52 replies to this topic

[Lodie]

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!!!

[0vercast]

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.

[CallMeLucky]

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?

[LivingWellWithCML]

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 -

[janne]

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

[SarahtOKLA]

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!

Sarah

[cllgal]

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.

[jagladysk8]

this one is for plasma cell leukemia- the prognosis is not good for PCL usually 6 months to 24. Really I don't need to hear that, I plan on fighting this with every thing in me.

[cllgal]

jagladysk8

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.

[PhilB]

Lots of fun seeing this list come back up again.  I'm just worried that the next time I meet someone with a serious disease I won't be able to resist coming out with one of them!  Or maybe I'll try  "Oh, I'm so sorry" pause "Can I have your parking space?"

[jrsboo]

Yes, I have suspicions that she has borderline personality disorder.  Very strong suspicions.  Like.....I am SURE she has borderline personality disorder.  Oh well.  I married extremely well and he loves me more than I could have ever hoped for. 

--Caroline

[ritan/]

my personal favorite is: You have the good kind of cancer. what the hell is that?

[Badger]

That would be the kind that can't be treated by simply popping a pill. I was sure as heck praying that I had cml and was in the chronic stage before I was diagnosed.