I HAVE CLOSED THE COMMENTS ON THIS PARTICULAR POST SINCE THE ROBOTS SEEM TO LOVE THIS POST. IT IS BEING READ QUITE FREQUENTLY.... IF ANYONE STUMBLES ON THIS POST AND WANTS TO SAY SOMETHING, JUST LEAVE ME A COMMENT IN ANY POST AND I'LL MOVE IT HERE.
Yesterday, Marie Ennis O’Connor started quite a discussion on her blog. It’s a must read but if you want to finish this first, I’ll give you a VERY brief synopsis. Once again, she brought the importance of our words back into the spotlight. Specifically, Marie talks about the death notices of Robin Gibb and those ever-famous words, “lost his battle.”
Yesterday, Marie Ennis O’Connor started quite a discussion on her blog. It’s a must read but if you want to finish this first, I’ll give you a VERY brief synopsis. Once again, she brought the importance of our words back into the spotlight. Specifically, Marie talks about the death notices of Robin Gibb and those ever-famous words, “lost his battle.”
That’s all you are getting from me. You have to read the piece and the
comments. She’s eloquent. I’m the mostly irreverent, wise cracking
court jester. Her words were very
timely for me. The night before, I was
up far too late. This social media
stuff is killing me. First, it was the
west coasters. As I’m staring at my
carriage, which is about to be turned back into a pumpkin, they are watching
prime time TV. THEN, I set my sites
east. Coffee is being poured on the
other side of the Atlantic. As the songs
goes, “Here I am……clowns to the left of me, jokers to the right, stuck in the
middle.” The only difference? I am the clown, the joker AND the one stuck
in the middle.
Why was up I too late the other night? I read something posted on Ann’s Facebook page. Ann is a Stage IV
patient (and she was attacked on her OWN blog about how she should be eating better which PISSED ME OFF since, when one is retching from the toxins being coursed through
one’s veins, ANY calories count…but I’m totally off topic here).
Ann took exception with something that was posted in an
online support forum. The section of this forum is specifically for Stage IV breast cancer patients and a caregiver
decided it would be a good idea to share her sorrow about her mom’s rapidly
deteriorating condition. I don’t
begrudge anyone who needs to reach out for support. BUT, if a particular area in a support forum is
set up for a specific group of people, I don’t think it’s appropriate for anyone
who is NOT a part of "that club" to participate unless they tread very very
VERY lightly. At most, empathize. But, a “war” story describing in graphic
detail, the horrors of the way death is unfolding? When the “audience” is a group of TERMINAL
breast cancer patients?
Words Matter. Those
words were simply out of line. Way out
of line.
When I read Marie’s blog yesterday morning, I remembered
that her suggestion that we consider hosting “writing challenges” on our blogs. In my
typical, long-winded fashion, I’ve finally arrived at the real reason for this
post. I’ve come up with my own writing
challenge and I hope at least some of you will share your thoughts with me.
What are those phrases, those words, those things you’ve
heard spoken (or written) that have caused you to become
irritated? Annoyed? Angered to the “I’ll seriously hurt you”
point? Gotten cranky over? Were they said to you? About you?
No rules. It’s a free
for all on this blog. Share away. If you want it to be A Real Challenge, just
select ONE. Me? Not so much on the picking one thing. I’m just cranky over everything.
I will start. It’s
only fair.
Here’s something that was repeated to me. It was a bit of advice dispensed to a breast
cancer patient. I’m wound pretty tightly
so most everything will set me in motion but this HAD to have been as close to
“I’ll punch your lights out” as it gets.
If the words were spoken to me, about me, I’m pretty sure a closed fist
would have followed.
“You obviously aren’t
praying hard enough or you would be better.”
Your turn. Go!
What a great post Anne Marie and I share your frustrations over the lack of sensitivity shown to the members of that site. I am definitely joining in with this writing challenge today and thanks for prompting us.
ReplyDeleteThanks, Marie for the suggestion which prompted this post!
DeleteYou're lucky the CANCER WAS FOUND so you could be treated and CURED???????
ReplyDeleteHappy to still be here, but NOT SO LUCKY to have to go through that.
As far as your prayer comment, I think God said no to me because He had a much bigger plan for you. You are the living proof of that.
You know who xoxoxoxo
I love you. Thanks for suggesting there is a bigger plan in place. I'm in a nail biting mode right now because of this "plan" xoxo
DeleteDamn, Marie, that not-praying-hard-enough comment really sucks. I'll be writing a post on this soon, and like you, a lot of statements set me off. Here's one from a co-worker at the time, envying me for taking time off from chemo: "Don't take this the wrong way, but you are luckier than all of us who aren't getting two vacation days off a month."
ReplyDeleteCan you BELIEVE IT??????!!!!
Yep. Just sooooooo lucky to have those vacation days..... Makes you wonder what people are thinking AND more importantly, do they realize hours later, "wow, that was a really assanine thing to say to the woman with CANCER?!?!!!"
DeleteHoly crap - someone actually said you were lucky to have these vacation days???? Yeah, sure, I love spending my "vacation days" puking my guts out. Like a trip to Disney!
DeleteThe words that bothered me were, "What do you think caused it?" I always wondered if somehow they were implying that I was negligent in some way.
ReplyDeleteIdelle. The blaming is awful. I know this is an issue that's been discussed by many off their blogs. It's up to us to dispel the untruths. Some of them are so hurtful.
DeleteThanks very much for giving us another writing prompt, one very close to my heart. I've spoken to various audiences about what to say or not to say to a newly diagnosed person. Yet still I hear wacko things, like the one you featured here. It makes my blood boil. I'm taking up the challenge on my blog today, so stay tuned. xx
ReplyDeleteYour blog is awesome. And so are you! Thanks for joining in this.
Delete..."but you LOOK good." Exactly how am I supposed to look? I won't touch the "prsying hatd enough" comment with a 10 foot pole. God's ways are not our ways.
ReplyDeleteYep. As long as you look good, it's ok. Never mind how you feel or the fears you may have. It's all good if you "look good".
DeleteSorry,my proof reading needs proofing
ReplyDeleteSaturday night I was standing with a group of people and was asked in front of them "How is your cancer doing and where is it now" First my mouth dropped open because I was shocked and everyone around me was looking, and then I answered "it's still there and it's still terminal, still in my bones, but my hips are still swinging, so I guess I am ok". This guy is an idiot, but still. After we left I came up with dozens of come back lines I wished I would have said.
ReplyDeleteOk. This dropped my jaw. Seriously??!!?! Where is it now??? As if your llife is a game of hide and seek or some twisted version of where's Waldo. I'm good at those "hours later come back lines" too. In fact, younjust gave me an idea. Stay tuned......
DeleteA close relative told me I shouldn't have chemo or radiation because she knows people who died from the treatments. Mind you, those people had cancer back in the 1960s. I made it through the chemo, now she is repeating the "radiation will burn a hole in your lung and you will die". I have to tell myself she is scared for me, and I try my best to reassure her, but I would like to be the one who is being reassured that it will be okay.
ReplyDeleteThis is another hot topic.... being the one with the illness AND being the one reassuring everyone ELSE it will all be okay..... Horror stories are always helpful, too. (Where is that "sarcasm font"????)
DeleteI was at a follow-up visit with my breast surgeon about 9 months after surgery, radiation & starting that blasted tamoxifen. I was at the very bottom of the side effects ditch, slammed with fatigue, still couldn't think straight, etc., etc. The fatigue was the worst. I was beside myself, dragging myself to work, then once at home, falling into dead sleep until the next morning. The surgeon asked me how I was. And I told her. And as I told her, I began to cry.
ReplyDeleteShe interrupted me, sighed loudly, and said, clearly exasperated, "What do you want ME to do about it?"
Oh, I don't know, I thought. How about acting like a freaking doctor??
We can form a posse in about a second and bang down that door.... I'm SO there!
DeleteWhat about this? I was telling a friend I will have a double mastectomy and 5 rounds of chemo. The answer was, oh don't worry. It is like having a bad flu
ReplyDeleteUmmm, yep... the flu..... ARGGGG...... Maybe you could have said you hoped they were up to date with their flu shots!
DeleteMy MOTHER made the praying comment to me...."if you went to church, maybe this wouldn't have happened....." Couldn't believe it. But the worst for me was "you look good" - no one wanted to hear how bad I felt or they wouldn't believe it, because I wasn't gaunt and super thin from the treatments.
ReplyDeleteEllen,
DeleteThe "you look good" comment is also my pain. And I agree with you - I really don't think people want to hear how you really feel, they want you to be fine. I understand that, no one wants to see people suffer but sometimes you have to express how you really feel physically. For me, as my chemo progressed, each time I felt sicker for longer lengths of time. Sometimes I would hear (from my father) "you still don't feel any better?" And I didn't look like characters in a movie look when they have cancer. The only time I felt (in myself) that I really looked sick was when I wasn't wearing my wig. In any other instance, most of the time, I did not look sick. I've rambled. . .sorry.
Nataline,
DeleteMy father said the same thing to me. I don't think he fully understood until he had to go through chemo himself. When I was diagnosed the second time, I refused to wear a wig. I was mad as hell and wanted people to know I was sick. But it was winter, so I had to wear a hat a lot, and since I gained weight, looked healthy in everyone's eyes. That's the other cruelty of this disease. Not only do we get our breasts hacked off and we lose our hair, but we gain weight! Cancer patients are supposed to get thin.....that's what everyone assumes. Hope you are doing well now.
I never looked "sick" either and to MAKE THINGS WORSE, I never lost my hair... therefore, MY CHEMO didn't count AT ALL! It's okay that my brains have slowly fallen out of my ears... but it's all about the hair....
DeleteI like that this turned into a mini support session on my blog!
Hugs to both of you!!
What a great writing prompt Anne Marie - I found it liberating to be able to get so much off my chest by joining in with this on my own blog. I also loved reading everyone's responses here - hard to believe how crass and downright stupid many of the comments are!
ReplyDeleteI am so glad you challenged us to come up with these prompts and truthfully, it was YOUR post that inspired me to do this!!!
Deletexoxo
As always, Anne Marie, you make me laugh with your feisty writing. I love it! And I'll be blogging about your prompt soon. I've got plenty to say on this subject!
ReplyDeleteI can't wait to read your thoughts!! AND, Happy Birthday, Nancy....
DeleteIt isn't often we get to share the slime that comes our way after our encounters with breast cancer. Mine came one night at a gathering in a gallery. Several of us were sitting and talking. At that point I was diagnosed with stage 4 breast cancer and had had extensive back surgery that required me to wear an uncomfortable TLSO back brace for over a year; this was about six months into that time. A woman in the group answered a guy who had just arrived and said to me, What's with the getup, referring to my imposing brace. She said, Donna has stage 4 breast cancer. He said to me, Oh yeah? Well, consider it an opportunity to contribute to science. They can study your body when it's over. Honestly, everyone in the group gasped. I'm not usually at a loss for words, but I managed to say, Thanks, but this sure doesn't feel like opportunity for anything. That remains tops on the list. A close second is, You have such a great attitude, I know you'll beat it. That one is frustrating because explaining the reality is impossible without sounding negative because the long-term outlook is much less bright than most people want to accept.
ReplyDeleteYou just Blew MY Mind.... That guy is a MORON for many reasons on some many levels. One of the people on twitter said something best, "You can't fix stupid." That is beyond stupid. As for the rah rah attitude..... I just had a conversation about that. Attitude has nothing to do with survival and it's wrong for anyone to suggest a positive attitude can alter an outcome. It demeans those who are no longer here. What? They weren't positive enough??? Or, they didn't pray hard enough, either????
DeleteThank you for sharing your thoughts here. Without minimizing anyone because we are all equal, for me, your voices, those who are living with a stage IV diagnosis, are the ones that matter most. I can empathize but I will never claim to truly understand what it's like to live with metastatic disease. All I can say is this...... I will continue to make sure your voices are heard FIRST.
Much love to you.....
As someone with stage 4 breast cancer, I look to the advocates like you who know what needs to be done and, unlike us who are fighting the cancer in our bodies every day with drugs and sheer will, have the power to be effective with an articulate voice and the physical strength to pursue answers. I thank you, Anne Marie and fellow bloggers, who are putting into words what needs to be said. You are doing a tremendous job. Love and hugs
DeleteI want you to know how precious your words are to me. xoxo
DeleteChallenge accepted :) I could go on...but have already in past blog posts (my cancer-con post) thanks for a great challenge. A perfect way to vent. Best in health to you!
ReplyDeleteYour reply is AWESOME!!!! I just went to your blog and read it . There are so many things that lay the blame at the feet of those who had the misfortune of a cancer diagnosis. Your rant is fabulous and one of the comments is excellent!
DeleteCare for a wheat grass shot?? Me..... No So MUCH!!!
so glad to have found your blog and this post w/so many replies. I can relate to so many of the examples that you all posted. I think 2 things that were said to me that stand out are:
ReplyDelete*after informing a group of co-workers who had asked about my next step in treatment, I told them I would be having a b/l modified radical mastectomy (I did not mention or express anything about reconstruction) and a female co-worker said: "well at least you'll be able to get big ones after. that's gotta be pretty cool!" The back story is that I had not decided yet if I wanted to pursue reconstruction; I would never prefer breasts larger than I had and most importantly is there really a bright side to loosing your breasts to cancer (for my dx was bilateral MBC w/in 6 days of original dx) for me there is no up side to that!
*also at work: a co-worker who had been seeking me out for kinship since we both were sharing a recent cancer dx (hers lung cancer), said to me: "you're gaining weight." she said it as a statement not a questions. I was like REALLY. . . I DID NOT NOTICE. . . ????? and she said it in front of a group of people both staff and patients. AND to top it off. . . I work in HEALTHCARE!
I'm convinced that mostly people mean well but just really don't know what to say sometimes. And sometimes when they feel like they need to make a comment to show support it comes out like my first example. Rather than being positive something idiotic comes out. I wonder if they thought about what they said later or if it never occurred to either person that their comments might have been hurtful?
I'm glad you popped over here. I find it helps me to know I'm not alone. I'm not so special.... that pretty much ALL of us have heard the same things.....
DeleteI agree that people aren't sure what they should say..... and the stupid stuff is just a way to "say anything" because they feel the must say "something" ... if that makes ANY sense.....
Hello, I just found your blog via keepthecalm and appreciate this little space for a vent.
ReplyDeleteI second a lot of what people have already said. But my most hated statement along this has been "You just have to be positive." I even wrote a whole blog post about it (http://burningbrightly.org/2012/04/26/you-just-have-to-be-authentic/) because people were driving me crazy. I am generally a positive person, but please give me the freedom to be real with how I'm feeling. :-)
I look forward to reading more from your foggy chemo brain. x L
BE POSITIVE is generally at the top of my list, too. I'm fond of laughing at myself and the silliness... and when I'm having a moment OR A DAY, I don't want to be talked out of it....
DeleteI'm going to read your post right now.... thanks for coming here...
Oh My God.......this has been the most therapeutic read for me yet. Thank you all for sharing...it actually made me laugh and cry and took me back on my journey that started on Jan 1, 2010.
ReplyDeleteI have heard so many similar comments: You look Great for having Stage IV; You're cured right....everything is okay??? ; I thought when you had cancer you LOST weight?; oh, your friend died ...Maybe she just didn't pray enough; God only gives you what you can handle; I wish my boobs looked as perky as yours (post bilateral mastectomy and implants); you look great bald and you have a really nicely shaped head (seriously....I had long blond hair...never did I want to know how great my head was shaped).
My all time favorite is the same as above......"Be positive!" I literally want to punch them in their face...it's like no matter what is going on......I MUST be positive. I finally told my mom who would always say it to me how much it pissed me off. I explained to her that when she was sick or when she put her dog to sleep that I NEVER told her to think positive......why, oh why would everyone think it would be okay to tell me that???????? I explained to her that for some reason since I was diagnosed no one wants you to EVER have a bad day.......but the truth is.....I'm human and I am allowed to get upset at different things in life....Cancer or NOT!!!!!
Thank you for making me laugh and smile.......
It makes me smile to see that this made you smile in any way whatsoever. I started blogging as a joke and quickly realized how much it has helped to share my thoughts with my laptop. And then, to have my laptop talk back to me in the form of comments and what has turned into very real "friendships" .....
DeleteI think everyone needs to back off and understand it's NOT HUMAN to just be positive all the time.... We must honor our feelings and we really must pay attention to our bodies. If we are tired, we rest. Hungry.... we eat..... Perky FAKE parts? Not really such a great thing. I liked the ones I could feel a lot better....
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