It’s frustrating and soul corroding when friends, family members, co-workers, even doctors shower you with stupid comments about your disease. And it’s even worse to think of the perfect comeback three hours later when you are laying in bed. Venting online with like minded patients about how we’d like to smack these people is all fine and dandy. But, I’m actually more interested in realistic responses that will make us feel better.
I’ve started trying to turn these situations around. Here’s an example: A friend recently said: “You gotta think positively and it will make your test results come out okay.” I replied in a really nice tone: “I know, I hope everything is okay. But did you know that studies show positive thinking doesn’t really impact cancer growth? I guess I usually just let myself feel nervous and then deal with the results when I get them.” She was surprised to learn this piece of information, became even more interested in what I was actually feeling and going through, and we had a cool conversation. So, here’s what I’ve learned to include in my comebacks. I know this all may sounds a bit therapisty - so forgive me:
I get friendly instead of confrontational. Being a smart-ass only shuts the door. I think of my response as an invitation to more conversation, rather than a statement that will put someone in their place.
I try to teach them one thing about my life, my illness, or my reality. Not a lecture, but just one little nugget of info that helps them better understand what my life is actually like.
I start by saying something simple like: “Actually, that’s interesting I have the opposite experience…”
Does this work with everyone? No. There are some people I don’t have the energy or desire to deal with. With these folks, I just note in my head, “This person’s so wacko I don’t really care what they have to say.”
What are there smartest, most useful responses that you’ve said (or could have said) to people’s stupid comments? Am I full of it or do you think my ideas are actually applicable to situations you find yourself in?
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
January 8th, 2010 at 9:53 AM
You’ll be fine!
Ooooh, this is a good one. I find it really aggravating when people say “I know it will be OK.” Because they don’t. And sometimes it’s not OK. When I was going through my high-risk twin pregnancy I heard that every day. And one of the babies died. And her sister was in the hospital for 5 months. Also, when people offer unsolicited religious advice. Like “God has a plan,” or “just pray and it will be alright.” When I was waiting for my biopsy results it absolutely made my blood boil when people urged me to be positive.
At some point my therapist gave me one really valuable piece of advice which was in regard to my baby, but worked for my health issues too. When someone kept going on and on and I could feel my anger (or tears) rising, just put on a smile and say very pleasantly: “I know you mean to be supportive, but what you are saying is not helpful to me right now.” I’ve used it a few times, and it always made people stop on their tracks. Sometimes I needed to repeat it, but eventually people stopped. It stuns them. But you have to say it nicely so you don’t seem to be a wacko who’s losing your mind.
January 8th, 2010 at 1:18 PM
Think positively!
The problem with the “positive thoughts” thing is that - as you have pointed out - it seems to place responsibility on the victim - right at a time when you can’t shoulder any more stress. Pointing out potential dire consequences is unhelpful as well!
I wonder: perhaps it would be more helpful if other people were to take on the positive thought heavy lifting. In Peggy Huddleston’s “Prepare for Surgery, Heal Faster” she suggests that people ask their friends to visualize them in a warm blanket of love and good wishes. I did read the book and listen to the CD, both before as a relaxation technique to help me sleep, and during surgery. I also asked the anesthesiologist to say the affirmations during surgery. I don’t know if he did, but he did agree (The hospital had posters all over recommending the program) and I rebounded very quickly (I was up and straightening my room as soon as they took the IV out and went home less than 14 hrs after the operation was over.
I think I found it too corny to ask many people to visualize me in a warm blanket - but I did tell them my surgery time and I did ask them to visualize a quick comfortable outcome for me & my surgeon while I was under. I think I’ve read that studies of prayer show that having other people pray for you is more helpful than praying for yourself. Perhaps this gives the “awkwardly concerned” something constructive to do, thus preventing them from showering us with statements that only add to our stress. After all, most people really do want to do the right thing.
January 8th, 2010 at 2:14 PM
Stupid comments from doctors
I think you are talking about dumb doctor comments, right?
When my brother was in the hospital getting his prostate cancer diagnosis (he was 35), a doctor pulled my dad aside and said, “I could take his testicles off today and stop this whole thing.”
Not only was that horrifying, it was (a) not necessary, and (b) would not have worked. I think you are right, Kairol, that usually taking the rational, kind approach is best, but there are situations like this that cross the line.
I have a huge advantage in interacting with my own docs that I am (over)educated and actually study communication for a living. When there was a miscommunication between my doctor and me around when and how I needed to apply the lidocaine to my port, her response was, “But it says right on the box!” I re-read the directions to her and explicated for her why the words were less than obvious. I think a lot of it is a matter of perspective: for the medical people, what is completely novel and foreign to the patient is absolutely routine to the point of hard to explain.
January 8th, 2010 at 2:55 PM
You look great!
I constantly get the comment “You look great, it is hard to believe you are so sick”. Part of me wants to reply that I am sorry I don’t look like I am dying of cancer or maybe you should look under the hood. Recently though I have come up with a more constructive response. Instead of the rash comment I tell them that my body has gone through a lot of changes in the past year and while they might not see them, I am reminded of them everyday. I also say thank you and say that I wish I felt as good as I looked. Anyone else have ideas of what to say to that?
January 8th, 2010 at 3:11 PM
You’re so young!
What did you do to get cancer?
I haven’t perfected a response for what I hear most often when people (even medical professionals) learn about my lung cancer.
1. “Did you smoke?” — No, I have never smoked….but that doesn’t mean I couldn’t get lung cancer. And even if I had smoked, does that mean I would have deserved it? This is a frustrating stigma surrounding this disease and I’ve only been dealing with it for a short amount of time, so for now I tend to ignore the comment, or reply politely with a No.
2. “But, you are soooo young!”— I always just say, “Oh, I know.” or “Yeah” to the “You are so young” comments. I think people just don’t know what to think or how to respond when they realize that I have had lung cancer and a lung removed, at age 27. I apparently was not too young.
I think that this post reminded me that I should come up with an intelligent, informative and eloquent response for these comments, not just for my own sanity but to help spread awareness.
January 8th, 2010 at 3:45 PM
Think positively!
What did you do cause your cancer?
I get the whole “think positive” thing from my boyfriends dad, and then he will tell me about how one of his friends was so moved by a cancer patient he became a jehovias witness just like he is. I listen, then smile and say, that’s a nice story.
My mother changes the subject whenever I start talking about the next step in treatments for me, so there isn’t really anything I can say.
I have had “oh way too much partying hey?” or “the party life finally caught up to you” because people assume that the kind of liver cancer I have is caused by drinking and/or abuse of my liver when I have a very healthy liver (whats left of it). To them Ive just laughed and said, yeah you know me, drunk every day of the week! <- with lots of sarcasm. Its hard not to feel like you have to justify yourself, and I did do that to begin with, but now I just take what they say with a pinch of salt. I am polite and try to make sure I don’t insult anyone, even though sometimes I want to punch them for making assumptions about me. But really its just their ignorance showing through, and that’s their problem, not mine.
January 8th, 2010 at 7:21 PM
Melissa – I like your response “I know you mean to be supportive, but what you are saying is not helpful to me right now.” I would also be curious about framing it in the positive so people don’t get all self-conscious feeling like they said something wrong to a cancer patient. Maybe – “Thanks for your support. It is actually more helpful for me to hear xyz …” Then they will at least have an idea of what a good thing is to say to you next time.
ChemoBabe – You know that category of people who are just too stupid to engage with? Yes, it even applies to doctors. The doc during your bro’s hospital stay sounds like one of them!
Alli – What more is there to say? You nailed it.
Stepahanie and Tabstar – What I would say is “Nope. I never smoked (or nope I’m not a drunk.) Even healthy young women like me can get lung/ liver cancer. Kinda scary huh?” It educates them, totally puts the ball in their court, and gets to the root of what they are probably thinking, which might be something like – oh, I hope they did something to cause this because I could never get a disease like that!
January 8th, 2010 at 8:48 PM
Stupid comments from doctors
Your lucky you have a good cancer!
You look great!
With Thyroid cancer, I am often told: well if I were to get cancer, that’s the one I would want. Personally, I would not wish cancer on anyone. I have been told this by frends and aquaintances not to mention nurses, and nuclear medicine techs 2 different times AT A MAJOR HARVARD AFFILIATED HOSPITAL in BOSTON when I went for the radiation. I decided the next time it happens, I will make a call to the head of the department and report kindly that the staff needs better training AFTER speaking to the (well meaning?) staff person that it’s not helpful.
Just 2 weeks ago, a client told me the same thing over lunch and I just calmly responded, you know, my prognosis is good, but it’s a lot to go through and we haven’t been able to get the hormones right in 2 and a half years since surgery. This is most likely a permanant situation for me. I have sufffered enormously and I shift between exhausted and super hyper which causes me to have seizures so my life will probably not ever be what it is once was. So while I will most likely die from something else, it really is not a good thing at all… No anger. No tone, just fact.
She said: you are right. I shouldn’t have said that. I was trying to be positive. I am sorry. Thanks for sharing your situation with me.
And that was it. Then we moved on to another conversation. She got it.
But sometimes I dont say anything because it’s not worth it or the person saying it is dumb. or should I say DUM.
I have a friend w/MS and we often joke that thank god inspite of what we go through we still look good. (she is 60, I am 43) We are both decorators so its kind of a look/fashion oriented business. I dont mind that I still look good even though I feel like crap a good amount of the time.
Alli- Have you tried joking? Sometimes when people tell me I look good (when I feel REALLY bad) I joke and say: It’s the beauty of Clinique! For some reason, this makes people laugh. something about the word Clinique.
Lisa- I did the peggy huddleston thing before the surgery. It helped me hugely. The last thing I remember before going under was one of the residents repeating nice phrases to me. (I forget the ones she read- it was 2 long ago, but they taped them to my gown so they wouldnt forget to say them.) It was very soothing.
January 8th, 2010 at 11:18 PM
Inappropriate religious comments.
You’re so young!
You look great!
I’m a 25-year-old head & neck cancer patient currently in treatment.
I don’t know if I’ve ever really come up with a good way to respond to people, but this topic is definitely something that continues to bring me loads of frustration.
Kairol, I’m curious since you’re an atheist, as well, how you handle religious comments. I admit I have cancer A LOT more often than I admit I’m an atheist and all the “God will take care of you and make everything ok” comments really get under my skin. I generally smile and say something to the effect of “I have one of the best teams of doctors I could possibly ask for and am using some of the newest and best technology and treatment options. Because I’m so young I should be able to fight this disease as hard as possible.”
I’ve been continuing to go to work throughout treatment. It’s hard working with dozens of different people who notice all of a sudden I have a giant scar on my neck, my speech is slurred (surgery damage), and I’m leaving every day 2 hours earlier than normal. Needless to say, I’ve had to explain to a lot of people that I have cancer and am going through treatment right now. I get frustrated by the “But you’re so young!”, “You don’t look sick!”, and the “Oh my mom/dad/sister/etc. had cancer. You’ll be fine.” I think the best conversation I had was when a friend/coworker said “But you’re ok, right?”. I turned to him and just frankly said “No, I’m not ok. I have cancer. The treatment is going to make me nauseated, fatigued, and give me rashes on my skin and sores in my mouth to the point where I may not be able to swallow for weeks. I have to get much, much worse before I’ll be ‘ok’”.
I just don’t understand how people think lying to my face about how everything will be fine is a way to help me through treatment. It’s a very frustrating thing to deal with. I look forward to seeing how others respond to these situations.
January 9th, 2010 at 1:12 AM
I too look rather healthy still, to the point where most people don’t realise and some even forget that I am sick, including my boyfriend!! The get up and go, makeup applications, clothes/hair, doing lifes little things, keep on trucking etc etc stuff that you do every day can mask what you are really feeling like on the inside. For me, half the time this is deliberate because I don’t want people asking questions. But when they do find out, the response is the same as what you are getting Jen. But you don’t look sick?! I even had one person, a friend of a friend turn around and say to me, Bullshit you’ve got cancer, I heard it was a benign tumor!! I said “Thank you Dr.Jessica, my specialists must have been wrong!! And here I was thinking I was REALLY sick!!”
My boyfriends father is a Jehovah’s Witness. No one else in his family is, not his mother, just his father, who found god 17 years ago. He goes to his meetings on Tuesdays and Sundays, and he tells me he prays for me. I just say “thank you for taking the time to think of me”. It was hard for me to swallow at first, I wanted to say I don’t believe in that, but that would have been throwing his good intentions back in his face and although I don’t believe, he does, and I respect him enough to just say thank you.
A smile, and a “thank you” to someone who also says “You don’t look sick”, is also a good one, because even though you might be feeling like death on the inside, you still manage to look fabulous! :) I often say “yeah, makeup hides a multitude of sins!” or “Its amazing what a lovely hot shower does huh” or my favourite “yeah I just came from a really expensive day spa, obviously it was worth it!”
January 9th, 2010 at 7:54 AM
For me, two categories of stupid-but-well-meaning comments really get to me - the unsolicited religious stuff (all of it) and the comments people make on cancer support forums after they find that someone in late stage IV has taken a turn for the worse, or died…”this is so upsetting, just last week/month s/he was doing so well!”
For the religious stuff, when someone brings their God into the conversation, I smile and politely reply that I am working with some of the best doctors and freshest science in the business. Sort of a “you go your way, I’ll go mine” approach. I’m not going to deny their faith, but I’m not going to affirm it, either.
On the cancer support forums, I admit there is one particularly tough pattern for me to take. Someone will post that there are no drug options left, that s/he is chasing clinical trials to see if one will accept him/her, that they’re in increasing pain from bone mets or developing seizures from brain mets or the docs can no longer manage the abdominal fluid build-up that can happen in late-stage colorectal cancers…or that they’ll be away from the boards to try one of the particularly dangerous late-stage chemos or procedures. Then they won’t post for awhile. And finally a relative will post to the account, saying that so-and-so is having a difficult time: constant seizures, constant pain that the meds can’t control, no longer recognizing family, they’ve called in hospice, or the patient is in the hospital and not expected to make it through the weekend. However, the responses that get me come from other *patients* - some will reply in horror that the person’s 5th clinical trial attempt just didn’t work, that so-and-so was always such a fighter, that they had no idea so-and-so was doing so badly.
I want to slap people when I read those posts (so much for 30 years of non-violence!) I know that denying the severity of someone else’s condition is a coping mechanism that helps people plausibly deny their own circumstances - but this happens over and over again, with the same posters. I feel like screaming through the monitor “what did you expect? this disease kills people! can you not see the signs that someone is about to run out of miracles?”
For now, I try to just not respond. Because I honestly don’t know how to say ‘will you @#@$ing wake up and smell the coffee’ in a pleasant, community-acceptable manner. ;)
As for the you-look-so-good (for someone with cancer) comments, I usually say something like “Bare Escentuals and I are inseparable.” But the *best* response I ever came up with was a paraphrase of an Addams Family line - “Cancer patients and homicidal maniacs…we look just as good as everybody else.”
January 9th, 2010 at 11:21 AM
I can’t tell you how many people have asked “Do the doctors know what caused it?” (breast cancer) My response is that if they knew what causes cancer they would be further along in finding a cure. I suspect that the question is really about which of my bad habits is to blame. It’s tempting to say “Underwire bras” or “cell phones.” However, I’m biting my lip becausse being snappish is one of those bad habits that I’m working on.
January 9th, 2010 at 1:45 PM
Great topic! I would love if we could just continue to bank everyone’s responses on this, and have an ongoing list of “comebacks” to try as people come up with them. It seems there are a bunch of similar comments we all hate, the “Be positives”, the “you look goods” ..maybe we could group it by comment and helpful responses? ha:-) Since not all responses work with all people, it’d be nice to have an assortment to pick and choose from, other than what I’ve personally come up with.
I’ve used some of the responses above, tried out the whole, studies don’t show positivity cures cancer, etc… but it depends on the person if it works. The people who say things just to be nice cause they dont know what else to say, they sometimes awkardly accept it, but it’s a cliche so ingrained into society, that they are kinda almost don’t believe when I say it. Other people get pushy with the positive or similarly religion stuff cause they really believe, and they basically will have this attitude of implying I’m wrong and will suffer because of it.
Ha, Ali and Pat, you’re responses bout “looking under the hood”, and “homicidal maniacs looking good too” cracked me up! I seriously might have to use them for those that don’t respond to the gentler, more logical/psychological approach. I do find sometimes humor/sarcasm works better with people, ha, I just wasn’t clever enough to come up with a good response yet:-)
January 9th, 2010 at 2:22 PM
Great post, Kairol. One of the “20 things people with cancer want you to know”, from my book of the same name, is “Telling me to think positively can make me feel worse”, and, as you know, I’ve been writing and speaking about this topic for years. What can add more insult to injury than the kind of fear that “You have to think positively” can engender when cancer survivors just can’t manage to keep their chin up? “So if I’m feeling down [or thinking realistically, as you say], I’m making my tumor grow?!” Sigh.
As for something smart you can *do* rather than say, check out Barbara Ehrenreich’s book, Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America, and feel vindicated! She takes aim at the “happy face” movement she claims has millions of Americans “drinking the Kool-Aid” of positive thinking, sometimes to their detriment. A great read. (I’ve written a couple of articles about the book - see http://yourtotalhealth.ivillage.com/can-happy-thoughts-be-hazardous-your-health.html )
One thing: I prefer to call the comments “ignorant” rather than “stupid”, because stupid is defined as “lacking or marked by lack of intellectual acuity”, and lots of smart people are simply misinformed or clueless, and have good intentions. I love your idea of educating them. It’s a gift to us all.
Thanks, Kairol, for all your great work.
Lori
http://www.lorihope.com
Author of “Help Me Live: 20 things people with cancer want you to know”
January 9th, 2010 at 4:42 PM
There is not always a fight. sometimes biology, anatomy, bad medical luck wins. Not everyone can get better (It’s like that for me with the epilepsy, but I am doing OK right now). Not everyone lives through an illness whatever the illness might be.
It’s the the elephant in the room — no one wants to hear that or say that it. Personally, I think the truth can set you free. The problem is when the truth is YOUR life. If the truth is bad news. That’s just sooo scary. Maybe that’s why even on cancer forums people express shock when someone looses “the fight.”
I hate those words. As if we could train for it, practice it and effect the outcome. Short of the knowns: being exposed to aespestus or other toxic cancer causing chemicals, smoking and drinking too much, inheriting a known gene to cause cancer, and perhaps living next to a nuclear power plant of some kind, like chernoble, well the medical community cannot always explain why we have what we have.
That unknown is also so scary, maybe why people ask so often- how did they find it? How did you get it? Did you smoke… etc. because they are afraid they too are doing soomethign wrong, doing somethng that will be missed by the drs or they should look into? just guessing.
I also agree with tabathar, sometimes a thank you and a smile is the best tactic. It’s about them afterall, their attempts to help. And a lot of the time, it is well intended. Well some of the time anyway.
January 9th, 2010 at 7:34 PM
Hi Kairol,
I found this blog when I was trying to do some research on Thyroid cancer. I was diagnosed with Thyroid cancer when I was 34 years old. Unlike what I have read about your condition, I responded to treatment well, and am doing fine for the time being. As for stupid comments, I had plenty. First, were the people who said, that I must be a smoker (I’m not). And then, there were the ones who said to me, “What did you get into?” suggesting that somehow I spent my spare time playing in toxic waste. It was a trying time.
Personally, it’s even more trying for me now because it seems that suddenly I’m at a high risk for every other type of cancer. There’s no history of thyroid cancer in my family, so when I was going through the early symptoms, many of my doctors brushed off the lump on my throat as benign. However, after the diagnosis, I am now suddenly at high risk — and I am afraid of everything. How does one overcome that fear? I just turned 37 and on Monday I have a scheduled ultrasound appointment to check for ovarian cysts. So, now I’m scared to death of ovarian cancer. How does one work through that fear?
Thanks for your thoughtful posts.
January 9th, 2010 at 9:38 PM
While waiting to go into surgery to have my mastectomy, a student doctor came in to ask me questions. I was floored when she asked me “Is there anything unusual about the tumor?”
“Yes,” I replied, “It’s cancer!”
January 10th, 2010 at 2:04 AM
Karen, I just went through the same thing. The drs brushed my 12cm liver tumour off as benign, and were even quite sketchy telling me results until I drilled them for more information. Fibrolamellar Hepatocellular Carcinoma (a type of liver cancer) is really quite rare, and like you, I am now also a high risk for every other type too! I had a sore back last week sciatica, went to the dr and he rushed me to have a CT of my spine in case it was spinal metastases. I had a lump in my right breast, so we did an ultrasound just in case it was a breast metastases. I have a bad cough at the moment, and I know when I go see the dr he’ll order a chest X-ray and more blood tests. I still have to have more pap tests because they were abnormal too. It seems neverending and every little thing I am terrified about. 3 monthly MRI’s and monthly bloodwork plus 6 weekly checks with my specialist and monthly checks with my dr, that’s if I don’t have anything urgent to see him about in between that, fortnightly appts with my psychiatrist (<- HUGE help, highly recommended). They said, yeah we got it all, we hope, and left me with 40% of my liver.
Im 32 and I am so scared, but I just try to come to terms with the fact that I am here, now, and I can enjoy the things I have now, and I do things I love and that takes my mind off it. Beading is great for that!!
And Ginny Marie, when I went to see the team for the surgery, one of them asked me why I was there… I felt like slapping her, but they do that half the time so they know you understand what is going on.
This is my proper post, I accidentally pressed submit before I was finished so I hope there is no duplicate!
Do things that you love doing and the time will go by effortlessly. I am writing a book about all the things I want my daughters to know, just in case.. Silly stuff like how to fold laundry, and how to cook roasts, its just for me mostly, like a journal. :)
January 10th, 2010 at 3:58 AM
Tara – I loved your idea of turning this post into a bank of smart comebacks. I’ve gone through and highlighted at the beginning of each post the kind of remark that the poster is commenting about. Hopefully this will make it easier to scroll through and have a focused dialogue on a particular issue.
Here are some responses I’ve had. A lot of them boil down to saying with a smile and little question mark at the end “Cancer is scary and you are probably afraid – rightfully so! Huh?”
“You’re so young”: “I know, isn’t it scary that literally anyone can get cancer?”
“I’ll pray for you” (or any other kind of religious comment): “Oh thanks. I’m atheist, so religion really isn’t a part of my healing but if it makes you feel good to do it, that’s very nice of you to offer.” I also love Tabstar’s “Thank you for taking the time to think of me.”
“You’ll be fine” or “Or kind someone who had that cancer and they’re fine”: “That’s really great that they did so well. God, I wish I knew that I’d be fine. I guess cancer would be so much easier for patients if we knew things would turn out okay. But I guess that’s why cancer is so scary huh?”
“But you look fine.”: “I know, isn’t that the freaky thing about cancer – that someone can look so good and still have this horrible disease eating away at our body. Crazy huh?”
Stupid chat room comments Pat was talking about – I bet that family member who is posting with the bad news update would love some of your realism like “Thanks for the update. Of course we often expect that things will take a turn for the worst, but that never makes it easier when it actually happens.”
“Do the doctors know what caused it” – I have a whole new blog post I wrote about his one so hang tight for it! Oooh suspense.
Lastly, I love Lori’s comment. One reason for focusing on smart comebacks is to educate people so they don’t keep on making the same ignorant mistake. Not many people want to make a cancer patient feel badly. People do say these things because they have never gotten training on what else to say. I’m not saying it should be your mission to educate people on cancer communication - we all have enough on our plates. But when you have the desire or energy to make these conversations a subtle, easy learning moment - bam, you’ve done some good!
January 10th, 2010 at 8:25 AM
Thanks for all the comments — I have to tell you one of my “comebacks”: When a colleague at work told me that I looked so good (after two surgeries and treatment), I told him yes, “That was the good thing about cancer. You can look like you could audition for Night of the Living Dead and people will still tell you that you look good.”
January 10th, 2010 at 11:57 AM
Hot topic Kairol, a good one!
Karen, I too had thyca and share some of those risk stats for other cancers post treatment. I dont have a magic bullet for dealing with the fear. Just try and take it one day at a time. (one hour at a time if the worry is very bad. And I try to divert myself by staying busy if I can— if you have energy cleaning and re-organizing is free and takes tons of time!)
I prefer getting the info, and dealing with the info to the waiting part. The waiting is just so hard. So hang in there. I would venture to guess that most of us struggle with the waiting and the fear. Perhaps it helps to know what you are feeling is OK and also normal.
Ginny Marie- I no longer let student drs and residents treat me. I go to a Harvard teaching hospital in Boston so they are everywhere! I just decline their learning on me. I also refuse to repeat my history to the many different students/residents who come into the room. Just so you know, you are allowed to boot them out. I say somethign like: I know you are very very qualified and smart if you got this far in your career, to be at x hospital, but I have been through so much, that I prefer to be seen by dr x.
When I have had to go to the ER over the years, I only talk to the attending. I don’t mind if that means I have to wait. (nothing has been life threatening) But with the epilepsy confounding the other medical problems, I don’t want to talk to someone who’s learning and might miss something or make a mistake on me.
January 10th, 2010 at 10:42 PM
The latest stupid comment was a double-whammy I heard from a pregnant friend who asked me when my husband and I were going to have kids. I mentioned that it wasn’t in the cards for us anytime soon because of the cancer and yearly RAI treatments. Her response: “Cancer? You still have THAT? But you look fine!”. I didn’t have a snappy reply at the ready, but I was pretty proud of myself for not strangling her….
January 11th, 2010 at 11:14 PM
oh boy AJ that’s a doozy. and just goes to show you that most people can only muster comments that in some level have to do with themselves. She’s pregnant, everyone else must want to be, planning to be, can be, etc. So sorry, especially hard if being pregnant is something you’d like. Good for you for mainting your cool. not good to strangle a pregnant lady! :)
January 11th, 2010 at 11:24 PM
i love this topic…..in the same conversation my Dr told me that i had thyroid cancer he said “this is the cancer i would want” and “you have a better chance of dieing by walking outside and getting hit by a bus” (oh really mister smarty pants, i no of someone that got hit by a bus!). the second time i had RAI i was completely off my synthroid for 8 weeks… and by that time i was a bear and ready to get this treatment over with. when i went in to get blood taken the nurse goes “but your too young to be doing this” my response was ‘well i’m obviously not’ ‘how about the poor little 5yr old down the hall with lukemia’ .. but my favorite during waiting to get my RAI pill the second time my Dr. said “i want you to stay on ur non-iodine diet for another 4 days….is that gonna be ok with you?” that Dr. is lucky he is still alive today..he should thank my fiancee.
January 12th, 2010 at 11:56 PM
oh god danielle, what a drag to be told 4 more days of the low iodine diet right when you think you are done and can get a latte or a pizza or some thing tasty. My friend calls it the peaches and lettuce diet. I hate the diet. One more moment is a lot to ask, let alone 4 more days of that diet! My dr tells me that a lot of people don’t mind it because they lose a few lbs. Whatever, he clearly wasn’t looking at me. I have trouble keeping weight on. (have done the diet 3 times now- just 2 more to go, I think- find out if you can do the thyrogen shot next time. many centers are using it now, if you are a candidate, it’s a life saver — I hate hate hate withdrawl. bear is a kind word….)
January 15th, 2010 at 12:34 PM
I think I’ve heard almost all of those stupid comments above, sadly. Some people are just clueless.
To the “Think Positive” comments I’ve replied “Yeahh, because that has worked soooo well for me in the past!” I guess it helps to know that I was dx with an indolent form on NHL in 3/2007, did treatment but no remission and stage 4, then had one of the 7 tumors transform into an aggressive form of NHL, stage 4 also, so that means 2 kinds of cancer at once! all in a little more than 2 years. I am in remission now, but it was definately NOT due to positive thinking, because I did no such thing haha. So when people start spewing the “Think Positive” lecture in my direction, I’m quick to point out that it hasn’t helped me before, and that I wasn’t thinking negatively when I got diagnosed with it lol.
Tabstar~ I picked up a book, not sure if I’m allowed to say where from, I hope so, at Hallmark, called A Mothers Legacy. I know the title might sound sad, but for my own sanity, I needed to write to my daughters, but didnt know where to start. This book was FULL of great questions and places to write answers, and of course they have it for men too. Didnt know if you were interested in that, but I filled most of mine out, and plan to keep going back and doing what I can as long as I can. I figure even if I live to be 100, those are still answers they’ll wanna know!!
February 4th, 2010 at 12:43 AM
Thank you Kairol for writing such a fantastic blog! I found it through your NYT article about brain fog and memory loss post-treatment. After seven years, three surgeries and, this month, my third round of radioiodine, I think the same thing has happened (is happening?) to me as well.
Seven years ago I was diagnosed with thyroid cancer at 21 during my senior of college. My surgery scars really stand out because my skin keloids which is such a boring explanation for when a drunk guy slides up to you at the bar and yells “what the hell happened to your neck??”
For awhile I followed my dad’s advice and with a sideways look said “well you should see the other guy.” For sober, more normal-mannered people I just say “surgery.”
As an atheist I too feel frustrated when the religious sympathies come pouring in but my dad never armed me with any snappy comebacks for those situations. Even if he had, I don’t want to make anyone feel bad. People are naturally curious and worried and only want to say the right thing, they just don’t know what it is. This is especially true for young patients and survivors (“oh my Andrea, well just so you know I’ve been praying that God doesn’t give you breast cancer too.”). Simply responding, “thank you, that means a lot to me” is good.
March 7th, 2010 at 3:24 PM
Hello,
I would like to start off by saying that I’m so glad I found this post! While I don’t have/am not recovering from cancer, I do have a chronic illness (which is how I happened upon this in the first place!), and one of my “stupid people comments” is evident of that…When people say “Well, at least it doesn’t do any damage”. I’m sorry, but just because my bones and joints won’t change on an x-ray, doesn’t mean there isn’t damage! My WHOLE LIFE is damaged! I won’t go into the boring details, and I’m sure it’s nothing compared to what you all have to endure, but at the same time, there is not one part of my life - physical, mental, emotional, financial, marital, familial, anything - that hasn’t been affected. I honestly don’t know what to say to these people!! Usually, it’s “Oh, yeah, uh-huh” but inside I’m just fuming! I want to say, “At least you can take your kids to the zoo” or “I would LOVE to be able to walk around the mall for hours today, but sorry - I CAN’T!”. I could go on and on :)
The other, that I haven’t seen mentioned, is when you LOOK fine, but have to use the stupid handicap parking (which I HATE by the way!). The dirty looks AND nasty comments from people really don’t help me feel any better! And I don’t use it all the time, only when I’m having a really bad day. (My 16 y/o son thinks I’m crazy for not using it all the time…if he only knew what it’s like and what all it represents!). But anyway, so far I just try to ignore them, but I would really like to be able to say something intelligent and yet not sarcastic or (b*$%y!). I don’t know. Maybe keeping my mouth shut is the best thing for me to, in those situations. I’d probably ended up beating somebody with my walking stick :P
March 22nd, 2010 at 11:04 PM
My Hubby has a very aggressive form of Prostate Cancer, very bad prognosis etc.
We spent a week in LA, just to get some sunshine and because it would cheer him up…upon our return, his doc looked at him closely and stated that his ‘colour’ was better. Then, he stared at me and asked where we’d been….so I said LA.
His response?
‘While I was here with the flu, you were in LA!’
On the way out, my Hubby said, he’d rather have stayed home with the flu and let the doc go to LA with the cancer.
Gawd, I wish he’d said it to the doctor!!
They just don’t think, do they??
**************************************
Ever since his diagnosis, people have been telling me, ‘oh prostate cancer isn’t a big deal, he’ll probably die of something else before it gets to him’!!!!
How dare they?? His staging is just awful, he’s a 9 out of 10 on the aggression scale and it’s metastasized via the lymph system, so basically…all over his body!
On the day of his op, his doc suggested that he might get 1 1/2 or 2 years tops!
That was 15 months ago…..
All I felt I could do was to point out that ‘yes, if it’s not aggressive….but…’.
Nobody heard me, was I alone in the forest when the tree fell…..probably.
********************************
As for the goof balls who think we’re all too young, I’ve always pointed out that infants can unfortunately, die from these illnesses, not an age-related issue.
Best of luck dealing with the dumb bells out there…..may they never feel the way we do some days.
Please use your handicapped sign, it’s the only benefit of being incapacitated….to heck with them! lol
March 22nd, 2010 at 11:10 PM
To LD (and others),
It is great getting continual comments on this post because we can all learn from each others’ come backs and certainly feel validated that we are not alone. But it is also heartbreaking to hear about the painful doses of stupidity dished out to you of you and your loved ones. I’m so sorry that we have all had to walk through the mine fields of other people’s ignorance.
Lots of love,
Kairol
June 30th, 2010 at 7:05 PM
[...] I don’t fit this category, but my man does,) dealing with cancer, and especially like this post. I wish I had seen it before my encounter with the ”I wouldn’t want to be you” [...]
July 5th, 2010 at 7:37 AM
I was recently diagnosed with thyroid cancer, and I’ve heard the “that’s the easy cancer” statements on occasion. My sister, who had a benign nodule removed, dismissed thyroid surgery as no big deal. I don’t think she took into consideration the extent of the procedure I’ll be having. She meant well, but her words hurt.
I don’t mind some religious remarks since I’m religious myself, but I see God as a spiritual figure, not a doctor. Someone saying “I’ll keep you in my prayers” is good, and it’s best to leave it at that.
I am happy that I don’t have an aggressive cancer, but treatment is going to be a beast and dealing with your hormone levels for the rest of your life is the hardest part.
July 10th, 2010 at 9:13 PM
When I first started chemo treatments at the age of 29, the doctor’s nurse kept saying “oh, how old are you, you’re so YOUNG!”, which made me feel even worse. Finally, after three or four sessions of this, I responded, “yeah, I know. Too young to be dealing with cancer”. She’s stopped saying it now. I also hate “wow, you look so much better than the last time I saw you!”….which is what they said the last time they saw me. Ugh, I must have looked grotesque the time before that, lol!
July 17th, 2010 at 8:00 PM
The one that always drove me crazy was so many people assuming that cancer means breast cancer. I have had numerous experiences where, as soon as I say the word “cancer”, people say “..breast?” in a hushed tone and their eyes drop to my boobular region.
When I say no, many people are shocked. Actually shocked! It has literally never crossed some people’s minds that women get other types of cancer.
Like others said, comments about prayer, positive thinking and “But you look so good/ooh you’re so strong” drove me nuts too.
July 27th, 2010 at 9:00 PM
This subject is really interesting to me….. It’s my son who has leukemia and as his mom, blog writer and advocate (after his wife), I have had my fair share of ‘clue-less comments’. Only a few months after his diagnosis someone asked me why I am still worried…. ‘his treatment is working - it will all be ok. Dont make this cancer yours!, It was as if they lit a fuse deep inside my soul. Fortunately I was on the phone and said goodbye really quickly without letting them know just how much that hurt.
Soon afterwards, I realized that the only reason that she could say something like that was because she was not dealing with cancer in one of her kids. And seeing as I would rather keep it that way, it made me grateful. So now I try to be happy, thankful and mark it up as a life victory every time someone says something that does not fit into what I need at that time….. Thats one less person dealing with cancer! Maybe a true situation of “Ignorance is Bliss”?
It does not always work though - and it was good reading all these comments - thanks! And thanks for your perspective - this is an always-learning process.
July 28th, 2010 at 12:14 PM
Annie, The comment you quoted might win the prize for the most stupid and offensive comment I have ever heard.
You are far more understanding than I am. I don’t think I can adopt the stance you are taking. I don’t believe that people have to share an affliction to be able to relate to each other and provide appropriate support. I think empathy is all about trying to stand in someone else’s shoes even though you are not there. I think if this woman tried to imagine what you were going through, she might be able to really feel a sliver of what it is like to have a kid with cancer, even though it isn’t her reality.
I think compassion is born from people trying to feel an ounce of each others’ pain. I don’t blame her for not wanting to, or for it freaking her out too much. But I do think we all have a choice to make about how much we are will to try on for size what anyone else in the world is going through - and not just limited to cancer.
Still, I think you have dealt with it beautifully by trying on for size what it must be like to NOT have a kid with cancer. Oh, I hope someday that is your reality too. Hang in there. I’m wishing all the best for your family.
Kairol
July 29th, 2010 at 9:30 AM
Kairol and Annie,
Thank you both for sharing some of the most influential advice I’ve heard (seen!) in a long time. Annie, you are so full of compassion and Kairol so full of great insight! Sometimes it just takes seeing things in black and white (or grey and beige!) to make something really sink in. Thanks for that.
And I wish everyone here at least one day without a stupid comment!
Take care,
Angie
October 24th, 2010 at 9:21 AM
I understand the whole “good cancer” thing driving people nuts because I hear that all the time too - follicular thyroid cancer hopefully still in remission - tests soon. And I admit, I’m one of the people who aggravates the crap out of people because I feel God is the reason I can handle things … and the one I can lean on when I can’t BUT forcing religion on people isn’t what Christianity is about .. nor should it be so on behalf of the overly enthusiatic who have come across as pushy or insulting, I apologize.
Anyhooo … while this is nothing compared to what some of y’all have been through, it’s still wrong as all get out and ticks me off
something awful. The most offensive comment I ever heard was from a collection agency when I was paying medical bills and couldn’t afford the whole payment on a credit card.
When I explained what I was going through and how the medical was overwhelming he said “Well, you should of thought about getting cancer before you racked up your credit card.” Excuse me? Did you just say that? Yep … he most certainly did. My response to the “nice man only doing his job” was : “Yeah, I could of racked up a credit card and got in over my head going on a fabulous vacation to Europe, but I thought .. no … why don’t I get cancer instead?”
I was in such a state of shock and didn’t discover Dave Ramsey until recently, so I didn’t think to tape it. But if it ever happens to you, please tape record the conversation and nail ‘em on the Fair Credit Reporting Act … something I wish I would of done.
November 24th, 2010 at 11:52 AM
I try not to get into discussions with my friends or family regarding my cancer, when asked how I’m doing I have found that simply saying “Good Thanks! with a smile ” usually ends the conversation politely! While out with a friend one day, I foolishly started talking to my friend about my cancer (my treatments had ended over a year ago at the time), my friend very boldly stated “Are you not over that yet? I know many people who have gone through what you’ve gone through and there doing fine” ~ I could have just died then and there! The conversation ended and I no longer discuss my cancer with anyone, I keep it to myself. My friends and family just don’t understand and as a result I feel very alone most times.
November 24th, 2010 at 12:19 PM
Kris - Thanks for your comment. I can certainly understand why you would feel alone given the comments you have received! In most of my interviews with young adult cancer patients for my book Everything Changes, they said that life after treatment was the most challenging part of the entire cancer experience.
Friends and family often think of the end of treatment as a finish line that you cross and then it is done. But once we are done with treatment, it often affords us more time and distance to look back on all that has gone on and feel feelings we didn’t have the opportunity to acknowledge while in the thick of it. Plus, wondering about recurrence and paying off medical bills is no picnic either. Keep coming back here or anywhere else where people understand what you are going through and can help you feel less alone!
All my best,
Kairol
December 9th, 2010 at 12:33 PM
How’s your cancer today? (stage IV breast cancer, metastasized)
That’s what my Aunt’s brother asked her one day. She responded with; “Well, it’s killing me more everyday but it hasn’t got to my brain yet!” Which shut him up pretty quick! Don’t ask, if you really don’t want to know…
So, it got to be a little inside joke between us and we’d always ask each other ‘how’s your cancer today?’ =) It eventually did reach her brain and she died a little over a month ago.
One of the last things I said to her was ‘how’s your cancer today?’ which despite fading in and out of delirium she seemed to think it was enormously stupid and funny.
January 13th, 2011 at 5:27 AM
I naively agreed to allow a group of young med students interview me in my hospital room. I was bald, hooked up to a pump, bloated, in medical isolation - the works. And I was asked (with straight faces) ‘Has your illness impacted your lifestyle?’ - and my other favorite ‘Are you on any medication?’. They were reading from a clip board but there’s really no excuse. My husband ushered them out of the room quickly after that.
And I also had to answer the same standard questions every time I got re-admitted (frequently) despite my massive file for all to read - and was asked about my religious preferences (I’m an atheist) in front of my rather religious mother. Not sure what shocked her more - my cancer or my atheism.
January 25th, 2011 at 10:07 PM
Oh, and here’s one from just the other day. I was with my BF visiting his parents along with their friends at an RV campground. Older folks to be sure. Anyhoo, one of them came up to me and says “You’re hair grew back so nice but it is so, so, short. Almost too short. I don’t think that style would work on me.” I told her that hey with a little chemotherapy she, too, could also have the very same style. Stupid should hurt.
January 26th, 2011 at 1:09 AM
Jendrey - You need a big mirror to bounce that person’s stupid right back at’em! Your response was pretty perfect. Way to go.
January 31st, 2011 at 7:53 PM
[...] This post was mentioned on Twitter by Elly, Felicia Fibro. Felicia Fibro said: Love this lady's attitude to responding to "stupid" comments about health conditions: http://ow.ly/3NIkQ #spoonie #health [...]
December 6th, 2015 at 10:28 AM
Hello, I am 37 and was diagnosed with bilateral breast cancer at 36, just 2 weeks before my 37th birthday. It’s a month since my diagnosis, and it has been test after test, scan after scan, needle after needle, and stupid comment after stupid comment. I’m really struggling with how to deal/cope with the insensitivities of close friends and relatives. I’m really shocked by the stupidity. Do people just get dumb and dumber when someone gets sick? What is wrong with these people? I’m also questioning myself for having surrounded myself with such nimrods. Why is it so hard for someone to just say “Thinking of you”? Are people that limited? Do they have low emotional IQs? I don’t want to waste too much energy teaching them how to be human. I have a very long road ahead of me and am trying to conserve me energy. But how do I just not get annoyed? Should I lower my expectations? Should I cut ties with some people I’ve known for the majority of my life? Thank you for any advice or suggestions!