Appropriate responses to silly questions and statements

LtotheK

Hi everyone,

I've gotten some great feedback here, and I thought this would be a good one to get support on.  As all of you I'm sure have experienced, how much you tell people, when, and responding to their feedback is very complicated.

I'm becoming increasingly frustrated with people and their responses, and would love some ideas about appropriate answers and requests so that I can let go of any negative feelings.

A sampling:

"I know x # of friends who've had this, they are all fine.  This is treatable."  Actually, I haven't been staged yet, await my surgery, and am unclear if this has spread.  That is not helpful feedback.

"You are so strong and tough.  I know you will get through this."  Actually, I'm not tough at all.  I'm extremely humbled by this experience, and currently spend more time fearing for my life than any other activity.

"Let me know what I can do for you."  Instead, how about offering something tangible, and then I can say whether I need it or not?  I was even thinking about doing a list of things I need help with, and sending it out to friends to see if I can get assistance.  Is that crazy?  Inappropriate?

Finally, I don't know how direct I can be, I guess it's on a continuum.  Saying, "no, that doesn't work for me" seems more important than ever.  Yet, I am having such a hard time doing it.  A friend wanted to come and stay with us next weekend.  NO!  This doesn't work!  I'm stressed, going to a milion meetings, etc...and of course, I said okay instead of no.

crazy4carrots

MHP, I don't think I have any definitive answer to your questions, but one thing I realized, finally, with DH's help, was that during the stressful waiting, and during the active tx, I had to think of ME first.  For those who haven't gone through this (or any other kind of life-threatening illness), I think you need to impress upon them the fact that you're in a period of your life where your needs must come first.  If you have children to care for, tell your friends/relatives that they can be of enormous assistance by helping you in that area.  After all, if YOU don't take care of yourself first, you won't be much help to your children.

Most of us are taught to be unselfish and to bemore concerned about others, rather than ourselves.  Well, not this time, sweetie!

Warm hugs!   Linda

hymil

MHP, a list of what you need is not mean, it's a great idea. We're happy with wedding lists aren't we, otherwise every newlywed would end up with forty toasters and no spoons!

Also a specific wish-list will help separate those who do want to help but are not sure how, from well-wishers who just want to do that and no more.

So. Example. Tuesday 5pm, please can someone collect Johnny from football at Queens Park ground. (every Tuesday till August 4th would be even more fantastic!) Would love it if anyone could iron Fred's 5 work-shirts before Sunday evening please. Does anyone have a spare 6-man tent available for the weekend June 12/13th  Ladies, anyone could lend me your old baggy buttonthrough blouses please, any colour, size 18 or larger. Friends, would your teen love to mow my lawn (can use my ride-on machine if over 14)? etc

At least it might focus your own mind and prioritise on what NEEDS doing, what you would so love for someome else to do, what would you choose if you could PAY to get just one job off your hands and done for ever....  dream your dreams, and then ask for them! "Dear Santa..."

pickle

We have all heard the silly questions but for the most part, people are trying their best to say something to make you feel better. Most comments come from warm hearted caring people but they just don't understand because they have not been in our shoes.

Whenever I am asked to do something/ host visitors etc  and I really don't want to do it I just say "Thank you so much for thinking of me. I really appreciate it however this weekend is not ideal for me" I never liked home parties such as jewellery, tupperware etc so I have used this line many many times. It says thanks but no thanks in a positive way. It is not too late to call your friend and cancel. Honestly any true friend would certainly understand.

I think people really do want to help. A cancer diagnosis makes everyone feel somewhat helpless so when someone asks if there is anything they can do...pull out your list and assign something. It will make you and them feel better.

"You are so strong and tough.  I know you will get through this."  That's a common one! I don't know the right response because sometimes we don't feel strong, tough etc. I chose to let people believe I was always strong except for those closest to me. This board, my DH and my brother were my "go to" people for honest feelings and meltdowns. I just get real with the ones I feel comfortable being real with and for everyone else I just acknowledge in my mind that their intent is well meaning and from the heart.

I learned to filter...When I was first diagnosed everyone knew...facebook and e-mail spread the word like wildfire (not by my choice) I got e-mails from old schoolmates, long ago friendships etc and while I appreciated the well wishes I really learned to filter what info I told people.

 Unfortunately you will probably be on the receiving end of many more stupid comments...I got an e-mail from an old friend saying "lucky you...free boob job". I know lots of gals got that comment  At first I was aghast but I know she was trying to be funny and well meaning. She has always had a great sense of humor and I guess she really didn't know what else to say.

There is a thread on here dedicated to the stupid things people say and there have been some unbelievable things on there. Some comments you just have to find humor in because they are that ridiculous!

jenbal

I think the answers you've given in your post are right on, and would be completely ok to say out loud! pickle is right -- mostly when people say something stupid they're just trying to connect and express their good wishes. So most of the time when I get dumb comments, I just smile vaguely or say "thanks" and change the subject. The one exception to this is when someone says something really over the line -- it can be a teaching moment. For instance, when I told people what was going on, almost everyone came out with the story about their friend, sister's second husband's mother, neighbor, whoever who had cancer. If the story ended with "and she's just fine!" I'd say, "I'm so glad for her." Sometimes, though, the story ended with, "and she died three years later." It got so, as soon as someone said, "You know my friend had cancer . . ." and I'd stop them right there and say (lightly), "Stop right there. If the story has a good ending, that's great but pretty much irrelevant. And if it had a bad ending, I really don't need to hear it. But thanks for your good wishes." Silly is one thing; hurtful is another. And you have to protect yourself.

dlb823

MHP70 ~ I think your list idea is great!  Communicating upfront where you could use help with rides, meals. childcare (if you have kids), etc., is perfect and should go a long way to ease your stress.

You have also got to start putting yourself first, something that does not come natural to most of us women!   You need to switch from "spending most of my time fearing for my life" to "spending most of my time fighting for my life," which is your #1 priority right now.  Everything else is #2 or further down the list.  YOU come first.  Top of the list, before any meetings, etc.  It's one of the odd benefits that comes with a bc dx.  Please give yourself that permission right now and stop trying to do more than you can or need to until you have taken care of your own treatment and emotional needs.  Tell your family, "I will need more help from you for awhile, and I will also need you to help me remember that my regaining my health is the most important thing I have to do right now."  And tell your friends, "I'd love to, but my #1 priority is getting well and then getting my strength back."  Fighting breast cancer is not something we work into everyone's else's schedules and needs.  (((Hugs)))   Deanna

NativeMainer

There's a website called "lotsa helping hands" that can be used to keep everyone updated, and has a calendar feature that lets you list the things you need/want help with and lets people sign up for it. I'm using it for my recon and it't going to be a huge help.  I've known other people who have used it during serious illnesses and other crises.  it's great! 

http://bidmc.lotsahelpinghands.com
 

hopefulhealing

I have been amazed at the lack of empathy and understanding especially by some women.  I have gotten angry at some of the insensitive comments.  I truly don't understand why some women think loosing both your breasts as well as dealing with a cancer diagnosis is not that big of a deal.  There are soooo many layers to this. And if I hear one more person say  A breast does not make a woman I will spit.  Let me remove both of yours and see how much of a woman you feel like.  I get angry as you can see just writing about it.  So easy to say when you have both of yours. I know most people genuinely want to help. But I agree we can use this as a teachable moment at times. I feel like this is two diseases......  the breast cancer and then the mastectomy. My husband found a wonderful article about the grieving stages specific to loosing a breast or breasts and it was so right on it.  It said that on average it takes two years for full acceptance of loosing a breast.  I am at 6 months since original surgery, had two more due to complications, wound infections in both incisions, an incision that broke open, 6.5 weeks of two IV antibiotics then five weeks of balance issues due to one of the antibiotics after the IV was done. This is not over when the incision heals. I am venting. So frustrated by people thinking I should be back to normal. I am not. Not sure if I ever will be.