Cancer Etiquette Revisited - my rant for the day!
http://thechart.blogs.cnn.com/2010/10/15/breast-cancer-etiquette/
Last weekend, at an 80th birthday party for an old cowboy buddy, I saw a girlfriend I hadn't seen in several years. She, however, had apparently been following my recent history pretty closely. As so succintly described by Amanda above; her face crumpled into a look of deep sorrow, her eyebrows knit together over a pair of puppy-dog eyes, and she whined..."How are youuuuu? I heard you were very very sick...” in a soap opera voice. I pleasantly told her I was fine now, thank you, and headed for a seat on the other side of the room.
And now, the real reason for my rant. My rather high-strung and self-absorbed younger sister telephoned early this morning, to question me minutely as to whether I thought she might have cancer... my kind of cancer. Her glands have been swollen for the last couple of weeks, and her throat hurts when she swallows. Never mind that she has very recently completed a course of antibiotics for a sinus infection brought on by a severe cold. She wanted a blow by blow of the timing of appearance and intensity of all my symptoms. And then she described everything she was experiencing, and asked if I thought it might possibly be the same thing... I was as polite as I could manage, and suggested that if her concerns weren't adequately addressed by her current doctors, she might consider consulting with an ENT. Arrrrgggggghhhhh.
So go ahead. If you've got bad etiquette stories, share them here. We'll all feel better.
Or, at least I'll feel better, knowing I'm not alone.
Deb
Comments
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Heading off bad etiquette
The strategy I used to head off bad etiquette was to set up a blog and be totally open and current with my cancer dx and rx--with a large helping of humor. I think that most bad etiquette comes from ignorance, fear, and a lack of knowledge about the specific cancer one has--so what we can do is put as much as we can out in the open and let others go from there. People tend to group all cancer patients together and fear the worst when they hear someone they know has cancer. They also dance around THE question, "Are you going to die from this?" And, in your case, Deb, your sister fears the genetic links to cancer, thinking that she must be next!
One of the realities I've learned about cancer is that we patients must be take the lead to manage and control what goes on around us (even if we don't want to), to avoid a melt-down by people who mean well and love us, but don't know how to cope with OUR cancer. I did that by answering any and all questions as honestly as I could, and using my blog to make sure that everyone who cared enough to read it had the most current and accurate information possible. That strategy has worked well for me.
Mike0 -
Deb...you are a such good writer....
I read the description of the soap opera star questioning your current health status, and cracked up. Someone like that would make me want to sit them down and give them so many gory details, even if I had to make them up...that they'd wish they'd never said anything in the first place...(you can tell they've learned some kind of lesson, when you see them scanning all the escape routes)...:)
I haven't had to deal with any bad etiquette yet, since so far only those closest to me know I have cancer...I saw the concern, and yes... fear.... in my co-workers faces...afterall, cancer is a VERY scary word for many folks...and I do think they were looking at me wondering if I was going to die, and wondering how I was doing with that possibility. I just stopped them at the pass, and told them that what I have is very survivable...without going into detail about anything else.
I truly think that the majority of people simply don't know how to act, or what is ok to ask...and it's my job to help them get comfortable. At least right now, that's how I feel...mostly because the people I might tell, I know care about me...they just don't know how to "be" with it......yet.
p0 -
You Know It....
I can totally relate, as many here can Deb...
I'm rather like Mike, I started a group email list of friends, family and faith. I'd keep everyone posted of my status and progress and upcoming procedures and milestones... I'm very open and it worked well for me.
I'd usually head off any conversations that were heading in the wrong direction and avoid those people that tend to be negative in life.
Some of the storys that I have heard on here are unreal....
Especially the lady that was told God was punishing her for her past.....pure ignorance.
Best to you and all,
John0 -
It can get pretty uglySkiffin16 said:You Know It....
I can totally relate, as many here can Deb...
I'm rather like Mike, I started a group email list of friends, family and faith. I'd keep everyone posted of my status and progress and upcoming procedures and milestones... I'm very open and it worked well for me.
I'd usually head off any conversations that were heading in the wrong direction and avoid those people that tend to be negative in life.
Some of the storys that I have heard on here are unreal....
Especially the lady that was told God was punishing her for her past.....pure ignorance.
Best to you and all,
John
Back in 1998 when I had my first cancer I was participating in an internet board, a little like this. My exwife somehow found the board and figured out who I was. She registered as a user and made sure everyone understood how richly I deserved to get my cancer. It was then I decided I needed to survive:) Sometimes people say things because they are ignorant. Sometimes the motive is just plain meanness of spirit.
Pat0 -
Oh dear,... Patlongtermsurvivor said:It can get pretty ugly
Back in 1998 when I had my first cancer I was participating in an internet board, a little like this. My exwife somehow found the board and figured out who I was. She registered as a user and made sure everyone understood how richly I deserved to get my cancer. It was then I decided I needed to survive:) Sometimes people say things because they are ignorant. Sometimes the motive is just plain meanness of spirit.
Pat
Now that one goes waaaaaay beyond bad etiquette. That is evil. I'm hoping that the Board people drove away that troll.
Deb0 -
" My dog has what you have" " I heard you got this___"D Lewis said:Oh dear,... Pat
Now that one goes waaaaaay beyond bad etiquette. That is evil. I'm hoping that the Board people drove away that troll.
Deb
1) So my friends dog gets this cyst on his snout and my friend says, I don't know if you want Abby (my dog) to play with mine because I think my dog has what you had? I'm like what would that be? He said HPV! I was so pissed off at first. I asked if he had taken his dog to the vet and the cheap **** said no; so I said how do you know it's doggy hpv. I didn't even bother trying to explain the difference!!!
2) I saw this guy I use to work for when I was younger right after treatment ended. The first thing out of his mouth is "I heard you got cancer; I heard you got it from eating _______" (insert female anatomy slang word) Needless to say I was pretty upset!!!! 0 -
geeeeeeeeeeeeezzzzzzzzzIrishgypsie said:" My dog has what you have" " I heard you got this___"
1) So my friends dog gets this cyst on his snout and my friend says, I don't know if you want Abby (my dog) to play with mine because I think my dog has what you had? I'm like what would that be? He said HPV! I was so pissed off at first. I asked if he had taken his dog to the vet and the cheap **** said no; so I said how do you know it's doggy hpv. I didn't even bother trying to explain the difference!!!
2) I saw this guy I use to work for when I was younger right after treatment ended. The first thing out of his mouth is "I heard you got cancer; I heard you got it from eating _______" (insert female anatomy slang word) Needless to say I was pretty upset!!!!
Deb, I think Irishgypsie wins the no etiquette category with item #2. OMG, what would you even say to that ?0 -
Hey Deb
I have a buddy that said he had what I had. Cancer. I said "you had H&N cancer"? He said no I had my thyroid removed, it was cancerous. Now I'm thinking, did you get rads?, NO, did you get Chemo? NO. Said he had to take a pill every day though.
So as I have said in past rants, I scoff at lesser cancers. How can you go into the hospital and have a gland removed and compare yourself to the crap that we have all gone through, our new normal, with no saliva, no taste, no appetite, teeth falling out, etc and say you've experienced what I have.......No you haven't.
I felt like it minimalized what I went and am going through. I still can't eat a meal without a quart of liquid. I hear bells ringing in my ears all the time! So instead of telling him, he is my friend after all, that he is full of it, I simply say "yeh, it sucks right?"
So my rant is not for lack of etiquette, it is for the lack of total awareness and understanding of what it is like to have H&N cancer. We should have a pamphlet made we can hand out that shows what it is really like. Some cancers are worse than others, period. Some are worse than ours, but we have to be in the top10 I think
Oh well, I somewhat strayed from etiquette, but sometimes I want to scream....
Good post Deb. All the best my 2 year post treatment friend...
Steve0 -
I had a lovely conversation with my ignorant sister.
I had a lovely conversation with my ignorant sister. My daughter has been having health problems, she is only 17. They are pretty debilitating and I called my sister for support and to let her know what was happening with my daughter and myself (my cancer). She said really forcefully at one point in the conversation "There is something always wrong with you guys!" I said, "I had cancer, I couldn't really help it." Actually neither can my daughter. No apology just alot of garbled bs. I really can't stand her.0 -
What a pig!Irishgypsie said:" My dog has what you have" " I heard you got this___"
1) So my friends dog gets this cyst on his snout and my friend says, I don't know if you want Abby (my dog) to play with mine because I think my dog has what you had? I'm like what would that be? He said HPV! I was so pissed off at first. I asked if he had taken his dog to the vet and the cheap **** said no; so I said how do you know it's doggy hpv. I didn't even bother trying to explain the difference!!!
2) I saw this guy I use to work for when I was younger right after treatment ended. The first thing out of his mouth is "I heard you got cancer; I heard you got it from eating _______" (insert female anatomy slang word) Needless to say I was pretty upset!!!!
You should have smacked his a**!0 -
at least you can pick your friendskingcole42005 said:I had a lovely conversation with my ignorant sister.
I had a lovely conversation with my ignorant sister. My daughter has been having health problems, she is only 17. They are pretty debilitating and I called my sister for support and to let her know what was happening with my daughter and myself (my cancer). She said really forcefully at one point in the conversation "There is something always wrong with you guys!" I said, "I had cancer, I couldn't really help it." Actually neither can my daughter. No apology just alot of garbled bs. I really can't stand her.
unfortunately you cant pick your family.
Pat0 -
Sure wish I could though! One more thing I thought of!longtermsurvivor said:at least you can pick your friends
unfortunately you cant pick your family.
Pat
Sure wish I could though! One more thing I thought of! My father was in a nursing home. He was fine, well as fine as someone with COPD that continues to smoke like a chimney could be. I guess he wasn't getting enough sympathy from the nurses because he's a demanding jerk so he tells them a complete lie about me and my cancer. I walked in to talk to the nurse, she looked surprised and said to me "Your father told me that you had cancer, were dying, and hospice was taking care of you." I was pissed and said, "does it look like I'm dying?" When confronting my psycho father and asking him about it he totally denied it but my money is on the nurse.0 -
Ex wifelongtermsurvivor said:It can get pretty ugly
Back in 1998 when I had my first cancer I was participating in an internet board, a little like this. My exwife somehow found the board and figured out who I was. She registered as a user and made sure everyone understood how richly I deserved to get my cancer. It was then I decided I needed to survive:) Sometimes people say things because they are ignorant. Sometimes the motive is just plain meanness of spirit.
Pat
I would have had a blsts with that one. Tell her that after our marriage I'm surprised I don't have anal cancer cause she surely did rub mine the wrong way.
Denny0 -
Yep
I've had some strange conversations with well-intentioned folks but a lot of people with strange little symptoms that think I might have some insight into anything medical other than H&N cancer. I just tell them all "oh yeah, that's probably cancer. You definitely need to get that checked out. Ask you doc for a PET scan for sure." The look of horror on their face is priceless as they squeak out a "really?". Then I say "no, it's probably nothing, I was just messing with you." If they laugh it's all good and the awkwardness is done. If they don't then I'm not going any further in the conversation anyway and the awkwardness is done also. Works great!
AB0 -
I'm With You, Hawkhawk711 said:Hey Deb
I have a buddy that said he had what I had. Cancer. I said "you had H&N cancer"? He said no I had my thyroid removed, it was cancerous. Now I'm thinking, did you get rads?, NO, did you get Chemo? NO. Said he had to take a pill every day though.
So as I have said in past rants, I scoff at lesser cancers. How can you go into the hospital and have a gland removed and compare yourself to the crap that we have all gone through, our new normal, with no saliva, no taste, no appetite, teeth falling out, etc and say you've experienced what I have.......No you haven't.
I felt like it minimalized what I went and am going through. I still can't eat a meal without a quart of liquid. I hear bells ringing in my ears all the time! So instead of telling him, he is my friend after all, that he is full of it, I simply say "yeh, it sucks right?"
So my rant is not for lack of etiquette, it is for the lack of total awareness and understanding of what it is like to have H&N cancer. We should have a pamphlet made we can hand out that shows what it is really like. Some cancers are worse than others, period. Some are worse than ours, but we have to be in the top10 I think
Oh well, I somewhat strayed from etiquette, but sometimes I want to scream....
Good post Deb. All the best my 2 year post treatment friend...
Steve
While I was OFF WORK during cancer treatment, I was reminded (more than once) that my uncle "went to work almost every day while he had his first cancer treatment". My bad. I lost my job during treatment, and told those close to me that "It's just as well - I really can't keep it up". My uncle, bless him, had what he called "mild treatment" and outpatient surgery on the couple of spots on his leg. And I should feel useless because I didn't feel able to go out and get a new job while I was finishing induction chemo and starting chemorads? Ah well.
On the other hand, I had someone commit what I would have considered a horrible breach of etiquette a few weeks ago. I was at work, seated behind a counter, looking up some info on our computer system for a visitor. The man was leaning toward me, and said "Wow - looks like you've had some major surgery". Years ago, I would have been mortified that the man had not only noticed my scar, but had the gall to comment on it. Now, it didn't bother me in the least, and I was kind of relieved that he said something - then he didn't have to pretend to not see it.0 -
Hey, kingcolekingcole42005 said:I had a lovely conversation with my ignorant sister.
I had a lovely conversation with my ignorant sister. My daughter has been having health problems, she is only 17. They are pretty debilitating and I called my sister for support and to let her know what was happening with my daughter and myself (my cancer). She said really forcefully at one point in the conversation "There is something always wrong with you guys!" I said, "I had cancer, I couldn't really help it." Actually neither can my daughter. No apology just alot of garbled bs. I really can't stand her.
Great picture! Your sis is a hoot! Easy for me to say - I'll never have to deal with her. Can't believe you actually called to talk about serious issues you needed support with, instead of just chatting about "Survivor" episodes or something. Maybe she'd have been more sympathetic if you said you missed a really good shoe sale because of stupid cancer radiation appointment.0 -
Hah!adventurebob said:Yep
I've had some strange conversations with well-intentioned folks but a lot of people with strange little symptoms that think I might have some insight into anything medical other than H&N cancer. I just tell them all "oh yeah, that's probably cancer. You definitely need to get that checked out. Ask you doc for a PET scan for sure." The look of horror on their face is priceless as they squeak out a "really?". Then I say "no, it's probably nothing, I was just messing with you." If they laugh it's all good and the awkwardness is done. If they don't then I'm not going any further in the conversation anyway and the awkwardness is done also. Works great!
AB
I'm digging your "diagnoses".0 -
LOL!kingcole42005 said:Sure wish I could though! One more thing I thought of!
Sure wish I could though! One more thing I thought of! My father was in a nursing home. He was fine, well as fine as someone with COPD that continues to smoke like a chimney could be. I guess he wasn't getting enough sympathy from the nurses because he's a demanding jerk so he tells them a complete lie about me and my cancer. I walked in to talk to the nurse, she looked surprised and said to me "Your father told me that you had cancer, were dying, and hospice was taking care of you." I was pissed and said, "does it look like I'm dying?" When confronting my psycho father and asking him about it he totally denied it but my money is on the nurse.
KC, I would have told the nurse, yeah the hospice van just dropped me off, thought i'd see who was going to die first the old coot or me, get me a wheel chair willya?
Heh...just stay positive
Bill0 -
HPV positive SCC of base of tongueIrishgypsie said:" My dog has what you have" " I heard you got this___"
1) So my friends dog gets this cyst on his snout and my friend says, I don't know if you want Abby (my dog) to play with mine because I think my dog has what you had? I'm like what would that be? He said HPV! I was so pissed off at first. I asked if he had taken his dog to the vet and the cheap **** said no; so I said how do you know it's doggy hpv. I didn't even bother trying to explain the difference!!!
2) I saw this guy I use to work for when I was younger right after treatment ended. The first thing out of his mouth is "I heard you got cancer; I heard you got it from eating _______" (insert female anatomy slang word) Needless to say I was pretty upset!!!!
I really need to ask this question....I can't find the answer anywhere...My husband will start Rx for the above diagnosis on Monday 4/23. Is it necessary or recommended that we make some adjustments to the way we make love? I had a negative HPV digene...it's a type of PAP test but for HPV 16/18. My gynocologist isn't aware of any studies done post Rx with regard to this issue. It seems like such an important question but no one addresses it.0 -
Start a new topic...nedsky39 said:HPV positive SCC of base of tongue
I really need to ask this question....I can't find the answer anywhere...My husband will start Rx for the above diagnosis on Monday 4/23. Is it necessary or recommended that we make some adjustments to the way we make love? I had a negative HPV digene...it's a type of PAP test but for HPV 16/18. My gynocologist isn't aware of any studies done post Rx with regard to this issue. It seems like such an important question but no one addresses it.
Your question is buried in this thread, it's better to post it as a new topic so everyone can see it.
Anyway, it's likely you were infected by your husband at some point in your relationship, and if you are HPV negative, your immune system likely cleared it naturally like what most people do.
You could ask your doctor about getting the HPV vaccine. And if you want to be really cautious, practice safe sex although I don't think that's necessary.
I'm not sure what you mean by "studies done post Rx".0
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