Friday, August 2, 2013

Speak No Evil

Or, "What Not To Say To a Cancer Patient."

First, before you take offense to this particular post, I want to say that it probably wasn't aimed at you, my dear friends and family. For the most part, everyone has been wonderful to me, and nothing but supportive, and always quick to offer help when I most needed it. And this is not a "rant" against stupidity (although, it unfortunately exists..just wait for my post about the DMV), but rather a way to help all of us be more considerate when talking with cancer patients.

When you are a cancer patient (or probably any person suffering from a long-term illness or life-altering disease), you get asked questions...a lot of questions...all the time. And quite often, they are the same questions over and over and over. This is really because most people are so caring and want to help/understand.

If you are lucky enough to know people that have traveled the cancer journey before you, or with you, or even after you, you tend to bond with these people in a way that I cannot fully explain. Sometimes, they seem to be the only ones to know exactly the right words of encouragement to give you when you feel like crap. So you get together for coffee, or you chat on Facebook, and you feel like you can laugh with these people in a way that others can't quite grasp. And while you're chatting, you discover that you all have the same "pet peeves" when it comes to things that people, well-meaning or not, say to you.

I asked all my "cancer peeps" (yes, that really is how I think about them) for their input on this post. Our roll call includes: Hodgkin's Lymphoma, Testicular, Lung, Thyroid, and 7 Breast Cancers (6, plus me)...so 11 people total. Five of us went to the same high school and are basically all the same graduating class so I wonder if I should do a study of what was in the drinking fountains there and how many of us there really are and whether it's higher or lower than the average. 1 is family, 1 is the mom of a high school friend, and the remaining 4 are friends I have met along the way through school, kids' schools, and sports. One has been "lucky" enough to go through cancer twice, 15 years apart. (UGH! Cannot even imagine...she's my hero). Some are newly diagnosed, some just starting treatment, some just finished treatments, some are one year post-treatments, and a few are lucky enough to have hit their 5 year cancer-free mark.

Here are the questions that I asked: "Do you have one, two, or even ten things that bug(ged) you that people, well-meaning or not, say/said to you? Or things you just got tired of hearing? Whether it was friends, family, acquaintances, or doctors...I'd love your thoughts." (Now, please note, at the time I'm writing this, a couple of people had not yet responded because they are likely enjoying their summer and not waiting around for emails from me. I will update with their responses as needed).

These people were very thoughtful with their responses, and all agreed that for the most part people were supportive and wonderful, as I've already mentioned. Many of us think it's possible we have even been guilty of some of these "no-no's" at one time or another. Several were worried that it might seem like they are nit-picking, but I assured them they were not. I culled the responses and have included our advice to you...in no particular order...here's what bugs us the most...(direct quotes are marked, otherwise I've compiled and paraphrased).

Please do not be one of these people:
"The One Up" 
Every single one of us remarked about this. These are the well-meaning people who want to tell you a story about someone they know who has cancer "much worse" than you do, and how said person is soldiering on. If they can do it, so can you. I'm pretty sure this is designed to "buck up" our spirits. Unfortunately, it has the opposite effect. Here's the thing, we all know someone who has it much worse than we do...we see them EVERY TIME we go in for treatment. (For me, it was the lady next to me, pregnant with twins, who was getting chemo. Yep, my Stage 3 Angry Cancer didn't seem so bad that day). BUT, whether we are in the throws of treatment, or about to start some scary phase of treatments, or even desperately trying to recuperate from the last round of chemo, WE FEEL BAD. And we have a right to feel bad because "it just sucks to be in the middle of it." I'm sorry that your neighbor's mother-in-law/friend from high school/second cousin, twice removed has it worse, but I only have enough energy to care about me, and all your comments do are make me feel bad about myself for being a wuss.


"The One Up, part 2"
My cancer peeps are "young" in the grand scheme of things. Hearing about how your grandma had breast cancer when she was in her 80's does nothing for us. We have young families, jobs, and would like to think that we're pretty active go-getters. "I know they were trying to be well-meaning but their mothers were 70+ when they were diagnosed, not 42! Come on, I have young kids and a whole life." Not to mention the fact that cancer medicine has advanced GREATLY in the last few decades, so these experiences, while sad, are completely irrelevant to our situation.

"Compare and Contrast"
Please do not compare your health "crises" and experiences with mine. Now, I'm the first to raise my hand and say that I'm sure I do this with my cancer peeps (but we're allowed, because we try and garner info from each other about what the unknown is like), and I apologize to anyone I've ever done this to in the past, and know I'm working really hard NOT to do this ever again. But please do not talk about your benign lump or your hazy mammogram results or how it was a scary couple of days for you thinking you might have cancer, but thank God you don't. Now, if I'm joking about my hideous MRI, and you've had one also, please, feel free to commiserate about that. But your experiences are not mine. Which leads me to...

"I Know How You Feel"
NO YOU DON'T. Even if you've had the same drugs, and the same doctors, and the same diagnosis. You have no idea how I feel. Every time I hear this from someone (usually a random stranger out in the community, or someone over the phone I have to deal with when "discussing" insurance...or the DMV), I want to lose it. If you take nothing else to heart from this post, please do not ever say these words again.

"God's Plan"
I am the first to admit that I'm not the most active church-goer out there, but I definitely believe in God, and pray for strength a lot. However, I'd like to think that he is not a mean and vindictive god who would want me to feel this terrible. Telling me my cancer is "God's plan for me and is my cross to bear" just doesn't work for me because I disagree. Perhaps, years from now, it might be appropriate to have a discussion about how having cancer changed my life/life plan, but not now. Not while I'm right in the middle of it. All this will do is make someone stop believing in God, or start hating God.

"God's Plan, part 2"
Or, "But you're such a good person." Again, cancer sucks. Random, stupid, and angry are all words that I use to describe it. Believe me, I've given quite a bit of thought to "wow! You'd have thought I would have some good karma points stored up." This is okay for me to think...but not at all helpful for you to say.

"Be Positive"
This is kind of "God's Plan, part 3" in my opinion. Yes, I think that attitude is a key component, and my cancer peeps completely agree. However, telling someone "attitude is everything" or "if you just have a positive attitude, it will be okay" is JUST NOT TRUE. I've been told I have a pretty remarkable attitude considering what I've been through, and they keep finding cancer every time they do a surgery or a scan. And then I get pissed and hate everyone. And then I feel guilty for not having a positive attitude. Lather. Rinse. Repeat. Attitude helps, but a positive attitude is not going to cure you. It is okay to feel bad and a cancer patient needs that permission not to be happy all the time. 

"How Are You Feeling?"
Especially when it includes that look of pity in your eyes. This was one of my personal pet peeves and I'm glad that I wasn't the only one. I felt I was jinxing something if I answered, "not too bad." Wow, if that isn't asking the chemo gods to rain holy hell down on you, I don't know what is?! And if the reverse is true and I'm not doing well, you don't really want to know all the gory details, so I just wouldn't tell you. The sentiment is nice, but this is just not the right question (see below for what to ask instead).

"You Look Good"
The hell I do. What you really mean (ie: what you're amazed about) is that I don't look like a Holocaust survivor, which is how you think a cancer patient should look thanks to movies/TV/your grandma's cancer experience from the 1970s. Even if, God forbid, we really do look better than we've ever looked in our lifetime, we feel LIKE CRAP. We don't recognize the person we see in the mirror. Tell me I look good bald, that eyelashes are overrated, that my coloring seems good today...find something meaningful and specific...and maybe even funny. Anything other than something that sounds canned, and is really just a well-meaning lie. In this same category are "someone as young and healthy as you" which I hear from my doctors all the time. I HAVE CANCER...I am not healthy. Pick different words.

"The Health Nut"
This one was a hot button for us. We've all run into the person who says "I eat this or don't eat that" or "how they never drink milk because of hormones and all the other things they are careful not to eat, blah, blah, blah."  As one friend put it so eloquently, "Helpful? No. Interesting? Hardly. Even if it were, it's a bit late don't you think?" Another said, "that's great for them but 1) I have already been DIAGNOSED with cancer and don't need any guilt on health habits and 2) HELLO, I am triple negative - hormones aren't a factor in my type of breast cancer.  *SIGH*" 

"The Cures"
Again, I fully believe that curing my cancer is a process and should involve a lot of different elements like traditional and non-traditional therapies. But why must we feel the need to perpetuate the chain letter email that if we just eat 12 pounds of bananas every 3rd Thursday we will be cured, and here's the true-life case of the one person, 300 years ago, that it happened to. Please don't get me started on what I think of these "cures" (magic potions) and whether they actually work. One of my peeps shared how a well-meaning person sent an article about "willing away the cancer through positive body-talk." Now, if you had my EXACT type of diagnosis, and you thumbed your nose at Western medicine and ate those bananas and you were actually cured, then sure, let's talk. I'm open to incorporating bananas into my diet. But I'm going to make it a PART of my treatments, and not rely solely on them...or any type of treatment for that matter. If you really want to find a way to help me get better, offer me the name of a personal friend/family member/your own doctor that works with cancer patients so that I can have another name to add to my arsenal.

The Dumb Questions:
I kid you not, I'm not making any of these up.

"How did you catch it?" Repeatedly asked. My friend that survived testicular cancer has the best response: "Seriously? Toilet seats. Always use the ass gasket, otherwise you'll end up with testicular cancer. Tell your friends." Guess what people, you don't "catch" cancer. Just saying...

"Are you a smoker?" Top of the list for lung cancer patients. First, I have to say, think about what you are going to say when you hear the answer to this question, regardless of what it might be. If he/she says "no" are you going to say, "sucks to be you"? If they say, "yes" are you actually going to say "then I guess you should have expected it?" Honestly...this kind of falls into the "How did you catch it?" question above.

"What are your chances of survival/recovery?" "What does this mean for your kids?" "Are your kids going to get it?" Most cancer patients don't want to talk about statistics and percentages as it pertains to whether they are going to recover or not. Honestly, the "odds" of my 5 year recovery is pretty crappy all things considered (somewhere in the low 60% range), but I'd prefer not to think about that as it doesn't do me any good, thanks for asking. And I'd prefer not to have a long conversation about what this means for my kids, or their genetic makeup, because it's scary enough thinking about my own cancer. And I was trying not to think about my kids having cancer, but thanks for putting that out there because I needed one more thing to stress about.

An extreme example of compare and contrast: "I was going to get my hair cut during my recovery period for reconstruction. The well meaning hair stylist compared my reconstruction (from a mastectomy) to her 20-something friend who had a "boob job" because she was tired of her "A" cup." To this I must just say, use your brain people...use your brain...

Now that I've probably offended every last one of you, let me reiterate, that is NOT MY INTENT. You are all good people! You say and do the right things. My (our) hope is just to provide you with an insight into what your questions mean to us. 

So, what can you say? Or what should you say?

"I am so sorry you are going through this."
"I am here for you." (But don't say it if you really aren't prepared to be there. Or be very specific with what support you are able to provide. For example, "I can drive your kid(s) to soccer practice" or "I can run to the grocery story for you" or "Do you need a ride to the doctor?").
"Whatever you need..." (Again, see above. If you're really willing to clean my house, offer it up. If you're happy to have my kids spend the night, please take them. If you'd like to organize meals from friends and neighbors, that'd be lovely).
"What do you need?"
"How is your day going?"
"Do you want to talk about it? Or not?" (I have friends that are very good at NOT talking about cancer at all when we are together...it's a great opportunity just to be a normal person for awhile. This is something we ALL want).
"I am at the store, do you need anything?"
"Is there anything I can do to help?"

63 comments:

  1. Thanks, Shauna, for putting this insight into words. As an oncology nurse, I have heard variations of your comments from many patients. Your courage to share has the potential to help all of us be more supportive.

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    1. Thanks for keeping in touch Shannon! I <3 oncology nurses. So grateful for you.

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  2. I "love" the folks into holistic remedies and tell me chemo is poison - especially when it's pretty evident that the purpose is to kill all fast growing cells, not to mention the protective gear the oncology nurses wear while administering it.

    Also - once when asked if I was going to a local festival, I said I couldn't because I'm neutropenic, blah blah blah cancer. And this dude said, "I know how you feel, I had swine flu last year, and couldn't go." ... not exactly the same.

    life is funny.

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    1. yes---the ones that drive me nutts are the ones that tell me there is a cure but the government won't allow it to be issued because of money. As a retired federal auditor/investigator, I find that stupid and insulting. OR the ones that send me an article on a "drink" that cures cancer. grrrrrrr

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  3. Great write up on an important topic. My wife is a BC survivor and I *know* that she's experienced just about all of these. The last part is critical... the friends/family that were just there were priceless.

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  4. I LOVE this! Well said. We jokingly made a bulletin board of bizarre things people said when my nephew was diagnosed. It was then that we learned the most powerful tool in our arsenal of Cancer Weapons: humor. Sarcastic, sardonic, ironic, deep dark humor. Any opportunity we took to mock it or laugh in spite of it seemed to work wonders for everyone. I myself have quite the thyroidectomy scar from a scary experience with a tumor. Im also a grade school teacher. The kids often ask what happened to my neck. They ask geniunely with curiosity and often concern. And so I explain that my awesome doctor found out that something was different in my neck and he was able to work with his friends to fix it and isn't that amazing?! They nod and move on. BUT, SEVERAL TIMES I have been asked by complete strangers, completely out of context: "Whadidya, cut ya throat, lady? Did you try to commit suicide? Were you on a ventillator? You should sue that doc because that is a hideous scar". Should I continue?! I have developed a repertoire of obnoxious responses which I use with a smile. My best response is that scar is far better than the nasty tumor. OR...when I ask if their mom ever dropped them on their head as an infant. Your choice. lol All the best from Cape Cod.

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    1. My daughter (and to a lesser degree, we her family members) got many interesting and stupid comments during her treatment. My 23 year old daughter has healed scars on her chest from biopsy and central line catheter/ port removals (she had a blood cancer.) When she returned to college at 19, while still in treatment,and a few friends/classmates asked about the scars... If they genuinely concerned she explained briefly about her cancer.... if it was a jerk who was just curious, she would say "knife fight... you should see the other girl." I love your comeback about being dropped on their head....

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    2. So important to find the humor. And to laugh at stupid people. Sarcasm gets me through. Prayers to your families Kelly and Alice. Thank you so much for connecting!

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  5. Thank you for this. Thank you. Thank you. Thank you.

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  6. I can soooooo relate to all of this..I'm a cancer warrior for Aml leukemia...I also have a blog www.embracingmynewnormal.blogspot.com

    I've enjoyed reading your blog and look forward to more...Thanks again, definitely makes me feel more normal regarding my feelings on many of these same pet peeves.

    Take care!!!
    Dee

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  7. This sounds like the story of my life...

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  8. Shauna,
    Thank you for this post! I am interning as a chaplain in a hospital whose focus is oncology. I chose this route because I am a cancer survivor and would have loved to have had someone to talked to. I am preparing to leave this site, as my time is up. However, I have printed your blog to pass on to the next group of interns. If you haven't been on the cancer journey, sometimes you don't know what to say. This is awesome! Thank you again.
    Samantha

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    1. I am so glad that you found this post so useful Samantha! Thank you, and good luck in your endeavors. Always love hearing from a survivor!

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  9. I love, love, love this and am passing it on! It is fantastic! I am 41, have BRCA2, cancer, had a bi-lateral mastectomy with reconstruction. LOVE, LOVE, LOVE!!!

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  10. One of my fav's that's I've gotten over and over again and really drives me bonkers:

    God wouldn't give you anything you can't handle.

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  11. You are spot on! My daughter is about to hit her 5 year date. She spoke of all of these throughout her treatment and beyond. I am so grateful that she has had other young adults to converse with that can relate. This type of expression not only helps fellow cancer survivors and patients but also their caregivers and those that love them. Thank you!

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    1. Glad to hear that you daughter is doing well! Thanks for checking in!

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  12. Awesome!! Could not have said any of this better myself. I had Acute Meyloid Leukemia and then a Bone Marrow Transplant, this month marks 2 years in total I have been going through all of this shite. Let me tell you, I totally appreciate your article, especially the way you are candid and not apologetic. I had the "God plan" shite from a massage therapist (never went back), and the daily "you look good!" or "I know how you feel" (no you do NOT. NO WAY DO YOU KNOW.) Anyway, thank you, this is a fantastic piece.

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    1. Good luck to you in your continued treatments. I am coming up on one year and it feels like it will never end some days. Prayers for you!

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  13. This is awesome! My favorite when I told a coworker I had cancer was "oh if you are going to get cancer that is the one to get, its easy" No it is not, nothing about cancer is easy. Thanks for this post it was awesome! - GIST Cancer - 2 years cancer free

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    1. Exactly! Thanks for checking in. Yeah...2 years! Congrats!

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  14. I love love love this. I too am triple negative. And would get the craziest things said to me. We have been "cleaning" up the way we eat and I hate when people will ask if this is on our diet. its not a diet it is a new way of life. I may have acted as if I was okay but I NEVER want to go through what I did in 2011 again, ever!!! http://www.empowernetwork.com/kkaritis/
    Here is my blog with a post almost like yours. Best of luck!!! Feel well
    Kim

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    1. Thanks for checking in Kim!! And for sharing your post.

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  15. What a perfect post! Thank you for putting in what they can say as well. I hated being told to be positive- as if that would cure my cancer. I finally started warning people that I was going to deck the next perosn that told me that. I am a positive person but right now ( when I was first diagnosed) I was mad.
    The stupidest comment I ever got was that I must have gotten cancer because " I thought about it". I put it in my head so I got it. Really?
    Thanks for letting me vent. Patti

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  16. Not trying to "one up" but here's one that's just too unbelievable NOT to share. I have a chemo port implanted in my upper right chest. No big deal, plenty of patients have them. When it was first implanted, I used to keep it covered up because I was self-conscious about the big scar (yeah...I got over THAT pretty quickly). So...one day I am shopping at the local grocery store and I was wearing a shirt that did not cover my port/scar. Some lady, who I never seen before (or since, which is probably a good thing) approached me and said, "Wow. That's a pretty nasty scar...how did you get that?". I was pretty taken aback because (1) I don't know this bitch from Adam, (2) who in the Hell walks up to a perfect stranger and asks a question like that, (3) it took a great deal of self control NOT to punch her right in the face. Thinking quickly, I just looked at her and said, "Oh yeah. That. Got into a knife fight in a biker bar" and walked away. What is the matter with people???

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  17. good read :) I think I'll dovetail on that... I don't like to rant online(that's what good friends ears are for) but this did remind me of a very strong feeling. While I am not the patient and I know my version and experience of all of this is different than what it is for my husband, I have felt frustration at times. Especially having someone who doesn't really know me or us very well in our office tell us in the beginning just how bad its going to get and how I really needed to 'prepare myself for the worst' and I how 'I must be able to leave him alone' etc. because it's what they had to do with their person, in front of both of us who were still shell shocked and new at this whole experience. It just kept going on and on and on in a negative and dark way as if we were marching off to this dark world with no sunshine and we should just 'know right now that's what will happen and be prepared'. When at the time it was taking everything we had to be hopeful and positive.
    I think it especially bothered me because everyone's situation is unique and personal including the relationship between the patient and caregiver. I'm sure this person meant well in their own way... but I just didn't know how to make the conversation STOP, but I could feel the heat in my gut welling up and I wanted to get out of there before I slapped someone. All I could muster was to continue to remind them through the conversation that we would take a positive attitude and approach... the message didn't sink in, because she just kept going.
    For us, he wanted me there with him. I have not missed one appointment or ever "left him alone", because that was what was right for us.
    And I agree with the last comment about having the "better or easier cancer"... I just want to say to those people - what?!?!?! is there such a thing? :(

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  18. Love love love this!!! I tend to laugh about a lot of things that have to do with my cancer (MPD) because most people don't know what it is and as my doctor told me the day I was diagnosed "For those it is common for, it is common in people over 40". I was 23 at the time and 27 now, just came out of "remission" in September, (I have the chronic version, remission is so subjective) But either way, I love to mess with people who ask me ridiculous questions. I had a broken leg at one point during it and I had someone ask me if I was contagious.... I told her yes, please stand at least three feet away or your leg will snap... it's an epidemic really, but as for the cancer... well I'm sorry, you've already broken the safe radius... here's the number to my oncologist, let me know how your first BMB feels!!
    So you have said this much more nicely than I could have. THANK YOU for posting it... and Here's to baldness! HUZZAHHH

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    1. Thank you! Good to hear from you...thanks for checking in. Yes, laughter is something I do a lot. Sarcasm is my friend. Prayers to you!

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  19. Couldn't have said this better myself. Thank you....!!

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  20. I love this! As someone who is trying to adjust to survivorship, you wrote EXACTLY how I feel. Thanks so much.

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  21. Love this site. You really hit all the main thoughts on the survivers want to lists and so forth. A funny thing happened to me when I met a friend who knew I was wearing a wig and she asked why so I took off the wig and said because I was bald from chemo. Enought said.Thanks a lot for all other views.

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  22. Fun fact: I'm a professional writer, and this is one blog post I do NOT want to comment on simply because I don't want to accidentally make one of the faux pas above. :)

    So I'll just say THANK YOU for posting this - and educating all of us well-meaning assholes who try so hard to identify with something we can't possibly understand. :)


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  23. Not to 'one up' you, but how did you obtain all of this crap I've been storing in my head?? The NSA has NOTHING on you, lol!!

    As a fellow BC sister, I can totally relate to this post. In fact, perhaps you were a bit too nice! ; )

    Two things for your next installment:

    (1) Oh, you have (fill in the cancer). My friend's mother/best friend/sister-in-law had that and they died.

    Yes. THAT happened. Multiple times. Thanks for sharing, and do be sure to add me to your Holiday Newsletter -- I'll bet they are most uplifting! ; )

    (2) Those who view your reconstruction as the chance to get better boobs .... um, yeah ... because who wouldn't want a set that look like a Barbie doll with scars and feel like you're wearing two feet on your chest that are permanently asleep! Yeah, they may look great in clothes, but try changing at the gym or going on a date and having to explain.

    (3) People who think that purchasing anything pink to show their support is helping to fund a cure. News flash: Komen and many other BC organizations giving precious little to research (less than 15% at Komen and even less to metastatic disease). That crappy $40 pink toaster is supporting overhead and "awareness" (which has become a fancy euphemism for marketing), not finding a cure. Their money and concern would be better spent as a full donation to a reputable organization that puts a priority on research or alternatively, buying a week of groceries or providing cab fare to a patient undergoing treatment.

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    1. Agree to all of these. Thank you! I have been working on a post about all things pink, and research vs "awareness."

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  24. Fantastic post! Going through treatments, I heard so much of these, and you really validated how wrong/stupid these remarks on. Totally spot on!

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  25. Very well written. My experience varies slightly being a cancer mom but many of these are pet peeves of mine as well. I had the most awful conversation with a lady just after my daughter was diagnosed. She compared my baby having cancer to her daughter getting her tonsils removed. Cause finding out my 13 month old has stage IV cancer with a 5 year prognosis of 30% is just like your 10 year old having minor surgery. Ok, end rant. It's been several years, and I'd still love to punch that bitch in the face.

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    1. I cannot imagine having to deal with one of my kids having cancer, so sending strength your way. Ranting is healthy I've decided!

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  26. This is great! I definitely do not know what you are going through, but I think this is wonderful advice for anybody trying to relate to a loved one going through anything medically. I recently spent 6, mostly pain-filled, weeks in the hospital (not cancer related) and either got ridiculously stupid questions/comments (like how great it was I got to have some time off work!) or else it was like I fell off the face of the earth. I am young too (33) and pretty much nobody this age has had to go through anything close. I'm so sorry you are going through this.

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    1. Thank you! And I hope that you are doing better.

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  27. OK....as a 4 year survivor of Stage 1V lung cancer, and a never-smoker, of course my pet peeve is the first question out of everyone's mouth: "Did you smoke"? Think about it - when someone tells you they have breast cancer, do you say "Oh, were you fondled"?....or Uterine cancer "Oh, did you have sex"? .....or esophageal cancer "Oh, did you swallow"? (and I can think of a few others)! No, it's only LUNG cancer people that are must endure being asked this insipid question! I wish people would get educated -- if you have lungs you can get lung cancer! This STIGMA of folks thinking the only way you can get lung cancer is if you smoked is the reason Lung Cancer is the BIGGEST cancer killer and the LEAST funded. No one DESERVES cancer of ANY kind!!!!

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  28. Great post. There are so many words and phrases that sting. Gosh, I even have a post called that! Generally, I realize most people mean well, but sometimes the bizarre things we hear does make one wonder doesn't it? Thanks for writing this.

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  29. Great post. I'm in the midst of breast cancer treatment and will be starting chemo next week. My situation is such that there was somewhat of a choice as to do it. I chose to enlist in a clinical trial for a diagnostic and let the universe (aka the trial computer) pick the course for me. Of course, I got the chemo leg. Several friends knew that I could have gone either way and even could have opted out of the trial (but didn't). Of these friends, the nicest,kindest thing they said to me was - 'we are glad you are going this direction and having the chemo because even though it will be difficult, it means that you will be around longer and the chemo will kill any residual cancer' I felt loved.

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    1. Prayers to you as you begin chemo! I finished 16 doses (over 20 weeks) at the beginning of May. There are lots of posts on this blog about my experiences...ugh. Please check in and let me know how you're doing!

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  30. Hi Shauna
    Oh yes, I have heard many of these....

    Some of my friends on a board for people with Stage IV breast cancer made a video of "Dumb Stuff People Say to People With Metastatic Breast Cancer." I think you will find some common ground!
    http://www.youtube.com/watch?v=8fluBsPbP68

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  31. Great post! You left out 3 of my favorites though.

    "As a Christian, you should be rejoicing even in this" (Religious version of positive attitude.) I just tell them to pray for me, but I suspect their Bible reading has left out Job, Psalms, and all the passages about comforting those who mourn and bearing one another's burdens.

    "Now is your chance to get the breasts of your dreams" (or a free boob job, or other variations of this). The breast of my dreams were old and saggy, but they had sensation and did not have scars and were not made out of my stomach.

    "You didn't get your mammograms, did you?" I tell them it was only 5 months after a perfect mammogram, but this particular breast cancer does not show up on mammograms - and if that doesn't scare them enough, I add it doesn't have a lump and is only discovered at advanced stages. (If certain "pink" people are going to spend 40% of their donations on "education," then please include signs of the rarer but more dangerous breast cancers.)
    Elizabeth J.

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    1. Yes, I have definitely heard these also. Thanks for sharing them!!

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  32. Fantastic post!!! People say all sorts of stupid shit all the time. When you have cancer, it multiplies. Thank you for this...

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  33. Loved the video KOB. This one is great too: http://youtu.be/0_7JJrU9HUg

    As for the post, it is brilliant.

    All of you: take heart. My stats were terrible. Stage III ovarian cancer. I was positive all right - positive I wouldn't make it. But I just embarked on my 12th year of remission. I know my cancer can still come back, or I could get a new cancer. I know I'll never be the same. But I'm alive, and that's a gift I did not expect. Good luck to you all!

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    1. Congrats on your remission! Thanks for checking in...and sharing! Prayers for continued good health.

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  34. As a Stage 4 Non Small Cell Lung Cancer patient with a very poor prognosis, I just want to say................ THANK YOU!!!!!

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    1. Sending prayers to you Jon. Thank you for checking in! Glad this post has found its way out into the world.

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  35. Thank you soo much for this, I know I can relate to all of what your saying, I am one year cancer free & I can often tell you I got alot of people telling me the one "oh you got an easier cancer & you could have it worse" or the one *your so strong you have such a postive attitude. Im sorry but just made me wanna punch some people in he face I know alot of people had good intentions but by the end I was tired of hearimg the samw questions all the time.

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    1. Congrats on being cancer free for a year! Thanks for checking in and your comments! Agree!

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  36. The one thing that really bugged me the most, during my treatment, was people who told me about their friend, sister, mom, and etc, lived 15, 20, or maybe longer, years after diagnosis. I don't want to put a time frame on the rest of my life, and I do know they were trying to be positive but all I heard was so I guess I have 14, 19 or longer years remaining. Please know that we, the victims, of this dreaded disease know all those things, we just need people to give us a hug, don't be afraid to let us vent or cry. One of the most wonderful but simple things that a person did for me was a co-worker who every day asked me if I needed a break or was I tired or could he do anything for me at work, he may never get the full understanding of how much that meant to me.

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  37. All from one person: "I'm so sorry you have cancer. So where all do you have it?" and: "I know you're particular about your hair and looks. Are you gonna have to get a wig?" And later she passed on this item to others: "I heard she has it in seven places!" (not true) and I am hoping not to be treated to anything else she has to say! Others have been very understanding and helpful. Thank God for them in my life. I live with HOPE and most people try to make that where they come from with me. God is Good all the time!

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  38. So true, humour is the only way to go but you also have to give your head a shake at some of the crazy comments/questions. A good one I heard and have used for the "Do you smoke? " is to reply "Why is that a cause....I wish someone would have told me sooner."
    What I need is a response (I have stage IV lung cancer metased to the spine etc. very poor prognosis am 52 and have been healthy and active) to friends etc. who keep telling me I will get thru this even though I tell them I am positive, fighting, but terminal. Gets frustrating to just smile and say sure.

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