angry/not at this board

ohilly
ohilly Member Posts: 441
edited March 2014 in Breast Cancer #1
I am angry, but not at this board. I belong to another online forum and posted many of the same questions about my hair. Granted, I know I am obsessed with this topic and it's true that many women have been thru worse issues including mets, but several women responded that they were angry at me for posting the questions when they have to deal with worse things. This really hurt my feelings, especially since in one year I have had to deal with: 1.) getting breast cancer and having a mastectomy 2.) finding out I am BRCA 1 after I went thru the chemo and first mastectomy, and having to go thru the whole mastectomy thing all over again 3.) my husband cheating online while I was at the plastic surgeon's 4.) my mother dying a horrible death from lung cancer while I was going thru chemo 5.) my sisters fighting among themselves while my mother was dying and basically cutting me off after my mother's death 6.) finding out my 20 year old son has glaucoma and 7.) finding out I have chemo-induced female pattern baldness (the ultimate insult after all the rest).

I think everyone's pain is real to them, and this really hurt me. Fortunately, I have experienced nothing but support from THIS board.

Well, just venting.

Ohilly

Comments

  • Joycelouise
    Joycelouise Member Posts: 482
    #2
    You know, Ohilly, I find
    You know, Ohilly, I find your brave fight to regain your hair rather inspiring. You are right, you have been through a lot of hard times, and hard times that you could not control. That you keep trying, learning, and refuse to give up in this one area that you might be able to control is commendable. Consider yourself supported, but know that you also support me! BTW, the new pictures are gorgeous. love, Joyce
  • ohilly
    ohilly Member Posts: 441
    #3
    Hi, Joyce
    Thanks for your support, Joyce. You know, though, I think I should let go of the hair issue. I solved it by styling it, and I now realize if it gets worse and I have to get a wig or hairpiece, it's not the end of the world. I have found out some interesting things though on my quest for hair, namely about the sheitels and sheitelmachers in the Orthodox Jewish community which I'm sure you already know about. I also found out that aromatase inhibitors thin a lot of women's hair.

    I am going to join Gilda's Club pretty soon. In a few weeks I have an appt. to go to a new member's meeting. I was thinking of joining some kind of meditation group for breast cancer survivors. I think this will help me relax more. In September, when I'm one year out of treatment which is a requirement, I will start volunteering for the Y-Me hotline. Maybe giving back to others will help me focus less on my own superficial concerns.

    Luv ya,

    Ohilly
  • Kristin N
    Kristin N Member Posts: 1,968 Member
    #4
    ohilly said:

    Hi, Joyce
    Thanks for your support, Joyce. You know, though, I think I should let go of the hair issue. I solved it by styling it, and I now realize if it gets worse and I have to get a wig or hairpiece, it's not the end of the world. I have found out some interesting things though on my quest for hair, namely about the sheitels and sheitelmachers in the Orthodox Jewish community which I'm sure you already know about. I also found out that aromatase inhibitors thin a lot of women's hair.

    I am going to join Gilda's Club pretty soon. In a few weeks I have an appt. to go to a new member's meeting. I was thinking of joining some kind of meditation group for breast cancer survivors. I think this will help me relax more. In September, when I'm one year out of treatment which is a requirement, I will start volunteering for the Y-Me hotline. Maybe giving back to others will help me focus less on my own superficial concerns.

    Luv ya,

    Ohilly

    I agree with you...
    From what I have just read of your postings..you should try to move on to other things. Pleas don't take offense, but, I think you realize it too by your last posting here.
  • ohilly
    ohilly Member Posts: 441
    #5
    Kristin N said:

    I agree with you...
    From what I have just read of your postings..you should try to move on to other things. Pleas don't take offense, but, I think you realize it too by your last posting here.

    you're right, but
    Kristin, you are right and I don't take offense: BUT I do feel judged. Everyone has different ways of coping. When I was first diagnosed with cancer, I obsessed about that ad nauseum and then I eventually was able to let go of it. Now I have this second thing to deal with, my female pattern baldness, and am going thru the same process of obsessing, grief, and then letting go.

    I feel isolated in the bc community because apparently I am one of the few whose hair did not grow back all the way. There may be others, but if there are, I haven't heard from them.

    Anyway, hope all is well with you,

    Ohilly
  • RE
    RE Member Posts: 4,591 Member
    #6
    JUDGEMENT
    Making a judgement on someone elses issues or needs is not my call, my call is to be there to support you if I can. Ohilly, I totally "get" your obsession with your hair. I truly thought I was a very easy going not very frilly gal so I didn't expect losing my hair to be too worrisome. I was truly shocked at how much I HATED not having any hair. Ohilly, no one and I mean no one saw me bald. I liked nothing about the no hair thing and I could hardly wait for it to return. I am pleased you are finally seeing the light at the end of the bald tunnel and I am ten times as pleased that we at this board were here for you during such a tough time in the life of Ohilly!

    ((((HUGS))))
  • tami90650
    tami90650 Member Posts: 82
    #7
    ohilly
    It sounds like youve had more than your fair share of pain in this time. Dont get your feelings hurt. Just hang out and write to us. It will all be okay.
  • mmontero38
    mmontero38 Member Posts: 1,510
    #8
    Ohilly, We are not here to
    Ohilly, We are not here to judge anyone but to offer support. We've all had to cope with different issues as we have traveled down this unwanted road. Some of us had hair issues, others have weight issues, and others have had other complications. Don't let them get you down, we are here to support you 100%. I'm glad though that you have accepted this hair issue and from the bottom of my heart, I hope that it is temporary and caused only be the femara you are on. Love ya girl, Lili
  • rjjj
    rjjj Member Posts: 1,822 Member
    #9
    The straw
    Ohilly, It is kinda like the straw that broke the camels back. It is a very important straw though. I am so sorry you have had to go through so much pain during this already hard time. I agree with Joyce Louise when she said this is the one thing you have some control over, and it shows what a fighter you are. I think your hair is georgeous and am wishing you better luck with all other aspects with your family.

    I didn't think losing my hair would be so bad, but it is the final insult. Our hair is our crowning glory. And i know i miss mine. Thank you for posting your pics. Gives me hope that mine will grow too.
  • mimivac
    mimivac Member Posts: 2,143 Member
    #10
    Saw the other board
    Ohilly, I am a member of the other board, too, and saw the responses. I know you are hurt, but I think the majority of the people there were supporting you. Sometimes the members of that board are very outspoken. Much more so than here. I tend to post here more, but there are issues that those women deal with that are of special interest to me. I generally find them to be a good group with lots of information. But anyway, there is support for you here. Sometimes it is hard to let go of things that are both very upsetting and symbolic of all the pain we have gone through. I do understand. I think I would probably be the same about my hair. I am very eagerly waiting for it to grow back and I am an impatient person to begin with. Anyway, please don't be hurt. Many people here care about you.

    Mimi
  • ohilly
    ohilly Member Posts: 441
    #11
    mimivac said:

    Saw the other board
    Ohilly, I am a member of the other board, too, and saw the responses. I know you are hurt, but I think the majority of the people there were supporting you. Sometimes the members of that board are very outspoken. Much more so than here. I tend to post here more, but there are issues that those women deal with that are of special interest to me. I generally find them to be a good group with lots of information. But anyway, there is support for you here. Sometimes it is hard to let go of things that are both very upsetting and symbolic of all the pain we have gone through. I do understand. I think I would probably be the same about my hair. I am very eagerly waiting for it to grow back and I am an impatient person to begin with. Anyway, please don't be hurt. Many people here care about you.

    Mimi

    thanks, mimivac
    I have NEVER not felt supported by this board. One member, Marilynne, even called me in the hospital when I was having my mastectomy and I will never forget that.

    Maybe it's inappropriate to be telling this board about my hurt feelings from another board that has nothing to do with any of you, but the response from this board has truly hurt me, to the point that I was crying and felt heartsick today. One member of the other board even said about me (because there were so many posts about my hair): "She was becoming something of a joke." I don't see anything supportive about a comment like that.

    I guess I will continue to look to this board for my support and try to support all of you the best I can.

    I am crying as I write this...it brought back a lot of hurt feelings from when I was child and was bullied by other children.

    Ohilly
  • mimivac
    mimivac Member Posts: 2,143 Member
    #12
    ohilly said:

    thanks, mimivac
    I have NEVER not felt supported by this board. One member, Marilynne, even called me in the hospital when I was having my mastectomy and I will never forget that.

    Maybe it's inappropriate to be telling this board about my hurt feelings from another board that has nothing to do with any of you, but the response from this board has truly hurt me, to the point that I was crying and felt heartsick today. One member of the other board even said about me (because there were so many posts about my hair): "She was becoming something of a joke." I don't see anything supportive about a comment like that.

    I guess I will continue to look to this board for my support and try to support all of you the best I can.

    I am crying as I write this...it brought back a lot of hurt feelings from when I was child and was bullied by other children.

    Ohilly

    Ohilly, I understand
    I read your post about leaving the other site, and I understand. It's awful when experiences that are supposed to be supportive end up giving us unpleasant flashbacks of childhood. But for the record, many, many women spoke up for you. It was just a few that were unkind and I think they have their own issues to hash out. Anyway, I'm glad you are still here on this site.

    Mimi
  • Eil4186
    Eil4186 Member Posts: 949
    #13
    Dear Ohilly, I was very
    Dear Ohilly, I was very upset to read what those on the other site said about your posts. How unkind and inconsiderate. I think its cruel and ignorant to minimize or mock another person's worries or concerns. Who are they to say that your feelings are not as important as another's?

    A woman's hair is her "crowning glory". This is not superficial, it is just natural. After all you have been through I agree--it is adding insult to injury to have your hair not come back the way it was before chemo. We lose breasts, we are scarred, we feel sick, we are irradiaded, we lose jobs, and relationships due to this disease. Is it so much to want to keep our freaking hair???

    It doesn't matter what others think, what matters is how YOU feel about it. Cancer and treatment beats us up and takes many things away. But we are all told that our hair will grow back and we count on it and wait patiently as it comes in. The return of our hair is a sign of us getting back to our old selves again(or as close as possible, anyway).

    Ohilly do not let those people make you feel bad about your feelings. And by the way, you look FABULOUS!!!!!!! Blessings, Eil
  • Marcia527
    Marcia527 Member Posts: 2,729
    #14
    ohilly said:

    thanks, mimivac
    I have NEVER not felt supported by this board. One member, Marilynne, even called me in the hospital when I was having my mastectomy and I will never forget that.

    Maybe it's inappropriate to be telling this board about my hurt feelings from another board that has nothing to do with any of you, but the response from this board has truly hurt me, to the point that I was crying and felt heartsick today. One member of the other board even said about me (because there were so many posts about my hair): "She was becoming something of a joke." I don't see anything supportive about a comment like that.

    I guess I will continue to look to this board for my support and try to support all of you the best I can.

    I am crying as I write this...it brought back a lot of hurt feelings from when I was child and was bullied by other children.

    Ohilly

    Don't be sad. Thinking of
    Don't be sad, Ohilly. Thinking of you and hope you are feeling better now. :)
  • ohilly
    ohilly Member Posts: 441
    #15
    Eil4186 said:

    Dear Ohilly, I was very
    Dear Ohilly, I was very upset to read what those on the other site said about your posts. How unkind and inconsiderate. I think its cruel and ignorant to minimize or mock another person's worries or concerns. Who are they to say that your feelings are not as important as another's?

    A woman's hair is her "crowning glory". This is not superficial, it is just natural. After all you have been through I agree--it is adding insult to injury to have your hair not come back the way it was before chemo. We lose breasts, we are scarred, we feel sick, we are irradiaded, we lose jobs, and relationships due to this disease. Is it so much to want to keep our freaking hair???

    It doesn't matter what others think, what matters is how YOU feel about it. Cancer and treatment beats us up and takes many things away. But we are all told that our hair will grow back and we count on it and wait patiently as it comes in. The return of our hair is a sign of us getting back to our old selves again(or as close as possible, anyway).

    Ohilly do not let those people make you feel bad about your feelings. And by the way, you look FABULOUS!!!!!!! Blessings, Eil

    thanks
    I LOVE this board, and will continue to post on it and answer others' posts.

    What exactly do you think is wrong with the women on that other board?

    Ohilly
  • rjjj
    rjjj Member Posts: 1,822 Member
    #16
    ohilly said:

    thanks
    I LOVE this board, and will continue to post on it and answer others' posts.

    What exactly do you think is wrong with the women on that other board?

    Ohilly

    ohilly
    I can't hardly believe that the censors and such would allow this kind of name calling on a SUPPORT board. I am so sorry. If so there is definitely something wrong here!!
    jackie

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