How to nicely stop well-meaning advice

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phlorada
phlorada Member Posts: 28

Hi everyone,

I am newly diagnosed ILC estrogen and progesterone positive and I am still waiting on additional tests. I will have those results Wednesday.

Right now, I am only telling people I have to tell about my diagnosis. Mostly because I am receiving advice or stories that, at this point, are just scaring me more and more. Does anyone have a suggestion as to what I could say to politely stop people from sharing? I understanding they mean well but right now...I just can't listen to anymore stories about side effects, surgeries etc.

Thank you!

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Comments

  • Kat22
    Kat22 Member Posts: 111
    edited November 2018

    phlorada: I took a two-pronged approach.

    1) I understood early on that people say stupid and hurtful things WAY TOO OFTEN, but I think it's just a way for most folks to express a kinship so to speak. So I let their comments go in one ear and out the other. I figure I've got enough stress fighting this beast to add more giving those comments a moment's thought.

    2) When I made a "public" announcement on Facebook to notify those who are friends but not close enough to tell each one personally, I made it very clear that "It's OK, I'm going to beat this, and I won't tolerate any pity or negativity." Although there were plenty of times when I felt negative or had my own pity party, no one outside my DH and grown kids knew about it. I received a ton of support throughout chemo and surgery, and it continues.

    Maybe one or both of those approaches will help you, I hope. It's not an easy journey you have ahead, but every one of us is here because we've made it. You will find all the info and support in the world on these forums. I suggest you visit often. ((HUGS))

  • lightseeker
    lightseeker Member Posts: 58
    edited November 2018

    Just shut the fuck up - I have cancer, asshole!

    Not really, but wouldn't it be a nice release :)

    My friend use to just scream "Stop. I dont wanna hear about it." It worked for her.

  • CaliKelly
    CaliKelly Member Posts: 474
    edited November 2018

    Hi, phlorada, I know what you mean, everyone knows someone who did blah, blah, blah,go to this Doctor, she's the best, eat this, meditate. I only told people once I knew I had to!!Cuz they would wonder why I shaved my head🤤. Try telling them you're in information gathering mode from your doctor's and tests, so you just want to take it step by step. Don't want to get ahead of things. I'm sure other ladies here will have some advice. You're in the waiting and worrying time right now, pnce you have a plan of action, you'll feel better, believe it or not! Best wishes to you 😚💖

  • CaliKelly
    CaliKelly Member Posts: 474
    edited November 2018

    I like lightseekers idea, though😂😂😂

  • phlorada
    phlorada Member Posts: 28
    edited November 2018

    Thank you Kat22, I didn't look at from the view point of a kinship. LIke I said, I know they mean well...I am just so scared, I don't want the additional scenarios. I think it will be difficult saying it on FB but it may be something to consider for the reasons you said...I hate the attention and I don't want pity.

  • phlorada
    phlorada Member Posts: 28
    edited November 2018

    Believe me LightSeekeer, that is what I was screaming in my head!!!!!


  • phlorada
    phlorada Member Posts: 28
    edited November 2018

    Thank you! CAliKelly...I have read, you feel better once you have a plan. I hope that is true. And when I get the final diagnosis...clinging to hope!!!

  • Artista964
    Artista964 Member Posts: 530
    edited November 2018

    I told no one except my bro who is cool. Too many anxieties in my fam along with dr phils and dr ozs..

    Just say you don't want to talk about it, but thanks to those who have to know. My mental health is great without all their crazy noise and cures.

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited November 2018

    A sharp elbow in the speaker's gut works just fine.

    Seriously, it's a fine line -- I was so upbeat and humorous in my approach on FB that I erased any potential sympathy. It would have been nice to have just one long-time friend or family member ask how I'm doing, but that hasn't happened since my initial silly announcement. The only exceptions are an ex-coworker I didn't know very well, who has stage 4 ovarian cancer, and has been cheering me on in private messages (she's a new old friend now), and a new niece-in-law who made offers of assistance. But I just can't ask for sympathy, ick. If I have a pity party, I want booze and male strippers!

  • phlorada
    phlorada Member Posts: 28
    edited November 2018

    Rosabella

    That is exactly what I am saying...I have enough of my own noise...I don't need anyone adding to it!

    AliceBastable

    I understand, I don't want the pity and I just can't imagine asking for help. I am blessed with a bossy daughter and friends who force their help because I just don't feel I need help...or will need it...it's hard to need or want help..


  • DiagnosisDisruption
    DiagnosisDisruption Member Posts: 108
    edited November 2018

    You lost me on the word "nicely".

    I had one lady start up a story that I knew was going to end in death and I just interrupted and said, "So I'm gonna die just like that person, is that what you are going to say?"

    Then again, this is my personality. When we made the initial announcement of Stage 2 breast cancer on caringbridge, I gave a list of things people could do for me/get me. No shame. I knew people were going to ask. I'd rather give them ideas to actually be helpful then tell them "oh, we're fine" and have them do for me/give me crap.

    Why should I be the one to thwart them from blessing me?

  • CaliKelly
    CaliKelly Member Posts: 474
    edited November 2018

    Just always remember one thing through all the noise from within and without, YOU CAN DO IT! and by IT, I mean ANYTHING! (From a card my Mom sent me😊) Whatever you have to do, you will just do it, step by step, until you're on the other side, and well and thriving again! And everyone will be in even more awe of you than they already are!😉I just learned an awesome verse from the Bible- "She is clothed in dignity and strength, and laughs without fear of the future"Thats us! And you too!😚💖

  • MDRR
    MDRR Member Posts: 133
    edited November 2018

    I waited until I had a plan in place before I shared the news (other than closest family and couple of friends). That seemed to stop people from trying to give too much advice since I gave the news along with my plan.

    I know people mean well and when the few would give unsolicited advice (or even disgnoses!) I felt they might need to feel better themselves or perhaps even less scared. Anyway, it didn’t happen too often fortunately!

    Good luck

  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited November 2018

    I pretty much shared with the world. But I learned fast that people, in their efforts to relate, be kind, or just SAY something, said lots of things that were insensitive. "My mom/aunt/sister/grandma who died of breast cancer, have you tried eating clean?, don't you think you should have a mastectomy instead of a lumpectomy?, I took tamoxifen and it ruined my life!, you should go see my neighbor's doctor..." I learned fast to protect my inner peace. It's OK to change the subject or excuse yourself and walk away. "Wow, look at the time, gotta go!"

    We are all different, with different ways to process sharing news. Be careful about tolerating well-meaning but insensitive conversations. If someone's feelings are hurt by my abrupt absence, too bad.

  • rachelcarter35
    rachelcarter35 Member Posts: 368
    edited November 2018

    I think it's okay to stop someone from telling their whole story and asking if it ends well because if it doesn't you'd rather not hear it at this time. I told everyone and anyone when I was diagnosed. It's just how I roll - but the alternative medicine advice and the stay positive advice was not helpful at all. I think usually they want to be helpful but its not... as you know. I get needing to stay focused and clear (not muddied by useless antidotes) as you make your plans.

  • CaliKelly
    CaliKelly Member Posts: 474
    edited November 2018

    I know, why would anyone tell you about someone they knew, who ultimately died from cancer! And yet it happened to me many times! I had to say, Not what I want to hear right now!🤤! And people, like the scientist at my gym who ,while I was undergoing chemo, used to tell me what a scam chemo was, a money making scam! And apparently what I should be doing is vitamin infusions and sauna! I said gee I wish you would have told me sooner, kinda too late now, but thanks😉

  • edwards750
    edwards750 Member Posts: 3,761
    edited November 2018

    Good grief Cali - a scientist? Who cares if they make money if it is saving our lives?

    Diane

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited November 2018

    This is not unusual, as you can see by everyone’s posts. My best advice is to do what is comfortable for you and know your audience i.e. be honest but circumspect with those who may want to give unsolicited or negative advice.

    I also felt very empowered by controlling the narrative. I made it known, from the beginning that if anyone had questions or concerns they needed to ask me directly. If I could, I answered openly and honestly. If I was not comfortable discussing certain things I politely stated as much. I made it very clear that I abhor gossip, speculation and unsolicited medical and non-medical advice. In the end, I’m nor sure that all unwelcome advice can be stopped, but I’m glad you recognize that it is often well intended, however misguided it seems at the time. Take care

  • Runrcrb
    Runrcrb Member Posts: 577
    edited November 2018

    Phlotada

    Do not put any of your diagnosis info on Facebook and tell anyone you share with to keep it off FB. I was diagnosed 2.5 years ago and it’s still not on FB! Generally speaking only those who have been diagnosed with cancer have a clue what you are going through. All those folks with advice and stories think they are helping you. Outside of immediate family and a few close friends (and a few coworkers because I couldn’t focus on work and needed help) no one knew until i had a pretty good idea of what i was up against. While you can’t get the cat back in the bag, you may want to stop sharing for now. Cancer has a long tail - my last surgery was two years after diagnosis- there is plenty of time to share. And I work with people and have social interactions with many people who have no idea what the last two years have entailed

  • phlorada
    phlorada Member Posts: 28
    edited November 2018

    Thank you everyone!! I realize, now, I have to tell my small circle not to tell others...I live in a small community and I just can't handle talking EVERYWHERE about negative side effects and , yes, people who have died....UGH!!! I appreciate your ideas!! Sometimes I just want to bury my head in the sand, if I can be truthful....

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2018

    I was very careful who I shared ANY information with after the first few weeks. If I didn't know them well, I kept my mouth shut. It's why I wore a wig (which actually looked real enough that no one knew I was going through treatment). I didn't want to scream "cancer patient", and that kept a lot of well-meaning but often clumsy, thoughtless comments at bay.

    Sometimes I simply had to have well-meaning colleagues and others "talk to the hand", and actually put it up in front of my face, palm out, and said, "stop--I can't hear about that now", when someone would launch into some godawful story. It's okay to protect ourselves from words that might pull us out of a hopeful, or peaceful place, and drag us into the dark. I bordered on terror a lot during treatment, and I don't have particularly thick skin, so I had to do what I had to do to protect myself. I even let my husband answer my phone when someone called and I knew they wanted me to give them an update (reassure them I'm okay) and I didn't have the energy to tell my story again, one more time.

    Caringbridge journaling was the best place for me to update when I felt strong enough to do so, and let others read. It was also a public forum (friends and family) and I realize now, since those who posted knew others would read what they wrote, my friends and family only wrote encouraging notes. I didn't have to get cornered by someone who told me a story about their aunt who had b.c. who died from it. Ugh.

    Claire in AZ

  • beach2beach
    beach2beach Member Posts: 996
    edited November 2018

    I didnt share with many people,..people I work with still don't know. Those I chose to tell I told them at the beginning I am going to tell you something and you listen and don't say anything even after I'm done. I tell them and then say now don't even think of saying I'm sorry or telling me any stories or giving me the uplifting spiel. I'm dealing with this my way and this is the what Id like you to accept. I know you care about me and that's enough. I know I can ask you for help or to talk and I appreciate it, so please no pity words.

    Seemed to work. I'm a bit snarky and sarcastic so I think those who really know me well knew where I was coming from.

  • CaliKelly
    CaliKelly Member Posts: 474
    edited November 2018

    like that approach!

  • momand2kids
    momand2kids Member Posts: 1,508
    edited November 2018

    I kept the circle small... people were on a need to know basis-- closest colleagues who could cover for me when I had treatment, family members (not my in laws) who I knew would get on the team and not offer me advice and only really close friends who I also needed on the team for support. I really assessed the people in my life and figured out who would be helpful and who would hinder--only the helpers got the info.... I was very private about all of it- even though I work in a very public setting-- but I found that people are often too self-absorbed to realize that you are wearing a wig to work or are out a few days more than usual...And,I did not want my every conversation at work to be about cancer.... To this day, 10 years later, there are still people who never knew then and still don't now.... and that's ok I don't know about their medical information either!!!!

  • phlorada
    phlorada Member Posts: 28
    edited November 2018

    So much great advice!! Thank you!!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2018

    Momand2kids,

    I agree about the self-absorption. I also didn't want to share my personal info on FB, or any other social media. Others decide it's okay, but I didn't think it was appropriate or even necessary. The people closest to me knew, and that was enough.

    I had to be clear about boundaries at work (setting boundaries doesn't mean you get angry, instead, you simply are clear and assertive with words). I teach at a university and it was my busy haven from thinking about the fear that comes with cancer dx and tx. When I went to work I was so engaged in what I was doing hours would go by where I didn't even think about what had happened to me--and I needed that much-needed respite from my monkey mind.

    If I told everyone, or if my students had known, it wouldn't have been my haven where I felt normal and where I was treated normally (instead of the "sympathy" expression, which could pull me from a place where I WASN'T thinking of it, to thinking of it, again).

    Claire in AZ

  • momand2kids
    momand2kids Member Posts: 1,508
    edited November 2018

    Claire

    that is exactly how I felt-- I also work in a university- and it was truly a haven--every day for 8-10 hours I did not have to think about cancer... surrounded by thousands of people every day-- crisises, things to do, people to supervise, students to deal with... it was a great respite. Very few people knew and it was great--- I could just go about my business every day, shut off the cancer talk and thoughts-- then only deal with it when I got home..... great relief....


  • egregious
    egregious Member Posts: 240
    edited November 2018

    Hi phlorada,

    Noticing that you expect test results today . . . hope things go ok for you.

    The worst time for a lot of us was at the beginning, and things really do calm down and get better once there is a treatment plan. Even having the diagnosis steers you in the right direction.

    People mean well but can say very unhelpful things. I have a bet with myself about how many people will go off on some wacko treatment idea or their aunt who died horribly. I am all like Um-hmm um-hmm and then change the subject as fast as possible. Other people are scared hearing your news, but it's not YOUR job to help them with their anxiety. That's on THEM.

    Being estrogen positive and grade 1 you are very likely to have a good outcome. So don't let the naysayers get to you. Keep us posted, and good luck with your treatment plan.

  • phlorada
    phlorada Member Posts: 28
    edited November 2018

    HI everyone,

    I did not say on my information....my tumor is very large. The pathologist described it on the report as HUGE. I know they size but I just can bring myself to put it into print ...really , if that makes sense. Centimeters, I found out today, the node biopsy came back positive. I going for a PETSCAN and MRI Tuesday and Wednesday. I am so very upset...I welcome any positive help....does anyone know anyone here with ILC metastasized?

    Thank you

  • egregious
    egregious Member Posts: 240
    edited November 2018

    Hey phlorada,

    Gentle hug for you. That is difficult news to hear. But there are a lot of treatment possibilities.

    Chemo can shrink back the tumor, sometimes they will do that before surgery. Then radiation, then followup medicines. You have the estrogen positive type which generally responds well to hormone therapy.

    (I am not a doctor - get advice from people that know this stuff better than me)


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