Coping when people think breast cancer isn't a big deal
OK - I need a place to vent and think this is the safest available to me.
Quick background is my breast cancer journey started this past December. Right now I know at minimum I have ILC - Stage 1, Grade 1. I'm scheduled for SNB along with re-excision soon as the lumpectomy didn't get clean margins and that is where the invasive component was identified.
I experienced all the emotions I'm sure you all did but thought I had myself grounded. I banished the perpetual lump in my throat and haven't cried in public for a couple weeks. Today an old friend called and expressed her opinion that breast cancer isn't a big deal because she has all these friends who had it and they all just had a little treatment and got on with their lives.
On a rational level, I know this person doesn't know what she's talking about and lacks compassion. On an emotional level, the perpetual lump is back in my throat and I'm walking around on the verge of tears again.
Any advice on how you all handle the hoards of insensitives out there?
Thanks.
Comments
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Gabby:
They just 'don't get it' and won't until they have walked in your shoes or been exposed either themselves or their loved ones!!
they don't see the tears in the shower, the depressed days wondering....what if....
How do you handle the insensitives??? I don't! To try to talk to them is frustrating and just makes me nuts so I try not to bring it up anymore.
Emotionally we will never be the same but we have each other here and that has gotten me through quite a bit!
(((((((((((HUGS))))))))))))))))
Jan
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Oh my goodness! Hugs to you. There is a thread about "the dumbest things people have said to you" and that certainly qualifies. Some people mean well and it could very well be that she was trying to make you feel better especially the part where her friends "got on with their lives". I'm sure if your friend had BC it would certainly be a big deal to her.
The perpetual lump and the verge of tears is normal, just because you haven't cried in a couple of weeks doesn't mean you wont anymore. We are all under so much stress since diagnosis I am surprise you lasted (haven't cried) in a couple of weeks.
As for insensitive people I can't give advice, I usually am the type to smile and go on and think of the appropriate comeback later on. I usually go on the boards to vent, no one knows what we go through except here. Hugs to you!
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We tend to find out whom we wish to have in our lives and whom we do not at this point. Please see the thread, The dumbest things people have said to you/about you. It is right up this alley. You will find those who share your experience and a place to vent and laugh. It is in the Depression, Anxiety forum.
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I haven't been diagnosed but saw this thread on the common threads.
I am sorry you have people telling you "it's no big deal." To me, ANY form of cancer is a BIG deal.
Those people who are telling you "its no big deal:.. I am sure would feel very different if they were in your seat,
I just wanted to send you a cyber hug ((Hugs))
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Oh, don't cry sweetie (at least not about that). It's not worth your energy. You're right. She has no clue -- and for that matter I think the entire general public has no clue. I'm amazed at the articles that come out during breast cancer month that paint a rosy picture and leave out all the realities. I blame a lot of insensitivity on that - just perpetuates ignorance. Many people seem to think 'breast cancer' isn't like 'real cancer.' It's plain stupid. Makes me mad.
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Yep, sounds like your "friend" qualifies for the dumbest things people have said to you/about you. I am so sorry you had to endure the conversation. I have a "friend" that means well, she really does, but seems to always say something so very inappropriate. I tend not talk to her about my issues unless she directly asks and/or don't tell her too much to avoid these kind of conversations.
Good luck.....
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It is so hard for anyone to understand the devastation that comes with cancer unless they have it. My husband is the sweetest guy but even he said that sometimes he forgets how ill I get because I wear a wig. When I take my wig off at night it really sets in, and we are married! If it is so easy for him to not always "get it" then I can only imagine how it is for someone that dosen't live with it in their home. Unfortunately these people (who love us) will never fully understand and may even say things that have a huge effect on us. That is exactly what brought me to this web site. To find others who understand and have all the right things to say, and so I say to you.... laugh hard and cry hard, take it day by day and no one has to be strong all of the time! I hope you feel supported here.
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Gabby, one thing I would no longer call that person is a friend. If she said what she did to comfort you, she clearly does not read you well. If she said it without thinking, then she clearly does not read you well. See my point?
On your question of how to handle such issues, I handle them by telling no one except those you know for sure will either care or have to pretend they do. That would be: immediate family and doctors and supervisors and only friends that feel like family. Everybody else can wait until you've gotten over the trauma and been through treatment and no longer care what they think.
IMO, it is important to protect yourself at this vulnerable time and not seek out or give room to any voices that you are not absolutely certain of. This is your convalescence and you need the grapes and chocolate and get well notes that fit you.
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I think Athena is right: this is no friend of yours. Let's face it: most folks' knowledge of cancer comes from Dr. Oz and the Today show. It makes NO difference what everyone else thinks, because they just.don't.get.it.
But we here get it, which is why the boards are sometimes the only safe, reassuring place to go.
One of vonGoethe's novels has this great line that i'll paraphrase (oops chemo brain again!): "the world is so waste and empty, when we figure only rivers and trees and hills in it; but to know of people, here and there, living in accord with us, even in silence..this makes our globe of earth into a peopled garden."
I think those words definitely apply to the community here.
hugs
janyce
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Thanks to your words of wisdom and insights, I'll get past this and be able to sleep tonight. Like LetLet, I'm the one who just smiles through the inappropriate conversation, then thinks of things I should have said at the time a day later. I'm letting this go to focus on keeping physically and mentally strong. It's reassuring to know there's a sisterhood out there who will come to my aid on a moment's notice. Hugs to you all!!!!!
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Gabbcal
Can I recommend the thread on "Bonfire of the Godesses"? I haven't posted there but it has sure made me feel better and given me a few laughs.
Another option is to wait until you are somewhere private and use lots of swearwords. I've used a LOT in the last year.
You are allowed to feel angry about how stupid and insensitive some people can be. You don't have to accept it and be nice. You can choose not to reply but it doesn't mean you accept it.
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Hi! I just came across this topic, and I can relate. I usually post on the topic of taxotere and cytoxan because right now I am undergoing chemo with these two drugs. However, I also have thought how to respond to people's insensitive comments. Sometimes, it is ignorance, and sometimes I think people make light of something serious because they are uncomfortable talking to someone with cancer. However, I often think later what I should have said to them. Breast Cancer is serious, and I know I am emotionally scarred for life. Losing my hair was the worst side effect , so my pet peeve right now is people who say "What's so bad? It's only temporary." Well, everyone that says that to me has a full head of hair. Next time I hear this reaction, I will be ready with "Have you ever lost your hair?"
To GabbyCal: Avoid people like your "old friend." I am often a people pleaser, but since I learned I had breast cancer, I am more focused on me. I have relatives that mean well. When they call periodically to see how I am, they upset me rather than cheer me up. They ask questions or try to give me advice. For example, I had mastectomy with immediate reconstruction with a tissue expander. Of course, time has to go by before implants. I want to be a little bigger, but that has to wait until after the expansion is finished and chemo is over. I had a couple of relatives call shortly after my mastectomy, and ask "Do you have big boobs now? Do you like them?" Lesson learned: Don't tell too many people details. I also screen phone calls or ask my husband to tell certain callers that I'm asleep. It's three months since my mastectomy, and I'm halfway through chemo and still have bouts of crying. So don't you feel bad about crying or getting upset. Sometimes without warning I feel depressed and start crying. My husband has been very supportive,but now he is starting to say "What's wrong now? Your hair is going to come back. You have good doctors. Your prognosis is good. I don't understand."
Well, you have to be in it to truly understand. That's why this website is so great for venting and sharing our experiences.
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To Tiredofjourney: Thanks for sharing your experience. I too have learned to screen phone calls and am working on getting a thicker skin to deal with the incredibly insensitive comments. I guess it comes with the territory. I too am usually the people pleaser (middle child syndrome) but for pure emotional survival am learning it's now time to focus first on me. Time will tell whether this is a temporary or permanent side effect of this disease for me.
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Gosh GabbyCal - I'm so sorry that you have any friends like this, but I noticed there are other threads about some of the totally off the wall things our bffs do. My diagnosis was a year earlier than yours... made Christmas a blast didn't it? At first I couldn't even post here... I just hurt way too much. In the last year I have learned that about the only people who "get it" are on these boards... and bottom line everyone else has moved on and thinks I am "cured". I stopped explaining NED... I stopped talking about it all the MD trips to anyone else... I stopped talking about the fears in the night... I stopped talking about the hormones... once in awhile my DH hears it, but really - I just vent and talk here now. No one else understands at all - they want me to smile and tell them I am doing well... and so I do... simply to avoid all the hassle... but here I can say how bad it hurts sometimes.
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After 22 months I have stopped talking to family and friends about the cancer. Now I just talk to those who are going through it. I have finished all my treatments. I go to my checkups. I am tired of insensitive reamarks and I am tired of people that are like poison to me. I still hurt and I probably always will. Hopefully in time the hurt will lessen, my crying jags will ease, and maybe someday I won't think of this on a daily basis. Now when someone makes a stupid comment I let them know. I don't care.
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I honestly believe people try to be nice when they focus on how many do well with BC.
And I think being friend with somebody that is hurting is difficult for many people.
I guess we all here know people that hurts from different life challenges, like divorces, abuse, anxiety etc, and I at least assume that I not always handle this the best way, and that I from time to time may have come throug as insensitive, maybe I haven't even noticed friends that really needs me.
Hopefully they can see my overall good intensions, and keep on being my friends.
I have had lots of people say to me that BC has good prognosis etc, and I have decided to receive this as comforting comments from people that even might be scared and are trying to comfort both them selves and me.
I typically tell them that I for ever will have to live with the increased risk of recurrence, and that this is something I will need to work on how to handle.
My suggestion would be to accept the underlying good intensions, and try to educate friends on what kind of support you would like. And also accept that even friends and relatives might have a hard time dealing with this. -
To Kline: I think you are right about our friends and relatives having a hard time dealing with our breast cancer. Sometimes, when I get upset, my husband will remind me that this affects him, too. Our life is now different now. Less of a social life and my husband has accompanied me to so many doctor and treatment appointments, not excatly fun for him either. Last Saturday was the first time I went out with two friends since I lost my hair. I hate my wigs -uncomfortable and I think they look "fake." I usually wear hats. I could tell they felt uncomfortable and didn't know if they should say anything. I finally spoke about my hats when one friend said she lilked my beret. It eased the situation. Oh, well.
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I feel that most people have good intentions, but I am utterly exhausted by almost 9 months of treatment. At this point if I could be placed in a medically induced coma and be awakened after my next 12 rads sessions were over, I would be happy. I have a long list of comments that have aggravated me. The most common thing I'm told now is "you look great" even when I say I don't feel well.
When I'm feeling generous I do think about a casual friend of mine who had breast cancer 7 years ago. I did a few things to show her I cared but not nearly enough. I guess having lived this experience I will be a more sensitive friend in the future. Part of my ignorance was how long surgery, chemo and rads take AND the very real risk of recurrance. I lived in blissful ignorance that if breast cancer was caught before metasteses was detected, you were cured.
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Hello there:
I saw this post
and thought I would respond
First off, I am a 11 yr thriver
but do remember insensitivites
etc. I think the phrase
You need to walk in the shoes to really know
is so true
I tried to sort of avoid people who did not understand
and can tell you I met so many here, there and other places
who helped me on my journey
It is a big deal, it is your life being threatened
and you need to cope, and just become a fighter
for Elizabeth:
You know, I too had a friend
and used to visit with flowers
but never knew what it was
then, chemo rads etc
then I was dx. we do our best
Best to you
everyone
Hugs, Sierra
I think
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Hi Starbeauty - Yes, I kept up appearances so as not to "spoil" Christmas for the family, but I'll share here how it played out.
Dec 8-mammogram picked up suspicious microcalcifications. Dec 20 had stereotactic biopsy and was told I would have pathology results back by Dec 23. When Dec 23 came and went with no call, I told my DH, good news would come but bad news would be held until after the holiday. So went through all of Christmas with that hanging. Got the call Monday, Dec 27 that I needed to see a BS. Most were off that week for the holiday and we had plans to go out of town to spend New Year's Eve with friends. So I hustled to set up an appointment with someone for the first day of the New Year. So I got to have everything hanging over your New Year's holiday trip too.
You make a good point that this is the only safe place. I'm coming to that conclusion as well.
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Oh my goodness, I would have chewed her up and down. "A little treatment"?!?
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I had a similar Christmas as you GabbyCal, just waiting and thinking.
We had invited 30 people for dinner for new year, we cancelled that.
We spent the holidays watching movies to avoid thinking to much. We visited some friends and family as well, and told them about the situation, we kept all visits rather short. Not the best Christmas I have had. -
JBinOK: I think you are right about not having an expectation of how others should treat or respond to us. Also, I believe most people I know care, yet I still often find things they say to be annoying, dumb, or even hurtful, although maybe not intended. I am grateful for the unexpected good surprises. I send a Christmas card to a childhood friend each year. I hadn't seen her in many years, but I wrote in my Christmas card about my father passing away last winter and my BC surgery. She called me just before my last treament and said she was concerned about me and wanted to get together. I asked if we could wait until 2 weeks after treatment when I'd feel better. On Sunday we met for lunch and it was like old times. We chatted, caught up on our lives, and made plans to go to a ballet in June. Sometimes bad situations lead to good re-connections.
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Like the other women who've posted in this thread, I can tell you that unless you get breast cancer, you will NEVER 'get it'. They dont get it, they dont know what it's like. They see you have surgery, treatment then your hair grows back, you start to get better physically, so they think it's over. Especially when they dont know what goes on in your mind. They dont know about what chemo does to your brain, they dont understand the fear, and the stress...I could go on and on and on.
As people dont really say anything to me now that it's been almost 3 years and I dont talk about it anymore to other women cause they dont understand and mostly dont seem to want to hear about it, my last crap experience was last October. Yes October - the time women who havent been thru it decide to think about it, and buy pink stuff to 'support women with breast cancer' - never mind that they have unsupported the real actual women they know who had it - just go along with all the social stuff in October...
Anyway, being October an email was doing the rounds, about a young woman who was dying from BC and was getting married, then it mentioned that x amound of days later she died. The the usual blurb at the bottom about passing it on and remembering to be aware and all that stuff. Two co-workers sent that to me!! Come on - is that appropriate! Is that what I needed to read! I had to remind that that I need to hear good news stories only as this was not helpful to me emotionally.
One never replied, the other said "oh yes, of course sorry" I dont think she was sorry though. It's really quite pathetic how others will treat you. You do eventually learn to cope better, and it will after a while be a little less on your mind. Like others have said, just learn to say nothing, and come in here for advice and support - this is the only place I have where there are other women who I can talk to who understand! Use this forum as much or little as you need - it's the only safe place I have, and we do understand how you feel and what 'they' are like.
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I think people that don't have cancer just can't understand. I am post my initial treatment but have had a lot of problems with tamoxifen. I just had a friend say to me "you certainly see a lot of doctors and seem very concerned about your health" I want to scream but luckily I am involved with an excellent Breast Cancer Support Group and with Gilda's Club (a wonderful organization for people with cancer and their family and friends), so there are women there that I can talk with and they understand. We provide wonderful support for each other.
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I remember the insensitivity more early on - or did I just become immune - I don't know. I do know that I encounter many people (mostly young) that think any cancer is no big deal anymore. If someone they know passes away its because what they had was "aggressive". I think that this insensitivity/lack of reality is encouraged by chest thumping celebrities like Patrick Swayze and others - it creates and rewards un-reality (I think I just invented this word).
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Wow, to all of you, great stories and advice. Like all of you, my breast cancer weeded out some assholes very quickly. I had to argue for a toned down Xmas in 2010, after having two reconstruction surgeries that fall, while in college full time, being a mom, working part-time, and trying to adjust to tamoxifen. It sucked.
My college peeps, most of them 30 years younger than me, were really sensitive and loving to me!
Don't waste another second on people who aren't nice, they suck our energy!
xoxoxox
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