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

124

Comments

  • Wolfi
    Wolfi Member Posts: 425
    #62
    What timing.....
    Susie,

    I've not been checking the site for about a week (been very busy with work and school). Just this morning I started wondering how long I would continue posting here and checking on my Circle of Sharing page that I set up. Now that I am done with treatments and have been taking Tamox for about a month, life is kind of dull (?). It's hard to think that there isn't anything left for me to do for treatment and I'm kind of at a loss. I get to see my rads oncologist next week (haven't seen him for a month) and then I won't see my regular oncologist until April. That's it. No more tests, no more appointments, nothing else I can do except hope it doesn't come back.

    I want to encourage the newbies but there are days when I just don't want to go through all of it again in a new post. I feel bad for those who don't have good (or any) support systems at home and get a little frustrated at some posts where the person asks a question that has been answered and replied to many times before. I wish more people would read the old posts - especially the ones about radiation and chemo - before they start a new posting.

    I don't know how much longer I'll be on here. I do enjoy everyone, but reading all of the new posts is just too much some days. I think I'll probably just read more than I'll post and only respond when I feel really strongly about it or think that talking about my experience may reduce some of the stress someone feels about their own situation.
  • susie09
    susie09 Member Posts: 2,930
    #63
    Wolfi said:

    What timing.....
    Susie,

    I've not been checking the site for about a week (been very busy with work and school). Just this morning I started wondering how long I would continue posting here and checking on my Circle of Sharing page that I set up. Now that I am done with treatments and have been taking Tamox for about a month, life is kind of dull (?). It's hard to think that there isn't anything left for me to do for treatment and I'm kind of at a loss. I get to see my rads oncologist next week (haven't seen him for a month) and then I won't see my regular oncologist until April. That's it. No more tests, no more appointments, nothing else I can do except hope it doesn't come back.

    I want to encourage the newbies but there are days when I just don't want to go through all of it again in a new post. I feel bad for those who don't have good (or any) support systems at home and get a little frustrated at some posts where the person asks a question that has been answered and replied to many times before. I wish more people would read the old posts - especially the ones about radiation and chemo - before they start a new posting.

    I don't know how much longer I'll be on here. I do enjoy everyone, but reading all of the new posts is just too much some days. I think I'll probably just read more than I'll post and only respond when I feel really strongly about it or think that talking about my experience may reduce some of the stress someone feels about their own situation.

    Hey Wolfi
    Good to see you! I totally understand how you feel. Good luck with your appt. next week.

    ♠♣ Christmas Susie ♠♣
  • queenqueen21
    queenqueen21 Member Posts: 2
    #64
    WHy for me is . . .
    I just dropped in to say a big hello there is life beyond all the primary treatment- I will be 8 yrs , 8 glorious years free on jan 7th, 2009 and want to provide inspiration to anyone in active treatment- I have lymphadema- living well with it- no swelling or out of control problems- I live a FULL fun life and was Stage II bc with ductal involvement- Bi lateral + 8 other surgeries but now ALL behind me- it can and will happen- HANG in there!
  • New Flower
    New Flower Member Posts: 4,294
    #65
    Wolfi said:

    What timing.....
    Susie,

    I've not been checking the site for about a week (been very busy with work and school). Just this morning I started wondering how long I would continue posting here and checking on my Circle of Sharing page that I set up. Now that I am done with treatments and have been taking Tamox for about a month, life is kind of dull (?). It's hard to think that there isn't anything left for me to do for treatment and I'm kind of at a loss. I get to see my rads oncologist next week (haven't seen him for a month) and then I won't see my regular oncologist until April. That's it. No more tests, no more appointments, nothing else I can do except hope it doesn't come back.

    I want to encourage the newbies but there are days when I just don't want to go through all of it again in a new post. I feel bad for those who don't have good (or any) support systems at home and get a little frustrated at some posts where the person asks a question that has been answered and replied to many times before. I wish more people would read the old posts - especially the ones about radiation and chemo - before they start a new posting.

    I don't know how much longer I'll be on here. I do enjoy everyone, but reading all of the new posts is just too much some days. I think I'll probably just read more than I'll post and only respond when I feel really strongly about it or think that talking about my experience may reduce some of the stress someone feels about their own situation.

    I agree
    with Wolfi,
    I wish everyone use "search" option and try reading previous posts on the same subject before posting the same question again.
    It will help us to be more efficient and cover more topics.
  • jnl
    jnl Member Posts: 3,869 Member
    #66
    queenqueen21 said:

    WHy for me is . . .
    I just dropped in to say a big hello there is life beyond all the primary treatment- I will be 8 yrs , 8 glorious years free on jan 7th, 2009 and want to provide inspiration to anyone in active treatment- I have lymphadema- living well with it- no swelling or out of control problems- I live a FULL fun life and was Stage II bc with ductal involvement- Bi lateral + 8 other surgeries but now ALL behind me- it can and will happen- HANG in there!

    Thanks Queen!
    It is always great to read from bc survivors that are out of treatment for several years and doing well! Wishing you a healthy future!


    Hugs, Leeza
  • mimivac
    mimivac Member Posts: 2,143 Member
    #67
    Hey, Susie
    Let's see: I am looking for support and understanding here most of all. A lot of people in my life, while loving and supportive, cannot understand the emotional toll cancer takes on you. They especially don't understand that it's not "over" just because you've finished treatment. In fact, that's when the struggle often really begins.

    I am still here because I fervently continue to need that support and understanding. I can post here about my feelings, depression, etc. and no one will say, "get over it."

    I don't know how long I will be posting, but for now, I don't plan on leaving. I think it's only natural to modify our posting level once we are out of immediate danger and are continuing with the daily business of our lives. But I've come to know and love the women on this site and don't think it's something that I will just drop. I also feel an obligation to new women on the site, to help and support them the way I was helped and supported.

    Sure, I think a lot of people leave. And that's all natural and good, but I feel that having a core group of long-term survivors on here is so important. I know that some people have come back after many years hiatus. Maybe they felt the need to give back; maybe they were still dealing with the legacy of cancer. Probably both.

    Thanks for the nice discussion!

    Mimi
  • chenheart
    chenheart Member Posts: 5,159
    #68
    mimivac said:

    Hey, Susie
    Let's see: I am looking for support and understanding here most of all. A lot of people in my life, while loving and supportive, cannot understand the emotional toll cancer takes on you. They especially don't understand that it's not "over" just because you've finished treatment. In fact, that's when the struggle often really begins.

    I am still here because I fervently continue to need that support and understanding. I can post here about my feelings, depression, etc. and no one will say, "get over it."

    I don't know how long I will be posting, but for now, I don't plan on leaving. I think it's only natural to modify our posting level once we are out of immediate danger and are continuing with the daily business of our lives. But I've come to know and love the women on this site and don't think it's something that I will just drop. I also feel an obligation to new women on the site, to help and support them the way I was helped and supported.

    Sure, I think a lot of people leave. And that's all natural and good, but I feel that having a core group of long-term survivors on here is so important. I know that some people have come back after many years hiatus. Maybe they felt the need to give back; maybe they were still dealing with the legacy of cancer. Probably both.

    Thanks for the nice discussion!

    Mimi

    And besides, if I had left
    And besides, if I had left CSN in 2004 or 2005~ we wouldn't have had the AMAZING (if I may say so myself!) and loving connection almost 60 of us experienced through the Ornament Exchange! I dare say, the sisters who lovingly chose and received ornaments from the Kindred Spirits here on the boards will be forever touched by this exchange...no matter when they were diagnosed.

    Hugs,
    Chen♥
  • chenheart
    chenheart Member Posts: 5,159
    #69
    mimivac said:

    Hey, Susie
    Let's see: I am looking for support and understanding here most of all. A lot of people in my life, while loving and supportive, cannot understand the emotional toll cancer takes on you. They especially don't understand that it's not "over" just because you've finished treatment. In fact, that's when the struggle often really begins.

    I am still here because I fervently continue to need that support and understanding. I can post here about my feelings, depression, etc. and no one will say, "get over it."

    I don't know how long I will be posting, but for now, I don't plan on leaving. I think it's only natural to modify our posting level once we are out of immediate danger and are continuing with the daily business of our lives. But I've come to know and love the women on this site and don't think it's something that I will just drop. I also feel an obligation to new women on the site, to help and support them the way I was helped and supported.

    Sure, I think a lot of people leave. And that's all natural and good, but I feel that having a core group of long-term survivors on here is so important. I know that some people have come back after many years hiatus. Maybe they felt the need to give back; maybe they were still dealing with the legacy of cancer. Probably both.

    Thanks for the nice discussion!

    Mimi

    One more reason I am glad I stayed....
    I was dx'd in 2003~and in 2006 I was honored, humbled and excited to represent CSN in Washington DC! Not only were we 10,000 strong,with all 50 states and territories represented, we from CSN were an "elite" group as it were~ we had our own booth and site from CSN! Greta had a sign which we carried as we did Relay For Life laps around the reflecting pool. The sign had our Usernames on it, and people came up to us asking, for example, "Which one is Chenheart?" They knew our names from chatting and they wanted to hugs us!
    It was at that very event that I met our own KathiM! She is everything and more than she is here on the boards ! An amazing, spitfire of a passionate woman! No surprise there!

    When the sun went down we marched, 10,000 of us, with luminarias 7 deep around the reflecting pool, to the strains of Amazing Grace played by a bagpiper, as puple spotlights criss-crossed the sky.

    Oh yeah~ we stayed in a quaint hotel in DC and got to have cocktails and laughs galore in the evenings at the hotel bar with our fellow-CSN'r and the ACS staff who became our friends.

    AND, we went to a "meet and greet" where a pretty much then unknown senator from Illinois, named Barak Obama spoke so eloquently about losing his mama to the beast and vowing to fight for health care~ imagine that!

    So, perhaps selfishly I am still here: If I leave, what are the chances I would be invited to something as incredible as that again?? LOL Some "once in a lifetimes" things I would love to have repeated!!

    Hugs,
    Chen♥
  • KathiM
    KathiM Member Posts: 8,028 Member
    #70
    chenheart said:

    One more reason I am glad I stayed....
    I was dx'd in 2003~and in 2006 I was honored, humbled and excited to represent CSN in Washington DC! Not only were we 10,000 strong,with all 50 states and territories represented, we from CSN were an "elite" group as it were~ we had our own booth and site from CSN! Greta had a sign which we carried as we did Relay For Life laps around the reflecting pool. The sign had our Usernames on it, and people came up to us asking, for example, "Which one is Chenheart?" They knew our names from chatting and they wanted to hugs us!
    It was at that very event that I met our own KathiM! She is everything and more than she is here on the boards ! An amazing, spitfire of a passionate woman! No surprise there!

    When the sun went down we marched, 10,000 of us, with luminarias 7 deep around the reflecting pool, to the strains of Amazing Grace played by a bagpiper, as puple spotlights criss-crossed the sky.

    Oh yeah~ we stayed in a quaint hotel in DC and got to have cocktails and laughs galore in the evenings at the hotel bar with our fellow-CSN'r and the ACS staff who became our friends.

    AND, we went to a "meet and greet" where a pretty much then unknown senator from Illinois, named Barak Obama spoke so eloquently about losing his mama to the beast and vowing to fight for health care~ imagine that!

    So, perhaps selfishly I am still here: If I leave, what are the chances I would be invited to something as incredible as that again?? LOL Some "once in a lifetimes" things I would love to have repeated!!

    Hugs,
    Chen♥

    Wow, chen....I had forgotten....
    We DID hear Obama!!! Must have been the shooters that Coug insisted we have...lol!!!

    Thank you, dearheart, for the complements and the memories. I was a volunteer Legislative Ambassador for ACS from California...it was the biggest Relay for Life I have ever seen!!!

    But one of the BIG reasons I stay is this amazing woman who posts regularly here. Tirelessly encouraging the 'newbies', consoling the rediagnosed, and offering hope to all. She is selfless in her giving, and willing to step up to any request. This, of course, is my dear friend and sister Claudia...

    Hugs, Kathi
  • lynn1950
    lynn1950 Member Posts: 2,570
    #71
    KathiM said:

    Wow, chen....I had forgotten....
    We DID hear Obama!!! Must have been the shooters that Coug insisted we have...lol!!!

    Thank you, dearheart, for the complements and the memories. I was a volunteer Legislative Ambassador for ACS from California...it was the biggest Relay for Life I have ever seen!!!

    But one of the BIG reasons I stay is this amazing woman who posts regularly here. Tirelessly encouraging the 'newbies', consoling the rediagnosed, and offering hope to all. She is selfless in her giving, and willing to step up to any request. This, of course, is my dear friend and sister Claudia...

    Hugs, Kathi

    It is just a kick to learn
    It is just a kick to learn that you two "old timers" are fellow partners in crime (fighting the crime of cancer). Love you guys! xoxoxoxo Lynn
  • chenheart
    chenheart Member Posts: 5,159
    #72
    lynn1950 said:

    It is just a kick to learn
    It is just a kick to learn that you two "old timers" are fellow partners in crime (fighting the crime of cancer). Love you guys! xoxoxoxo Lynn

    Is it alright if KathiM and
    Is it alright if KathiM and I are "long-timers" instead of "old-timers?" Just asking! LOL I am glad you are getting a kick out of things; another reason for staying on the boards, huh? Living vicariously through the mis-adventures of Kathi and Claudia!!! LOL

    Hugs,
    Chen♥
  • mimivac
    mimivac Member Posts: 2,143 Member
    #73
    chenheart said:

    Is it alright if KathiM and
    Is it alright if KathiM and I are "long-timers" instead of "old-timers?" Just asking! LOL I am glad you are getting a kick out of things; another reason for staying on the boards, huh? Living vicariously through the mis-adventures of Kathi and Claudia!!! LOL

    Hugs,
    Chen♥

    How about good-timers?!
    Because we know how you two like to laugh it up and have a good time. LOL.

    Mimi
  • fauxma
    fauxma Member Posts: 3,577 Member
    #74
    chenheart said:

    Is it alright if KathiM and
    Is it alright if KathiM and I are "long-timers" instead of "old-timers?" Just asking! LOL I am glad you are getting a kick out of things; another reason for staying on the boards, huh? Living vicariously through the mis-adventures of Kathi and Claudia!!! LOL

    Hugs,
    Chen♥

    I think that many stay on
    I think that many stay on the board because when they were lost in the sea of cancer, this board was a safe harbor. I dropped anchor here and I knew that I was no longer adrift and alone on an open sea. Some days I set sail and journey out, but I know that my harbor is here for me to return to whenever I need it.
    Stef
  • lynn1950
    lynn1950 Member Posts: 2,570
    #75
    chenheart said:

    Is it alright if KathiM and
    Is it alright if KathiM and I are "long-timers" instead of "old-timers?" Just asking! LOL I am glad you are getting a kick out of things; another reason for staying on the boards, huh? Living vicariously through the mis-adventures of Kathi and Claudia!!! LOL

    Hugs,
    Chen♥

    Ouch! How thoughtless of
    Ouch! How thoughtless of me. "Long-timers" is fine with me; just stay that way. xoxoxo Lynn
  • susie09
    susie09 Member Posts: 2,930
    #76
    lynn1950 said:

    Ouch! How thoughtless of
    Ouch! How thoughtless of me. "Long-timers" is fine with me; just stay that way. xoxoxo Lynn

    Prayers and Support for Judy
    I think the answer today is very clear. We are here to support one another. And by that, I mean that Judy needs all of our support, kind words and prayers today for her great grandson Casey.

    ♠♣ Susie ♠♣
  • KathiM
    KathiM Member Posts: 8,028 Member
    #77
    chenheart said:

    Is it alright if KathiM and
    Is it alright if KathiM and I are "long-timers" instead of "old-timers?" Just asking! LOL I am glad you are getting a kick out of things; another reason for staying on the boards, huh? Living vicariously through the mis-adventures of Kathi and Claudia!!! LOL

    Hugs,
    Chen♥

    My fault.....
    I said old timer above....rofl!

    Actually, I am proud to tell my age...and I finish with, "and I was supposed to be dead 4 years ago...so every year is a great gift!"

    Hugs to all! Kathi
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    #78
    KathiM said:

    My fault.....
    I said old timer above....rofl!

    Actually, I am proud to tell my age...and I finish with, "and I was supposed to be dead 4 years ago...so every year is a great gift!"

    Hugs to all! Kathi

    For Judy
    I agree Susie! Today is support for Judy and her family. My prayers go out to you Judy!

    Debby
  • xskeetshooter
    xskeetshooter Member Posts: 169
    #79
    wow
    look at all the replys/ never seen that many lol good question
  • New Flower
    New Flower Member Posts: 4,294
    #80
    xskeetshooter said:

    wow
    look at all the replys/ never seen that many lol good question

    I came across this thread
    That was an excellent question. I thought you might enjoy reading it
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #81
    New Flower said:

    I came across this thread
    That was an excellent question. I thought you might enjoy reading it

    Thank you -- Olga ..
    While I was an member during this time, I do not recall seeing this post --

    Excellent reading ....



    Vicki Sam

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