question and then listening is what I usually need most.
Deletethanks for stopping by
carol
We must live among weirder people than you. Here are a few things we heard: When my husband had been undergoing chemo (w/the prospect for lots more) for a year and there was no sign of his (pancreatic) cancer: "Now's the time to cut your ties with western medicine." The one that sent me over the edge: A woman informed a group of us that Steve had cancer because he was "out of balance." And a number of people ascribed my agnostic husband's miraculous recovery to the power of religion and strenuously suggested he come to church with them. Also, to be even more curmudgeonly, I know Steve got tired of hearing how "brave" he was. His response: What the hell else would I do? The best thing to say to someone with cancer is: Can I take care of your dog while you're out of town getting treatment? Or: Let me bring over some casseroles you can heat up with things get away from you. Or: I'll pick that up for you when I'm in town. Or, of course, my young step-son's eloquent remark: Bummer.
ReplyDeleteEllen, no, I've run into some of the same people and heard versions of all of those too, just didn't know how much I could get away with in one post :)
Deleteyou are so right about offering something specific. That takes the burden off of me. I love when my neighbor Charlene says, "I'm taking you to chemo on Tuesday to give Jim a break, orTeala leaves her homemade "chemo reward" treats on the porch, when my good friend Claire bakes us cookies, or Janine is making Swedish meatballs, or Pat 's making beef stew or chicken pot anyway so it's no biggie to make extra for us. My sister didn't ask if I needed scarfs, she just picked a 1/2 dozen beauties and sent the. These are so many more examples I could share.
thanks for your thoughts and for validating what I feel.
best
carol
You could probably use this as a basis for a new book called "What not to say".
ReplyDeleteOf course, I'm trying to remember if I was the source of any of these faux pas.
Dot
Dot, the opposite, your humor has more than once made my day.
Deleteand, I do have a book idea, just not ready to share it here yet. :)
Mary Anne, No worries, you have never written anything that upset me. I appreciate all of your support.
ReplyDeleteAnd, Amen on words being tricky. :). Xoxo
Hi Carol. I remember that show-I used to watch it with my mother! You are right, sometimes adults do say the darndest things too. I'm sorry you had to endure those, but admire you for trying to increase sensitivity. It wouldn't surprise me if you were journaling this experience to share at a later time to help encourage others-so like you! I do read your posts and appreciate how you share. Sometimes I might be too quiet prefering the quietness to talking just to talk or say something "not helpful." Thanks for sharing you YOU feel. Please know I think of you SO often and am praying for you. I'm sorry I didn't say that sooner. Sharon
ReplyDeleteSharon, thanks for letting me know you're out there praying and keeping up with my posts. You know me pretty well. I am journaling and have an idea cooking for how I might share what I'm learning (often reluctantly) on this journey.
DeleteCarol, I laughed when you railed against the royal "we". I came very close to punching a chemo nurse one day when i was at a particularly difficult period in my course of treatments. Thank goodness my fabulous mother saw what was happening and held my arm down. The surge had asked, "How are we doing over here?" I wanted to offer her my seat and let her get the treatment for a while so "we" could truly be sharing the experience.
ReplyDeleteAlong with the darnedest things you mention, the one that got me was the people who said things like, "It's God's will." or "God wouldn't give you anything you can't handle." Excuse me, I don't believe in a God that sits up in heaven and smites people with cancer cells. Nope.
Overall, I think people don't realize how thoughtless they are being. They don't know what to say, so they fall back on platitudes. People are afraid of what the patient is going through and don't really want to get too close to that fear. When I was going through my cancer treatment, the best thing anyone said to me was, "How are feeling about all this?" then truly listening to what I said.
Elizabeth, and, I laughed at your story about wanting to sit that nurse down in the chair. Been there and felt that and it's so reaffirming to hear from someone else who has been through it. thanks for sharing. best, carol
DeleteIt's pretty hard to imagine that some people can't figure out that the above comments are most inappropriate. I am a breast cancer survivor of 18 years. After being completely floored by the diagnosis and at the remarks of a rather callous surgeon that I had the ugliest type of tumor ("poorly differentiated"), and reading every book on the subject ever written, I became more comfortable with the whole cancer-does-happen concept. It changes the way you think about things and it's not all bad either. When I find myself lapsing into "poor me" thoughts, I remember what it felt like in those early days and think how I've become comfortable with having had cancer (not once nut twice, as I got uterine cancer two years later) and can adopt a live-for-the-day attitude. My thoughts are with you and thank you for sharing your cancer experience through your blog.
ReplyDeleteHi Lynn, it does my soul so much good to hear from survivors. And TWICE!! I don't know what to say. Sorry you had to endure twice, and happy it is now far in your rear view mirror.
ReplyDeleteI commend your courage in reading every book on the subject. I find I have to get my info just from my doctors. Reading or Googling gives me too much info that freaks me out. A good reminder that we all take this journey differently and reinforces what others have said is best to ask and listen to what is needed
Hope all is good with you and your writing
Best,
Carol
Well said! Speaking as one of your good friends I would much rather know that what I said was helping or hurting. I think people do struggle with what is the right thing to say but as "the other half of my brain" has taught me, just ask open ended questions and be a good listener. Oh, and throw in a "listening check" every once in awhile just to be sure. Love ya! Claire
ReplyDeleteso, I just want to be sure I understand that you are saying the key is to ACTIVELY LISTEN?
DeleteHAHA, love ya back carol
Carol, another awesome post from the trenches. I remember feeling similar rage when I was pregnant, which was a happy time for me, except for the running commentary about my body changes which were somehow socially sanctioned. Personal unfavorite "Are you sure there aren't twins in there?"
ReplyDeleteI can also relate as I've been struggling with severe headaches this year, and when this comes up in conversation, people often have suggestions of what I should do to cure the problem. Which is well-intentioned, and sometimes helpful, but more often than not, just unsolicited advice that I don't need or want. I try to just smile, say thank you, and move on mentally, but managing other people's nonsense is hard when I'm not feeling well.
A friend who's a cancer survivor thinks that people freak out around sick people because we remind them of their own vulnerability. I think this is a wise insight. So I try to remind myself of that, have compassion, and stick with people who understand. At least with headaches, unlike cancer or pregnancy, I can fly under the radar :) One thing to be grateful for!
Thanks Julie. Sorry to hear your headaches haven't subsided.
DeleteI think people mean well when they offer advice, I just wish they'd ask first if I want to hear it, or at least pose the advice as a question, like have you consider ...
I agree with your friend that people are often trying to reassure them self that there is a way to protect from cancer happening to them
Miss you and good to see you here.