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The Hermit Club

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  • lisagwa
    lisagwa Member Posts: 39

    I agree. It's the questions and then the explaining and then additional (unhelpful but well meaning) comments/thoughts/suggestions. Sometimes its a look an unobvious look at your breast or a new person who knows because word spreads and its no one's business. I used to not like when people spoke about newsworthy events or kept things impersonal but I can now see the advantages to this.

  • camillegal
    camillegal Member Posts: 15,711

    I can't stand wearing any kind of bra it's so irritating and it used to be people looked right there hahaha, I would laugh and just say gaze all u want there's nothing there anymore--but it's funny how their eyes automatically went in one place, well 2 places LOL

  • Sissydi
    Sissydi Member Posts: 183

    Oh wow, it'll be bad enough with them looking at my hair, or lack of, I hadn't thought about my chest! Aaggghhhhhh!

  • camillegal
    camillegal Member Posts: 15,711

    Sissy hahahahahahahahaha

  • lisagwa
    lisagwa Member Posts: 39

    So... my question... what to do about questions from good friends but questions or comments that you don't want to respond to?

  • Beckers
    Beckers Member Posts: 979

    Carmi, (had to shorten your name so my autocorrect would stop fixing things!) anyhow, it is true how we can go for days and we all understand perfectly.



    Lisa, I found out about my possible malignancy the day before I left to drive half way across the US to be with my Dad as he was dying from cancer. I went through diagnostic testing in a complete fog. I couldn't fathom bringing BC on my family on top of Dad dying. It's been so painful. I still feel very flat. I too am on meds and seeing a counselor. And Carmi, I can't imagine losing both parents AND my sister being diagnosed with BC too. It's a lot to go through.



    I'm glad to have a place to share where people can truly relate. Have a good night.

  • camillegal
    camillegal Member Posts: 15,711

    Lisa I honestly don't mind questions from my good friends cuz they are all pretty much to up to date, when I end up in the hospital they all seem to know and know what's going on and they really don't ask til I tell them which I do. Bit when I'm in a group I shutter cuz this is where I'm uncomfortable I always say I'm doing fine just takes a while, Or my Drs. love me so they can't see me enough and laugh it off.I'm open about my cancer but not all the details it's too much even for me to tell all about it and what's going on now.--The worst to me is I heard u were just in the hospital maybe it's time to get new Drs. not knowing why I was in there. So my choices for going places are more limited and I don't mind staying home for quiet. That sounds awful cuz I know they mean well, but this is where I say and vent--I don't want to be the one with cancer it's still just me and I don't want advice--I just want to enjoy myself. I'm older and people talk about their trips and weddings and grandchildren that's what I want to hear about not cancer talk and the latest in treatments. My sister feels the same way as I do so if we are someplace we have to go we act polite and kind walk away. She's stage IV too. so we both understand how we feel--we've gotten used to a lot of that.Oh and my cousin is stae III so she's comes in as a buffer. LOL

  • Sissydi
    Sissydi Member Posts: 183

    Yes cam, I totally get the group thing. My biggest challenge now socially is going out in public with my hair only being 1/2 inch long......I've been to doctor apps and the store with my baseball cap, but church is just so much more intimate, and everybody knows why I've been out, so showing up in a head scarf will look sickly, and get me the awwwss, and you poor things, and the wig is just too darn hot, and everybody knows its not my hair anyway......so that leaves me with my ball cap, which is my best friend for now! But at least I'm not totally bald!

  • kltb04
    kltb04 Member Posts: 234

    Sissy, I feel the same way - going to the dr or to the store - or even out to eat, etc...in my cap or hat is one thing but when it comes to going places where I will be interacting with acquaintances (I am thinking of back to school coming up), it is going to be a different situation.   I know at school orientation I will be getting a lot of the "how are you" type questions and I am almost thinking of sending out an email as a preemptive strike!  A lot of people on my Facebook are just that - acquaintances - and people I know through school, teachers, parents of other kids, etc...so I am thinking of just sending out a blanket update saying that I am about done with chemo, will be having surgery, etc...I will be probably having surgery a few weeks after school starts so I will need to let this years' teachers, counselors, etc..know what is going on as well.

    I don't really care that people know what is going on, I just don't want to have to continually tell the same story over and over.

    My two friends I referenced before have both told me that they have not wanted to make me feel like I had to talk about BC if I didn't want so they haven't been asking me about it and to not interpret that as lack of concern.  

    Ok, I am rambling...all fuzzy headed from pain pill for Nuelasta SE so I am probably not even making sense.

  • camillegal
    camillegal Member Posts: 15,711

    U guys make perfect sense, it's like a snowball and somehow when u get involved it picks up speed--so do whatever will make it easier for u.  We're all sensitive about things and that's what keep us guarded on alot of stuff. But I think we have a right to be.

  • greenpeace
    greenpeace Member Posts: 6

    Hey all,

    I am not really a hermit, but I can't really seem to understand some of the things people say to you. So I stay away from people that I used to have more patience with before the the BC. In a way I am almost fearful to talk to anyone because I don't to get disappointed or upset.  

    A friend of mine of many, many years ( I am 42 and we met in HS at 13) seemed upset with me when I had some anxiety about the expander implant exchange surgery. Then she wanted me to send her photos of breasts after it was over.  Really.  I am beginning to think everyone is crazy. I opted for a unilateral mastectomy and ended up having the other breast removed three months later due to a new discovery. I didn't even tell some people. People were so judgemental. I didn't want anyone to tell me you should have dont that the first time.  Too much.  Now I have had the exchange. Months later ( first surgery was 12/28/11) I guess I am suppose to be thrilled now right? Well, I am just okay.  I am still tired and trying to register all the things that have happened.

    In general, I am tired of people thinking I should be over it by now. I have been dealing with this crap since 10/28/11. Its August next week . I am made an appointment to talk to counselor.  I do have had lots of sane supporters. So I don't want to take that away. I am going to try and go out today. Exercise seems to really help. Oh and btw... now they are thinking I have to have another surgery for fibroids they discovered. Apparently really large.  Good grief. Its Saturday so I am going to go out in my newly purchased and ugly bra and get some air.

  • camillegal
    camillegal Member Posts: 15,711

    Greenpeace I think that what this is all about--so many of us have had further complications over time and a lot of people think ok it's done--so forget about it. It's not like we want to dwell, it circumstances that force us to continue this fight. Northing is the same. It takes long that te operation and chemo, and rads etc. Its ongoing for alot of us and we understand but that's about it. Our close friends and family understand but others just don't et it.  So we tend to keep to ourselves more that/s all.

  • Beckers
    Beckers Member Posts: 979

    Hugs to you Greenpeace! I am so glad we all get it and have this place to talk about these things. I think Cami says it all. I had bilat lumpectomies and now having BMX with DIEP recon in 2 weeks. Haven't worked since April. My DH thinks BC was going to be a one and done situation. Ha. Even when they "catch it early" it is complicated. I totally relate to "I'm still tired and trying to register all the things that have happened." It's a lot to process and counseling has been helpful for me. Hope you have a good experience as well.

  • lisagwa
    lisagwa Member Posts: 39

    Greenpeace- you said several things that were on my mind but I didn't put it into words, especially your first comment..."So I stay away from people that I used to have more patience with before the the BC. In a way I am almost fearful to talk to anyone because I don't to get disappointed or upset"... This holds extremely true for me. However, these friends would be my main supporters so now I have to figure it out and hold my own with only a handful that truly get it. And I don't burden them. Glad to be able to come to this thread.

    It's great too that you exercise. I need to implement this but haven't been motivated as yet to do so.

  • Sissydi
    Sissydi Member Posts: 183

    These are our protective measures we take to cushion ourselves from any more emotional stress. Totally understandable when we've been dealing with the diagnoses we have. There was even one man at our church, when he first heard I'd had a mastectomy, (which he didnt need to know, but news spread fast) say to my husband, "so is she getting implants? On both sides?" ........I was horrified! Especially to say that to my husband......it was none of his business, and he should have kept his trap shut!

  • markat
    markat Member Posts: 502

    Hi ladies. I can totally relate to being a hermit. I finished chemo in March and had my BMX in May. I'm still getting herceptin and have my exchange surgery in a week.



    When I leave the house it's with my 7 and 8 year old girls and my husband. They never ask me stupid questions or talk about cancer! Their most annoying questions are about going swimming or getting fast food lol.



    I definitely am not depressed. I just choose not to spend my time with people who think I'm getting a free boob job or that I'm being too dramatic about my illness. I really wish I wouldn't have told people about my BC sometimes.

  • Anita1028
    Anita1028 Member Posts: 2

    "I want my life back" is something I hear myself saying over and over.  I had always been a very private person, but since this disease took over a few month's ago I have had to make so many adjustments it seems.  Some days are sooo long and difficult... But I won't give up because I want my life back!  With every new side effect I have a moment of fear, then I find comfort by reading what others have shared and I do feel better.  

  • markat
    markat Member Posts: 502

    Sissydi, one of the most surprising things I have dealt with, is how many men ask about my breasts and implants. It's disgusting really. Out of the blue, my husband's cousin asked if I was getting huge knockers. It's really hard having to listen to things like that.



    During chemo I wanted my life back. Now I just want to enjoy the life I have.

  • CSMommy
    CSMommy Member Posts: 58

    I was invited to a baby shower this weekend, and was supposed to take my son to his friend's birthday party. I've declined both invitations. My eyebrows started to fall out this week, and now they are all gone. I feel just incredibly ugly, and I can't imagine seeing anyone right now.



  • camillegal
    camillegal Member Posts: 15,711

    Oh my Stars--what men will say--I never heard that stuff.

    CSmommy I think we can all relate, but I know u'r not ugly but feeling that way is awful. All u'r hair will return and u'll feel better.But in the meantime please try to get out sometime--I know the looks but I hate that u feel ugly. U want to see ugly --HERE I AM LOL

    But I do understand how er stay where we are comfortable it is so much easier for now until we get it all together. So we're all on the same page here and I'm starting to ramble --which I tend to do. My brain is not really as sharp as it used to LOL

  • markat
    markat Member Posts: 502

    CSmommy the eyebrows were the worst part for me. That's when I really felt like I looked "sick" or like uncle fester. I'm terrible at drawing the eyebrows on, so I mostly hid. Thankfully I had support to help me with my kids during that period. My husband really stepped up when it came to our children. Heck, he was a "dance dad" for most of the year lol.



    On a side note, I'm really enjoying the Olympics. What did you ladies think of the opening ceremony :)

  • kltb04
    kltb04 Member Posts: 234

    CSMommy - (((hugs))) - sorry you are feeling bad about yourself.  Mine are very sparse now but I can still see enough of them to fill in with powder.  I bought some stencils but omg it looked crazy when I tried to use them. My lashes bother me worse that the brows so I have been wearing quite a bit of eye makeup/liner to disguise the thin lashes.  But only when I go out at home I am just a bald headed, no lashed alien creature.

    camillegal - hugs to you and your sister...I just saw above where you said she has BC too. I will say (and you know we hate it when others tell us this, but its ok here, lol) you seem like a really positive and strong person from all your posts! 

    Beckers - I think I have FINALLY convinced my Dh and my mom that BC is not an "over and done" disease.  That it will always be with me.  DH will still say something about "next year at this time this will all be over..." and I will just say "well, I hope so."

    markat/Anita - funny y'all should say that about wanting your life back.  I just posted on someone else's thread on bco that I don't really want my life back, I just want my life, lol.  I would never ever have chosen BC to change my life but before I was dx I was in a real rut.  Kids getting older, me not knowing what I wanted to do with my life, just working PT to have something to do, taking things for granted.  Never wanting to make plans unless life was perfect and I knew things were all ok.   Now I appreciate every day, the small things, I live in the moment much more.  I make plans because you don't know what tomorrow will bring but that doesn't mean you shouldn't plan to be here.  Ok, rambling over.

    lisa - I hope you are feeling better.  My MO prescribed celexa and I have been on it a couple months, I don't know if it helps or not, I guess maybe it does! 

    greenpeace - ugh - how on earth do people get the idea they have any right to judge us and our decisions???  Sorry about yet ANOTHER surgery.  Good that you are able to get out and about and take a walk.  Way too hot here!

    Sissy/markat OH MY - I can't believe that men are saying that - totally inappropriate.  I have gotten the "oh you'll have nice perky boobs" comment from a couple of friends and I have kind of laughed it off but I thought that it was really not very sensitive.  I mean, it's okay for US to say stuff like that but not for others to say it to us.  But the people that have said it are both sweet girls and I felt like I would really embarrass them if I said something about it.

    markat - I am watching the Olympics too!  I really enjoy the gymnastics and swimming the most but I have just kept it on all day as background and found myself quite into the vollyball earlier.

    Well, my plans with the two friends (the DSP girls) didn't work out tonight.  Which is just as well with me right now, I will just have Taco Bell and watch the Olympics.  Sometimes I don't think I am a hermit as much as I am just lazy - lol! 

  • greenpeace
    greenpeace Member Posts: 6
    Thanks for your response. I really appreciate it. I made it out to the movies Smile One day at a time.
  • greenpeace
    greenpeace Member Posts: 6

    Oh yeah. I love the Olympics. I was so looking forward to the show last night. Hugs to all.

  • Sissydi
    Sissydi Member Posts: 183

    Eyebrows are the worst...I have dark hair, and with them missing, I look like cancer girl! I draw them on ok; but I feel totally naked! I think that's part of why I stay home a lot lately!

  • camillegal
    camillegal Member Posts: 15,711

    I'm LOLing thru these posts Kltb u are hysterical--I don't know how u remember anything.

    Sissy don't worry about those brows-just wear those glasses with the silly nose and hair stuff, everyone will thing u'r goofy.

    Kltb I have to tell u my niece had BC-Stage III then I got it soon after--my poor sister she was trying to make food that we had a tast for (special) then she'd deliver it and did what she could, Then after she caled me and said those words I have BC--my response was u SOB u just had to not take care of us.--My cousin ot BC too. Well instead of us being normal about it we lauhed so hard cuz we blamed each other-now none of us have boobs (no recon), now it's oh u feel worse than I do, no u feel worse than I do--we all feel lousy .My sister was in the hospital and went home a coupld of days later I was rushed to the hospital all my levels were way down--my sister say u just couldn't let me have my attention---RIGHT--My brother goes to the same hospital and uess who's there?--he had cancer of the thyroid. He's sitting in my room saying someone has to stop this sh**.

    I got rushed to the hospital again 1 week later and again my sister is saying Oh now u have to take it away from our brother--My other brother said I don't want to see any of u people.--So Look at the backup I have for my very own and they do understand, but we do tend to makes to many jokes among us. I guess

    That's our story.

  • kltb04
    kltb04 Member Posts: 234

    cami - OMG, um, sucks to be your family???  I guess you have to laugh about it though - what choice do you have?

    Ok, I had my Taco Bell - such healthy fare.  I keep telling myself after chemo I will start eating better.

    Just rescheduled with my friends to go out to eat Monday night.   I gave them fair warning that it's too damn hot for a wig so be prepared.  They haven't seen me in person in months.  I will be going with my embellished/bling hat and large hoop earring combo. ;)

  • camillegal
    camillegal Member Posts: 15,711

    KL First of all every so often we HAVE to have taco bell----and u will look adorable with u'r hat and huge earrings (I did that too) LOL

  • markat
    markat Member Posts: 502

    I had taco bell last night during the opening ceremony. Let's blame all the impressive athletes for our bad eating!



    Cami- I'm so sorry you all have been thru this!

  • CSMommy
    CSMommy Member Posts: 58

    Yes, markat - exactly! - I now feel like I look sick without the eyebrows. I'm surprised how this is bugging me more than losing my hair. My eyelashes are sparse, too. Sigh...I hate how vain I'm being. I've got an eyebrow stencil kit, but as with doing anything for the first time I don't know what I'm doing and I looked ridiculous.



    Wow, cami. Your family has sure been through a lot. It sounds like you are blessed, though, to be so close and supportive of each other.



    Have a great time at dinner Monday, kltb04!



    Trying to patiently wait for the Olympic highlights tonight. Sure wish I had some Taco Bell to go with it!