Please don't ask tell me I need to meet "your friend who had BC"

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of all the irritating things I hear from people this is the worst to me.  I don't want to meet your friend or cousin or Aunt who has/ had BC. I don't want to Facebook them or txt them or email them.

Sorry just venting. Anyone else get this and it irritates them too?

Comments

  • LAstar
    LAstar Member Posts: 1,574
    edited July 2014

    Yes!  Sadly there are so many of us out there, and our friends want to help but are not sure how.  I managed to talk to most of the friends of friends, & some of them helped me immensely on my path. One really changed my course quite a bit.  But it is exhausting to have to contact all of these people,  and some really don't want to rehash it again.  I took my time about it and stopped when it was time.  Now I AM that friend that folks ask to reach out to the newly-diagnosed! 

  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited May 2014

    I was fortunate that a friend put me in contact with two ladies.  One older that just finished much harsher treatment and one that has a different kind that's been very blessed.  I have had many reach out to me after learning of my diagnosis to offer support and a sort of heads up on what to possibly expect during treatment.  I hope to someday be able to pay it forward because it truly has helped me.  

    What didn't help me were the comments from friends and family..

    "oh just get them cut off"

    "once they start cutting on you that stuff will spread like fire" 

    "you're tough, you'll be fine"

    "it's just stage 1" my thought was seriously its INVASIVE cancer.  

    Anyhow, thanks for starting this.  I feel much better getting some of it out.  

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited May 2014

    I've been on the other side of that irritating demand.

    When I was dx'd, I had some stupid things said to me, but I really wasn't listening.

    Now that I'm two and a half years out from dx, I do hear from friends that someone they know has just been dx'd. 

    I always give out my phone number, and the offer to talk any time, but with the stipulation that the person who has been dx'd has the right to keep it personal, and any decision to call me should be hers alone.... and if you haven't walked in her footsteps, then be VERY CAREFUL about sounding like an expert on what she should or shouldn't do.

    I've had some awesome conversations with perfect strangers, and I've never heard from many ladies who I know were given my number.

    We each have to forge our own path in this. 

    And fortunately, I developed some great one-liners for those (who never had cancer) who thought they could tell me how I should feel or what I should do.

  • TB90
    TB90 Member Posts: 992
    edited May 2014

    I have also had so many "referrals" to people I do not even know that have had bc.  I may have been much more eager to pursue that avenue if I had not already found bco that gave me all the support and info I could ever possibly need.  I have run into situations where I have met someone who has heard about my bc and then discloses hers.  Those have been very special and sweet moments on the whole.  My DS's friend's mother has just been dx and I offered through my son to talk should she desire.  She spent hours talking with my son but never called me.  I totally respect that we all get the support we need from the sources that best meet our personal needs.

    Blessings.  Your final statement is so true and helpful.  Have a line up your sleeve ready for when someone says something totally stupid and disrespectful.  They probably mean well, but that one liner may just help to educate them about the inappropriateness of their statement and will leave you feeling much better.  Nothing worse than thinking about the perfect reply an hour later!

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited May 2014
  • Ariom
    Ariom Member Posts: 6,197
    edited May 2014

    Cceandme, I can absolutely, understand how you feel. 

    Hi TB, good to see you, and Blessings, Hi! LAstar, Hi!

    Sunshineinky, I had a few of those lines, thrown my way too, I knew there was no malice intended, just dumb. I just say "Aw gee, really! Thanks a lot for that!" they start to back pedal.

    I have actually had a slightly different experience. When I was first thrown into all this, I had moved to a new area, more than 300km from the city I had lived for most of my life. I really didn't know anyone here, but I had been contacted by the Breast Care Nurse in this region, who urged me to go to a meeting of the Pink Ladies BC Group, in my small town. My instant reaction was negative, I remember saying to my Husband, "I haven't even had my surgery yet and I don't want BC, to become a hobby!"

    I decided that I would attend the meeting, couldn't hurt, and I would hate to be thought a snob, for not going, after I had been invited.

    I couldn't have been more wrong, with my initial reaction.

    What a great group of women they are. The meetings are once a month and although we have all stages of BC, some with recurrence after many years, some newbies, some having treatment, we all support each other. The age range is from 40's to 80's. We go out to the Movies or to lunch occasionally. We have speakers at the meetings and now I am the contact person, for all the new members.

    I was asked to speak about the group, which has grown to 17 members, from 10 when I started going 18 months ago, at the "Biggest Morning Tea", a fund raiser for Cancer Research, last week. When I finished speaking, I was approached by 3 women who didn't even know there was a group, in our little town and they have never had any real contact with anyone, who had been through the same experience as them. They are all coming to our next meeting, which is next week.

    Don't think I am suggesting this kind of group involvement is right for everyone, just that this journey can have many unexpected twists and turns.

    I never would have believed I'd still be here, on this Forum, this far down the road. I have made such great friends here and because I am a shopping addict, I have been able to share what I have discovered about clothing and bras which suit the changes in our bodies, along with information about the Boobs, Foobs and Prosthesis that I have found.

    This is a great place to find support and advice from people who do genuinely understand and empathize.

  • Kicks
    Kicks Member Posts: 4,131
    edited May 2014

    I don't remember anyone saying 'stuff' to me but then it's possible that I just ignored the 'stupidity'.   Hubby and Son (31 at the time) got all sorts of ignorant garbage dumped on them though.  Thankfully, they are the strong men they are and know me.  They put the ignorant garbage in the 'trash can' where it belonged.

    Long story that I won't give details on but my number has been given to several people who are dealing with BC.  Some have called me - both women and men whose wife has a BC DX.  That's great, I'll talk to anyone any time IF they come to me.

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited July 2014

    I've learned to let go of what people say.  They're well intended but don't understand.  If there is a person out there with the exact same cancer and circumstances as my own I want to talk with her.  Unfortunately, BC is so complex and we're all different.  It's a lonely experience.  Thank goodness for the women on here!

  • Jennie93
    Jennie93 Member Posts: 1,018
    edited July 2014

    Blessings, care to share a few of those one-liners with those of us who are not as 'creative'?  Heh.  

  • AmyQ
    AmyQ Member Posts: 2,182
    edited July 2014

    I agree that most people are truly well-intentioned when making these offers.  I for one never knew a single soul with BC until after I was dx. It was very helpful for me to connect with others and learn about their experiences so I'd like to suggest that blowing them off isn't always the best either. For me it's been a blessing.

  • Sinsin
    Sinsin Member Posts: 358
    edited July 2014

    Share this with your friends and family. I find this to be a perfect model to know what's appropriate to say to people going through any illness.

    http://www.latimes.com/opinion/op-ed/la-oe-0407-si...

  • stepangel
    stepangel Member Posts: 35
    edited August 2014

    Great link, Sinsin. Thank you!

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited August 2014

    My reply?  "Excuse me?".... Followed by long icy pause hanging in the air.  Works.Every. Time!

  • azalea23
    azalea23 Member Posts: 8
    edited August 2014

    I think other women do not know what to say and sometimes it does not come out right.  I agree that these comments are hurtful but I think they are trying.  How about "it's only hair."  That one bites.

  • Lori1967
    Lori1967 Member Posts: 66
    edited August 2014

    Since being diagnosed a month ago, I've heard this several times now. I have not called anyone. It's so early in my care, surgery is Aug 11th that any information I've needed, I've found here on this site.

    I think people really just want to help, if they haven't been through it themselves and can offer someone they know that has, they feel like they've done something.

    I guess I don't mind that as much as the people you see a few times a week and don't say anything at all. They don't know what to say I'm sure, so they refrain.....but it's awkward a bit.

  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited August 2014

    Hi folks- checking out some new threads and found this and it struck a chord on both sides of this coin. I am a couple years out since diagnosis and heard all kinds of unhelpful things from the limited few I told when I first got diagnosed. I kept my info very private because of professional reasons (self employed consultant).  But those that I did tell told me stories of people they knew or had known with BC, and one person did provide a name for me to call (someone who was an MD, close to my situation and knew someone who had the same type of internal rads treatment). 

    Whether you share your diagnosis with a few or with many, dealing with other people's reactions, comments, recommendations, and suggestions is some of the hardest part of this process. Knowing what helps you or not is probably the most key thing to figure out and with everything else going on, hard to do too. I had to say to a few "thanks but that is not helpful to me right now" during my whole journey. Be ready to tell them what you do need like "can you give me a ride, check in on my family while I am in the hospital, etc." Instead of them deciding for you what you need, throw out some things that would help to make your day a little easier.

    And sinsin put out a wonderful link that I think will be helpful to many here. I have used that circle of friends thing for years, and when I got diagnosed, I put a few in that inner circle and the rest went to the outside due to my need for privacy. I love the concept of "comfort in, dump out." 

    Down the road now, I am on the other side of the coin. I am the one people think of when they hear someone they know is diagnosed. I have had to listen to a few people talk about others they know that that have BC and they commentary about it. I usually just say I hope they receive good care and are fine. I suggest this site to them to share with people. I decided if closer friends or people I know find themselves in this place, I will decide that on a case by case basis if I want to talk to anyone, given my need for professional privacy around my health.  

    For those just diagnosed or going through treatment, this is about you and wishing you strength and healing through your journey.

  • Chrissy26
    Chrissy26 Member Posts: 32
    edited August 2014

    I would love to hear those "one liners". I am halfway through chemo and then will have rads to look forward to. It's all a process. I get that. However, what makes me absolutely cringe is when I hear "aw don't worry. You'll be done before you know it". I just want to kick these ppl. The end of therapy is just the beginning. And it scares me. But it really annoys me that generally most ppl don't get it. Any additional comments are welcome. Thanks. Chrissy

  • Chrissy26
    Chrissy26 Member Posts: 32
    edited August 2014

    oh yes. That is my fav too. Don't worry it will grow back. What these individuals do not realize is how awkward and diffcult it is to be without hair. I hate it. I have purchased fun hats and caps etc and make sure that I always look good but I just hate the fact that I have no hair. Ppl should think about themselves without hair. I really think that they would think twice. Hair is part of who we are. Of course it will grow back  and look wonderful. But that's not the point. Anyway.....it's part of the process. 

  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited August 2014

    Chrissy-do you know people in your network who have supported other people during cancer treatment? I learned they are usually the best with handling us because they understand the process. From biopsies, to diagnoses, surgery, to chemo and rads, and then the follow up process. I have a friend who really stepped up to help me during my cancer treatment and learned very quickly she was one who had gone through helping many people through her church during treatment. She was not afraid of me, never tried to control or dismiss anything going on with me, and even now, gently inquires about how I am doing through follow up. She told me recently "oh I understand very well that it does not end with treatment." These people will usually reveal themselves to you with the way they handle you and with their helpful actions. Watch for them and move towards them and away from the others who just make their dismissive comments. Telling you NOT to worry or making comments about your hair growing back eventually are not helpful. 

    I told a selected few about my diagnosis and kept in touch with those selected few during treatment. One friend who lives in another state who had always been very supportive through many other challenges in life was not good at all. I ended up distancing myself from her and don't really stay in touch much outside of a superficial "I am doing fine" update when she reaches out to me. Some people act like you had the flu or something and then come around later like "okay you better now, can we resume?" This stuff can really change relationships and end them. But better people end up coming along in the process though.

    Since you are going through chemo and then will be doing rads, and maybe ask another person in the family to provide updates to others on how you are doing so you shield yourself from the comments. It will help you to focus on you and not worry about what others are saying or might say. 

    I really never worried about being nice to people during treatment, especially those who were not kind to me. 

    Hugs sister.

  • Chrissy26
    Chrissy26 Member Posts: 32
    edited August 2014

    thanks Jazzy Girl. Your post was very interesting and true. The comment I love the best is how it definitely does change your relationship with friends and family and how important it is to stick with a new stream of supporters. Optimistic supports. You are so right. 

    I have a very good girlfriend who is a nurse. Her questions are all very superficial. Then she proceeds to tell me how wonderful her life is and her upcoming trip to the Bahamas. Two hours on the phone. All about her!!  Happened twice in two weeks. She got me on a really bad day the last time and I was very upset when I got off the phone. That will be the last time!!  She is single and has always been very selfish. But I just can't handle it at this time. I will heed your advice and try to stay away. This is not what I need at the moment. Thanks for letting me know it's all right. 

    Chrissy

  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited August 2014

    Chrissy- the other thing I sometimes say to people with those one liners when they want me to do something (or meet someone), etc. is say, "thanks, but I am good." It usually ends there.

    Your friend who is a nurse should really know better, but people don't stop being who they are because we are having a bad day. She may be someone you need to just put to the side right now as she is not helpful to you. Also someone you may need to just see for smaller periods of time. If she tries to chew your ear off again about her fabulous life, just say you are not up for any phone calls at this time. She will find someone else to talk to.

    You may also find that after you are done with treatment and trying to find your new normal, you may not be as interested in talking to her that much anymore. It is good to talk about positive things, but I know I cannot pull off a superfacial conversation anymore. Sometimes friendships change after all this too. And better people also come into your life.

    I hope you are doing well through your chemo and keep taking good care of yourself.

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