Thursday, July 7, 2011

Things People Say to Breast Cancer Patients.....

.....and what I say in response.

.............and what you should say.


Well-meaning but clueless person: "Let me know if you need anything."
Snarky Me: "Really?  Thanks!  Empty your purse and let's see what you have in there. Wait, is that purse Prada? I need that, I have medical bills to pay and want to look good paying them. Oh, that's a pretty wedding ring, lots of diamonds, can I have that too?"

What you should say is absolutely nothing. This is a time to do, not talk. Pick up the phone and order a day  of housecleaning service. Send over a fruit basket. Knock on the door and drop off a casserole.  Come over and scrub the tub.  Pick up the kids from school during chemo week.   Bring a DVD of a funny movie and some chocolate.  Stay with her in the hospital so she will get good nursing care.  DO something, don't just talk about it.  And, when you stop by to help, don't be shocked if the house is a mess.  No judging -  the person has cancer and maybe can't move her arms, and housecleaning is far from important.  Just  help, and don't ask permission first.

You don't really think we are going to pick up the phone and ask you for help - do you? Would you? If you don't want to do anything (and there is nothing wrong with that)  than here is the right thing to say:  "I'm sorry you have cancer."  No meaningless additions needed.

CP:  "You are so brave"
SM: "Wow, how did you know about the child I rescued from the burning building last night? It wasn't even in the papers!  Oh, are you referring to the time I went to war and fought for my country and got in the firefight and dragged my injured friend to safety? Or, do you mean the time I single-handedly stopped a bank robber from shooting that elderly lady?

No? You are referring to me showing up on time for doctor's appointments?"


It's nice to be called brave, but we cancer patients all know we aren't. Brave is a word best reserved for people who deliberately put themselves in harm's way.  Trust me, if I could get out of this, I would.  I'd run so fast I'd leave old people and children behind.  And puppies. All the puppies.  The truth is, I have no choice but to put one foot in front of the other and do what my doctors say.

What you should say:  "I'm sorry you have cancer."  If you must add another phrase, you can say, "You are handling this difficulty with grace."

Then order housekeeping service, because I am guessing what is going on in that bathroom isn't that graceful.

CP:  "I know exactly how you feel."
SM:  "Oh fantastic, let's talk about the best way to relieve chemo-induced constipation without bringing on diarrhea! What's your tip?"

Here's the right thing to say:  "Tell me how you feel?"  And, then listen.  I'll probably say I'm fine.  Because, I am.  But, someday I might not be.  And, if I want to tell you that my butt is plugged like a 2 year old tube of super glue, than try to listen without telling me about the time you had the same experience.

CP:  "Oh, my Aunt Sally died of that."
SM:  "Oh cool, was it a long, painful death?  Tell me all about it!"

What you should say:  "I'm sorry you have cancer."    If you think I'm going to relate to you because you had relative who died of my disease, you are thinking incorrectly.  I'm well-aware this disease is fatal but maybe I'm in a good mood - don't bring me down.

CP:  "You never know, you could get hit by a bus."
SM:  "Our school has cancelled busing, thanks to budget cuts, so the very real risk of a bus crashing through the front window into my office has been eliminated.  Whew.

Here is a fact:  40,000 women a year die of metastatic breast cancer.  I'm not quite up on how many people die by getting hit by a bus each year, but I'm guessing it's more  in the 40 range.  (You might have to include trains in that too).  Which do you think is more likely for me?

What should you say? "I'm sorry you have cancer."

CB:  "At least you get perky new boobs."
SM:  "Honey, you have clearly never seen reconstructed breasts.  Trust me, nobody is giving me any beads during Mardi Gras."

Try, "I'm so sorry you are going through this."

CB:  "You can beat this!  There are great treatments now."
SM:  "Which one do you think will keep me in remission longer?  Navelbine and Herceptin?  Should I switch to Xyloda and Tykerb?   Should I ask for stereotactic body radiation or radiofrequency ablation?  What do you think about portal vein embolization?"

There are great treatments now. Some which keep cancers at bay for years.  None of which - to date - cures a woman with metastatic breast cancer. And, I'm guessing you have no clue what is out there for metastatic breast cancer patients. How about saying, "I hope you find a treatment that is easy, and I'm sorry you have to go through this."

CB  "Just keep a positive attitude"
SM: "Don't worry, I'm so busy concentrating on controlling the rivers of diarrhea without needing a diaper, my blood levels being so low I can get infected if my dog sneezes, and vacuuming up the peeling skin on my hands and feet that I'm too busy to think negatively."

It's awful to tell somebody to think positively.  Do you think all those cancer patients who are now dead thought negatively?  It's not a good thing to put the burden of our disease on us.

CP:  "Don't worry, everything will be okay."
SM:  "Oh, great! Did you read that in the tea leaves?  Was it in my horoscope?  Do you have a crystal ball?  Can I see?"

What you should say is....say it with me....."I'm sorry you got cancer."  Don't deny our reality.  It's very likely that - for those of us with metastatic disease - everything will not be okay.  We hope it will.  We want it to be and we are going to do everything in our power to live as long as we can.  But you have no idea what will happen.

CP: "Hey, look what happened with Lance Armstrong."
SM:  "I know, I only wish I'd gotten cancer of the balls!"

The truth is, while not taking away from Lance's story, his type of cancer has a high cure rate even at a later stage.  At the last stage of testicular cancer, Stage III,  there is a 50% to 80% five year survival rate.  At Stage IV breast cancer, there is a 16% to 20% five year survival rate.  So, yeah, look at Lance.  So what?

CP:  "So, how ARE you?" (Grave voice, sad face)
SM: ""Fine thanks, and you?""

I'm still the same person, please talk about me behind my back like you are supposed to. When in front of me, put on your unconcerned face.

CP:  "Everything is going to be fine."
SM:  Why yes, everything will be fine. After I die, the world will still turn on its axis, people will get born, people will grow old. Flowers will bloom, rainbows will sparkle. I won't be there to see any of it, but sure, it'll be fine.

At least, until a moon-sized asteroid crashes into the earth and kills you all."

Here's the truth.  You can say any of those things to me, and I won't mind.  You know why?  I lived 50 years without having cancer, and I probably said them all to somebody who did have cancer at some point too.  Nobody really knows what to do or say, and that's part of being human.

The thing is, We With Cancer are just the same as we always were.  We aren't braver; we are just sick.  We have the same hopes and dreams.  So, just treat us normally, as you would want to be treated.  Please, ask how we are doing and then take your cue from our response.

The one thing you should never do is put the onus of our illness back on us.  We didn't cause it by negative thinking, by eating a hotdog when we were 12, by sitting in the sun, or by not exercising.  It just happens.  I am positive in spirit but that won't cure my cancer.  Neither will being negative kill me.  It's not my fault. Never deny our reality, whether you agree with it or not.

When all else fails, what do you say to a person who has cancer?

"I'm sorry."

55 comments:

  1. Love this - sometimes I wish I had the nerve to let my 'snarky me' out when so many people say such inane things.
    But no I smile and let them hang themselves with their own ignorance

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  2. I recently posted something that touches on the "brave" comment but this covers everything and your suggested responses are appropos. After telling people I was going to have immediate reconstruction surgery I had two people ask me what size I was going to "get" and another said, "promise me you'll get some big ole D cups." Clue. Less. ---Thank you for this.

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  4. As The Carcinista once said to me, your snark is delicious. And right on the money. Keep bringing it Ann. You know we love it. And you. P.S. Cancer sucks, particularly the metastatic kind. ;)

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  5. This is perfect. I've shared it on Facebook and tweeted it. Thank you, Ann.

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  6. Great comments! So many times I've felt like saying stuff like that.

    Can I add a few? Like when the lady at the grocery store asks if I want to donate to breast cancer awareness. I feel like saying, "I'm already way more aware than I ever wanted to be."

    Or a well meaning friend who is participating in one of those huge fundraising events, who says she raising money to help cancer patients. I replied, "Just give the money to me. I need to get an MRI and they cost the same as a small car."

    Yes I actually said that, but it was a good friend and we got a good laugh.

    When people ask my husband if they can do anything to help he always replies,"Can you come over and wash the car on Thursday?" I'm not exactly sure how this helps me, but he thinks it's funny..

    Great post!

    Dianne Duffy

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  7. My personal peeve is the "sad, omg you're going to die" face. And, "What's your prognosis?" Gee, if it was good I think I would have mentioned that right away.

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  8. This post is a keeper. To be sent on whenever I need it. Thanks!
    Els

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  9. Great words. I love your directness. Keep it up!

    -Shelli from The Dirty Pink Underbelly

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  10. Probably the most astounding thing I've ever had someone say is this: "I was so shocked to hear. I just know in my heart that I will get breast cancer some day." And they stand there looking at your in all your hairless glory, and you are supposed to be feeling sad for them because they think they might get cancer one day. If I thought it shocked me the first time that I heard it, the second time I heard it blew me away ~ Debby

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  11. Love you, darlin'. Your Sister In Snark, The Accidental Amazon.

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  12. I'm sorry, and SNARK and ROCK on! You make me smile and laugh with every entry. Not a bad gift to all of us............

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  13. Thank you, Ann. I don't have cancer but I have people I love that do. I'm learning that when I don't know what to say, not to say anything except that I'm sorry. If my people were closer, I'd be bringing them food or cleaning their houses or holding their hands when they needed a little extra contact. But honestly, it's taken me a few people to get the hang of it. The first person I did right was always so proud of her fingernails. So every time I visited her, I gave her a manicure and a different color polish.

    Sayre

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  14. I cannot tell you how many times I have (already) heard most of those, and I'm still a newbie three months into treatment. Here's my take on the theme:

    http://caridwen.wordpress.com/2011/05/01/happy-beltane-and-ten-things-you-should-never-say-to-a-cancer-patient/

    I wish every cancer blog had posts similar to these...maybe then folks would learn that some things are better left unsaid!!

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  15. love this! well said and it said everything it needed to say -
    I know people mean well when they ask me questions or give me some of the same comments you've received, but at times I wish I had a Can of Snark to release.
    thanks for making me laugh today!

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  16. AMEN.

    And let's all remember the 'at least you caught it early' phrase. Everyone always says that.

    HOW do they know if it's caught early???? Nobody knows. You just hope it is.

    Ugh.

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  17. well said! I hated that OMG you're going to die tone of voice- I called it the funeral voice. FWIW,Lance Armstrong's cancer has also metasized to his lungs and brain- so I sure as hell don't want what he had!

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  18. I love this too - I'm a 2x survivor so far. The housekeeping/bathroom cleaning is genius - & appropriate for anyone who's had any kind of major surgery. Have bookmarked this too!

    valleycat1

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  19. Love Love This! I'm three years from diagnosis today and got the "you could have been hit by a bus" comment just today. This should be required reading for everyone.

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  20. I LOVE this post. Thank you for sharing and making me laugh out loud (a little embarrassing because I am sitting alone in a hotel restaurant). But, your sense of humour and honesty is exactly what this type of post needs. I had always planned on writing one like this, but I didn't. So, I'm going to steal yours and put the link on my Facebook page, so maybe we can help educate some of the well meaning people who stay stupid things. I was probably one of them before I got diagnosed....

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  21. I just laughed so hard, tears came out of my eyes! yes, just like the above post I would like to use this on my fb page. With major credit to your blog of course!

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  22. Bravo! And so well done. I'm sick to death of the "at least you get perky new boobs comment." If people only knew. I especially love the "no Mardi Gras beads" insight. Keep writing, my friend; the world needs to hear it.

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  23. Ann,
    All I want to say is that this is one of the best posts I have ever read. You're amazing, Ann.

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  24. I'm sending you my Mardi Gras Beads! You definitely would look GREAT in them!
    I'm 1 yr from diagnosis (7/11/10 - 7/11/11) and just got my final silicone implant this week. You've helped me get through this. I'm here for you now.
    Kaye

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  25. Brilliant post can identify with everything you wrote.

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  26. Ann, I wanna be your best friend!

    As everyone has said, this is a brilliant post! I nodded my head all the way through it, having heard every one of these ignorant remarks.

    But I laughed outloud -- REAL LOUD -- when I read about the puppies. Haaha.. and the ball cancer.

    You brighten our days, woman!

    xxoo
    gayle

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  27. Ann, I can identify with all these well-meaning (or not so well-meaning) sayings. And I've heard more, too. But I like how you present it with that sarcastic twist. Made me laugh out loud.

    When I refuted a store owner who told me I was brave, she started to cry. I thought, Wait a minute! I'm the one who should be crying, not you." But I guess she lost a loved one to cancer and she thought that person was brave. So she projected on me. I resented that she argued with me about the bravery issue.

    Thanks for sharing these. Maybe some other people will "get it" if enough of us make clear what we want to hear.

    Jan

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  28. I'm stage IV and thought this was funny and true and first. I was laughing. Brought me down towards the end. I am a very positive and as much as I dislike what a lot of people say to me I also know that I will be here for a very long time!!! To be very specific, the Lance Armstrong comment made me mad. I'm am so happy for him and other men and I know that BC has a worse rate, but when you post things like that it's a DOWNER!! Where is that from? Maybe post a reference. I was going to send this to my family until I read that. There are some things that people should not say to us but also there are things that you should not say to your family! You have to meet in the middle. There is no way that it's right to hate what they say to you and then put something like that in their face. I'm not trying to offend you or anyone. I hope you don't take it that way. I'm stage iv, fab and fighting my ass off. I just had to give my opinion since this has been such an issue with me from the get go, 5 yrs back. Girls, keep those heads up high like your nose is bleeding! Praying for a cure for all of us!!♥ Weez....

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  29. Beautiful expressions.Probably no one intends to hurt but they do and so we should just be normal and love and be kind.That is all we can do which is nothing considering what you are going through.

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  30. I still remember the day I texted you after a co-worker told me how lucky I was because I didn't have to wear a bra. Yep... I am soooo lucky I have perky boobs because of stage 3 cancer!

    But the most astounding thing I heard was from a grocery store empoyee who doesn't know me. "Do you like your hair that short?" My reply, "No, I don't. I had chemo and it all fell out." I am absolutely sure she will never ask another woman
    about her short hair again!

    Great blog!

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  31. Love This! But had to share the most jaw dropping comment I received as I was going thru treatment.... a former co-worker called and after hearing about my stage 3 diagnosis, proceeded to say, " oh that is too bad, but the reason I called was because I am hosting a pampered chef party and wanted to know what you would like to order." It still makes me giggle when I think about it.

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  32. hi there. I am your 200th follower and also a BC 'survivor'.

    Loved loved this post. Brilliant. The one thing I will say about Australians is they tend to be less sentimental and 'think positive-y' than people over your way. But I have still had variations on many of the above.

    With love from your (new) Snarky Friend - Jane

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  33. My wife hates the 'perky boobs' comments, and I have to say they were indeed spectacular before the mastectomy. I had many people ask me how I was doing. I do appreciate the genuine concern and not being left out of the pity party. But my stock reply was always that nobody had come after me with a scalpel lately so not to worry about me.

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  34. OMG you kill me...not literally of course. I love your Blog...take care.

    PS. I'm sorry you got cancer ;o)

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  35. Breast cancer, 6 years, diagnosed while I was 6 months pregnant and no, nothing brave about it. Just terrifying! I have to say I do make some funny remarks about the perky reconstruction thing mostly because I "got to keep mine," and there's nothing pretty about these lopsided ladies...I usually do it in good humor and maybe coming from another survivor, I can carry it off...I sure as hell hope I haven't offended anyone. Yes, just do, don't ask. I had a 3-year-old toddler and a preemie infant...and I didn't want to ask anyone to do anything for me, despite the fact there was so much I couldn't so just show up one day with a mop and a scrub brush and get to work and YOU will be the hero. Also...on the list of Stupid Things People Said (both from family members, both on losing hair)...#1 said early in diagnosis, not sure what I was looking at in terms of treatment or if my baby or I would survive, "If it was me, I think I'd just rather die than get chemo. I don't think I could stand to lose my hair. I'm just not one of those people who looks good without hair." Nice, huh? I was like, she thinks I'd be better off dead than without hair? And the 2nd one, who spends hours on her hair everyday said, after I whined, "I'm going to lose all my hair," said, "It's just hair. Just hair." And I snarked back (probably not very nicely because this person was really doing a lot to help me and take care of my kids, "What if it was YOUR hair? Would it be JUST hair then?" I mean, come on, we all know losing hair is better than losing a leg or a penis or something but come on....it doesn't need to be said. Great post!
    HeatherS
    prays every day this cancer will never come back

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  36. As a 34 year young Stage IV thriver, I *love* your snark! Thank you for giving me a laugh!! xoxo

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  37. I sure feel that you know exactly how I feel :) Thank you for this wonderful blog and for saying it all so well!

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  38. This was a wonderful piece! I'd just done a post on stupid things people say and (surprise) a number of them are just the same. But your wonderful idea for a response ("I'm sorry") just had to go in my follow-up of what TO say, so I linked to you (at http://wp.me/p22afJ-CH). I know my readers will enjoy this post as much as I did--and thanks for providing some humor on a topic that doesn't have a lot of extra to go around.

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  39. AWESOME! Love it, thanks for sharing!

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  40. A young man who was follicularly challenged said to me 'at least your hair will grow back', I have to live with this for the rest of my life!'. He was right. My hair grew back and he is still bald.

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  41. First off, I am 43 years old with Invasive Lobular Carcinoma Stage 2A. I had a mastectomy with immediate breast reconstruction and also had some cancerous lymph nodes removed. I will be getting surgery tomorrow to get a port implanted and then 6 rounds of chemo. I can relate to the last comment! I was in the Doctors office and started getting teary eyed talking about chemo. I was talking about the hair loss and jokingly explained how I would be bald with 1 nipple afterwards...my brother(who has went to EVERY Doctor appointment with me) said the same thing about balding, He said, "at least your hair will grow back!" My very compassionate and optimistic balding Doctor looked over and said, "He's right." We will never see ours again!"

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  42. Just had surgery lumpectomy for Stage 2 breast cancer. I agree don't ask if you can do anything just show you care by doing something special. I had a friend who held arm because of a sore shoulder during the mapping procedure. He showed up 6:30am day of surgery stayed the whole day and was the first one there after I woke up. We have gone for long walks together and has managed to make me laugh during an incredibly difficult time. I'm sorry this is happening to you.

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  43. I had a lady who I work with because she "finally knows someone with cancer" that she can take to a "special people with cancer afternoon tea in November this year".

    Snarly me (or Sarcastic me) answered her with "That sounds great but I better introduce you to some more people with cancer in case I die before then".

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  44. I am not Stage IV (as far as I know), but had 20 months of treatment for stage III BC.
    Two things people say, and I am sure I have said them myself in the past are "So have you got the all clear?" and "So you are all better now". I usually respond with something along the lines of, "Well I don't think there is any such thing as the all clear, no one knows what is going on inside but at the moment there is no evidence of disease". I think another thing people don't realise is the aftermath of treatment, all the lingering side effects that we have to deal with.
    I also quite often say (and maybe you will disapprove of this), "Well none of us know what is round the corner. I might find out my cancer has spread, but then again any one of us could have a heart attack or a stroke tomorrow, (or be hit by a bus),so I don't think too much about it."
    Love your blog.

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  45. This is a really fun post, and I also appreciate you acknowledging that we all likely said stupid things to people in our lives. (I can recall such an instance of ‘stupid talk’ that still makes me cringe with embarrassment, despite good intentions.) But my favourite point has got to be about the ‘doing’ and not the ‘asking’ – cancer is a test of many things, including our pride. It was basically shaming to ask people to make me food during treatments. Unfortunately, friends and family are not issued ‘how to help’ pamphlets after a person’s diagnosis . . . but maybe they should be?

    Enjoy the post - thanks!

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  46. I've had breast cancer 3 times and the last surgery I had was a mastectomy with total reconstruction. I would never have gone with total reconstruction if I had known how it would affect the rest of my body. I no longer have muscles in my stomach, I have no feeling in my underarms, I have learned to accept these things and just thank God that it was discovered when it was and I've been clear for 5 years after the third round with the big "C". Keep up the fight everyone - pray, believe, receive !!

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  47. Your attitude is wonderful; you are indeed yourself, going through cancer; the cancer has not taken you over; you are not a cancer zombie.
    Words can help, words can destroy; most of us should keep our mouths shut for the words that come out are not thought filled but thoughtless.
    People ask us, how can we listen to cancer victims all day [sometimes all night] without having it 'get' to us? Answer, our hearts remember, our journeys, though different [we are all different], still reflect the same desperation, pain, hope and fears; we listen mostly, open doors where we can to help give hope, lending a hand if we can; but we do it because we love people, love life, we are the people everyone wishes for to be there.
    I think if anyone ever looked into someones eyes when they talk to you; the answer is there, if your heart does not weep and pour love out; you have not a clue.
    Keep sharing your words, it keeps us listening.
    Believe in Life, its the only joy we have.

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  48. I was recently diagnosed with Stage IV, having metastasized in both lungs, lymph nodes and spine. Not having the benefit of insurance as I did with the first round 3 yrs ago leaves me depressed and feeling hopeless. But I had to let you know your blogs, especially this one, have left me laughing and sharing some fun things with my very patient other half when he came in from work rather than the normal tears. We both thank you and I will say some extra prayers for you. God bless.

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  49. Thanks for this. My friend who is going through chemo and has a link to this on her blog. I'm one of those people - doesn't know what to say or do. So thanks again and I'm sorry.

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  50. Ding Ding Ding! Hit the nail on the head! I'm loving this post and the brutal snarkiness it reeks of! Thank you:)

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  51. Thank you, thank you, thank you! You hit most of my favorite comments to hate. Heres a few more for you and everyone:

    "Inflammatory Breast Cancer? Why yes, I have actually heard of it. My ex-mother-in-law died of it just a few months after she was diagnosed."

    "Didn't you get your mammogram?" (I handle this one by telling them mine is a rare form that does not show up on mammograms and was actually found shortly after a clear mammogram. I consider the fear that invokes to be very educational for the guilty party, on multiple levels.)

    "Why didn't you choose a lumpectomy?" (Not everyone gets a choice and for those of us with no choice, that question is cruel.)

    "Why didn't you get reconstruction when you had your surgery?" (see above)

    From my school superintendent, "I hope our laying you off will not negatively affect your treatment, but as you know, we are laying off other teachers, so this has nothing to do with you having cancer." (And he had better hope that the good Lord does not ask for any witnesses about him on judgement day, because I will ask to be first in line.)

    And then there is, "How can you be cheerful when you have stage IV?" (Am I supposed to waste the rest of my life crying?)

    Life is a gift. You get that. Blessings to you.
    Elizabeth

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  52. I'm in the process of writing a novel where the main character Ruth has been diagnosed with metastatic breast cancer. i have to admit that reading from your blog has giving me a richer insight into the personal and challenging experiences of people diagnosed with the disease. I can sy that I love your sense of humor and will be incorporating some of this in my characters and others' response to this illness. However on a critical level, you throw up too many objections as to how people like me who are cancer negative should react. While I agree that we should strive for greater sensitivity and arm ourselves with more information regarding this illness and its impact on survivors: none of us are perfect, or can be expected to say the right things to all persons at all the right times, as everyone will not react to the same things in the same way. and we will never reach the point where non sufferers or even those experiencing the disease will know what to do or say to those going through this hell. and yes from what I've seen and heard this is a slice of hell, with a little bit of sunshine now and again. Anyway when you said that we should just do and not say, I took objection on the basis that many sufferers despite their condition do not want people to believe that they want charity, to be seen as helpless or even for their friends and family to start taking over their lives without permission. the advise that you proffer is itself a source of tension and frustration to many on both sides, as those who wish to give may not know how to go about this without first asking of the would be beneficiary exactly what it is they want if anything. just one example

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