How long do bc survivors stay on this site and why do they stay on past their treatment?

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susie09
susie09 Member Posts: 2,930
edited March 2014 in Breast Cancer #1
I thought it would be interesting to see some of the answers to that question, or, maybe it won't be. LOL

I see bc survivors going thru treatment now, some are just starting, some like me have just finished rads, and, some have been out of treatment for years.

I just wondered what everyone sees here in their own words.

What are we looking for here?

What are we still doing on here?

How long do you think you will still be posting on here?

Do we ever leave or can we not?

If we do leave, do we come back, even if we don't have bc again.

I post a lot less than ever before when I was in rads and after my lumpectomy.

I know, too many questions. I had too much wine I think. LOL

♠♣ Curious Christmas Susie ♠♣
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Comments

  • chenheart
    chenheart Member Posts: 5,159
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    I think my answer is simple~
    I think my answer is simple~ I was recently divorced, in a new relationship and had moved to a small town with as yet few friends when I was diagnosed. I saw an ad on TV for the CSN and joined in April of 2003~ days after my surgery. The support, friendship and understanding got me through all of my dark days doing battle with the beast. Honestly, I have thought many times since then of NOT being here~ but then I remember how I felt to be among the Kindred Spirits who walked before me and held my hand as I journeyed through the maze of fear and treatment.
    Just when I think I should/can leave, a "newbie" posts and I remember what brought me here. So I try and pay it forward, and I hope I bring others the same measure of comfort and encouragement as I found way back in 2003...

    Hugs,
    Chen♥
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
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    chenheart said:

    I think my answer is simple~
    I think my answer is simple~ I was recently divorced, in a new relationship and had moved to a small town with as yet few friends when I was diagnosed. I saw an ad on TV for the CSN and joined in April of 2003~ days after my surgery. The support, friendship and understanding got me through all of my dark days doing battle with the beast. Honestly, I have thought many times since then of NOT being here~ but then I remember how I felt to be among the Kindred Spirits who walked before me and held my hand as I journeyed through the maze of fear and treatment.
    Just when I think I should/can leave, a "newbie" posts and I remember what brought me here. So I try and pay it forward, and I hope I bring others the same measure of comfort and encouragement as I found way back in 2003...

    Hugs,
    Chen♥

    My answer
    I found the site because my oncologist told me about it. I just lurked for awhile and then finally posted. I wasn't used to being in or on a sort of chat site. I found a lot of support here and got my questions answered which was huge! Noone can better answer them than another bc sister.

    I finished rads a few months ago and thought I would be gone from here by now. I have tamox, but, haven't taken it and probably won't. I think that is part of the reason I am still here. I read the tamox posts to see how people are doing and then get caught up replying to others, especially ones that took rads when I did.

    I think for me, when I do leave, that will be a turning the corner type of thing. I think it will be me finally putting bc behind me.

    So one day I just might disappear!
  • RE
    RE Member Posts: 4,591 Member
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    Interesting
    I was first dx with cancer in 1997, I came here in 04. I first came here because I was curious, I was long out of treatment. I found that I had knowledge that could make other's cancer walk a bit easier. In 07 my cancer came back and I did not come here as much during time. Basically I come here to help other's, if I can make a positive our to the negative cancer is than I shall.

    Hugs,

    RE
  • dyaneb123
    dyaneb123 Member Posts: 950
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    RE said:

    Interesting
    I was first dx with cancer in 1997, I came here in 04. I first came here because I was curious, I was long out of treatment. I found that I had knowledge that could make other's cancer walk a bit easier. In 07 my cancer came back and I did not come here as much during time. Basically I come here to help other's, if I can make a positive our to the negative cancer is than I shall.

    Hugs,

    RE

    We will always be BC
    We will always be BC survivors. And everytime we have a mammo, or a checkup we will be right back in the scary place where we need a friend to hold our hands and reassure us.We can also always pass on our experience and reassurance to those who follow. I don't know how long I will want to stay on the boards, but for now it is a comfort I don't find anywhere else in my life.
    Dee
  • outdoorgirl
    outdoorgirl Member Posts: 1,565
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    Susie
    I come on here for companionship from others who have been or are going through what I have gone through.Not to say that I don't have friends outside of here,I do,but I have a common bond with everyone on here and it helps make for good friendship.
    I come on here to help give advice because "I've been there"-through diagnosis,surgery,chemo,rads,and now tamox,and life beyond treatments.
    I come here to try to encourage and be encouraged when life is tough-not just with bc but other areas in my life and others as well...And to get excited about NEDS and nervous about tests and test results.
    I do take breaks from here and am not on here as much as I used to be-but I keep coming back.Sometimes just to read,and sometimes to post and respond as well.
    Oh,I forgot-I come on here to laugh at silly jokes and antics too!
  • taleena
    taleena Member Posts: 1,612 Member
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    Susie
    I come on here for companionship from others who have been or are going through what I have gone through.Not to say that I don't have friends outside of here,I do,but I have a common bond with everyone on here and it helps make for good friendship.
    I come on here to help give advice because "I've been there"-through diagnosis,surgery,chemo,rads,and now tamox,and life beyond treatments.
    I come here to try to encourage and be encouraged when life is tough-not just with bc but other areas in my life and others as well...And to get excited about NEDS and nervous about tests and test results.
    I do take breaks from here and am not on here as much as I used to be-but I keep coming back.Sometimes just to read,and sometimes to post and respond as well.
    Oh,I forgot-I come on here to laugh at silly jokes and antics too!

    I know it seems as though I
    I know it seems as though I am sporadically pop in and out around here, with no rhyme or reason... the truth is I'm here quite often, just lurking in the shadows... until this past weekend.

    Before, I would watch and read looking to see if I had something to offer to others, I tried to stay away from topics that I was unfamiliar with, like masectomies or chemo.... and it seemed like everyone pretty much had everything covered...I was also speculative on the "realness" of the bonds here... (my bad..shame on me)... Meeting Susan this last weekend changed all of that for me, and the realization that we are all "real" and going through some of the biggest struggles that we have ever endured...and though I may not be familiar with a particular type of cancer, or a particular treatment plan, I do know the uncertainty, the fear and the fight... and I can offer a word of encouragement... I don't know about tomax.. but I do about Zoladex injections and Femara... and looking back... I am so thankful for others of every experience reaching out to help me through my rough times...

    The ones that have completed treatment long ago, bring a wealth of hope that I know I needed when I was diagnosed, going through my treatment, and still need to see...the graditude I feel for that is unmeasurable. The ones who went through it when I did... gave me the courage to keep going... and the new ones... they keep me grounded in reality... that at any moment our lives can be altered again, so to live each day in the moment.

    I hope to one day be able to give some of that back... Yes, pay it forward is a good way to say it...

    Boy did you open a can of worms...lol (wink)

    ♥ & hugs,

    ~T
  • taleena
    taleena Member Posts: 1,612 Member
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    Susie
    I come on here for companionship from others who have been or are going through what I have gone through.Not to say that I don't have friends outside of here,I do,but I have a common bond with everyone on here and it helps make for good friendship.
    I come on here to help give advice because "I've been there"-through diagnosis,surgery,chemo,rads,and now tamox,and life beyond treatments.
    I come here to try to encourage and be encouraged when life is tough-not just with bc but other areas in my life and others as well...And to get excited about NEDS and nervous about tests and test results.
    I do take breaks from here and am not on here as much as I used to be-but I keep coming back.Sometimes just to read,and sometimes to post and respond as well.
    Oh,I forgot-I come on here to laugh at silly jokes and antics too!

    xxoo's
  • taleena
    taleena Member Posts: 1,612 Member
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    Susie
    I come on here for companionship from others who have been or are going through what I have gone through.Not to say that I don't have friends outside of here,I do,but I have a common bond with everyone on here and it helps make for good friendship.
    I come on here to help give advice because "I've been there"-through diagnosis,surgery,chemo,rads,and now tamox,and life beyond treatments.
    I come here to try to encourage and be encouraged when life is tough-not just with bc but other areas in my life and others as well...And to get excited about NEDS and nervous about tests and test results.
    I do take breaks from here and am not on here as much as I used to be-but I keep coming back.Sometimes just to read,and sometimes to post and respond as well.
    Oh,I forgot-I come on here to laugh at silly jokes and antics too!

    ugh!!
  • taleena
    taleena Member Posts: 1,612 Member
    Options

    Susie
    I come on here for companionship from others who have been or are going through what I have gone through.Not to say that I don't have friends outside of here,I do,but I have a common bond with everyone on here and it helps make for good friendship.
    I come on here to help give advice because "I've been there"-through diagnosis,surgery,chemo,rads,and now tamox,and life beyond treatments.
    I come here to try to encourage and be encouraged when life is tough-not just with bc but other areas in my life and others as well...And to get excited about NEDS and nervous about tests and test results.
    I do take breaks from here and am not on here as much as I used to be-but I keep coming back.Sometimes just to read,and sometimes to post and respond as well.
    Oh,I forgot-I come on here to laugh at silly jokes and antics too!

    I guess I just thought it was worth repeating
  • chenheart
    chenheart Member Posts: 5,159
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    taleena said:

    I guess I just thought it was worth repeating

    I think your post absolutely
    I think your post absolutely did need/deserve repeating! It was so honest and eloquent and put it all in a beautiful perspective. Thanks so much for that....very touching Taleena!

    Hugs,
    Chen♥
  • chenheart
    chenheart Member Posts: 5,159
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    taleena said:

    I guess I just thought it was worth repeating

    I think your post absolutely
    Well, I know my response didn't need repeating! LOL
  • Jadie
    Jadie Member Posts: 723
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    Hi Susie
    I also saw the advertisement on tv. I didn't have anyone to talk to about bc, treatment, side effects etc. I joined the chat room and was a regular for a long time. The thing I guess that I was looking for came to me in the form of Zahalene when she told me that she was a long time survivor. This helped me so much mentally to know that there are long time survivors of bc. I was off for quiet a while and when I came back on (chat) I had lost track of so many and was kinda invisible so I thought I would try the discussion board. I hope by being here that I can help someone like Zahalene helped me. So I'm not sure that we can leave. How long will I be here? Who knows mabe as long as I am able to type. If I left I would truly miss my cyber sisters.

    Just when we feel that our lives have been disassembled and rearranged someone here can help us put it back together again. New or old.

    Cheers!
    Jadie<3
  • marywest
    marywest Member Posts: 132
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    Jadie said:

    Hi Susie
    I also saw the advertisement on tv. I didn't have anyone to talk to about bc, treatment, side effects etc. I joined the chat room and was a regular for a long time. The thing I guess that I was looking for came to me in the form of Zahalene when she told me that she was a long time survivor. This helped me so much mentally to know that there are long time survivors of bc. I was off for quiet a while and when I came back on (chat) I had lost track of so many and was kinda invisible so I thought I would try the discussion board. I hope by being here that I can help someone like Zahalene helped me. So I'm not sure that we can leave. How long will I be here? Who knows mabe as long as I am able to type. If I left I would truly miss my cyber sisters.

    Just when we feel that our lives have been disassembled and rearranged someone here can help us put it back together again. New or old.

    Cheers!
    Jadie<3</p>

    why I am here
    Finished radiation in April 2009, chemo caused nerv damage and left me in pain and un-able to walk like I used to. I was experiencing a sadness of where do I go from here, my life was not the same. I am still recovering, facing fatigue and pain. I came searching for answers, was there anyone in the same boat as I. Never found that answer, as I read about new people facing cancer and the fears that follow, it totaly took my mind off myself and the need to love, bless and support someone through their journey. When I got cancer, I was flooded with love and support from my family and friends, some people dont' have that. I have adopted a young lady facing two kinds of cancer, two kids, single, no family, scared and alone. Sent her my scarves and a goodie bag. Life is in giving, if you dont' give you dont' recieve. This place allows people to give, love and support. It brings tears to my eyes at the kind words these women say to others. These people tell you things your doctors dont'.
    Now I am facing a new one, and that is do I or dont' I take tamoxifen. I guess no matter what your facing, here your not alone.
  • susie09
    susie09 Member Posts: 2,930
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    Jadie said:

    Hi Susie
    I also saw the advertisement on tv. I didn't have anyone to talk to about bc, treatment, side effects etc. I joined the chat room and was a regular for a long time. The thing I guess that I was looking for came to me in the form of Zahalene when she told me that she was a long time survivor. This helped me so much mentally to know that there are long time survivors of bc. I was off for quiet a while and when I came back on (chat) I had lost track of so many and was kinda invisible so I thought I would try the discussion board. I hope by being here that I can help someone like Zahalene helped me. So I'm not sure that we can leave. How long will I be here? Who knows mabe as long as I am able to type. If I left I would truly miss my cyber sisters.

    Just when we feel that our lives have been disassembled and rearranged someone here can help us put it back together again. New or old.

    Cheers!
    Jadie<3</p>

    Wait
    I didn't mean to open up a can of worms. All I was doing was asking a question, that's it. There was no offense meant, no judgement intended. I was just curious as to why some stay, some never post, some leave right after treatment and so on. I apologize if I offended anyone. It was just a curious question post.
  • marywest
    marywest Member Posts: 132
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    susie09 said:

    Wait
    I didn't mean to open up a can of worms. All I was doing was asking a question, that's it. There was no offense meant, no judgement intended. I was just curious as to why some stay, some never post, some leave right after treatment and so on. I apologize if I offended anyone. It was just a curious question post.

    that was an awesome question
    I think that was good to ask, wish I would of drank a glass of wine before I wrote, its a little early for that.
  • Jadie
    Jadie Member Posts: 723
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    susie09 said:

    Wait
    I didn't mean to open up a can of worms. All I was doing was asking a question, that's it. There was no offense meant, no judgement intended. I was just curious as to why some stay, some never post, some leave right after treatment and so on. I apologize if I offended anyone. It was just a curious question post.

    Don't apologize
    I think it is a great question. I am loving the responses. It is so good to know that the "oldies" are a help and inspiration to the "newbies". I have often wondered how they felt.

    Jadie<3
  • susie09
    susie09 Member Posts: 2,930
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    Jadie said:

    Don't apologize
    I think it is a great question. I am loving the responses. It is so good to know that the "oldies" are a help and inspiration to the "newbies". I have often wondered how they felt.

    Jadie<3</p>

    Whew and Thanks
    Thank you Jadie and MaryWest. I was starting to feel like I offended someone and that was not my intention. So, I am letting out a big WHEW! Thanks for posting and letting me know this. Now I feel better!

    ♠♣ Susie ♠♣


    p.s. No more drinking wine when I am on here. HAHA
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
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    I would consider myself one
    I would consider myself one of the newbie's, in a way. I'm still going through treatment and come on this board almost every day. I have gotten many questions answered without even asking them. There is a wealth of love, support and down right genuine caring from many of you. I, for one, and grateful that the long-term survivors are still here and can offer the hope that we all have and that is to beat this beast. I plan on being here for some time and hope that when my treatments are complete and I am finally NED, I can offer encouragement and hope to the next group of ladies fighting for their lives!!
  • Sunrae
    Sunrae Member Posts: 808
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    MyTurnNow said:

    I would consider myself one
    I would consider myself one of the newbie's, in a way. I'm still going through treatment and come on this board almost every day. I have gotten many questions answered without even asking them. There is a wealth of love, support and down right genuine caring from many of you. I, for one, and grateful that the long-term survivors are still here and can offer the hope that we all have and that is to beat this beast. I plan on being here for some time and hope that when my treatments are complete and I am finally NED, I can offer encouragement and hope to the next group of ladies fighting for their lives!!

    I'm a newbie and came here
    I'm a newbie and came here after searching around to find someone who had walked the path before me. I found that many of you have walked the path, some still walking, and many like me, just starting out. What a wealth of information, experience, support and love I've found here from all of you beautiful courageous women. Some days I'm completely overwhelmed thinking about the "What if's". Sometimes I can't read the posts because they scare me; other times I see the joy everyone shares when good news comes along and I celebrate too. I've hated cancer with a vengeance since it took my mother's life, got to where I couldn't even stand the color pink because of what it represented. By getting to know all of you and seeing what beautiful souls you are it's helping me come to peace with this beast called cancer. I want to thank you all from the bottom of my heart for being there for women like me, for sharing, supporting, encouraging and helping us in this walk. Especially for all of you who could do other things in your lives instead of being here. May God bless each one of you with all the richness you deserve in every way.
  • Jeanne D
    Jeanne D Member Posts: 1,867
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    Jadie said:

    Hi Susie
    I also saw the advertisement on tv. I didn't have anyone to talk to about bc, treatment, side effects etc. I joined the chat room and was a regular for a long time. The thing I guess that I was looking for came to me in the form of Zahalene when she told me that she was a long time survivor. This helped me so much mentally to know that there are long time survivors of bc. I was off for quiet a while and when I came back on (chat) I had lost track of so many and was kinda invisible so I thought I would try the discussion board. I hope by being here that I can help someone like Zahalene helped me. So I'm not sure that we can leave. How long will I be here? Who knows mabe as long as I am able to type. If I left I would truly miss my cyber sisters.

    Just when we feel that our lives have been disassembled and rearranged someone here can help us put it back together again. New or old.

    Cheers!
    Jadie<3</p>

    Great Questions Susie ♥

    Susie, those are all good questions that you posted. So, thank you for asking them so that we can read all of the great responses from the oldies, the newbies and anyone in between. lol

    I don't remember the exact date I came here this year, but, it was right after my surgery, but, before I started rads. And, even though I had bc before in 1985 and had a lumpectomy and rads then, it had been so long ago that I was scared again, not only of having bc again but feared the radiation treatments. I came here, and, with several others taking rads too, exchanged information on how we were feeling, what creams to use, complaining about our exhaustion to just a simple Hi! I also posted then and still do to offer support to others and prayers. I still post and offer heartfelt words to anyone even if I haven't been thru their particular treatment, as a kind word is always welcomed and needed by everyone.

    I finished rads this summer and still come on, not often, but, still try to help anyone that I can and to ask for prayers for all of the new hurdles that seem to be thrown at me lately. I am a little over 2 weeks out from my last surgery for bc and I have been so overwhelmed by all of your prayers, good wishes, Merry Christmas wishes and just plain good old fashioned support for me. You will never know how much that means/meant to me.

    In the process I got so much more than just advice or help. I met some of the most amazing women in the world. You have opened up your hearts and welcomed each and everyone of us.

    What I pray for more than anything is that someday I try to log onto this site and I can't get on. You know why? Because there is a big old sign that says "Closed". Closed because a cure for bc was found! Prayers do work!


    Love, Jeanne ♥