Did you give your friends/family cancer "rules"?

barbe1958

Interesting. I gave no boundaries on telling and everyone around me knew, but I didn't get any extra attention. You may be surprised how discreet and tactful people are with such news.

Anonymous

Not the case with me.  I got extra unwelcome comments, such as "you look great" and "you're so strong, and you're such a survivor".  NO I AM NOT and don't consider myself a survivor.  I just did what I had to do and pray that we keep this beast at bay. I mean what choice do we really have?  How about the people that tell you all about their relative or friend that died recently of BC?  It's too bad but some are not tactful and I've chosen to limit my discussions with them. 

Shawna77

Absolutely love this.  Made me feel so much better to read that I'm not crazy lol.  I did tell one of my close friends that he could tell anyone "I don't hate".   I live in a small town, so I knew it was just a matter of time before everyone knew.  One of the worst things was having to tell people, so I just let him spread the word lol.  My hair should be gone shortly, and if I start getting insensitive comments I think I'll use those moments to let out any pent up anger I have.  Really, people should know better than to make ignorant comments on your appearance...whether you have cancer or not.  Jeez!  Love the tiger analogy!!

auntienance

Thank you so much for posting this list.  It is nearly perfect as is the tiger analogy.  I too live in a small town, which happens to have many cancer survivors.  I welcomed the support, so the only rule I made for friends telling others was not to post it on Facebook!

 Nancy 

k8sonny

Hello -- I have had cancer 3 times in my life: Hodgkins Lymphoma at 19, malignant melanoma at 45, and BC at 46.  I understand your list, and I also understand that friends and relatives often have NO idea what to say or do, and accidentally blunder.  When they say "You are strong" or "You look great," they are just trying to help and be supportive -- even if it's not what you feel like hearing.  One aha moment for me came when I finally realized that even though it's MY cancer, it affects others as well.  People like our parents and friends have to contemplate what life might be like without us.  No excuse for the my-friend-had-cancer stories, especially those that don't have happy endings, but I honesty try harder now than I did before to have sympathy for the poor person who doesn't know what to do or say but wants to help somehow.  Even as a 3x survivor, I don't always say or do the right thing for other sufferers as well, even if my heart is in the right place. 

exbrnxgrl

One thing I have found endlessly fascinating about bc, and perhaps other cancers, is not only how different we are when it comes to disease and treatment but how different we are with how we handle it. I haven't made rules but I don't hesitate to tell people if I think they have crossed a line. Most people are very caring and don't intentionally mean to upset you , they're just tactless and are probably tactless in many situations. I don't like being told that I'm strong , but point out that no one knows how they would react if faced with the same thing. Many folks would be surprised at how strong they would be too. Although I did it in phases, I have told almost everyone in my life about my bc and put no restrictions on who they told. I asked those who have heard the truth about my condition from me to correct those (and there haven't been any so far) who may be spreading misinformation or speculating on things that are still unknown. Lastly, someone posted earlier about the "stigma of cancer". I agree that it can exist but I feel that my being completely open about it may help to lessen the stigma (my school district has been amazing!). I also welcome the opportunity to educate people about bc. Is it my job to do so? No, but I am comfortable in the position and I really am a teacher Is cancer a gift? No! But I will do all I can to find the lessons to be learned from it regardless of how painful and unwelcome they are. This is just who I am and how I deal with it. It is not one way or the right way, it is just my way. Caryn

mdg

It makes me feel good that you have validated my thinking on the "rules"......

apple

i love your mom's response.. good luck.

puce

I agree with the bald head and beer belly quote! 

The only reason I wear my wig is because I do not want to deal with other people's reactions.  Some are tactful and discreet, some cry, some have no reaction.  I don't have enough energy to deal with their reactions.  I wish I was strong enough to go wothout my wig everywhere and not be affraid I will meet someone I know and have to explain or get the "look", especially around my kids.  Now, everyone is used to my new "haircut".  I feel beautiful bald but I do feel the pressure from society to look a certain way.  You don't want to go to a wedding bald and take attention from the bride (my 5yr old daughter was a flower girl last weekend).  I wish I could take a walk around my neiborhood or to the bus stop in the morning without it too.

I don't want everyone to know because it makes me feel vulnerable and not in control.  I had to tell my husband to stop telling everyone I'm having a double mastectomy with reconstruction.  I said would you like it if I told everyone doctors were going to cut your penis off!!! These are my private parts!!!

I have a co-worker that told everyone at work.  I love her to death but am pretty pissed about it.  Now I feel like people will look at me differently when I come back.  Maybe I am just too self-counscious.

exbrnxgrl

I am so sorry that your co-worker violated your privacy. I hope you let her know how pissed you are! Another teacher at my school had a bmx at the start of summer and wanted to keep it private from staff and parents (completely the opposite of my decision). I have 100% respect for her choice because it's important to honor each person's choice. About a week after I told the staff, she decided to tell them as well but still does not want parents to know. We each have to do what is best for us and respect each others decisions. Caryn

Rain555

I thought I was the only grinch when I told my family that we're not having a support website, we're not having dinners dropped off (my son was sad about that) and I choose not to discuss it in settings like my workplace so please respect my privacy. 

It's going well.  When our kids talk to their friends, the friends understand that they don't have to politely ask how I'm doing every time they see me.  My friend who wants to wear an wristband wears it, just doesn't identify me. Aquaintances don't have to think up some inspirational thing to say when we meet because they either don't know about the diagnosis/treatment or they know my preference.

I do owe a debt of awareness to women with breast cancer who stood up to be counted because I had an early stage diagnosis.  And I will pay that back--afterward. 

TAPPY

I agree with almost everthing you posted...except I refuse to hide my cancer.

I am sad that I have it, but I fight that saddness everyday and I will talk and tell everyone about it if they ask me.  I will tell them every gory detal if that is what they want....talking about it gets it out.  I do get a little outdone when people tell me...oh dont worry it will be fine, so and so had it 15 years ago and is going great.  (because my 2 friends who did not make it are always in the back of my mind)

I know people mean well - and I except it at that.

exbrnxgrl

Yes, that's how I feel about not hiding it. I also feel like I am honoring the memories of those who came before me and struggled publicly at a time when cancer really was a huge stigma. We have so many rights and protections because of them and the more open we are, the more we take away the stigma. I honor and respect the fact that this openness is not for everyone. It clearly is a personal choice. BTW, parents at my school set up a meal delivery schedule. I love it because my family has so much other stuff to help me with that it is nice to take the burden of shopping and cooking off of their shoulders. But again, to each his own! Caryn

Denise2730

LOVE THE LIST! When we have family get togethers I let them know in advance that I am not discussing my cancer. If I want to talk about it with my sister or friends I will but I will be the one to mention it.  My boys (24 & 26) lost their dad to cancer 13 months ago so IMO the less said about it the better. I don't want them to think I have been given a death sentence and just because their dad died from cancer doesn't mean I will also.

k8sonny

puce, I am so sorry to hear you were "outed" when you didn't want to be.  I remember with my first cancer, at 19, sitting in my room and listening to my mom prattle to her friends on the phone about my condition.  It drove around the bend.  When I asked her not to do it, she responded that this was "her way of dealing with it."  She does the same thing to this day. Sigh.  I am just careful now what I tell her, and I assume it will be broadcast on the 5, 6, and 11 o'clock news.

attypatty

First, can we change the phrase "cancer rules"? I know it means "These are my rules for cancer" but it can also mean "Cancer Rules" - as in dogs rule and cats drool....or vice versa depending on your personal preference. Cancer does NOT rule. It sucks, quite frankly. I think we ought to call The Living List - as in, this is the list of ways I will live with my cancer and the ways I want others to live with me. Or maybe the Respect Rules, as in, this is the way I want others to respect me and my (new) reality.

mdg

AttyPatty....never thought of it that way but it makes good sense.  It's funny now that I am 9 months after diagnosis I don't care so much anymore.  Time changes things but I needed my list of rules, guidelines or whatever at that time.