Yesterday I went for my quarterly check up and I had a conversation with the phlebotomist at the hospital while she was drawing my blood. I've come to know her a bit since she usually draws my blood. She's a bit tough, has that "suck it up" attitude. She's always been nice but I get how it is in a major cancer center where they see so many sick people and many of them don't come back for long and here I am almost two years out walking in without a mask or anything like that, so I get it. Anyway she's a bit callous and my wife always says I should bring her a job application from the DMV and tell her "in case things don't work out for you here". lol
So anyway we're talking for a few minutes and she starts telling me about this movie she saw over the weekend with her husband about a young football player who was this great athlete in college and was on his way to the NFL or something and in the movie he started having nose bleeds and she said she told her husband "i bet you he has leukemia" she said her husband told her she was crazy and thinks everyone has leukemia because of where she works. She then told me in the movie the guy goes for a physical and is diagnosed with leukemia. Then she says "I told him, I knew he had leukemia and I was right - he was 23 years old and then he died"!
I was like WTF? Are you serious? Are you really telling a leukemia patient that you saw a movie about someone with leukemia who died? I mean I live in reality, I know how serious this is, but really? While I'm getting my blood drawn on my way to see the oncologist you tell me this uplifting story about a young man with leukemia who dies! Fortunately I have a pretty good sense of humor about things and I actually found the situation more humorous than offensive. Of course I have the luxury of doing pretty well so far and it doesn't appear I'm looking at dying anytime in the near future, so I guess it is easier for me to take it in and perhaps in a way she knows this and that is why she felt it was ok to say it to me. I shutter to think if the woman with AML who was sitting down after me had to hear the same story.
So it got me thinking of all the things people say that they shouldn't. I thought I would start putting together some guidelines - hopefully some of you will chime in and add to my list.
1) Do not tell people with leukemia about someone you know of who had leukemia and died. This goes for first hand knowledge, something from a movie or the paper and especially not a cousin of a friend who knew a guy....
2) Do not tell people with leukemia "they can cure that now". Again a sister-in-law's second cousin's co-worker is not a good reference.
3) Don't tell people with leukemia "but you don't look sick". As much as it's nice to know that we don't look as bad on the outside as we may feel on the inside, it kind of minimizes what we are going through.
3a) If the person with leukemia does look sick, you probably shouldn't tell them that either.
4) Don't tell people with leukemia (this one goes for CML) "you're lucky, there's a pill for that". Unless you are taking the pill, shush...
5) Don't tell people with leukemia "you just need to stay positive". The only response to this statement should be "I am positive I have leukemia".
6) Don't tell people with leukemia they should start taking vitamins, herbs, coffee enemas, eating organic foods etc. We know eating healthy is important but we also know there are a lot of things we can't take. No vitamin is going to cure leukemia and the implication, whether you meant it or not, is that if we had done these things to begin with, we wouldn't have gotten leukemia in the first place.
7) Don't tell people with leukemia to "suck it up". If you do, expect to get a modified response of "you suck it".
8) Don't tell people with leukemia "what doesn't kill us makes us stronger". I should be able to lift a car over my head at this point, the fact is I am getting weaker, so please spare me the cliche'.
9) Don't tell people with leukemia "it is what it is". Thanks for the deep philosophical thoughts, I know you think you're being deep, but you're just being dismissive.
10) Don't tell people with leukemia (this one is for CML) "so it's pretty much like diabetes, you just take your medicine and you're fine". Wow, you managed to marginalize not just one but two very serious diseases.
11) Don't tell people with leukemia "it could be worse". Once again aside from being incredibly dismissive, it makes us think about what could be coming around the corner.
12) Don't tell people with leukemia "we all have to die sometime". Really? Tell you what, you go first and let me know how it goes.
I know there are many more out there, but I'm done for now, please feel free to add on your favorites.
Lucky, thats awesome! I love your list of responses and couldn't help but find some humor in the responses we can give back after being told things such as "you just need to be positive".... Or the whole "what doesn't kill you makes you stronger"... We should all be super human by now! Anyway I have come to realize that some people just really don't get it and I really believe they are "wired" wrong from the get go. Common sense and common courtesy sure goes a long way... I just wished more people out there had it and knew how to be more compassionate when it comes to opening their mouth. I'll have to take some time later to add a few on! In the meantime... take care and have a good day!
That was great!!! I have one more. Don't tell someone who has Leukemia that the United States doesn't cure cancer because they want to control the population.
Someone said this to me at the elevator right after they told me to eat baking soda to cure my Leukemia. I have never wanted to slap a person more. The kicker is, I hardly even know the person.
Awesome post Lucky, and although the humorous innuendos are there, the seriousness of your post is also. People are so callous, I have heard many of these comments myself, and the others people I have been talking with who have CML or other leukemia's have heard the others (and more) I am positive. When in doubt, people should take the low road and talk about the weather. These comments you listed remind me of one my dad told my brothers long ago. 'Do not ever ask a woman when she is due, there is a chance she is not pregnant.' If you decided to take this route, be prepared to have the wrath of the devil bestowed upon you as soon as your mouth closes from your statement. I personally love the 'How are you doing, I mean, you don't look that bad so you must be doing ok.' People and his/her mouth run amok and when this happens I would just like to run the other way. Well either that or ask them why they look like crap and they don't have leukemia. Thanks for the post, enjoyed by me and a host of others I bet as the days go on.
Hi Thanks for the laughs. I have always kept this one in the back of my mind and year's later I can laugh about it.
I was about to have a pick line put in because they were treating me for AML and I was getting ready to start 30 straight days of chemo(I really had CML) but thats another story. I am on the table lying down, the RADIOLOGIST who is putting my pick line in says"if you're going to have cancer, Leukemia is a good one to have. I looked at him and asked if he graduated from SEARS CHARM SCHOOL...
The second one was months after my transplant I was in the grocery store and an aquaintance I knew came up to me and told me how good I looked for someone who has cancer. I laugh about it now, but I just wanted to sock him in the face. Felt like pulling up my shirt and flashing him and exposing this foot long hickman port.
Thanks again and maybe we should send these list to DAVID LETTERMAN'S TOP 10. SUSAN M
I think some of the awkward comments come from people feeling like they they should say "something", but they don't know what to say. My favorite response came from a neighbor in the course of a neighborly conversation in which I revealed that I had CML. He paused for a moment, got real serious, and then said, "Mike, I hate to break this to you, but none of us are getting out of this thing (life) alive." It may seem odd, but I truly appreciated that perspective. He then shared that he had colon cancer. I think I'd rather have CML.
Thank you Lucky, I needed a good chuckle today. I had a meeting with my managers this afternoon and I won't go into everything that was said, but I left the meeting with the impression that 1year is a magical number and I should be able to function as well as I did pre-diagnosis. They would also like for me to start studying for a test for my job, I didn't bother to tell them that my brain is so foggy I can't remember what I did yesterday most of the time. So passing some silly test is probably not going to happen. And making the 45 minute drive home was no picnic. My right arm was hurting, so I had to steer with my left hand. Good thing my left hand didn't cramp up! I know I look normal, but I sure don't feel that way.
Your post reminds me of what I have said about my son. He looks 'normal' (what is that anyway, never really understood that word) but he is not. Throughout the years, in battles with the school, his father, and even his step-father I have used that analogy. My son looks normal, but he has autism, if he were in a wheelchair, he would receive special consideration just because would be a visual, even if it had nothing to do with his disorder. Our diagnosis is much like this, we may look healthy on the outside, and some do better than others, but just because we do not have visual effects does not mean we are not affected or compromised with the leukemia. I am glad you made it home ok, and I am sorry the uninformed at your work expect you to be the same you were a year ago, if they only realized in reality, you will never be 'that' person again, but it doesn't mean your work ethic has changed or you are trying to use your diagnosis for special consideration. Sometimes, people are very uninformed, aren't they?
As usual you wrote the perfect post. I love how you have a way with words. Everything you said was so true. When I was dx almost 5 years ago I was immediately put on Gleevac. A month later I went for a checkup with my Oncs Assistant The G made me really sick. Which I had already told her. While she was examining me she told me how lucky I was, and they call Gleevac the Magic Bullet! One month after dx I did not feel very lucky. I felt terrified. I really wanted to tell her what she could do with her Magic Bullet. lots o luv Billie
Hi, I have not been on the discussion boards in a long time. I have missed the humor, the trials, tribulations, information and friends. Lucky's 'things you don't say' were spot on! I retired from full time work last June and every time I see someone from there who knew I had CML says "well, you look great." Uh huh. but my insides tell me different. This August will be 4 years since dx and I still see my oncologist every three months. Last May our house was struck by a tornado and it took months to get it back together. We were not injured and miraculously we did not have damage to furniture - just to roof, walls, floors and the outside of the house. Well, my house "looks great" but we are still finding cracks in the walls! CML has permanently cracked my health. This is a good day, because so far I have remembered everything I need to know! That doesn't happen all the time. Over all I am managing the side effects of Gleevec and for what I can't manage - I take a pill.
I have a "bloody brother" (not CML) in my church and we keep a check on each other. Yep, he looks great, too. We both hate the diseases, but the remarks people make are just intolerable.
Thanks for your list, Lucky. It made my day.
Glad to hear your voice again! I agree, it is all about them. That is what is so disappointing. Anyway, I was told the same thing just after I was dx (how good I look). And the whole family had just seen me the previous week!!!! Guess I must have looked horrible before I was dx to look so good in a week after dx. Lately, the shaved head thing in support of "cancer fighters" gets to me. What's the point? I view it as a slam in a way. They can choose to lose their hair. Cancer patients going through that kind of chemo cannot.
I had a former co-worker say to me... after learning I was receiving SSD... "wow, I wish I could stay home and get paid for it!" Well then... you can have all the perks that go with it too... including CML! I would have gladly switched places with them in an instant. I miss working but I have other things that help make up for it. I get to spend a great deal of time with my 2 boys... I'll always have that and the memories I get along with it!
RE: "I had a former co-worker say to me... after learning I was receiving SSD... "wow, I wish I could stay home and get paid for it!"
My MOTHER said, after learning that I was having to declare bankruptcy due to the inability to work enough to pay my bills, said "Wow, I wish I could just get rid of debt like that."
Yeah, she's real sensitive. Has called me exactly twice in the year and a half since I was diagnosed, and complains to others that I don't want to talk to her.
And my brother? When very first diagnosed wanted to know if he could get this, and when I told him that it was statistically virtually impossible, but that he might be a donor if I needed it, never said another word to me.
That's why my wonderful Virtual Friends are so vital (that's you guys). Lucky, thanks for the fabulous post!
she sounds like a narcissist who wants it to be about them, when really it should be all about YOU. My grandmother did the same thing. I was 19 at dx and she faked having car trouble for a whole month while i was hospitalized so that she didn't have to spend the money on gas. So we don't speak, and she doesn't get why. I'm seriously starting to suspect dementia! Some people misplace their worry, and they worry about themselves instead of who they should actually be worrying about ... US!
By your sister - "Oh so it can be managed by a pill that's good - did I tell you about Michael (my brother in law who both smokes and drinks heavily) he needs to take more than one tablet a day for his blood pressure
Don't you just love family
P.S. forgot to add - Sister " I can't do a compatibility match in case you end up needing a transplant as I don't like needles" nuff said
Susan. .. my sincere apologies. I should have thought through more carefully what I said. It seems that I've read so many posts from people who don't have support, and that makes me feel badly for people who have a rough time getting support from families. I did not meant to offend anyone, and will delete the post.
No harm, no foul as they say. Reread some of the post, they really are mean to give us a good laugh during these incredulious times of confusion, uncertainty, pain, suffering and any other adjective we can find. Laughter REALLY is the BEST MEDICINE...No Worries though, o.k. Just reread them and maybe you'll see them in a different light. Susan ps. Wish you well.
Oh crap!! Where's my Inbox? They changed things and I haven't done much posting since the change. I was feeling so technologically goddess-like today after the lights in my classroom went out, and the projector quit working. AFter the lights came back on the projector was still dead. . .so much for my Smartboard lesson. BUT. . .after a bunch of fiddling, button pushing, climbing on table tops and wiggling wires, I got the projector to work, BUT everything on the screen was upside down!! ARRGHHHH!! BUT. . .after standing on my head so I could read the directions on the screen and after 20 minutes of pushing many buttons on the remote to see if I could find any sort of options for "upside down", I was able to get everything rightside up (for future reference, look for "screen settings<ceiling mount"). The only thing I forgot to do was set the projector on "high altitude." (Yes, they really need to be set for the mile-high city. . .who knew!!).
That said, if someone can direct me to my inbox, I'll clean it out, as per request. Unfortunately Pam, I will have to continue grading papers. Took an annual leave day tomorrow because I'm plumb tuckered out and doggy paddling just as fast as I can to stay on top of the workload. . .and will spend the entire day building smartboard lessons. What a stupid way to spend an annual leave day. 8 days 'til spring break and counting (but at least the kids are excited about reciprocals. . yippee!! They haven't been this engaged in math all year!).
You should have left the projection upside down, it would have added interest to the lesson and you could have taken some really awesome photos of your students hanging upside down for the yearbook. I love the smart board, but I was having fun, you have to earn your living with it. Enjoy your day off and don't work the entire time, I think it should begin with coffee or tea and a healthy dump of Baily's, work into wine for lunch, a top shelf margarita for dinner, then finish off the day with a nice sangria for a bedtime snack. (Note: All of these beverages work well with smartboard lessons) just sayin'
I always wondered what was in my teacher's coffee... Anyway, after teaching at public school for 9 years, I think teachers all could use a little relaxation in their java (and not the tushie kind). Anyway, our Smartboard NEVER worked right. It was donated to us by some business. I think schools are the only ones using them (because most are free). It was a very frustrating tool to use. If it worked it would be great!
All the best,
loved the comment, 'I always wondered what was in my teacher's coffee.' Sometimes, not knowing and allowing the imagination to run away is more fun than the reality. It was probably filled with over strong coffee, loaded with sugar for quick energy, and a touch of non fat creme for health reasons. I like the Bailey's idea much better, and just in celebration of this conversation (and St Pats Day), I believe tomorrow morn that is how I am going to start the day. We are installing a patio door where I oversized picture window is now living, I think after a few mugs of coffee I may be up to the challenge.
Well done! I couldn't have said it better. It should be published! All 1-12 have been floating in my head since dx. As a victim of #1, #4 and #12, I salute you. Although I generally love people, I am now never surprised at how insensitive people can be. Love the one about "You go first and let me know how it goes!" LOL
Great list Lucky! And for more reading entertainment try this link
The kids with cancer section has a huge listing of things that get said to them on a regular basis
I still remember being told my daughter had the "good leukemia" when she was first diagnosed. And also being told by a "friend" that I probably caused it by feeding her too much MacDonald's Happy Meals "those things are all junk and chemicals-you know that is what probably caused it"......like I didn't have enough guilt already.
Today is a lovely day, so we will be out riding our horses, while we wait for PCR results from the heme-onc, and for an email from Purdue to find out if she was accepted to Summer Vet Camp.
Phil, in response to your post:
O.k. in spite of sounding like a moron. . .when I was diagnosed, MY cat had had feline leukemia for many years. I felt like an idiot, but decided that I was going to ask the onc all of my questions, even if they were stupid. So I asked him if there was any corrolation, thinking that we might have to have the cat put down to prevent husband from contracting the disease. My onc was able to keep a straight face as he answered my question with something like "there is no evidence that the disease can cross the human-animal barrier." Phew!! The cat remained with us until a few months ago when we had him put down after a horrific seizure. He was 20 years old (let's see. . .that's over 100 in cat years), and while crotchety and quirky for many years, had become quite a loving (though still quirky) old boy.
You must have read one of my past posts. My cousin actually said something like this to me. Very, very similar. I just brushed it off and then she hit me with an underhanded compliment about my "long" legs. If you are insensitive on one level, it is usually an across the board thing.
Phil, That was a good one. I don’t have a cat, but usually vets give cat a shot for Leukemia, I ‘m not sure how it is different for a cat then a person.
But hard to believe a person would say that.
maybe we should call this. The darndest things people say to leukemia patients.
Sorry, Pam, but that's not accurate. Once a cat has feline leuk, there is nothing they can do. Like us, the cat simply lives with the leukemia. The worst part (for me) was that once our first cat died (he didn't have the leuk) we couldn't get a kitten because we still had the cat with the feline leukemia. It is VERY transferrable from shared litter boxes and food/water bowls. Now that the cat WITH the leuk is passed on, I CAN GET A NEW KITTEN!! Yippee!!!!
I hope my husband doesn't consider the same about me
A certain someone (who should be my biggest supporter, hint, hint) is fond of going on a rant about how stupid people can be and it usually starts with "If my doctor ever tells me I have cancer, I'm gonna...<insert tirade here; usually some sort of highly illegal behavior>"
Well, MY doctor DID tell me I have cancer, so does that mean that I can go around playing crash derby with every stupid driver I come across (for example)?
To that he usually responds: "Well, that's different. You are not going to die or anything."
No, I probably won't for a long time, but IT STILL HURTS!!!
Good list. I've heard 1, 2, 3, 3a, 4, 5, 6 from friends, and 10 (the diabetes analogy) from my oncologist. The analogy upset me a tiny bit, but the others didn't. I was putting people in an uncomfortable position telling them about my leukemia, and understandably, they said some things that they might not have said had they given it some deep thought. Seeing how uncomfortable people seem to get when being told makes me reluctant to tell anybody else. The folks who said these things were close friends, and were just trying to be helpful. I don't fault them for it. Some of these towards the end of the list however, like 7, 9, and 12, would result in me tearing them a new one.
When I went for my blood draw three weeks ago I had the same phlebotomist. After she was done drawing my blood, I stood up to walk out and I said "I'll see you in three months" she responded "god willing". I stood there looking at her for a second and said "Seriously?". She just looked up and said "oh, no I meant me, not you". I could tell she was so lying. I wanted to say to her "why's that? do you have leukemia too?" But I didn't feel like getting into it. Some people just can't be fixed. I actually find it funnier than offensive, but man, how dense do you have to be?
Ouch - folks mean well though (in general). I wrapped up a happy hour tonight with a client (who is not [and doesn't need to be] aware of my CML), and one of the folks was like, "Hey Dan, you are so thin. Are you okay?" He was so genuine and thoughtful with his question, and I know that my thin frame is partially attributed to initial anxiety from the diagnosis (and perhaps some metabolism changes from the TKI), but I just found it to be an interesting question, especially given that I'm perfectly healthy aside from the fact that I have to take a TKI to live. I just smiled and reminded him of my latest 10K running pace. <wink> I do go in for ankle surgery next month (running injury, ugh), so he thinks that I will put on a few pounds while I recover, LOL. Perhaps it's for the best!
Stay healthy, my friends -
Wow Lucky...this is the same phlebotomist whose nonsensical sayings were responsible for you starting this thread in the first place ? You might tell her that she is famous in some circles, but not in a good way. Oh perhaps you could ask the hospital if you could conduct an in-service training on CML so that their employees would be better able to deal with their patients and not appear so dense. I am glad that you were amused....Janne
I have cll, been dealing with this for 11 years now, so I've heard so many crazy comments, your list is among many things I've heard through the years.
I'm part of a group who puts together a 'cancer survivor dinner' (nice sit down dinner a week before the AMC Relay for Life event in our county). We put together last year a 'Top Ten Things Not to Say to a Cancer Patient' and did it in the David Letterman format. Cracked folks up. (84 survivors in attendance--we asked them to raise their hands if they'd heard the comments before--almost every one raised their hand on all 10 comments.) And some of the spouses/caregivers there said later 'Gosh, I've said those things, and you'd think I would know better!'
Some of the weird stuff I've heard not on your list:
'At least you have 'The Good Cancer'! This from other cancer patients. What!! My comment is 'The only 'Good' cancer, if there is such a thing is a 'cured cancer'.
Because there is no cure at this time, I've had treatment 3 times now. I was told by several people I needed to 'get a new doctor because he obviously doesn't know what he's doing if he can't fix me after all this time.' My comment 'Well I'm still here after all these years so he's doing something right as far as I'm concerned!'
In 2008 when my treatment protocol caused me to lose about 1/2 of my hair (I was told I would have heavy thinning) . Because I had such a thick head of hair to start it wasn't quite as noticable to those who didn't know me well. One lady told me I needed to talk to my oncologist & get a different chemo because if I didn't lose all my hair it mean the chemo wasn't working! My comment--humor of course 'Well I've got a lot of grey hair, and they are old & tired and felt the effort it takes to fall out of my head was just too much so the dark hairs took the journey and the grey hairs stayed home!'
When my cheeks were flushed from all the steroids that were part of my protocol I was told I sure did look healthy with my glowing cheeks. So I must be feeling really good. (This was following a week of being so sick I didn't even get out of bed for 3 days). (My comment, 'It's the steroids, sweetie, they do wonders for the body--they puff up the wrinkles and make us look younger" (I'm now 65, so this works well for me)
Funny thing, however, after being a caregiver for two friends and being in the trenches, I heard many comments that made my toes curl. Then I thought 'Gosh, I've said that before'' So when some of the comments were made to me I thought, well I know they mean well, I've been guilty of that.
We do have to take into account 'who said it', and do we know them well enough to try to educate them about how what they just said could be taken as offensive by a cancer patient. But humor is important.
Last one that is usually said in a good way: 'If you need anything just call me' in an off-handed way. Yeah, Right! Most cancer patients won't call for help.....and lots of folks know that. I tell people now when they ask 'What can we do to help (someone just dx'd)?'
Thanks for posting this, it's always good to laugh at some of the things that can be frustrating to use at times.
Based on markers I have, information I read gave me 5 years. I'm now 11 years living with cll/sll.
You fight with all you have and try (and that is all you can do is try) not to think about the 'time line'. That's based on many cases, and to come up with the 'average' some have much longer time.
Just remember something someone told me when I was first dx'd. There are lies, there are damned lies, and then there are statistics.