Need to vent

Tom1981

As my wife and I go through this process we notice one very annoying thing. Why does everyone want to talk about cancer? Why do they need to mention every person they have ever known that died from cancer? Why is it an event to tell us the new person who got cancer?

This is the lead up to the boiling point I reached tonight. My mother, in her infinite wisdom, thought it would be no big deal to give my wife's phone number to someone who my wife doesn't even know that just got diagnosed with breast cancer so she could call and talk and ask her questions. Wouldn't any logical person think that at least a call to see if this is ok would be a good idea. I found the situation to be rude and now my wife is stuck in the middle of something she would have never agreed to. She does not embrace the pink, she is not the breast cancer guru and she (like everyone else) never wanted to be in this situation to begin with, let alone talk about it constantly. Don't get me wrong, some people are the complete opposite and that's fine but some common courtesy would go a long way. The thing that really puts me over the top is that my mom has cancer herself, why doesn't she talk to her and answer her questions?

Italychick

Totally agree. After my diagnosis, people felt compelled to tell me every cancer story they knew. Finally I started asking why are you telling me this, what is the point? And people finally quit doing it. Stand your ground, and tell people to back off. Everyone's path is different, and what works for one doesn't work for another.

sbelizabeth

Oh, Tom. I'm so sorry that your wife is navigating through the social waters of cancer. You're right, some women like to talk all about it and wear pink and share everything with everyone. Not all of us do.

When I first started this fandango, I had the same experience as your wife. I believe it was out of kindness that everyone wanted to talk about it, know what I was going through, connect me to their sister who had breast cancer, ask rude questions, tell me all about their aunt who died. I learned, AS YOUR WIFE MUST LEARN, that sometimes I needed to preserve my privacy and peace of mind and change the subject, not answer the phone, or just leave--"whoa, look at the time, gotta go!" It's her choice. She shouldn't feel forced to have any conversation with anyone, and she should feel OK about looking a little indignant and saying, "You want to know about my prognosis? Why do you ask?"

"Now my wife is stuck in the middle of something she would have never agreed to." Your wife is probably very kind and hesitant to hurt anyone's feelings. She can get un-stuck by being forthright and protecting herself, and you are in a good position to empower her to do just that.

YATCOMW

I think this happens to all of us....the fact that people tell you that this person and that person died of cancer.....I can't comprehend why anyone would think that it would be appropriate to comment in that way to someone putting up the fight....but it appears to happen to most of us.

I too don't want to be the cancer girl.... I never wore the pink ribbon pins or bracelets people gave me. If I could keep it all a secret I would.

On the other hand, I know how much speaking to several people that had a big tumor and multiple nodes "saved" my sanity in the beginning of my diagnosis.....those two women helped me more than they can ever know. They gave me the hope I needed so much the first couple of years. So in my case, I do take the calls & offer to help those that need a positive voice in the wake of cancer darkness. It's one of the many reasons I come back here 13 years later. My cancer was so bad.......honestly everyone can be hopeful:) But this is a personal decision I chose and it should be up to the individual and not be forced on.... for sure.

Jacqueline

YATCOMW

I think this happens to all of us....the fact that people tell you that this person and that person died of cancer.....I can't comprehend why anyone would think that it would be appropriate to comment in that way to someone putting up the fight....but it appears to happen to most of us.

I too don't want to be the cancer girl.... I never wore the pink ribbon pins or bracelets people gave me. If I could keep it all a secret I would.

On the other hand, I know how much speaking to someone that had a big tumor and multiple nodes "saved" my sanity in the beginning of my diagnosis.....those two women helped me more than they can ever know. They gave me the hope I needed so much the first couple of years. So in my case, I do take those calls. My cancer was so bad.......honestly everyone can be hopeful:) But this is a personal decision and should be up to the individual and not be forced on for sure.

Jacqueline

Traveltext

I don't mind talking about my cancer, but I'm careful not to push this on anyone who I can sense is not interested in the topic. Like YATCOMW talking to others about my disease and treatment was a big part of my recovery. Now I feel like helping anyone who cares to ask questions or for advice. And I'm on threads where people are doing it tough, so help is much appreciated. Plus, I'm trying to educate men who have no clue they can get this disease because pink charities are failing to raise awareness of male breast cancer.

Tom1981

The biggest problem in all this shockingly is the parents. Her parents feel the need to constantly bring up people who have cancer. Her father actually had her proof read a eulogy for his friend who died from a different cancer a couple months back. Now this thing with my mother. It's not her place to just hand out my wife's phone number to strangers. I know no one means any harm and to be fair my mom is older and doesn't think before she acts. I just don't know how to pull in the reigns on the parents that think they know better than their kids anyways. It's one thing if it's me. My wife has enough on her plate that I'm trying to empty without someone coming along and giving her a second helping of crap.

7of9

Great rant! Blow off some steam by chucking (as hard as you can) those pink bracelets, other random pink shit right in the trash ( I did donate some blanket someone made me). Having cancer....makes you NOT want to have cancer. Good Lord. I almost slapped my best friend just last summer (4 years after original diagnosis) when she made some comment about vitamins.... like, you know,....people like you with cancer. People like me? You mean people like us!?! GRRRRRR

sbelizabeth

Stand up to the parents. Explain kindly but FIRMLY. She doesn't need to proof-read the eulogy just because her dad asked--"sorry, Dad, no can do, please ask someone else." To your mom, "Mom, please don't give Eulalie's cell phone number to anyone." You're adults, and it's OK to say NO to your parents. You can do it with respect and kindness.

LisaAlissa

I am so sorry that you're having to deal with this kind of thing. Comments from strangers, discussions of BC when you'd rather talk about anything else, family members who are actually adding to your emotional burden! Ugh.

Coming here to tell us about it is a great strategy. But I have a few other thoughts, depending on what you want to do. And you might have different things you want to do with various people.

So here are a few suggestions for some of the scenarios you mentioned. My suggestion is that you think through what sorts of responses you want to give so that you're not thinking "darn, I should have said______," when it happens again:

1. Family members who want you (or your wife) to support others. Certainly do if you like, but that should be your call. And it sounds as if it's not something that you want to do!

So what could you say to your parents? How about: you're not feeling up to supporting others just yet. So please don't pass along our contact information (or details about our treatment/progress) without talking with us first. There are, however, a few sources of support you can suggest, for example, "Reach to Recovery" (an American Cancer Society program) has volunteers who have been trained to talk with BC patients. (They would be better at this than we would be, since we haven't been trained, and the BC we're dealing with is only one of many different kinds of BC.) Or suggest they refer their friends to BC.org, if they're computer users. If they find someone who needs support your parents should call you to see if you have support suggestions that your parents can pass along.

Ask your parents not to share details about your healthcare with others. It's not that you're ashamed (why would you be?) but some things are private--you want to be able to share with your family without thinking that you've published information in your local newspaper!

2. People who have been referred to you for support (without your prior consent). I'm so sorry, but I/we haven't been trained to supply support to (other) BC patients, and we aren't comfortable in that role. Your BC may be very different than anything we're familiar with, so we aren't even comfortable discussing our experiences with you. May we suggest ____________________ (fill in the blank with a Reach to Recovery volunteer line, or a local Gilda's Club, or this on-line community, or whatever local resources seem best to you, for example a social worker at their cancer treatment center!).

3. People who want to talk about cancer. You don't have to engage in discussions about cancer. When asked how you are, give them the standard social response, "fine, and you?" (maybe they don't know about your cancer?) and then ask them about something else. For adults & social acquaintences, if they persist and try to initiate a discussion of your cancer, may I suggest a long stare, and then a question to them about something else--current movie, book, recent event in the news, whatever. If they keep pushing the cancer discussion, you have to up your response, perhaps something like: "Why would you think I'd want to discuss that?", together with another firm gaze. If an immediate change in topic or an apology is not forthcoming, then I'd turn and walk away. If you encounter that person again, just pretend that the entire episode never happened!

You might want to vary your responses, depending on who is asking. I managed to keep the details of my treatment very private (my family was several states away when I was in active treatment), but my sister and I did deal with a four-year period when we wore very visible back braces and received no end of questions. Often from total strangers. And children (of various ages). And friends/relatives. And social acquaintances. We varied our responses depending on who was asking.

For strangers on the street (they really did walk up to us and ask!!!!), if we were together, we'd say things like "we were born joined at the spine and had to be separated." Alone, it might be "I was born without a spine and had to have one installed!"--then keep walking! (Strangers who ask rude questions deserve whatever they get!)

For small children 3-6 or so, something kind, innocuous and age appropriate.

You'll need to establish your own categories and plan your responses...that way you won't be caught off-guard, and can simply move on.

Or come here and vent...you'll find a number of threads which are basically for venting. For example, the thread "The dumbest things people have said to you/about you" is a longstanding thread (begun in 2009!) and still usually on the active threads page--after 305 pages! Even though the original poster has deleted her posts it's still a great place to go to share the absurdity of the comments we all get!

HTH,

LisaAlissa

P.S.: When you've had it with people staying stupid stuff...there is the other side: "The most encouraging things said to you during your journey."

Denise-G

People wanting to tell you and your wife about every person they have ever known who has died from cancer will keep happening, I promise you. It still happens to me all the time, five years later. I'm the one who had to learn to change.

One of the biggest lessons of cancer is to learn to put your boundaries in place with family, friends, and acquaintances in so many ways--not just in things concerning cancer. Usually, the people that cause you the most problems have been causing problems for years. I would venture to say this isn't the first time your parents have stepped over your or your wife's boundaries.

You and your wife will have to learn how to put those boundaries in place for strangers and those closest to you. It is a huge learning process all the way through cancer and beyond into survivorship. You have to figure out what works, and that is no easy task.

LisaAlissa

Denise, you said it so much better than I did.

Thank you,

LisaAlissa

caaclark

Well, I am over 11 years out and people still do that to me.  However, I am no longer shy about telling them to stop if I don't feel comfortable.  All that being said, I am definitely the cancer "go to" person and mostly it does not bother me.  I work as a counselor in an elementary school and just this year there have been 5 moms diagnosed with cancer- 4 of them breast cancer.  Since I was diagnosed when my kids were young I am able to help them by at least being there to listen to them.

I remember people telling me about others with cancer who had died.  I think it is a way that they are trying to connect with you and give you the feeling that they understand.  I'm not saying that it's right but I think that's what goes on in some people's minds.

If you are asking for advice I will say what others have said. 

1.  Make sure you establish clear boundries.

2. When people start telling you a story, clearly tell them that you only want to hear it if it is a good ending.  If they hesitate it means it is not a good ending and you should walk away or change the subject.

3. Screen your calls or texts or emails.  I actually stopped having communications with some friends because they would unintentionally freak me out.  I didn't make a big deal about it.  I just stopped returning calls.  Sometimes my husband would answer and say I was sleeping.  Once treatment was over I picked back up with those friends.

I hope this helps!!

NancyD

Whew, you hit a sore point with me. I went through a phase where I would talk about my cancer to anyone who faced a similar diagnosis. Mind you it had to be another woman who was just diagnosed with breast cancer and wanted some information. A female friend took this to mean I would talk to ANYONE who had cancer. At a high school reunion she came over with a strange man (we had a large class and this was the 40th year reunion) and introduced me as, "This is Nancy. She just had mastectomies for breast cancer. Nancy this is [name]. He just finished treatment for [some other cancer]" and then she walked away.

I was dumb founded. All I could manage to say was, "I'm sorry." I left shortly afterwards, too embarrassed to stay. Needless to say, that woman is no longer a friend, mainly because she just couldn't see that she had done anything wrong.

I think it's fine if your wife doesn't want to talk about it. I do think your mother was wrong to give your wife's number to a stranger. That's not her place to make your wife into someone's source of info and comfort. If you haven't already done so, I would TELL her that she shouldn't have done that without first consulting your wife.

And just to be kind, I would have contact info of a cancer support group available to gently pass along to anyone else, if she doesn't get the message.