“Is it terminal?”
“What’s your prognosis?”
“It could be worse, you know.”
“Everything happens for a reason.”
“It’s all part of a larger plan.”
“You’re only given what you can handle.”
“All you need to do is think positive.”
“Half the battle is the mindset. Be determined to beat cancer and you will.”
“Now that you’ve been through this you’re due for some good things to happen.”
“I’m sure it’s fine/I’m sure it’s nothing.”
“Well, you’ve been needing a vacation for a while and now [during chemo] you get to lie around and read books all day. What could be better?”
“Well, do they think [the chemo] is going to do any good?”
“At least it’s not on your face where everyone could see the scars, besides you don’t really need your breasts anyway.”
A new-agey friend asked me if I had been really angry about anything 7 years before my diagnosis that I had repressed. (What had I done to cause my DCIS?)
I was advised to write a letter to my husband detailing how much I loved him so he could have something when I died. [My husband] was standing next to me as I was being given this little chestnut.
One said to me the day after my malignant melanoma diagnosis: “Maybe this will help you evaluate all the things you need to change in your life.”
Last year I had part of my cervix removed surgically for PRE-cancerous cell growth. I was at home recovering from surgery and still had days to await the results of whether or not I had clear margins, etc. Those days that drag on and you just wonder and hope. My mother in law came over with dinner (nice) and then proceeded to stand there and tell me about every person she knew with cancer, how they died, and how their families went on.
When my mother was diagnosed with breast cancer, I was a wreck. My (now ex) husband got tired of it really fast and made a rule to confine my sadness to one day per week: “you are only allowed to cry about this on Fridays.” If I felt like I absolutely had to cry Sat-Thur, I had to do it in private.
The worst thing said to me was right before I was to have a new lump checked out. I was a 7 yr breast cancer survivor at the time, with 3 children ranging from 14-8 yrs old. When I told a pastor’s wife I was worried about the lump, but was most worried about my children if I got bad news, she responded, “oh, they will get over it. You’d be surprised how quickly. I know I got over my dad dying in a year, and I was about their age.”
“Gosh, I thought chemo was supposed to make you lose weight”
Nearly every person I told about my mother’s death felt the need to tell me about some relative of theirs that had passed away and how awful their death was.
The very stupidest thing was said to me recently, a few months after treatment ended for a recurrrence. I was out to eat with my youngest son, now 16, and ran into an acquaintance. She said she’d given it a lot of thought, and wanted me to know that there were “perks” to dying at early age, in case I did. I’m 47. (and feeling fine by the way, and had just told her so.) But she proceeded to tell me 3 of “the perks” if I were to die early. One “perk” was that I wouldnt be the grieving spouse, another was that i had already parented “through the fun years” and wouldn’t have to see my kids make bad life choices, and the other one….oh, I wouldn’t have the aches n pains that came with old age like she was experiencing. She was “sincere” and had “thought about it,” and is a nurse!! Just blew my mind.
1. Random stranger on the street: Do you have cancer? Me: Yes. RS: How long do you have? Me: -
2. On telling peripheral people (e.g. hairdresser, or friend of a friend) of my diagnosis, they proceed to tell you that their uncle/cousin/friend’s mother had cancer and then that they died. I guess they are trying to make a connection and it’s the first thing that pops into their head, but I really did not want to hear about death at that time.
3. An email from a friend of a friend (a homeopath) telling me that breast cancer is caused my a negative relationship with your own mother. This is definitely not the case!
4. People asking me if I knew how I got my cancer (and then offering me something to read about some “natural” therapy they have heard about or are selling).
5. I fully got sick of hearing the words “positive” and “strong”; so much so that I banned my family and friends from saying them.
“People choose their sicknesses. He chose to have cancer by not managing his negative energy and he chose to die by not fighting.”
Someone I know has pancreatic cancer. She didn’t suffer too many adverse effects throughout chemo which was fortunate for her. Her daughter, who knows I went through chemo all a year earlier, made a comment that her mother must have a particularly strong constitution because she didn’t have trouble with side effects. Ya, unlike like the rest of us weak wussies who who were knocked out by chemo! I knew that she was grasping at any tiny sign that her mom might experience a full recovery so I kept my mouth shut.
………………………………………………….
I’d welcome hearing your stories. I am sure I’ve missed some doozies.
A post with suggestions for what to say/do appears here: “Some thoughts on how to be a friend to someone with a serious illness.”
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At first I started laughing at some of these because they’re so inane. There is simply no end to ignorance.
Late yesterday I saw the exchange with one of the “attitude” people and I marveled at your calm reply. Beheading felt more appropriate to me.
Who would have thought that our society actually needs a Miss Manners for people with cancers? It’s true.
Thanks for recording these,
Hugs,
jody
My brother’s wife was diagnosed with ovarian cancer, stage III last year. It was a bad time for the whole family – we are a family of 10 siblings and we are pretty close. A lot of people made pretty insensitive comments not knowing what to say to a cancer patient. While she was going through cancer therapy, i only spoke to my brother, for fear i might say the wrong thing to my sister-in-law. When i did eventually pick up courage to speak to her, she said she only wanted prayers, being a devout Catholic – and i am a closet agnostic, the only one in the family!. I went along with the lie and said i was praying intensely for her..As of now she has recovered – i don’t know whether her cancer is in remission or she is cancer free. The PET scan too did not show any metastases. She has been spending a lot of time in church and attributes her cure to God’s intervention. We are so thrilled for her…
Oh. My. God. I had so many unfeeling comments that were said to me, too. Some were so bad they were laughable. Some were so bad they were hurtful. Some were so bad they left me speechless. Here’s a sampling that most of us probably heard in some form or another:
*At least you got the good cancer (big smile)
*I would just tell my doctor to “cut ‘em off” and be done with it (big smile)
*Well now you get to get a great pair, right? (big smile)
*I love your new boobs (big smile)
*You’re so lucky that you don’t have to wear a bra (big smile)
*I know exactly how you feel. (big smile)
*Cancer is a gift (I’m not kidding)
And my personal favorite was from a casual friend who had been diagnosed with breast cancer a year before me. She had a very different experience though – no surgery as the needle biopsy removed the pre-cancerous cells and she had radiation. She told me that she couldn’t stand to see all the ugly, bald women in the waiting room for radiation and so asked to be switched to a standing late afternoon time slot. This is when I was one of those ugly, bald women (well, I wore a cute wig!) sick as a dog from dense dose chemotherapy, 54 weeks of Herceptin, 5 weeks of radiation, and continued Zometa infusions. Needless to say, we aren’t really buddies any longer!
Were you following me around with a camera? lol it really is laughable. thanks for sharing
People can be so insensitive. I have to think that half the time it’s because they just don’t know what to say. (the other half, they’re just stupid). When my sister died at 22, a doctor friend said to me (this was a real physician…a breast cancer surgeon, mind you): “At least she didn’t have a husband or kids left behind.” (clarification: she didn’t die of cancer.)
However, my mom died a few years ago of lymphoma. Even though I was on the receiving end of condolences, I still wonder what really is the best or most helpful thing to say to someone. There are so many ways to be insensitive and they’re listed above. What types of comments are most helpful/supportive/sensitive?
working on this post, it just grows and grows but it’s coming soon, I promise.
This is where expert patients can be a real help – sharing posts like this, and talking about how to talk to cancer patients. People want to be helpful – usually – but they don’t know how, and then random weirdness comes out of their minds and mouths. A lot of it is driven by fear and sub-conscious schadenfreude, too. The “wow, thank gawd it’s not ME” effect. I’ll spray this across my social sphere!
Wow, incredible.
Thank you. It’s been nearly 18 years since our family dealt with this and it hit home like it was yesterday. I still have different “outtakes” of things people said randomly pop into my head at times. My personal “favorite” was the friend that called and yelled at my mother about the way she learned of the news of my mother’s diagnosis. She, too, was a nurse.
Someone did that to my mother too–she wasn’t a nurse, but one of my mother’s “best” friends (and someone I could never stand). My mom hadn’t even told me or my sisters yet, she certainly wasn’t telling anyone else before us!
The worst (for me) was having to hear about so-and-so who had such-and-such cancer and, oh yeah, they died. Also, can I just say how absolutely useless “I’m praying for you.” is as a comfort/condolence.
Amen..it’s like when you lose a loved-one ans hear “well they are in a better place” really that never helps.
Thanks for sharing this list Lisa. Worst that has happened to me is someone put their fingers under the front of my cover to pull it off exclaiming “Are you bald under there”. You can imagine my response…
Yes, thank you for listing these. Hopefully it will help! If would be helpful if people could just listen or not make a comment about our health at all. Stay neutral people! Sometimes we don’t even want the so called kind comments. Just talk about the weather or the kids soccer game or something funny that happened to you. Think normal and neutral. We don’t need you to relate or lift us up. We’re fine thank you! And if we’re not, please trust that we can seek help. Take a few deep breaths and stay calm.
oh, Kim…I really like your reply…some-one keeps telling me that I have ,’The Big One.’ ???????…sssooo, what is that?…I don’t recall winning the Lottery….?!…
Telling me to be happy and positive, when that is me anyhow, is no help either..
.Prayers?…Prayers, make Them feel better, I can pray for myself, when I need to, God needs it from me, not second-hand from some-one who doesn’t really know my story….
It’s all about being self responsible, which is what Jesus was hoping for, I reckon..
“Come and see me, and we will work on, why you got the lump,”…something you would imagine God might say, but no, a mortal said that to me.
Free natural therapy help, no thanks, I have been doing natural therapy stuff since I was 17 You could know that about me already…
…I don’t need dvd’s called ‘The Cure,’ either, thanks…and, waiting to pounce on me,because of a belief that all cancers are the same and terminal and chemo is BAD!!!….don’t need that either
….And the bloods nurse, whose technique was so bad , I nearly passed out, told me that she knew another patient, who also didn’t drink alcohol, (????) well,anyway, he got cancer, and guess what?…He died!!!…needless to say, I don’t have bloods taken from HER anymore…
this feels so great to blah this out, thank-you, so much…
Also, while I’m here, I’m not seeing people, because I have been having crook,I am a single Mum,who is busy, doing chemo, not because I have been ‘avoiding,’ you….but, as long as I get remarks about YOU feeling put out by not seeing me, I will NOT make the effort to see you in future on those rare days I feel well….thanks…thanks…that felt, Fan-bloody-tastic!!!!!
Wow so nice to finally share these feelings and know that I am not alone. I think the one that bothers me the most is “BE STRONG”. I mean really? I wish people would have told me that it was natural to be scared and angry. thanks for sharing..I couldn’t said better myself.
Aaaarrrrgh! And what’s wrong with a simple, “I’m so sorry. Is there anything I can do?”
IKR!!!
Wow.. I read this today and laugh out loud .. I can read it tomorrow and cry. It is so incredibly uncomfortable discussing and/or sharing ourselves with others sometimes. I often say that I don’t want my incurable diagnosis to define me, but in reality when isn’t this on our minds .. either consciously or subconsciously.
I hold my husband longer & hug my children tighter!
Peace be within us all!
I was shaking with anger when I read the exchange yesterday and like Jody I, too, marveled at how calm you remained while responding. You were firm yet respectful. I wish I had your willpower and grace.
Just a couple of weeks after W. was diagnosed with Crohn’s disease at age 7 – and I was still reeling from his hospitalization and diagnosis (and all it portended for his future health and quality of life) – I found myself at a holiday gathering where a relative came up to me, grabbed me tight, and started whispering in my ear that God “gave” W. Crohn’s disease “to make him stronger” and that God will provide for him, blah, blah, blah…. I started to have a panic attack as she kept rambling on with other similar crazy statements all the while with her arms around in a vise grip. I couldn’t breathe. I finally broke free thanks to my mother noticing what was happening and intervening. I sobbed the whole drive home.
To this day I’m shocked that she and others like her would think that Crohn’s – or any other disease – is something God doles out to “teach a lesson”, to “school us”. I do have a belief in God but I sure don’t believe God pulls crap on us like that.
Not long after that awful moment, as word got out about W.’s diagnosis, another relative sent us some religious based diet book for me to use to “help” W. It might as well have been called “God’s Diet For Parents”. The implicit message was if I were a better mom, a more “faithful” mom, and if I followed what God intended my child to eat he a) might never have gotten sick and b) perhaps I could magically heal my son by “following” his ways. Good. Grief. That book quickly found its way into the circular file.
I wish people would think before they speak and not make such assumptions especially when talking with people who are grappling with grave illnesses. Some of the examples you share of what people have said to others just floor me. I am grateful to you for creating a platform where people can hopefully learn through your and others’ experiences how to be more thoughtful and appropriate when speaking to others about such personal and painful issues.
xo,
Teri
I’m new following your blog. When I had an uncle diagnosed with stage IV pancreatic cancer, I stayed away, too afraid that I would say something ridiculous. Do you have a post on the best things TO say, or how to act so that you don’t offend? I know that i would trip over my own insecurity and fear around the whole thing. Thanks.
The post you want is coming in the next week, I’m working hard on it and it just grows and grows… but I haven’t forgotten.
My mom was diagnosed with breast cancer a year and a half ago. I remember her asking exasperatedly, “why am I not allowed to be ANGRY??” after one of those “positive attitude” conversations. I think on the one hand, the “chin up, you can beat it, attitude is everything” happy warrior script is so pervasive that people invoke it without thinking. But I also think that a lot of people get uncomfortable when you can’t or won’t put on a happy face for everyone. Demanding cheerfulness is their way of neutralizing all the unpleasant details of cancer.
The worst thing anyone said to me: my mom and I were talking to a family friend, and the topic of hair loss came up. The friend pointed at my long hair, and asked if I was going to cut it off and have it made into a wig for my mom to wear.
What you need are what Mad Magazine used to call “Snappy Answers To Stupid Questions”:
1. “What kind of cancer do you have?” “The highly contagious kind. Don’t breathe in.”
2. “Are you in great pain?” “Only while talking to you.”
3. “Did God give you this disease?” “No, I got it from Lance Armstrong.”
4. “Was Chemo difficult for you?” “Not other than the nausea and vomiting.”
5. “Why haven’t you lost weight?” “I’ve got ‘chocolate-coated’ cancer.”
6. “I had a relative who died from cancer.” “Lucky guy — I’m stuck talking to you.”
Remember — you can get away with being cranky — you’re on drugs, and you’re sick!
Ahaha literally laughed out loud!! (:
Love these and will remember them.
going to remember these… plus come up with some of my own snappy answers!
These are great! Thank you!
7. It could be worse – Yes I could have been married to you.
8. We all die eventually – I will let you go first
9. Cancer is a gift – How would you like your’s wrapped?
10. Atleast you have time to get your stuff in order( You could have been in an accident) – Yes, I am planning my afterlife wardrobe OR Yes, I am busy planning an afterlife party – would love to have you attend!
And I agree with Dick – blame it on the drugs and your anger which caused you to have cancer in the first place!! Dick I hope you are okay with me taking the liberty of adding to your list. It was just too tempting.
Unbelievable.. some comments I can understand, others I cannot even begin to understand. I am so glad that you talk about this Lisa, it really helps educate people of being more conscious of the words they utter in an awkward moment.
Hugs!
Wonderful.
Those are brilliant!
hahahaha!!!!….thanks, Dick!!!…you made me laugh and opened a reply portal that is endless!!!
lmao..love it!!!
I have a few friends battling cancer in different stages. Your post made me think a lot. Honestly, it is hard to find what to say, so I normally just say I am so sorry. I am so sorry they are going through what they are going through.
but even that seems pointless and empty.
thank you once more for bringing to light difficult subjects. I admire you more than I could express.
Unbelievable!! So sorry you have to hear that kind of stuff. People are nuts.
I don’t have cancer myself, but as the mother of a child with cancer (leukemia), there are a couple of things that raise my hackles:
1. “Be strong” or “Stay strong.” As if I’m not? As if telling me that is going to help me stay that way?
2. Telling me about alternative therapies they’ve read / heard about. Usually they aren’t relevant at ALL to leukemia, particularly pediatric leukemia. Moreover, it feels like they’re implying that somehow we’re doing wrong by our child to treat her the western medicine way — chemo, etc. You know, the way that has a SCIENTIFICALLY PROVEN 90% chance of keeping my child alive.
It is so hard because you want to desperately say the right thing. A lot of these examples are just nutty, but what is a good thing to say?
My personal favorite “worst” comment “Well, we all have to die of something.”
I would love to have tips on what a good thing is to say. I know I am guilty of saying some of this comments. On Dec. 23, 2012 my mother passed away and 6 weeks later Feb. 4, 2013, my oldest brother passed away, I hate to go anywhere because people ask how I am doing or they are sorry for my loss. I now know how stupid some of these comments sound because I am sure I did the same before loosing my loved ones. HELP!!!
I’m almost done with that post, Tammy. I promise, tips are on the way!
I’m breaking the rules and asking a question, so please feel free to ignore it if it isn’t what you want to deal with. I have been disabled by multiple chronic illnesses and for 18 years and have gotten a lot of the same obnoxious comments about positiveness, attitude, have you tried…, blah blah blah more times than I can count.
However, before I started reading your blog I didn’t know what a stage IV dx meant. Most of my experience with cancer is canine lymphoma, which is staged I-V, and stages III and IV are actually more treatable than I and II. (I know that’s odd, but there it is.) And stage V is not necessarily terminal. Anyway, two years ago if someone had told me they had stage IV breast cancer, I wouldn’t know what that meant. (Till I googled it; but not everyone has easy access to the internet, like I do.)
A lot of the questions and comments you listed seem to be people trying to understand or being uninformed. I get why they are upsetting, unwelcome, often insensitive, etc. I’m just trying to think what WOULD someone who has just been dx stage IV want to hear, since questions about terminaliness (word??) and about recovery are both so unwelcome. For someone I didn’t know intimately, I think I’d probably try to go with something open-ended like, “Wow, how are you feeling about that?” Or, “I’m so sorry, what can I do to be supportive?” But if it was someone I was close to, I would want to know, what does this mean?!
How would you (or others with cancer who want to answer) feel about someone saying, “I’m sorry. I don’t know what stage IV means. Are you willing to explain what this means for you”?
I don’t mind at all, and I have been meaning to write a post about this (you can probably understand my topics to write about exceed the time I have to write). I will be addressing the question “What does stage 4 breast cancer mean?” as soon as I can. I did talk about it in my case on the blog back in October when I was diagnosed. In many cases someone might not know the answer to the questions about treatment right away. With breast cancer it often takes weeks to find out exactly what stage it is and what subtype (hormone receptor status, HER2 status, etc…. these are subtypes which have implications for what treatments will be most effective and what your prognosis is, etc.).
However, I do want to give you an answer to your question at the end. I would love it (and if anyone disagrees, please chime in from the metastatic community) if someone actually asked that. It’s honest, it’s asking for information, it’s considerate. And, it shows an understanding that each cancer– and even within the same type of cancer– can have different treatments and outcomes. Stage 4 does not mean the same thing in testicular cancer as it does in breast cancer.
I think that people often feel they need to say something. If you ask those questions you are turning it back to the person with cancer to do the talking, which may be what you want! I mean, I know there’s an awkwardness there when you aren’t sure what to say.
It also allows the person to say, “You know, I don’t really feel like going into detail about that right now, can we talk about it another time?” in which case you have still expressed interest and willingness to learn. Those are always good things. There will be more in my next post about suggestions, but this falls into line with tips to use it as an opportunity to learn. Maybe people don’t like to explain things the way I do, or talk about it. But if they are telling you their stage 4 diagnosis and you ask, I think that’s just fine. Phrasing it as “are you willing” allows them to bow out gracefully. I bet they’d like that you were honest about not knowing much about it and wanting to learn. I’ll be incorporating this into my next post, thanks for asking a great question!
My two favorites come from the same person…my sister. First, right before my double mastectomy surgery she told me that her husband said, “Can you get a “two for one” so you can get new boobs along with your sister.” I guess it was supposed to be funny? Than about 4 years after I was cancer free she was talking about a friend who passed away with children and how difficult it was to see the children at the funeral. She proceeded to tell me that if I were to die she would not be able to comfort my children because of how difficult it would be for her. When you have friends like that who needs enemies???
It’s amazing and sad that after all your efforts to encourage thoughtfulness in non-patient friends and acquaintances, you are still dodging sucker punches. As a cancer patient myself, I’ve had my jaw drop a good number of times from the words out of people’s mouths. Most of the time, I can tell they are just stymied; they want to be supportive, but what they actually say comes out abrasive or insensitive. Those incidents, while memorable, are relatively easy to overlook.
However, when someone implies or says outright that my cancer is due to a poor choice I made in diet, or lifestyle, or a punishment for not maintaining an acceptable level of church attendance, it becomes very difficult to maintain my composure. Situations like those just show me how disconnected we really are from each other, that empathy seems to be a rarely used and undervalued gift. How can we love one another if we have trouble just being kind?
Thanks, LIsa, for continuing these posts. As incredible as some of the things that have been said to you are, perhaps it will shed a little light for others. At the very least, I hope it will encourage people to pause a bit to think before delivering something callous or hurtful. That, in itself, would be good.
Thankfully, as many lapses in consideration as I’ve witnessed, the goodness and compassion of family, friends and even some total strangers have certainly been blessings that helped sustain me. Cancer sure does give one plenty of anecdotes!
So many clueless people, so little time … This topic never gets old, Lisa. That said, I do think there are some who genuinely are at a loss as to what to say, but by no means is that an excuse. I’d add to this list, people who expect the person with cancer to be comforting THEM or who put the burden on the patient to “smile and think positively” … because we all KNOW that is the cure to all! Gah!
The two that stood out in my BC experience were these gems:
(1) “Well, at least you got the ‘good’ kind of cancer” <– excuse me, it's CANCER. There is no 'good' kind. And tell me … what part of your body would you give up involuntarily?
(2) "Well, at least you'll have fabulous new boobs. I'm jealous …" <– watch my bag while I go stick my head in the oven … seriously?! A bilateral mastectomy is the furthest thing from a 'boob job' … how are YOUR nipples feeling lately, moron?
So many others to share, but I'll save them for the next installment. ; ) If there were a Nobel prize for educating patients, you'd be a lock, Lisa! xx
I spend a lot of time comforting people who are “uncomfortable” and “don’t know what to say”. My husband died from Pancreatic cancer about a year ago. He lived one year after diagnosis. I lived in sheer panic for that year. I can barely describe how my life is now. It’s like every waking moment I just stepped off the carnival ride and my senses are spinning and confused. When people say to me that they are sorry they can’t help me, or that they don’t know what to do, or that they can’t imagine what I am going through or the many other ways they give up before trying, I have found myself saying stupid things like, Oh I will be ok. Or maybe I say, it’s ok, I know it’s hard. “Wouldn’t wish this on anyone”! Once in a while I muster the strength to tell someone how they can actually help me. My strength is limited these days.
When I saw your comment about how people expect to be comforted by you and the burden is on you to make them feel better it hit a familiar cord in me.
PS Those weren’t my responses, just the thoughts that raced through my mind at the moment of impact! ; )
Thank you for replying to Sharon’s question. I felt tearful and guilty thinking of inane, thoughtless comments I’m sure I have uttered. I intended to look for a post that suggested better things to say or write. I’m sorry. Can I even write that you remind me to notice moments, any moments, more often and more intensely?
the post on suggestions is coming this week I hope. I’m working feverishly!
Those of us who have never walked in the shoes of a person with cancer can not possibly know what it’s like. I’m sure that I’ve unintentionally said some things to people, while trying to be supportive and/or comforting, thay could’ve been perceived as stupid or hurtful. I just hope that those people will give me some grace and know that I care, even if I put my foot in my mouth while trying to love them.
We do give a lot of latitude in the moment. And should. But that doesn’t mean we shouldn’t later use those things to talk about ways to be better. Most people want to learn what to avoid and what to say. That’s why I share these comments. I think that it makes sense to discuss both. Some of these reactions are far worse than others, by the way.
I don’t know that I think “meaning well” is enough of a blanket excuse for some of the very cruel things that are sometimes said. I am sure they have given you the benefit of the doubt as I do, but I still come back to awareness and education. If we don’t talk about the bad and the good, how can we change?
This is a wonderful post, and a subject dear to my heart. I lost both of my parents as a teen—my mother to cancer—and though it’s been a long time (no, I didn’t get over it in a year) the memory of awkward condolences still lingers. Not everyone is religious, nor do we all feel that “there’s a reason” for everything. Unless you know the person you’re consoling would appreciate to know they’re being prayed for, it would be best to say something else. My personal favorite: “but you know they’re with you every minute now.” No, no, I don’t. It would be nice to think that, but right at *that* moment, I just wanted to miss my mum. I’m not saying it’s easy to know what to say, and I know how well-meaning loved ones normally are (although some of the examples above are breath-takingly rude), but the number one rule for me is it’s not about ME. Because it comforts ME does not mean it will comfort the person who is grieving or ill. Think about THEM. It’s still difficult to know what to say sometimes, and I don’t pretend to have the magic words, but genuine compassion and supportiveness is usually appreciated.
BEST things to say: When I returned to work after lumpectomy/radiation, a colleague beamed at me: “How GOOD to see you!”
Greet a cancer patient with those five well-chosen words. Simple, heartfelt — and exactly what I wanted hear, after a gauntlet of awkward questions posed by less-adept co-workers.
No one ever gets tired of being told: It’s good to see you
I know we can count on Lisa to provide a list of the heartwarming, positive things to say (although I love the list of the stupid ones). The best response to my crappy news came as a simple phone call. This mere acquaintance… a colleague of my husband’s… he just said, “Fuck, Britt… FUCK. I’m so angry. Should we go get drunk?” It wasn’t the words at all, but the honesty and real I-know-this-sucks-and-also-that-I-can-do-nothing that made me laugh and know he cared.
I don’t know if it’s the WORST, but one of the most common responses we Pink Ribbon gals get is, “Well, at least you’ll get new, perky boobs!” Yes, the Silver Fucking Lining. And thanks for trashing my current body and demeaning my loss. And for some reason I find this very annoying: “You should keep your hair short! If I could have short hair like that, I totally would.” Nope. No, you wouldn’t. So take your chipper attitude and unaltered body right on out of here.
My mouth is agape as I read this.
And, as you touched on, it’s not just well-intentioned (giving benefit of doubt here) folks who say these things either. A few years ago, I took my newly diagnosed Dad to a “what to expect when you’re getting chemotherapy” class at Georgetown University Hospital, designed to help patients and family members.
I knew I made a huge error in judgment when the perpetually smiling nurse said some patients look at cancer as a gift, because after their treatment, they really appreciate their lives.
Oh, you know me well enough to know I despise the “cancer is a gift” mentality!
I’m going to stick myself out here in a huge limb and say that the “cancer/illness/tragedy is a gift” remark is not entirely without truth. I say this because, in my 30s, as a single woman, I got pregnant by accident, but I was glad. My little boy was stillborn at full term, completely unexpectedly. I went into hospital expecting to have a baby and came home alone. It was TERRIBLE, believe me. And yet some truly good things came out of it. (It’s a long story what they were.) I also once had a friend who was separated from her husband when he developed a rare and terminal cancer. He said to her at one point “This is the best thing that ever happened to me”. For him, there was something beneficial in that experience (I think he had always been kind of disconnected from his feelings and from life, and this experience really changed things in a positive way). This is not to say that any of us would wish to have bad things happen to us, simply to have a “growth experience”. But for some people, once we’re stuck with the fact that the bad has happened, there can be positive things that come out of it.
Still I agree that a blatant “cancer is a gift” comment, without any qualifiers, can seem pretty weird.
It is good to know that some good can come out of cancer but it is one thing for the patient to feel and say that the cancer is a gift, but completely unacceptable for anyone else to tell the patient, or the patient’s family, to look on cancer as a gift. (My mother, father, husband and two friends have been treated/are being treated for various types of cancer.)
I think the correct response to “How long have you got?” is “Longer than you if you keep asking stupid questions.”
Thank you, Lisa. I know that some folks are really trying to be caring, but some are merely very trying to deal with. Even positive comments can be disturbing. My least favorite is ” You are my hero.” Now that I am dealing with post radiation pain, I am wondering what new comments that will bring.
Meg
My mum is dying of cancer at the moment , prob has weeks left.its a very hard time obviously. My best friend has told me THREE times about how her dad screamed in agony when he died of cancer last year !! How could she think that would help me ??
My deepest condolences. That seems very cruel.
Maria, I’m so sorry for your impending loss. Sometimes even our most beloved friends and family can say stupid things.
so having read the blog I come away equipped with only one example of what is acceptable
“it is so good to see you”
please keep working on the positives, I do know how hurtful and unhelpful it can be when someone comes out with an insensitive remark
but lets try and come up with alternatives
but lets educate
Dear anonymous: The last line of the post clearly states I’m writing a companion piece with suggestions for positive things to say. That’s the reason why there aren’t examples in this piece; that’s not what this piece is about. I promise, as I said, I’m working on it. Some understanding for the time and energy it takes for me to get these posts up would be one way I would suggest you might be supportive and helpful of someone with stage 4 cancer.
I hope I educate every day. Since you say “let’s educate,” if you’d like to start that ball rolling with some suggestions in the meantime, feel free.
I find some of the comments shocking but I have heard similar from other women .People do need to be equipped with what is helpful to say , so far I have learned that “It is good to see you ” is acceptable . please keep up the good work of generating a range of acceptable responses
Fantastic post, Lisa. Thank you.
For those who seem mystified as to what the Don’t Say This list tells them about what to say, let me suggest a couple of takeaways: prescribing an attitude is presumptuous. How to not be presumptuous: ask a question about how the person is handling things, and perhaps a follow-up question about how you might help them.
Comments that obviously show you are trying to find a way that the person with cancer did something that you did not do to assure yourself that you won’t get cancer: well, there’s no kind way to “other” someone, so keep those thoughts to yourself.
Free-associating about the word “cancer” to come up with every treatment or death horror story: also insensitive and unkind. Relate to the person about another topic if a cancer terror litany is all that word suggests to you.
Be kind. Try to be thoughtful. When in doubt, ask gentle questions. It’s a start.
Pretty difficult to express how much I love this comment. Thank you.
My favorite bad question is still “do you smoke?” It usually means ” what did you do that is different from me so I can assure myself that I will not give myself cancer like you did?” I now answer that or any other question about lifestyle with ” I don’t answer that question anymore, it makes it seem like that is laying blame on the patient”.
I’ll skip the story and summarize by suggesting that the that phrase “life insurance” may only be uttered by the patient.
[...] Bonchek Adams offers a retrospective of the many responses to cancer patients that don’t quite deliver on their intent to be supportive. Posts like this can be a huge help to someone who feels unheard or disempowered by remarks that [...]
My all time favorite is ‘How long do you have?’ The one I hate the most is the story of their neighbor’s cousin’s dogwalker’s nephew’s piano teacher tried that same treatment but they died. But check out this video on youtube by a woman who had breast cancer on what people say to her: http://www.youtube.com/watch?v=PyP3qUdOZW8&feature=player_embedded
My question was more important to me than the comments and questions made to me. It took a lot of time for me to just say, “I just want someone to hold me. Will you hold me?”
Oh, YES! Even now 2 years post diagnosis Hugs are so important.
I had a therapist tell me if we dislike or feel ambivalent about a body part, then sickness will grow there. I have stage 4 breast cancer that spread to my liver. To him this was because I disliked my breasts and belly. I was speechless.
I left early and never went back. As I write this, I wonder what he would have made of my brain mets. I’ve always liked my brain.
Also, I here is a post I wrote during my first round of treatment about a conversation I had a with a taxi driver: http://notjustaboutcancer.blogspot.ca/2006/07/gobsmacked.html
I was advised by a massage therapist not to refer to my DCIS as ‘breast cancer,’ but instead as a ‘breast pimple.’ She explained that not using The C Word would rob it of its psychological intimidation. … She was great at working the kinks out of my back, at least!
I was treated for breast cancer four years ago, and have had NED since. I have a neighbor who asks me often if I think the cancer will return. My reply is always, “I hope not”. What a thoughtless question.
I’m impressed with your restraint – I would be unable to resist replying, “No, but do you think YOU’LL get it?”
I’m totally using that next time.
I was told I was destroying my family by chosing chemo. It’s just a money-making scheme, you know? But I could just fly to another state, take some homeopathic pills 2395720957 times a day (that cost a lot of money insurance would NOT cover) I’d be healed and not lining pharmaceutical and doctor’s pockets.
I had a lot of side effects with chemo. Someone once told me that her mother had chemo and smiled through the whole thing, and if I just smiled more, maybe I’d feel better too! I kindly responded that if I didn’t have side effects, I’d smile more, because I was positive smiling didn’t cure puking, pain, swelling, etc.
I also love it when people say “Well, my breasts don’t define me so I wouldn’t mind getting them removed.” Um, mine don’t define me too, but I’ll tell you what, it is mentally and physically hard to deal with a mastectomy.
Let’s not forget the “Didn’t you breastfeed? I nursed my kids. So I won’t get breast cancer.” Um, yeah, actually I did. But even if I hadn’t, that’s not why I would have gotten cancer.
The funniest moment – I just had to come home and laugh. Someone told me “If you need anything, anything at all, you just let me know. I want to help.
To which I responded, well the biggest thing to help out is a dinner. Her – Oh. I don’t cook. Sorry. Can’t help with that. But I really want to help! Me: Well, you know, if my kids could come over to play with yours while I’m a doctor’s appointment, that would be great. Her – Yeah. I don’t really like having other children around. So that’s probably not a good fit. But, really, tell me SOMETHING I can do. I mean it. Anything. Me – Um, I mean, if you want to come help me clean the house. It hasn’t had a good cleaning in a while. Her – Oh sweetie, I don’t even clean my own house. Is there something else because I want to help?
I get she was trying to be nice, but it was pretty clear to me, she didn’t want to help, but felt she had to say it. So I finally said maybe bring me a magazine to read (though she said perfect! she never did). Just don’t offer to help if you don’t want to.
And my best (worst) someone we barely knew said to me “You know, if you die, and your kids ever need someone to open their hearts to, they can call me anytime.” Um, thanks?
So funny and awful!
And in this response are some good clues about what people can say and do that will be welcome: help.
Offer real help, such as a meal delivered (and the serving bowl/lasagna pan/tupperware picked up afterward – preferably there was a note on the meal with instructions for heating, and orders not to clean anything afterward but just leave it on the porch!).
Or what would be a good time for me to come and vacuum your rug or water your plants or weed your garden (name one finite chore — you can always sneak more help in while you’re there!).
Or organize play dates for the kids.
Or bring magazines.
I am just about to begin chemo for the “bad” kind of breast cancer. I am in complete agreement that what is most helpful is to offer some very concrete help, as mentioned above. Being someone who has never had an easy time accepting help from others, I have found it is much easier to agree to let someone come over with some food than to come right out and delineate to friends what exactly they could do that would be helpful.
What has been most hurtful to me are the silences from friends whom I told about my diagnosis. In responding to an email from a friend/colleague, I told him about my diagnosis, and never ever received a response. Another friend was told by my husband and she chose not to contact me at all to say anything. I questioned my own feelings of being hurt, and wondered whether or not a reply to a newly diagnosed cancer patient falls into the category of just basic good manners. A full month after this friend heard from my husband, she called me to apologize for not saying anything. She said she had been confused, and in listening to her, I felt extremely sorry for her. Her own self-absorption prevented her from making a meaningful connection with me, and I suspected that pattern may pervade even more in her life.
Finally, in my research, I have encountered many who are intending to provide helpful information, but I have concluded that unless you are a person who has or had had cancer, or a doctor working with cancer patients, it is best not to write a book about cancer.
I really don’t understand people even those that are/were friends. Why offer help if you don’t really mean it.
I didn’t really tell anyone about the BC unless it was face-to-face. I didn’t want to call and tell friends about my Dx. After my lumpectomy I finally emailed 4 friends that I just didn’t see very often and of the 4 one NEVER once spoke to me, and in fact was “upset” that I hadn’t told her right away. I didn’t even tell my teenage kids until I was sure of the Dx so why would I tell anyone else. I told my mom, who had BC 14 years earlier. I would see and talk with her husband and son who told me she was upset, and I still couldn’t understand why it mattered when I told her. I finally decided to let the hurt go and de-friend her on facebook with an explanation that this was about ME not HER.
I had a couple of people who offered to drive me to chemo last summer only to have the first oversleep – I drove myself, and the following treatment another friend become suddenly ill. The only person I could rely on was me, myself, and I. Other than my first treatment that both my mom and aunt came to I did everything on my own. Not one person did a damn thing for me even after offering their help. I know it’s not easy to specify what we need but like someone else said, a meal or several meals is a great help.
I was, at least fortunate enough to not get many “stupid comments” and I hope to never be the one to ever say one of these stupid comments.
Sorry to go off topic
I also got the most annoying and ignorant comments. Two that I’ll never forget: Another New-Ager who assured me that if I didn’t go back and forgive everyone I held grudges against, “the cancer WILL come back.” Another idiot friend sends me a link about baking soda shrinking cancerous tumors. Not only is this a load of crap, but she writes, “For your consideration,” after I’d already had a lumpectomy. What was I supposed to consider? That I’d made a mistake? This same friend wrote me a “funny” song about chemo right before I was supposed to start treatment, like an SNL sketch complete with bumpkin accent. I made her stop and very firmly said, “I don’t want to hear it. It’s NOT funny.” When we get cancer, it seems like every idiot in the universe opens their mouths. SO GLAD you posted. I thought it was just me who blathered on about this.
p.s. So sorry you and your husband were subjected to such insensitive comments. Unbelievable.
It’s difficult to fathom. My heart breaks for the woman who was only allowed to be sad one day a week. I understand that, as I have to hide my tears and sadness all the time to avoid family getting discusted with me. It’s hard enough having cancer, going through treatment and living life with fear let alone the insensitivy and ignorance that we have to deal with. This is all mind boggling and the reason I keep to myself and don’t attend functions with people who I have not seen or spoken with since my diagnosis. I would melt down if I were on the recieving end of these mindless statements and questions. I’ve learned to surpess it all and be quiet. Thank you Lisa for speaking up and speaking out. <3
Such good discussion and a testimony to the pitfalls of human communication. What may seem insensitive and hurtful to one person, may be comforting to another. But anything that diminishes or squelches the difficult, raw emotions of cancer isn’t helping. I think many people who end up putting their foot in their mouths are responding from their own place of fear. “It’s good to see you” seems like a good thing to say. I would add “Thinking of you” as a good parting comment. I am also one of those who appreciates hearing “I am keeping you in my prayers,” especially if it is coming from someone who is sincerely faithful. It doesn’t seem empty, but rather their effort to throw some positive energy into the universe. Thanks for this great forum Lisa.
Insensitivity is not confined to illness. When I was facing eviction and had a looming court date, I got a bleeding ulcer. I was a mess. A friend came over and when I said, “I’m going to be evicted, where will I go, what will happen to me?” He replied, “Think of it as a new adventure.”
I torture him to this day about that statement.
makes me laugh. i have had some funny ones.
in an email from a woman in town after i had a 104 fever on christmas day: “Do you watch the show Parenthood? The mother in that (also going through chemo) had a fever for Christmas as well. She went to the ER.” Yes, my life is JUST like TV
and a totally insensitive one:
a good friend telling me what a blessing it was that an acquaintance of hers had “FINALLY died (from leukemia). her children had just watched her be sick for too long.” wasn’t just insensitive to say to me but made me realize that she and i are worlds apart.
Speechless. I doubt that this acquaintance’s children share her “sentiments”.
I have probably been guilty of the “what’s the prognosis?” one. It is hard to know the right thing to say though. I do try to stick with the “I’m sorry. Let me know if/when I can help.” I don’t do meals either but I will help raise money, contribute to a bake sale, watch the kids once in a rare while, or just be there to listen if I can.
Another excellent post on an important topic. The thing that really got to me was the person who was telling you the perks of dying young. STUPID is right. People say all kinds of nutty things to those with cancer. It’s a damn shame.
I’m rather blown away by some of the things you wrote, especially by people in the healthcare field. Dr. Joe and his crew never say Catherine is cured…they tell me they don’t have a crystal ball that tells them the future, but today there is no cancer. Love and hate the honesty. Anyway, the 2 things I get about Catherine, and I sometimes want to scream about them: 1) you actually worried that she might die? (um, well, yes, my kid was diagnosed with a systemic cancer that would have killed her within the month w/o treatment and she was checked for relapse during treatment more times than I care to remember); and 2) now she’s all better and all is well going forward (no, she is at a higher rate of developing cancer again (any cancer) and there are late term side effects that she will have to deal with the rest of her life. Will I take the late term late term side effects? Absolutely, because it means she is here to have them. I just wish she never had the cancer in the first place as it changed our entire dynamic and the way I look at my kids whenever they have a bruise, are tired or have headaches.
My beautiful Mum passed away nearly three years ago from ovarian cancer, but when she was really ill and was confined to a wheelchair I convinced her to let me bring her out for a walk in the fresh air (she was embarrassed to be in the wheelchair) but she let me bring her. She was really enjoying being out and about and we were having a lovely chat to some neighbours when another remote neighbour passed by and said hello and then proceeded to tell my mum how much weight she had gained on her face (clearly he had never had cancer and taken steroids). Just so insensitive and it made my blood boil, but we managed to make light of it and carry on. It could so easily have put her off going out which was a great joy to her, I just wish people would engage the brain before they say anything and just try to say nice things, it’s not hard after all.
My mother: “Do it for me.”
Wow, I am sure some of these were made by people who were trying to be helpful but so many of them are mindblowingly insensitive. My father chose not to tell any one outside of our family that he had stage IV prostate cancer because he did not want his conversations/ relationships with friends to be different in any way. We felt a little mixed about his choice for a number of reasons. Reading this post makes me realize how many asinine comments he probably avoided. It comforts me a bit to know that he did not have to suffer through all sorts of awkward/hurtful moments with friends and acquaintances. Thank you.
My mother, when I told her about my husband’s brain tumour, “It’s all the stress you have been putting him under” and she herself is a cancer survivor! Made me wonder if she blamed me for her tumour too. With friends/family like this, who needs enemies?
These are amazing, Lisa. I had a few that really blew my mind. One was: “Well, it’s not like breast cancer can kill you. It’s just in your breast.” (Does this person not realize the whole point of invasive cancer is that it SPREADS? I guess the answer was no.) Mostly I found it insensitive when people wanted to know WHY I got cancer–as if I even knew. Questions like: “Was this because you take anti-depressants?” Anyway … this was quite the list. Sometimes there aren’t words when you encounter such things. And maybe people will read this and realize how important it is to choose their words carefully …
I heard most of those when I was diagnosed and I always felt myself putting up walls when I could tell someone was going to comment or ask about my diagnosis. One day I was at a camp that I grew up going to. I was just visiting b/c I had to start radiation the next day. A little 10 year old girl came up and asked me what happened to my hair and I told her I had cancer. And she said, “Oh, I’m sorry you have to go through that.” And she left it at that. I was thinking to myself…why can’t adults be that intuitive?
Beautiful.
After I was diagnosed with an aggressive form of breast cancer, I decided to take a medical leave from work during treatment. I met with my main co-worker, supervisor, and head of facility (all women) to discuss situation and plans. I was nervous, scared about the aggressive cancer and still in process of gathering information. As I was telling them what I knew I started crying as I was trying to come to grips with my current situation. The head of the department looked at me and said “Well it’s not the end of the world”. I felt so foolish for showing emotion. For some reason I think about this almost daily as it bothered me so much.
Perhaps she was trying to reassure you that you didn’t need to feel guilty for leaving work? Ye gods, what a hopeless comment!
I suspect she thinks about it almost daily too, and says to herself, “I can’t believe I blurted out some dumb thing like that…”
Thank you for telling us about that Patti — it might keep someone from ever saying such a ridiculous thing to someone going through a difficult time.
Yeah Lisa, i think I’ve heard most of those and more. I loved it when a homeopathic ,whom My family has a lot of faith in, suggested my cancer could have come because I didn’t feel loved. Everyone has an opinion. Lately I just seem to be asked advice from other ladies with BC and I like to help them out and put them at ease. Many of them are low stage and sometimes they give me a pity look when I tell them of my Stage IV Mets. It doesn’t bother me very much anymore. I’ve been dealing for over 2 years and will keep on. I actually find that some people/friends don’t know what to say and kind of back away. This is when you discover who your true friends are. The “strong” and “positive” comments can get redundant but I know they mean well. I am strong too, as are you and anyone else fighting this scourge. I think I hate the pity face and back aways more than words. (It’s not contagious you know) Good blog piece.
Most must realize cancer is not physically contagious. .But your honesty about your diagnosis. Shakes their comfortable world and they seek safety as they see it.
My dear friend has had stage IV BC for 19 years now, so far. She has no idea how she’s done it; she has plenty of anger in her from time to time, doesn’t eat perfectly, and thinks a lot of negative thoughts, etc.
I guess people are afraid of the idea that we can be powerless to vanquish cancer with our thoughts.
I am going to add one to the list. I am now 54 and have lived with BC for 32 years. I have been stage IV since 2006 but had BC twice before at the age of 32 and 41. So I was 41 with 2 young children when I had to tell my boss that the cancer had returned and I needed a mastectomy. He was extremely religious. He told me there was nothing I could do that this was the will of god. So I told him that may be he could ask god to leave me alone and forget about me for the next couple of years. …..He also told me that I could come to work with a wig that my co-workers were all adults….I returned after 10 weeks and on the 2nd day he asked for a complete update since nothing had been done in my absence. I felt I was in the twilight zone.
I have a chronic, incurable lung disease which requires me to wear oxygen in public occasionally. A week ago, a woman who had climbed over me a number of times in the auditorium where we were enjoying a concert, said to me as I bent to adjust the flow on my portable oxygen, “That breathing machine is here in my way again!” No smile, no joke.
I looked at her and smiled and said “Me, too.”
Duct tape can’t cure stupid, but it can muffle the sound of it.
It is sometimes very hard for a person to know what might be comforting, even with regard to themselves. I am not a religious person and do not “believe” in the effectiveness of prayer. Twenty years ago my husband was dying of leukemia. I left updates about his status on our answering machine so I didn’t have to return calls late at night. One day there was a message from a stranger who had dialed our number accidentally. When she heard my update about my husband’s condition, she said they put his name in their prayer circle and would pray for him every day. To my amazement, this brought me to tears – that someone would take an action they believed in for a complete stranger.
Lisa, what a magnificent blog. This is my first visit. I have just completed lumpectomy, chemo and radiation for low stage invasive breast cancer. Like many of us in the cancer community I have received many of the above insensitive comments. One person kept me informed of her dog’s chemo for cancer. Yes, the dog and I were going through it together, although we never met.
We don’t seem to have a template for how to gently respond to someone experiencing such a scary episode that changes one’s perspective forever.
Before I had cancer I made some of these mistakenly insensitive comments myself. How I cringe when I look back on that. People do back away because they don’t know what to say, how to help, or how to remain connected to someone going through something so terrifyingly life changing.
The best things for me were friends and relatives who regularly kept in touch by brief calls, emails or even texts. If you don’t know what a person is experiencing because you are out of touch, you can’t know how to help or what to say. And it does help to just think of something helpful to do and just do it. And it doesn’t have to be a big thing. I am still the same person, all the things I cared about are still valid. I am still me, just having a rough patch. Meals (if I can eat), books, flowers from your garden, cards, letters, magazines, emails, links to cool blogs, DVDs, your photos and news, and sensitive, brief visits (asking for permission first), were all helpful. If you don’t know me well, a card is always appreciated.
Asking if someone wants to talk about their illness and how they feel is respectful. There is lots of other stuff to talk about once that is established. I want to hear about your life too. Balance.
Life goes on, and I hope for the best. I don’t feel strong, or special, nor do I feel like a warrior or hero. Just a person dealing with what is happening, as Lisa and other cancer patients are. Its great to know that you care about me, want me to feel better, can give me a hug, support my choices, do what you can to help, and stay in touch. “Its good to see you” works just great and so does “I have been thinking about you, and here you are!”
Lisa, I guess all friends respond stupidly when given the news. These were some of the comments from friends and acquaintances when I was diagnosed with breast cancer – I put them in the form of a “list poem” that I call “Responding to Bad News” although “Stupid Things People Say” is even more apt. I’ve just discovered your blog and I’m profoundly grateful to you.
My cousin had it four times. Thank goodness it was never that , but you know, each time it was scary as hell.
I’ll be 86 this year and I’ve never had it, thank God. It’s better to live and not have it.
You’ll be fine. You’re a tough old bird.
You don’t deserve this.
I couldn’t call when I heard. I’m such a coward. I can’t bear bad news.
Just remember, you’ve lived a good life and your kids are grown.
Don’t worry about having your breasts cut off. No one is going to see them except you.
You’ll be okay. It’ll be good news. You’ve been through too much already.
This is so unfair.
It’s probably just scar tissue they’re feeling.
God never gives us more than we can handle.
Let us cook you dinner, then Reiki you.
Are you able to write?
I’ll sacrifice a goat for you.
I don’t dare tell you about my troubles. They seem trite by comparison.
I’m sure it’s just a cyst.
You’ll have chemo, you’ll get a fabulous wig and lose weight.You’ll look great.
My mother had it.
You’ll be fine. You’re so vibrant and strong.
Don’t be afraid to cry. You don’t have to be a hero.
Did I tell you about my friend?
Are you meditating?
What was it your sister died of?
Do you want an Atavan?
Have you told your kids?
Is there anything I can do?
I hope you’re not making yourself sick over this.
Worst thing said was from a family member who byoassed saying anything comforting and proceeded to tell me in detail about a friend of hers who had cancer much worse than I did and so I should be grateful. Ya. Turned out that first diagnosis was a mix up of pathology reports and when the second diagnosis came a few months later I declined phoning this family member to tell them. I just couldn’t summon the emotional energy.
I had a client tell me that I shouldn’t have had a mammogram, because then I wouldn’t know that I had breast cancer and could continue working and seeing her. A plastic surgeon told me that I wasn’t suitable for immediate reconstruction but if I was “still around in year”, she would see me again. That was three years ago and I found another plastic surgeon.
I’m laughing out loud at most of these! And many I had heard myself. But…we’ve got to cut people some slack. There truly aren’t the “right” words. Thanks for the laugh this morning!
Lisa, I too have heard a lot of the stupid things. I remember when I was looking for the words to say to tell my co-workers about my Stage IV diagnosis. You told me to be honest and tell people what I want them to know. Thank you for the advice. I pulled my closest work friends into my office one by one and told them about the cancer coming back. I received a lot of hugs and support that day. I asked each of them to please continue to stop in my office and chat, ask questions if they had any and please don’t avoid me. If you don’t know what to say, come in and say, “I don’t know what to say”. I have a coworker that has the reputation of being rather grumpy. Every day, every single day, he makes the effort to walk by my office and says “Good to see you here Barb” and I respond “Good to be here Roger”. Makes me smile every time! Thanks Lisa!
This is very touching, Barb. It also helps your coworker widen his world view.
My favorite things that people have said to me (diagnosed with stage 1 breast cancer at the age of 32) are:
I’m so sorry.
That sucks.
Shit!
Oh my God, that’s terrible!
Do you have a treatment plan?
How are you feeling?
Is there anything I can do to help?
I don’t know what to say but I’m here for you.
You’re in my thoughts.
Place x/Gilda’s Club/Immerman Angels/Stupid Cancer/Young Survival has free programs for cancer patients. I’ll send you the link to their website.
I also appreciated people sending cards, flowers, books, well wishing emails/texts. Acknowledging that cancer is a really hard thing to deal with and showing concern for me as a person is all good. Also helpful, not squirming too much and changing the subject when I say my skin is a wreck from the radiation, I’m having hot flashes because of the tamoxifen, I’m scared about the possibility of ever having children because what if I die, what if they get this cancer, and I won’t be able to lactate on the cancer side. If you ask how I’m feeling or how I’m doing, please really listen if I feel the need to tell you the crappy truth. I find that the most helpful stuff isn’t trying to cheer me up or bring me down, but rather it’s a willingness to be present with me in my profound discomfort. YMMV.
Unhelpful things:
Saying nothing.
Implying in any way that my illness is my fault because I didn’t eat enough blueberries or have a positive attitude or whatever. No one really knows what causes breast cancer.
Telling me you know exactly what I’m going through because your grandmother had cancer in her 80s or because you had a biopsy of a fibroadenoma . (If you in fact did have breast cancer at a young age, you get to commiserate, but otherwise, please don’t.)
Saying “but you’re going to be fine right?” My prognosis is good for the time being, but most recurrence rates are for 5 years, and I’m hoping to live a lot longer than that. No one really knows if this will come back. I’m in no position to reassure you about it.
Talking about my “cancer journey” as though this is some kind of hero’s quest. (Similar to the “gift” thing.)
Telling me about someone you know who died young from breast cancer. I had someone tell me this while I was in the waiting area before having a second biopsy in the other side after I had already been diagnosed, but before I knew the extent of my disease. That was not helpful!!!
It’ll be like this never happened (an oncology resident told me this–I’m pretty sure I’m forever changed by this disease and I have physical and psychological scars to prove it.)
God has a plan/everything happens for a reason/cancer is a gift=not helpful!!!!
I don’t expect anyone to be perfect. I understand that no one has the magic words. Please say something, even if it’s the wrong thing. I’ll forgive you if you’re making an effort. But please don’t try to teach me a lesson or minimize what I’m going through. But really if you show honest concern, I’ll appreciate it, even if you make mistakes.
this was so well said.
I heard the exact same thing when I was diagnosed with malignant melanoma. It was THIS, finally THIS melanoma that would help me balance my job as a doctor and mom. People needing to be okay with the diagnosis, needing distance from the illness only to talk about the lessons. Before there was even time for me to learn them….
I will say though, that I do struggle what to say sometimes to my dear friend with stage 4 cancer. I’ve said, “I’m so sorry,” when the bad news comes over and over and over, and always try to offer help (specifically sometimes as to take away the burden of her thinking up something for me to do) and then I do run out of things to say.
But sometimes, so many of these comments stem from sadness, I think. I would suspect many people who utter these ridiculous things just ache and have no good experience expressing their sincere emotions…
I just found this site tonight. I was diagnosed with Stage 1 BC (both DCIS and invasive) in Sept 2010, had a lumpectomy, chemo, and double mastectomy/reconstruction (March 7, 2011 – wow, 2 years ago now). I am grateful to be cancer-free and healthy, but think about cancer every day. I am deeply moved by your website/blog, Lisa. Your articles and the comments are so alive and vibrant. This is my first time participating in a cancer blog (or any blog). In some ways, I still can’t believe I had cancer. That may sound strange, but the experience still seems surreal to me. While going through treatment, I got the comments about so-and-so having cancer and what happened to them – I couldn’t wait for people to shut up! That’s why I didn’t even want to join support groups. I didn’t want to hear other people’s bad news because I was trying to hold on to myself and find peace of mind. Thanks for listening.
I think that you have found a very effective way of dealing with the stupid things people say. How do think think people come up with this “stupid” stuff?My feeling is that people have been misinformed or totally un-informed and have no idea how to say, “i am sorry and shut up” Rabai Kushner’s word.
I ran into a fellow nurse I know who has full knowledge of my breast cancer and knows I’m in the midst of chemotherapy. She did not asked how I was but immediately launched into a very detailed account of her dogs health issues, tumors here and there, which ended with him being euthanized. I extracted myself from the conversation at that point and headed home. I’m still amazed by this encounter, sure I’ve had to hear a lot of cancer horror stories or cancer inspirational stories but this was my first doggie cancer story….and it ended so badly for the dog.
I also get a lot of the “you will be fine”comments because of my formerly excellent health. It’s a great way to shut down any real conversation about my fears. Even worse is the person who tells me “you must be feeling good since your chemos been delayed.” ( due to low blood counts) Of course this was followed by a request for a favor.
A first I felt the need to be polite to people who made these stupid remarks but I’m at the point now where I realize despite their good intentions, they are being rude. I no longer feel rude nipping the stories in the bud and leaving conversations that are avoidant and strange.
One more, then off I go; after my bilateral mastectomy and oopherectomy I had a friend call and say, ” I hear you’ve been under the knife a lot.” What made it slightly worse was that she was chewing on food at the same time.
My sister was diagnosed with Hodgkin’s Lymphoma at the age of 17. A guy she was sort of dating at the time pretty much cut off all communication with her soon after her diagnosis. When she questioned him about it he said “I’m sorry, I’m just really uncomfortable with death.” He was a real winner…
One of the best things to say to anyone with an illness, regardless if it’s curable or not, is:
“I’m here for you.” Nothing more, nothing less.
-A Medical Zebra
I don’t even talk about it anymore. No one wants to hear about it, after all, “they got it all, right? Get over it.” Sigh.
My daughter was 20 yrs old diagnosed with Stage 3C VIC- a man in his 50·s asked if it was because she was sexually active from a young age!
I am sorry you have experienced this. I personally don’t see a strong person. I see someone that struggled with death and didn’t do it well. I too have something that is a struggle everyday and understand ignorance but they have the best intentions. Your entire article is negative and your entire experience is negative as far as what you have explained here. I ( I am saying I ) am a better stronger person for my disease. I believe God gave it to me to learn like your family member said. It has made me different than most people I know. I pray for you to be okay with life because what comes with it is death. It happens to EVERYONE!!! Morbid? No it is reality and I am okay with talking about it and I cant wait to go to the pearly gates. I pray for you to live a long life and that you will be happy.
Anon 3/13 9:26a sorry for your personal experience, BUT to come on someone else’s blog who is honest and helping so many other people, makes YOU the crazy and NEGATIVE person. Pearly gates? Please. Lisa, you rock!
Those with cancer, especially anyone dealing with metastatic cancer, are allowed to post all their emotions, negative or positive. Staying positive 100 percent of the time isn’t going to make a stage 4 breast cancer diagnosis go away. When my mother passed away from MBC in 1987, it wasn’t because she failed to keep a happy face and didn’t maintain a super duper positive attitude.
What Lisa is doing is educating others on what it’s like to live with a metastatic breast cancer diagnosis, and surprise, it’s not kittens and roses. This is an ugly disease that just takes and takes and takes. Your perspective of cancer is valid, as is Lisa’s, and you have no right to admonish her for her honesty and desire to be realistic. This is her blog, not yours.
She has three young kids, so forgive her for not being happy and excited about going to the “pearly gates.”
Anonymous, I’m pretty sure you haven’t read anything else on my site if you don’t think I am strong or haven’t “struggled with death well.” You may feel you are stronger for having your disease. I, however, cannot view a disease which takes mothers and fathers from their children, friends, and loved ones as a “gift.”
I only talk about reality. I’m glad if your faith gives you comfort. But I do not look forward to death. I respect your view but as someone who is an atheist and has no expectation that anything at all happens after I die, your own views cannot provide me any comfort.
To be chastised for the negativity of my post is actually pretty ironic, since you champion reality. This is the reality of some of the things people have said to me and to others. It’s our reality.
Anon.9:26 You’re crazy. I’ll leave it at that.
I completely agree Lisa. Anon 9:26 is crazy. They seem like a troll. Yes, death happens to everyone, but not everyone lives life desiring to die, which is basically what they said, when they said, “I can’t wait to go to the pearly gates.” That’s what suicidal people do – desire to die, even if they never actual try to go through with it for whatever reason. In Anon 9:26 case, I’m assuming they won’t go through with it from fear of hell, but if they really want to go to the pearly gates, as they’ve stated, then they could always ask for Yahweh’s forgiveness prior to the act (Proverbs 28:13, 1 John 1:9, & Acts 8:22).
-A Medical Zebra
PS: I’m well versed in the Bible, but I’m an atheist.
No, I’m not recommending this person go through with it. I’m trying to point out a flaw of reasoning, i.e. fallacy. I wish no one had the desire to die regardless of their religious ideology or any other reason. This person just clearly hasn’t thought this entirely through..
-A Medical Zebra
My apologies I did not realize this was a blog. It popped up on my Facebook. It thought it was someone writing an article. I thought it was open to comments and different opinions.
It popped up on my FB too, but the header at the top of the browser or top of the tab, depending on your browser choice, explicitly states, “My new blogpost.” The fact there are no sources, e.g. scientific, news, or any other forms of sources typically found within an article, should have been another give away this wasn’t an article. Finally, the last big give away, in my opinion, is the left links for the website.The second one being “*BLOG*.” Next time, please be more mindful, before you make a comment on the internet or in your daily life.. I know I would appreciate more people doing so. Thanks.
-A Medical Zebra
[...] Lastly, a shout out to Lisa Bonchek Adams. She blogs about her experiences “living with metastatic breast cancer, grief & loss, life, and family.” I’ve shed tears reading her searingly honest and courageous posts, and in fact I haven’t finished (and couldn’t finish) reading one of them: The Hardest Conversation. My favorite of her posts so far is the stupid things people say to those with cancer and their families. [...]
Thank you so much for this post! I might add that folks who are saying stuff like “oh my I’ve said these kind of things, I was certainly trying to say something helpful, why are all you cancer people so difficult” I say, get over yourself. People with cancer shouldn’t have to take care of you because you said something silly. Or even stupid. Just get over yourself, learn and don’t do it again! Simple.
After sending a few e-mails to parents of my kids friends I received the most insane comment ever. I was asked if the the e-mail was a hoax sent by someone else because another mom of those that received the e-mail said her sister received a similar e-mail that was a hoax. I really wanted to respond, “Why yes, I sent a hoax e-mail to all of you telling you that I would be requesting help with getting my child to his extra-curricular activities during my treatment, but I didn’t ask for money because really, transportation of a minor is worth so much more!” Have I spoken with either woman or asked for their help with transportation for my child? Nope. Nor will I ever again.
A few more months into this i have many more stupid things to report but one that really gets me lately are the people who havent been there for me or my family and they finally call or e mail and launch into telling me how busy they have been (since november, really). Without a peep from me they then make big promises, meals, shopping,rides…they are so busy making promises that they dont realize i finished chemo now, i havent been waiting around for their help and have things set up pretty well with my family and good friends. What sticks in my craw is that I feel like they are being patronizing and rude, i just want to say, Ive been busy too with surgeries, chemotherapy, fearing for my life…What would be an appropriate response to these busy and unreliable friends?
[...] reading. Stupid things to say to people w/ cancer. And much better things to say to be a friend to someone with serious illness. By the inspiring [...]
“Well, you’ve been needing a vacation for a while and now [during chemo] you get to lie around and read books all day. What could be better?”
To be fair, I think this is the sort of joke that would cheer me up. To each their own I guess.
I think it is better to err on the side of the cancer patient not thinking its funny. Usually i have an incredibly dark sense of humor but with this whole thing im not finding these type of comments funny. What i hear is that the person saying them thinks I am not seriously ill and maybe thinks I am a little lazy and exagerating. Probably not theirintent at all but i think people shoukd let the cancer patient take the lead inmaking inappropriate comments ( or not) and follow from there. When i was in the midst of chemo i wished i could lay around and read but i was unable to concentrate on anything but the simplest tv show so this comment would have definitely hit a sore spot and hurt my feelings.
I never looked for a support group during my treatment last year, although I did correspond with an acquaintance undergoing almost identical BC as myself, our surgeries a month apart, chemo a day apart with the same cycle. I think we helped each other, or at least I feel we did. My main support came from my knitting group and I’m more grateful to them now knowing they were not the ones saying stupid comments, although a few could only talk about themselves. I didn’t necessarily want to talk about me but it was nice to be asked if I was doing relatively well and care enough for my answer. Knitting kept me sane and useful except for the times I was being “lazy” and slept most of the day and night (chemo week and neupogen shots – gawd awful).
Thank you for posting this, I can only say cancer SUCKS and it sucks that anyone has to put up with it. I’ve dealt with cancer within my family for 20+ years, skin cancer and then pancreatic cancer for my dad and BC for my mom. an uncle with liver cancer. It all sucks and there is never anything good about it – cancer is no fracking “gift” and while I don’t care about my breasts anymore others most certainly do and it has nothing to do with looks and how each of us feels about ourselves.
I’m so glad this was posted on a website I visit daily otherwise I might have missed a great blog. Thank you again and again.
Wow. Some really touching words written here…. ‘lots of love.
‘lots of stupid comments to laugh at and… some really ignorant things to cringe at too.
My father passed away from cancer when I was living abroad. He was sick before I left but I said I would return if he needed me and he said I should go. We kept in touch. While I was still abroad, one stupid, stupid person at dinner party learned my father was ill and said to me “Don’t you need closure? You must not care for your father.” I was a little taken aback because I couldn’t believe they said it so I said, “Pardon?” and they repeated it ” You don’t need closure? You don’t care about your father?” I was so shocked I just wanted to shut them up so I said, “Apparently not” and got the heck out of there.
When my mom got cancer a year ago ( I was closer to home during this time), a few stupid comments were said to her:
“You are too old for chemo, you’ll die for sure.”
“If you do chemo, you’re body will never be the same.”
“I thought you took care of yourself?”
And yes, people usually told stories of their friend, parent, dog, cat, bird, that had the same cancer and died… We heard this so many times we started to laugh when it was said…. people are just clue-less.
But there were also some very good people… those who would come by with food or coffee and cakes and good conversation. Those who would take mom to chemo or doctor’s appointments because work would allow us only so many days off. Those who would just visit and enjoy our time together rather than treat mom like she was already dead…. although, we did start to laugh at the people who treated her like she was dead too.
Ive had cancer(s) for over 35yrs of my life…I’m 39 now and I’ve heard them all!
Funny that these comments bother people when in the grand scheme of things, they’re just words and there’s bigger things to worry about.
My daily focus is to make people smile weather it’s saying something funny and offensive or just being companionate to people, it doesn’t much matter to me as long as I can make someone laugh.
Political correctness can kiss my ass, I say what’s on my mind plain and simple.
I march to the beat of my own drum and always suggest everyone do the same thing. Being individualistic weather your sick with cancer or sick in the head is the spice of life, live it , love it, and enjoy every second of it because you NEVER know when your time is up.
Me, I’m like a Time-X, I take a lickin’ and keep on tickin’
When my daughter died of fetal hydrops last year, the day we found out treatment hadn’t worked and she was dead inside of me and now I had to birth her dead body, my MOTHER told me,
“now, don’t get upset”
?!?!
also, my parents have told me she died because we had her “for the wrong reasons” and “we didn’t love her enough”, and “she was not a real person anyway, because her soul still wasn’t descended into her body” (amongst other things).
I actually need more therapy to deal with them (& other ppl like them) than with my grief.
Jeez, THANK YOU for educating people in how to be human.
I’m so frustrated with the whole they mean well/they don’t know what to say excuse. To me, it’s a non-excuse.
I think, hugs might have saved my life a couple of times.
I’ll try to remember not to say anything at all if someone gets cancer. But I guess that will be an insult too. Oh, here’s one: “maybe since you got cancer, it’s an opportunity to learn that people have no clue what could possibly make you feel better, can’t think of anything good about your having it, but also know if they either say something happy that has nothing to do with cancer, or say nothing at all, that will be the wrong thing to do too.”
I would love to see a very long list of all the right things to say when learning someone has cancer. Oh but wait – that wouldn’t work either – then we would just be saying it because it was on the approved list of cancer etiquette, hence not coming from our hearts, or any genuine sense of……..of………uhm……..of……..well I better wait for the list to come out, and choose the right word from it, before I take a chance & offend someone.
I did write a long post on how to help and what to say (the link is in the piece above) because it was the most requested topic. People want to speak from the heart but don’t always have the right words.
It’s a shame you are so defensive and you view learning and education as unnecessary and contradictory to true empathy and compassion in this case. Most people want to learn how to help friends or loved ones. Reading/using some ideas doesn’t make them any less genuine or from the heart. It means you cared enough to see if there is anything helpful you could do in your desire to be a good friend.
If you already know kind and supportive and truly helpful things to say, you would not need to learn. There are many people who do, but the tone and content of your comment leads me to believe that might not be the case. Without reading the suggestions you’d never know. It was the most appreciated post I’ve ever written and those who struggle for some ideas to help friends and loved ones were grateful.
As a psychologist, I thought that I was a pretty empathetic person, but after I had cancer, I learned that some of the things that I have often said aren’t helpful. The one that got to me the most was “let me know if I can do anything.” Why should it be my job to figure out what you (the healthy one) could do? Offers of concrete help were much more helpful, rides to treatment, prepared meals, etc. The other one that still gets to me is “you look great” because the subtext is you look great for a person who has cancer”, and there is an edge of disappointment that I am not bald and skinny.
A doctor actually used this analogy when questioned about treatment and plan: “well, the horse is already out of the barn.” He was refering to the fact that the cancer had already spread to the bones so the cancer had left the breast (barn).
I mean seriously. Some people should not be in the healing profession.
On hearing the news of my diagnosis with endometrial carcinoma, a very rude and highly narcissistic colleague of mine asked me : “Did you catch it ?” I was so stunned by her ignorance that I did not even bother to correct her. Weeks later she proceeded to tell me that I should perhaps get a second opinion and that I should not look so glum as there are so many more people worse off than me and I would do well to remember that!!