CSN Login
Members Online: 15

Leaving..................

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

It is with a sad ♥ that I write this, but, I wanted to let everyone know what is going on incase they notice thay I and many others are not here and posting anymore on this site.  We have left this site and we've started a new bc discussion group that we all love.  It is like the "old" CSN, which was wonderful!  I know some of you old timers remember how great it was!

This site used to be so helpful, everyone so loving and you could get great advice, support, information and even a chuckle now and then.  But, it has changed, changed drastically.  Now people are being bullied, being attacked verbally, told what they can post and not post by other members, told to not pull up old posts or to stop posting to someone because they won't reply and the poor newbies posts just get lost with very little help anymore, as some oldies just seem to just try and seek attention constantly for themselves. I was really shocked lately by some of the mean comments made to other sisters..really shocked.  I hope those that did that take a good hard look at themselves. It's a shame, a real shame.

I used to love this site and stayed to help others, but, the other issues have made me and many others feel this isn't for us anymore so we formed our new group that is what it should be about.

I wish all of you the best, and, I am sure I speak for the others that have followed with me.  A lifetime of NED is my ultimate wish for all of you.

Hugs, Kylez

BlownAway60's picture
BlownAway60
Posts: 833
Joined: Nov 2009

Where did you go??????

ladyg's picture
ladyg
Posts: 1577
Joined: Apr 2010

pm those of us who want to go there too.

Hugs,

Georgia

bluewillo
Posts: 20
Joined: Aug 2013

This site is so unreliable!

Double Whammy's picture
Double Whammy
Posts: 2334
Joined: Jun 2010

I am furious about your post, Kylez.  I've been here for over 3 years and there have often been ups and downs and disagreements.   Breast cancer is an emotional experience.   I sorely miss many of the older members and the comraderie that we once had.  Members come and go and some members die.  But there will always be new members finding this site who will come hre for kindness, hope, and information and I hope some of us will not jump ship when the waters get rough from time to time so we can be here for them. 

And now I suppose I'm being mean spiritied . . . and starting another attack, but I feel really insulted and abandoned. 

Suzanne

camul's picture
camul
Posts: 2122
Joined: Dec 2010

just stating your opinion and feelings which is what a support group does!  When I first read the post earlier today, I felt insulted.  I felt I knew what prompted it.  Thought about it and decided that each of us has a choice, and I was going to stay because, I need it, I like it, and love all the amazing people I have met here, and even though I am where I am at medically, I still feel I want to be here and share. I know that I am needed by the pm.s, that I receive...  and I know that if I have questions, I can usually get them answered by reading old posts! 

And I like all the prayers on this board, prayers help!  Suzanne, you are very much appreciated here. 

June Bugs
Posts: 169
Joined: May 2013

Thanks Kylez for letting us know and I wish you and the other members all the best.  I would like to join your new forum also and I hope you can let me know how to join.  I have sent you my email address if you prefer to contact me there.  Hope to hear from you soon. I miss you on here.

Hugs, June

Lynne P
Posts: 165
Joined: May 2013

Yes please, me too Kylez.  I totally agree with what you wrote.

Bella Luna's picture
Bella Luna
Posts: 1575
Joined: Aug 2009

I admit I don't know what happened on the blogs, but I know one thing for sure:  This is not a perfect world.  This website serves a public good for survivors needing support, education, understanding, and, yes, Pink Love.  

Being diagnosed with cancer is what brought us together, but it Does Not define us.  Wishing you all well as you move forward with life.

 

New Flower
Posts: 4100
Joined: Aug 2009

 Hi Kylez

i am really sorry that you feel this way ...this site is us, survivors who come here, It is a collective treasure. We all are responsible for the quality of information, education, love and support we have been giving each other, newbies, spouses and even children of survivors. If newbie's post left without attention both you and I are responsible for it. If a survivor has been bullied or did not find an answer we all should be held accountable for it. If a bright and carrying sister passed away, somebody should step in and provide support. We are all unique in many ways, however it will be difficult to fill Claudia's or Linda's shoes. As well as to replace voices of all our Pink Angels whom we lost over the last several years.

I do know why I do not post as much as I would like to. What is about you others who left with you? Ladies Why you did not provide enough support and knowledge? BTW I do like old posts too they usually bring a lot of knowledge and memories.

i do wish you lifetime with NED and the best in your life beyond cancer. I am also happy that you were able to move on as a group and find good home and technical support. Of course we will miss you.

You sister since 2009

New Flower

camul's picture
camul
Posts: 2122
Joined: Dec 2010

However, I think this site has been so valuable.  I have learned so much, and hopefully, my knowledge has also helped others.  Of course there are going to be differences from time to time, after all, you do not go through this experience and get to the other side without gaining strengh.  Get a room full of strong women (I am not including the men in this, as I don't believe they have been involved in any of the disagreements), and you will have differing opinions, which is what makes this site so special. 

We have all gone through bc, but that does not mean that we will all have the same experiences.  For some, it has been an easier ride.  This will always be the case.  Meds will work better for some than others, some may have a stronger support system at home, have better doctors,  may be more informed, or come to ned and remain there for their lifetime.  We do not know what financial situations some of us are in, as well as how they are treated with cancer on thier jobs.  Many lose jobs in the name of 'something else' when they know perfectly well that it was the cancer that was really behind it.  Sometimes we have children, adult or still at home with issues or special needs.  Some have lost homes, friendships and so many have had parents, other family members, or close friends die while they are dealing with this disease.  And some of us have children, family and friends who are also going through cancers, other medical issues, addictions etc... 

All of this being said, some may not be as adept in expressing their feelings. What is meant to be supportive may come off as harsh... which usually is not anyones intention.  And truly, there will always be a few who are not nice, and may not know how to show empathy for others.  They may always believe that the way they think or feel is the only right way.

In all reality though, probably 99.9% of us who are here come to this board because we need the support, or have needed it at one time and will stick around to try give back.  Hurtful comments have been posted when others do not agree with them, but overall in the time I have been here, that has not been too often, and it came from the same people.  Who knows what they were going through at the time, or being brutally honest may just be their way. 

Overall, This site has been amazing for me. I have learned so much from everyone.  Some I have just clicked with, others not so much, but I only wish the best for each and everyone.  I am always excited when some move on, but stop in with updates!  I love the good news, funny stories, and have laughed and cried through so many posts. 

It is always rough with cancer because the nature of the disease is that people die!  Seems like Moopy was the first for me on here, and there have been many remarkable women, both young and more mature since then, but everyone of them touched my life in a positive way.  

It is the differences and the willingness of so many to share their stories that has helped get us through rough times, and being human, life is not always sugar and spice.  I wish all of you who have decided that this site is no longer what you want it to be, a lifetime of NED.  I haven't noticed a change, or 'cliques', mainly that the board has changed with losing some amazing women who were awesome contributors, and already we have others who are really standing out and amazing, as the radiologist says, too numourous to count. We unfortunately (if they are here it is because they have cancer) get so many new members, and each is special and everyone who posts on this board contributes to our knowledge and hopefully teaches us to respect others opinions (we do not have to agree, just respond respectfully), and I hope that we continue to have empathy for those going through a rough time.  I love how many new members are so active!

Sorry this ran on, but there are so many wonderful people here, that I would hate to have new members feel that this is not a 'support group', because there is so much love and support here, and so many loving women, men, both survivors and caregivers. 

Kylez, I am so sorry that you feel this and felt a need to leave.  I wish you and all that follow you the best and that you remain NED forever!

TraciInLA's picture
TraciInLA
Posts: 1858
Joined: Jul 2009

Suzanne, while I don't feel as angry as you do, I agree very much with what you've said.

When I was going through chemo, and radiation, starting Tamoxifen, fighting to recover from treatment, and freaking out through every mammogram...the folks on this site -- many of you who are still here -- were here for me day after day, year after year, to support me, get angry with me, and share your journey with me.

I still need your support sometimes, and it's very possible that someday I may have to go through it all over again, and will need you even more. And sometimes one of you has a question I can answer, or I can share a story that may help, or a silly joke to make you smile when you need it. Smile  

Some folks feel this board isn't the right place for them anymore, and everyone has to do what's right for them.  But for me -- this is my community.  I believe a "community" is someplace where you stick around and try to contribute in whatever way you can, even when the going gets rough.  I believe that what I get from this community is well worth the effort.  I'm not going anywhere.

Traci

 

 

 

 

coco2008's picture
coco2008
Posts: 406
Joined: May 2013

I've read some comments and opinions on this site that make me uncomfortable and that I don't agree with.  Then again I haven't read anywhere on this site that we all had to agree with everyone else.  Each person's comments and experiences are their personal thoughts and history.  Often we may get emotional, but look what we are going through.  No one (in my opinion) is trying to hurt or put someone else down.  The written word can easily be misinterpreted due to missing gestures and voice inflictions.  We need to be gentle with each other.

I don't know about everyone on this site, but I would not have been able to make it through the last several months without the support and advice from sisters on this site.

Personally, I would like to thank everyone on this site for their openness and willingness to share their experiences in fighting this cruel disease.  It takes guts.

I'm sorry some feel hurt or offended and feel they must go elsewhere for support.  My prayers go with you and I hope you find what you need.

For those who are staying, I give my heart-felt thanks.

Sandy

sea60's picture
sea60
Posts: 2601
Joined: May 2010

and I agree. I joined the boards "after" I went through my diagnosis, treatment and many surgeries. I think I was finishing up Tamoxifen. But although I was "post" cancer, I found this board so comforting with all the advice, opinions, shared feelings and humorous jokes. We are all unique and different so it's expected to have a few disagreements or clashing once in awhile. But I'd like to think that taking consideration the fragility of life and how precious it is, we don't sweat the small, trivial stuff. We can overlook and see that the big picture is that we are all here at different stages of our walks, helping when we can, praying and wishing one another well.

I'll miss your posts and continue to pray for all my pink sisters daily.

Love, peace and hugs,

Sylvia

Clementine_P's picture
Clementine_P
Posts: 390
Joined: Feb 2011

You both took the words right out if my mouth. I agree completely. I'm sticking around and hope that I can contribute and help others as I have been helped many times. 

Clementine

fauxma's picture
fauxma
Posts: 3543
Joined: Dec 2008

I'm staying too.  As Groucho Marx said, I wouldn't join any club that would have me as a member. LOL  Seriously I wish Kylez and any of the others that are leaving well and NED and all good things. 

For me, this group is a family and we sqabble and disagree but we make up and the bottom line is that we care about each other and that we support, advise, and welcome and well all that good families do.  I think as others said that with posts it is easy to misinterpret meanings.  I also think it is okay to have diverse opinions and to express them.  I am sorry that some feel they need to leave and start a new board.  I hope that they do well and have the type of board that they want.  I do think the risk is that eventually they will have conflicting opinions and posts that will be misunderstood there.  I think it is enivitable that this will occur.  I hope they can find a way to handle it.   I think that the good this site provides outweighs any negatives 1000 to 1, but that is just my opinion.  I love this board and all who dwell within it. 

Again, good life, good health and good wishes to all who are moving on.  Change can be good.

Stef

Marcia527's picture
Marcia527
Posts: 2734
Joined: Jul 2006

Not posting much so not sure what happened. My biggest problem is I've forgot a lot of details. I was diagnose 2003. I've seen conflicts from time to time. I've had Parkinsons since 2006. having problems of memory. But I guess I'll have to make a better effort. If some want to leave than that is their choIce. We all have to decide what support is most helpful. Some can find help in more than one site. It's all been done before. 

Did I tell you I forget sometimes? Lol. Sometimes you just have to laugh. 

 

 

Cheryl S
Posts: 82
Joined: Jun 2013

Kylez, please pm me too so I can come too.

Thanks, Cheryl

CypressCynthia's picture
CypressCynthia
Posts: 4015
Joined: Oct 2009

I guess I am truly clueless because I don't even know what is going on.  I sometimes read posts that I don't agree with, but I just move on.  I am staying but I wish you the very best and hope you come back!

TraciInLA's picture
TraciInLA
Posts: 1858
Joined: Jul 2009

The posts here asking how to join the new online discussion group Kylez mentions make me sad, because they remind me of what's so great -- and yes, sometimes so frustrating -- about this board.  

This board is open to everyone.  You don't have to be invited, you don't have to be one of the cool kids, you don't have to know any super secret password.  And we're easy to find, through the American Cancer Society site.

And that means we end up with spam, with occasional full-on imposters, and with cranky comments from fragile human beings who have cancer and who are making their way through hell as best they can.

Oh, and -- we have to put up with Stef, too...LaughingLaughingLaughing

And, because this board is open to everyone, we also end up with all of you: the warm welcomes, huge cyberhugs, crazy trips on the Pink Bus, laughing and crying together that has kept me going more times than I can count.  

16th-century martyr Francis David is said to have written: We need not think alike to love alike.  I don't think he had breast cancer, and I doubt he'd ever posted on a website...nonetheless, he knew what he was talking about.

Traci

 

 

Doe1504
Posts: 94
Joined: May 2013

Everyone is entitled to voice their concerns/problems/questions here. I am happy with the comments I get on here and I pray for all the pink sisters every night. I see posts that I don't always agree with, but, that's ok. I am happy here and so appreciative for the comments, information and advice I get. Thank you all and I will not be going any where.

Dolores

fauxma's picture
fauxma
Posts: 3543
Joined: Dec 2008

I agree with Traci that it is sad to see people leave our board.  She really summed up the perks and the drawbacks (with the exception of me who we all know is one heck of a great perk LOL) of this board as well.  I draw so much from everyone's posts and although I don't write as often as I use to I do read all the posts.  i don't always agree with everything or everyone and some posts bother me but I read them and respect that they are the views and opinions of the poster and don't have to match my viewpoint.  Someone else might find them the perfect posts. 

My hope is that while trying new things (and new things are great to try) those that are considering leaving will continue to read through our board and write when they can and want and use both boards to broaden their outlook and get multiple opinions and support.

And again, best to all that leave or remain.  I love you all to pieces and for the last 5 years I have loved, lived and learned from you all.

Stef

PS  One example of what I love about this board is Traci and her clever wit but don't tell her cause it will just go to her head.    SHHH !!!

bluewillo
Posts: 20
Joined: Aug 2013

I agree. My ONLY problem with this board is the technology. I've been here for, like, 3 years and never had an unkind word sent my way. I joined after I did all the "fun stuff" (mast, chemo, rads) so I never called for the pink bus (and boy, am I glad! You guys are ROWDY! LOL!)

However, this board has been a treasure trove of information, and not all of it about breast cancer. Sometimes, it has made me step outside myself, and offer advice to someone who is hurting. Other times, it's just plain silly. But always, it's the place I go when I need to know something, again, cancer or other.

So, today, I had a PET scan. For 2 years, I've been kinda mad at my onc doc for not ordering an MRI or a PET scan...cos he can't promise me that the cancer was all gone (13 or so bad lymph nodes out of 15). So Weds., he orders a "bone scan". So I tell work I need today off. They think it's just a bone density test, and why would I need a whole day for that. I say no, it's the kind where they inject something in me and then subject me to an hour of torture in a machine (I can't stand repetitive motions...like jiggling, and repetitive noises, like that machine makes) So, my DIL tells me THAT'S a PET scan!!!!!!!! So, not mad at oncdoc anymore. Better explanation for work (what, do I need a note from my mom???).

And Traci, if you check on FaceBook, I bet Francis David has a website! LOL, just kidding.

I like this place. We really should do something about the wallpaper, tho. And I think the kitchen needs cleaning.....

tufi000's picture
tufi000
Posts: 463
Joined: Jun 2005

Cancer doesn't just pick perfect people to attack.

Whether I agree with someone or not, it's not a big deal because the big deal is why we are all here.

This will always be the place for me even though sometimes I have to take a break. It feels good to know its there and I don't find it necessary to love everyone and I am grateful for the friends I have made and the comfort received.

You are not the first to leave with their "group" and I wish you well.

Josie21
Posts: 359
Joined: Nov 2012

i came here almost four years after my diagnosis and treatments.  I wish to God I knew about it at the beginning.  This site helps me every day.  Everyone around me has moved past my breast cancer, but I have not.  Friends and family think I am cured, but I only hope and pray that one of those nasty cells didn't get away.  Only the men and women on this site understand.  I have not met any of you, but I love you all because we are all in this together.  I am a little confused as to why some have left the site, but to each his own.  I will say that I sense (and I may be wrong) that some want the site to be more positive, but I personally get strength from straight answers.  Every day I walk around trying to be Polly positive to those around me, but it's nice to know that there is a place that I can share my true feelings.  Cancer is horrible!  They may try to dress it up with pretty colored ribbons, but In the long run, only those who have it understand what it is all about.  To those pink sisters who are leaving, I wish you a lifetime of NED, but for me I will always be here reading and sharing when I think I can help.  Many people have lost very dear friends on this site recently, and I truly believe it is a time to pull together, not pull apart. We are all in this together!

Hugs,

Ginny

Lynn Smith
Posts: 1265
Joined: Mar 2011

I am like Cypress Cynthia.I am clueless and don't know what happened.Ive been on the board a few years.I've learned alot.Im not as knowlegeable as some of our other Pink Sisters who've been through alot more than me.Chemo, radiation, recurrences etc.I've learned from them.This will help if I'm ever dx with a much more advanced cancer or my breast cancer returns,So if I seem a little dumb at times I didnt have chemo radiation and all that so many of you've been through but it hard living with cancer no matter what Stage.We go through alot of emotions.Like now for me,I have tears in my eyes.

I didn't see the post.In the past there have been other posts that some haven't liked.Still I didn't see those either.I guess they were deleted.I try my best to come on Board at least once a day but I do get busy.I've cried tears for those who've passed,It another loss to all of us.It hurts.Just like those who've chose to leave us.  

I don't know who is leaving but we'll miss you.Wishing all of us stay cancer free and live long lives,

Cancer has changed my life forever,My life will never be the same.None of us will ever be the same

Lynn Smith  

bluewillo
Posts: 20
Joined: Aug 2013

I totally understand and feel the same way, Ginny. Waiting for the other foot to drop really takes a toll on one. I try to limit those feelings.

ladyg's picture
ladyg
Posts: 1577
Joined: Apr 2010

I would just like to clarify that when I asked to find out where they were going so I could go there too I did not intend to leave this site. I just wanted to see what kind of site they were going to have and if there would be anyone there who would also need help and support.

I have been on this site since I was first dx'd and received a lot of support, encouragement and information. I don't always post a lot but only when I think I have something useful to say.

Hugs,

Georgia 

ladyg's picture
ladyg
Posts: 1577
Joined: Apr 2010

Hugs,

Georgia 

fauxma's picture
fauxma
Posts: 3543
Joined: Dec 2008

I think there may be many on this board are on more than one site. I can see where some would like to be on both Kylez new site and this one.  I don't know who left other than Kylez.   And there may some that left and have returned or some that left here completely.   I think as long as we are helping people wherever we are that it is all good.   I am sure that all of us hope that we can reach out and touch someone and also that we get the support and assistance we need.  It is a very give and take relationship and the more boards there are out there helping the better.

I feel that they are doing their part to help others in their journey and that is what is important. 

Stef 

SIROD's picture
SIROD
Posts: 2201
Joined: Jun 2010

I read 3 other boards and sometimes reply on them.  This is the one I do post the most.  The two that  I read are for those who have stage IV only and since that is my stage, I often learn from them.  The other, I joined to learn more about them and in the process became friends with the members.  They have a Facebook page that most go to, I never asked to join and no one has invited me.  They have always been there to support me when I need them and in turn I give my advise from my experience with this disease.

One place recently had the same thing happen, people didn't like it and decided to move to a special close Facebook page.  Some of the people have left that board and formed their own group.  You can only be part of it, if the members agree to let you in.   I don't belong to it and have no intentions on doing so. 

Breast cancer has a lot of stages and reaching out and touching someone as Stef said is the goal in helping other in their journey with this awful disease is what is important.  We all have different needs.

Best

Doris

 

RozHopkins
Posts: 476
Joined: Dec 2010

I am staying.  Sorry havent seen much conflict over las three years.  We can't all agree about everything, that's life.  If I have offended anyone please tell me so.  I don't think I have as dont post too frequently.  I need this site and used it a great deal for support and will be looking in for a long time to come.  I am not religious but totally am respectful of the many who are, that is the only difference between myself and some of our friends here.   So, unsure of problems but the more sites the better.  I wouldn't care for a board where I have to ask to be friended though sometimes I wonder if unwanted eyes read our comments.  Nothing is perfect right.......

Pink Rose
Posts: 495
Joined: Nov 2012

Kylez, I have seen what you referred to and it really made me sad.  I don't believe that any of us should ever write/speak to another pink sister in any verbally abusive manner, no matter what.

If you can, would you please let me know your site?  Thank you!

Rose

Viking51's picture
Viking51
Posts: 21
Joined: Sep 2013

Please include me in on your new site you are starting. I am 34 and just lost my mom (best friend) Cheryl to 4th stage Cervical Cancer. I was diagnosed while she was sick with 1st stage and had a LEEP. Why don't all Cancer survivors stick together. I have done lots of research I want to share and would love to get feedback from other survivors. 

Viking51's picture
Viking51
Posts: 21
Joined: Sep 2013

By the way I have not limited myself to just cervical cancer. I want to cure all cancer. The pic is my mom is the middle with her friend Dawn who had breast cancer and her other friend. 

Double Whammy's picture
Double Whammy
Posts: 2334
Joined: Jun 2010

And the value of this group of women who come and go for whatever reason.  Viking 51 I believe you did find a good group and we can only continue that if we continue.

Maybe it's time to move on from this topic and keep to the agenda of helping each other in spite of our differences.

Suzanne

Carlee
Posts: 100
Joined: Jul 2013

I did see what you're referring too Kylez and at the time, it really upset me.  I did find a lot of good support here and hated to see the anger that some wrote with and even still are.  I would like to become a member of your new site and to get help and support there and hopefully return it to others too.  You can message me on here.

Carlee

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network