The stupid things people say

[MattFoley]

Oh Matt, Matt, Matt....I would pay money to see the responses of people after a comment like that - absolutely priceless and absolutely original - I love it! I'm still laughing!

There is plenty more where that came from. http://christmascolonoscopy.com/?p=221

[jmarie]

Diane's post reminded me of my first run in with stupid things people say.

3 days after my diagnosis I had an ultrasound on my liver. I was 6 mos pregnant and couldn't get a PET scan. I was told I had a 4 cm lesion on my liver, that it was most likely a met and they needed to do a biopsy. So they wheeled me down to pathology do get the biopsy done. I am put in a room with 5 or 6 patients and left in a wheel chair, not even a pillow to sit on. They ignored my IV beeping for too long and my vein collapsed. Two stupid nurses tried to force saline in until I screamed. This was the last vein available in both arms. After sitting here for an hour and a half, I am in tears, pain was about a 8. I was on bed rest and strict pelvic rest, was not even supposed to be laying on my back let alone sitting up and had been listening to the two nurses complain about their jobs. One of them has the nerve to come ask "So, whats you story?", Through my tears all I could say was "none of your business" she gave me a dirty look and strutted off to look at my file. As her face went pale looking at my file my GI's nurse practioner came to check on me, thinking I had already had the biopsy and should be back in my room. In front of all the patients and other staff she started yelling at them to get me in a bed, asking if they had even bothered to see my file, that they could have risked my baby's life, asking how they could let my IV go bad. I was biopsied with in 15 min. At first one of those nurses came in to the room to help with the biopsy, I asked the patholigist to get her out. He just gave her a nasty look and she left. He said he just found out how long I had been sitting and apologised profusely.

It took about 12 hrs to get the pain back under control with Dilaudid. I also had to get a PICC line which was a total pain in the butt and eventually infected and caused my baby to be born earlier than we had hoped.

I can't believe people like this could get and keep jobs in health care. Its one thing for some random person who doesn't have a clue to ask stupid questions, but for trained profesionals to be so idiotic is unbelievable.

Sorry this was a downer, it was awesome seeing the nurse practioner going off on them. Also my L&D nurse said she called in an official complaint on them.

Matt's post was much funnier

[NWgirl]

OMG Matt - I've added your blog to my favorites list - I'm going to go through and read more later - but that list....all I can say is Dave Barry - watch out. Anyone who needs a laugh, you definitely have to check out Matt's blog.

[Guest]

My most hated:

'You're young, you've got a much better chance of surviving' - and I had a much better chance of never getting cancer in the first place but I've still got it! Besides which, I haven't read a single study that has found that age contributes to your chances of survival! (well, not unless you're REALLY old, like over 80...)

'x% of people survive this, no reason why you can't be one of them!' - yep, and I bet that's what every single person diagnosed with this tells themself right up until they die!

'Nobody will even be able to tell you've got one [bag] unless you tell them' - do you routinely walk up to fat people and point out that they are obese?? What about people missing limbs, do you make a point of stating the obvious to them too? People are pretty observant, especially if they see you regularly (and use the same bathroom!) - it's just that there is such a thing as a social norm that prevents all but the most loud mouthed, insensitive souls (oh, and little kids who don't know any better yet) from pointing out other people's faults.

'You can go back to eating exactly what you ate before' - sure....I used to eat loads of grapes in one sitting no problem - sure can't now!

'You can wear exactly the same clothes as before' - with the exclusion of bikinis, crop tops, anything tight, lycra, skinny jeans...there goes most of my wardrobe

'You can use some cocoa butter to help minimise the scar'...somehow if there was ever any chance that anyone was actually gonna see me without clothes on again, I very much doubt they're gonna be looking at my scar!!

[Gaelen]

Guest, I agree with all of the ones you've posted except this one:

My most hated: ...
'Nobody will even be able to tell you've got one [bag] unless you tell them' - do you routinely walk up to fat people and point out that they are obese?? What about people missing limbs, do you make a point of stating the obvious to them too? People are pretty observant, especially if they see you regularly (and use the same bathroom!) - it's just that there is such a thing as a social norm that prevents all but the most loud mouthed, insensitive souls (oh, and little kids who don't know any better yet) from pointing out other people's faults.

Actually, in my experience this particular bit has been true. I work with 150 people and I share the communal bathrooms and locker rooms with the 90 women in the crew. I am far more conscious of my colostomy than the world around me...and believe me, among the people I work with, no topic is too sacred to joke about. But it still surprises me the number of my co-workers who don't realize that I have had an ostomy for the last 4+ years. One of our more famously 'loud-mouthed and insensitive' guys needed an emergency ileostomy for diverticulitis and wasn't handling it well. A co-worker in his lab who is a close friend asked me if I could give him some support - and I was blown away to discover that C. didn't realize *I* had an ostomy.

I travel with a group of women to dog shows and with a group of co-workers on business. They know because I tell them when we share a hotel room or motorhome. In the beginning I used to ask this group if they noticed any issues - the universal answer was that they didn't notice anything. This isn't a group that will white-lie to spare my feelings, and after awhile I just stopped asking, secure in the knowledge that they'll let me know if there's something amiss or offensive.

Most of my CHEMO nurses (and I've had many) and a couple of my docs who hadn't fully read my five-volume chart didn't realize that I had an ostomy until they needed to access my HAI pump or do an abdominal exam.

So, this particular comment -- that nobody will know you have an ostomy until you tell them -- doesn't really fit with the rest of the remarks we've listed here. It's hard to believe when you first hear it, but at least unlike the other comments, it has proven in my experience to be true.

[mpeters6]

So today I saw someone I hadn't seen in 11 years. I've birthed 2 babies and beat cancer since then (and she is fully aware of this). She has the nerve to tell me I look tired. I said "No, actually I'm not a bit tired" and then I walked away. What a stupid thing to say to someone you haven't seen in 11 years.

[carrieann]

I went to my daughter's first grade parent teacher conference, it was after surgery but before chemo-when I could finally say the word cancer out loud and not cry, to let her know what was going on and see if she could keep an eye on my daughter. She proceeded to tell me that her husband had died of colon cancer and how hard the treatments had been on him and in the end they told him there was nothing they could do for him "but that was 5 years ago and I am sure treatments had improved". I could see how much pain she was in and knew she wasn't telling me this to scare me but because it was all still very fresh in her mind. So far I had managed not to cry for her and myself but then she told me she had told my daughter's class that her husband had died of colon cancer and I went from sadness to anger. My daughter is a very sensitive soul who now equates cancer with death-I feel she took that decision of how to tell my daughter about my cancer away from me. Anyway, we don't talk about cancer with the kids because of that; they ask and I tell them Mommy has a sickness that makes her go to the bathroom a lot (LOL) and the medicine is going to make me better(we got to think positive ). My 4 year old calls it the 5FU pump the med. that makes mommy sick, tired and grumpy!

I know she did not mean to scare me or my daughter but I still feel it wasn't her place to tell 7 year olds about cancer or death. Sometimes it is those that have the best intensions that say the stupidest things.

[Terry]

O.K. anyone that's been on here for a while knows I'm one to say "think positive" and it's not going to stop. I was surprised as I looked at some of the posts by newbies at how many others say it on here also. Someone on this post said something about saying it but not believing it makes any differenece, or something like that (chemo brain). If thinking positive makes you feel better your immune system will be higher and so it would help. Stress effects your immune system and so does being happy.

I don't really care what anyone says to me frankly. They'd have to say something pretty inappropriate for me to get mad and then I might say something back but otherwise most people have good intentions or just don't know what to say.

Since we're on this thread what do you think people should say? Is there really anything good enough? I'm sorry you have cancer...me to. You look good. The thing I don't like about that is that because you look good they assume you look good and we all know that's not the case.

I hope this doesn't sound bitchy because it's not meant that way. Really:)

[Gaelen]

Here's the thing - and it's been repeated several times in this thread - 'people are just searching for something to say.'

The problem is that people are trying to fill the awkward moment with something that makes THEM comfortable. Their effort to get comfortable in the awkward moment is not necessarily (or in fact, usually) something that's going to make the cancer patient comfortable. But the person talking doesn't see it that way, though - some brain short-circuit has convinced most people that speaking to fill the silence is the way to get past an awkward revelation ('I have cancer' is right up there in awkward-land...)

What more people need to do, what *I'd* like to hear, is a LOT more listening, a lot more just plain shutting-up and giving the person asked the opportunity to really answer the question if they've bothered to intrude into our space and ask it. Hannahw suggested it early in the thread:

...I often find myself wishing people would just embrace the silence. There's some saying about listen twice as much as you speak and I think when it comes to "supporting" a friend/family member with cancer or acting as caregiver, you ought practice at least that ratio. Rather than presuming to know (or guessing, or just brain barfing) what you can say that would be useful or helpful or whatever, people should try listening. The patient and/or caregiver will probably tell you exactly what they need, even if it's only indirectly.

Depending on the situation (I have been getting these comments for 5+ years) I do try to pre-empt the fill-the-silence comment by responding with my own opportunity to educate.
Tossing a question back at someone puts you in control of the direction of the conversation.
'I have rectal cancer - have you been screened?'

Is that response more direct than most people want from casual conversation? Yep.
But at least that response puts a point on a conversation that would otherwise just be taking up airspace.
If hearing 'rectal cancer' in the same sentence with 'have you been screened?' stops them in their tracks and makes them think before they open their mouths again...well, then I'm using my life to work some good and I'm gonna have a good day.

[azahar]

Thanks for that, whatnext. I enjoyed your list so much that I think I'll swipe it for my blog, if you don't mind.

Nothing wrong with a little humourous education ...

Interesting that so many people dislike the "You look so good!" one - that's one that really bugs me too.

As for "Is there anything I can do?" my answer has always been - "Yes please! Send money! Send DVDs!" - which often doesn't seem to go over very well. But I'd rather have a donation towards my rent than a bouquet of flowers, you know what I mean? And DVDs are a wonderful distraction, especially when I've been too sick to read. I've lost quite a few "friends" this past year and a half because they felt uneasy about my way of coping and especially my not needing or wanting what they felt like giving me.

I find I do get annoyed with the constant platitudes. So sue me. Frankly, the best thing to say if you don't know what to say is ... "oh dear, I don't know what to say!" To which the person with cancer can simply reply... "That's okay, you don't have to say anything". Or in my case, "That's okay, you don't have to say anything, just send money".

[jmarie]

What probably gets me the most are the ones that say "I'm so sorry", "your in my prayers", "I wish there was something I could do" or such things but you can see in there face or hear in their voice that they don't care. They feel obligated to say something. If someone says something awkward or stupid, but I get the feeling that they are genuinely concerned it won't upset me.

Terry- I agree with your positive thinking. I don't think I would still be here with out the positve energy I get from my baby girl. When she was still in the NICU or the one time when she stayed at my SIL's house, I would find myself always thinking the worst, soon I would be in more pain, having more symptoms. It was depressing with out her here, and it affected my physically. I feel better, get more accomplished, take less pain meds and have fewer lower GI issues when she is here. I honestly believe she will help me live longer.

[hannahw]

Depending on the situation (I have been getting these comments for 5+ years) I do try to pre-empt the fill-the-silence comment by responding with my own opportunity to educate.
Tossing a question back at someone puts you in control of the direction of the conversation.
'I have rectal cancer - have you been screened?'

This is pretty much exactly what my Dad does. His willingness to be direct and raise awareness has led to at least three colonoscopies for friends. Initially, I had moments where I was like "oh.my.god. Dad! Really?! Do you seriously need to talk to people about this?" I felt like I was about 12, the time of life when you're pretty sure your parents are the most embarrassing people on earth. But eventually I realized it was my issue, not his. And no one he talks to seems bothered at all. Maybe a little surprised at first, but otherwise, totally interested. And thanks to my Dad I've become a lot more comfortable talking about it too. It's empowering. There's a lot about cancer we can't control (including the stupid things people say) and yet we can control our role in education and awareness. It feels really good if someone learns something from our experience.

[jmarie]

Yesterday I could have strangled my MIL. She has issues and refuses to go to a doc and the rest of us have to put up w/ her nonsense. I got stuck w/ her alone for 30 min(serious torture)

MIL "what the drs say?"
Me "You heard about my last PET right?'
MIL"Ya so what the drs say?"
ME "They just said my PET scan results"
MIL "So what the doctors say?"
ME I repeat my PET scan results
MIL "I know that, so what the drs say?"
ME, about to go nuts "What do you mean, I told you what they said"
MIL "Well more chemo?"
ME "yes"
MIL"so thats good, right?"
ME "um no, chemo is not good"

[sbstantial]

I HAVE HEARD THAT STATEMENT "gee you look so good" AT LEAST A DOZEN TIMES IN THE LAST FEW WEEKS.

I AM ONE WHO GOES AND SEES PEOPLE AND OPENS UP AND INFORMS THEM THAT I HAVE HAD 3 PRIMARY CANCERS AND I ALSO LET THEM KNOW WHAT HELL CHEMO WAS FOR ME AND THAT I AM GREATFUL FOR BEING ALIVE. THEY ALL RESPOND THAT GOD HAS WORK FOR ME AND I AM NOT GOING ANYWHERE TOO SOON.

I DO THANK THEM FOR THEIR KIND WORDS BUT I AM A REALISTIC PERSON AND KNOW THE ODDS TOO WELL.

AS FAR AS STUPID, IDIOTIC REMARKS FROM YOUNG MEDICAL STUDENTS AND NURSES I HAVE HEARD THEM ALL, WHEN THEY SHOW THEIR IGNORANCE AND LACK OF EXPERIENCE, I POINT OUT THEIR SHORTCOMINGS TO THEM. THEY WALK AWAY WITH THEIR TAIL BETWEEN THEIR LEGS. NO WAY WILL I ACCEPT LESS THAN SUPERIOR TREATMENT FROM THE VETERANS GROUP AND SO I AM PROBABLY KNOWN AS THE YANKEE BYTCH, BUT WHO CARES, NO MALPRACTICE ON MY BODY......

LOVE YA ALL,

GLORIA

[karin]

My best friend, who is about 1 1/2 weeks post-op from cytoreductive surgery w/HIPEC, hates it when every person she comes into contact with says "how are you feeling?', so now she just says "like sh*t!!"....sounds crass, yes, but at this point.....well, be careful what you ask.....right? When people ask me how she is doing, I respond "Chemo is difficult, and/or surgery was painful, and/or being in the hospital means she is seriously ill and means being away from family, friends and work, so it is life-altering, even for short periods of time". It may sound harsh, but it is the truth.

I really agree with answering honestly when someone asks if there is anything you need or they can do: "yes, send money!!!!"..... It doesn't hurt to educate, about what CRC does to the person financially, I mean, set up an account for donations and carry around little notes with the bank name and account # and ask them to make a deposit, put the info on your facebook or myspace page, and send out a mass email....she had an account set up for her by her friends and so far it is working well....I mean, at first, friends just showed up with expensive gifts, or, services that would require a routine investment of money and/or time, etc., really nice all in all but, finally, we just asked for donations....a month of housecleaning services, for instance, or a pizza delivered once a week, would better serve her as a cash donation to pay toward her rent or to buy groceries!!! This is very important for some, in her case, she has been blessed that her employer has "carried" her, literally, kept her on the payroll (as a very part-time employee), so that she could maintain her health insurance, and her son's pre-K private school is being donated....but, she still has to keep a roof over their heads and buy food, and, until she gets much stronger physically she needs help.....and, as the saying goes "that's what friends are for" !!