New Long-Term Survivors Board
I'm not active on this site much any more since the chemo options, side effects, and surgery options are much different than I had in 2004 when I started my fight.
I also feel that it is important for "newbies" to meet others similar to their timelines and circumstances so you can bond and support each other and ultimately become dear friends. The group I befriended here in 2004 and 2005 will forever have a very special place in my heart both those that have had successes as well as those that are "saving" me a seat upstairs. To me that is just as an important part of our journeys as our treatment plans, true friends that have "been there and done that" along with you. A special bond like no other.
But today @ 6 years NED (fingers crossed for upcoming scope) I feel guilty starting a thread about an issue I may be having while so many are fighting the **** cells. It feels trival and selfish and even if I did, it would be on the second page within 24 hours. I for one will still come here several times a week and "lurk" and help when possible especially sharing my continued good fortune (fingers crossed) and other pertinent info.
Hopefully those who talked about this at CP8 will chime in too. My opinion is that this board will always be the support board while the new one becomes more of a reference board since it is open to all long term cancer survivors.
Thanks to Greta and her team!
Lisa P.
Comments
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don't leave us!
I'm glad to hear you say you will still come to this board, because one of the most comforting things I read when I first started on this board was somebody saying they were 5 year survivors or 6 or even more. We value our "more senior" members and don't want to lose them altogether.
*hugs*
Gail0 -
Please don't go away
I for one need people like you to stay active on this board. I am a "newbie" and while I am just beginning to converse with a few on here it is success stories like yours that give me the hope and inspiration I come to this board for. I clicked on your bio and read you were diagnosed with stage IV with liver mets over 4 years ago, and now you are NED! Not only would I not think it trivial to read of issue that are non live threatening, I think it is awesome that you are at a point where the "small" things matter again. So maybe you are not the most up to date on chemo options, surgery options, side effects, who cares! There are plenty of others on here that are up to date on the latest and greatest options and they are so generous to share their knowledge with us newbies. We need them and I want to bond and become friends with them, but I need you too! I need to be able to read a post and click on the bio and say "Hey, she was diagnosed over 4 years ago and she is NED, and look at all the advancements since then, if she can beat it so can my sister!" Remember this is a support board not just an information board, and you Lisa can offer support that many others cannot. Please stay close by.
God bless and keep you cancer free,
Cindy0 -
Don't feel guilty!
Hi Lisa,
Thanks for letting us know about the new board. I totally understand why it would be started + hope someday to be a participant on it! I am glad you still plan to contribute to this board; I would miss you so much if you didn't. Since I have been on this forum I have looked to you as an example of what could happen, if I am fortunate. I admire you, + the fight you have fought + always look forward to your posts. I hope the new board is everything it should be, to provide comradeship for people who who have been in this battle for awhile or have won the battle.0 -
Have to thank you.....
Lisa,
I have to say thank you, to you, Spongee Bob, Katy, and a whole lot more that I can't think of off the top of my head, some of them have passed now.
I came here almost five years ago scared out of my wits by cancer. My husband Bill was just dx'd stage IV. Of course the first thing I had done was to read those stats, not knowing at that time they were already outdated. You all made me feel welcome even though I was just a caregiver. You answered my questions and made suggestions, so much so that our onc was surprised that I knew about the things she was talking about.
Bill is still fighting, five years later, and 3 years longer then they told us he would.
We are still in fight mode....
So as you move on to the other board please do come back and check in from time to time, you and the rest have so much to offer!
Thanks for being there when I needed you!
Hugs,
Sue0 -
Good work, Lisa!
I agree with others, tho (after being scolded about leaving), that we long-termers offer encouragement to keep fighting the fight to new people that come on....I remember this was so, 5 years ago for me (I lurked for 6 months...I celebrate 6 years the day after Thanksgiving....)
The new board sounds exciting! I will be interested to see the input from survivors of other cancers, just to compare notes...
Thank you for your work on this...
Hugs, Kathi0 -
There is no better medicine to me thanKathiM said:Good work, Lisa!
I agree with others, tho (after being scolded about leaving), that we long-termers offer encouragement to keep fighting the fight to new people that come on....I remember this was so, 5 years ago for me (I lurked for 6 months...I celebrate 6 years the day after Thanksgiving....)
The new board sounds exciting! I will be interested to see the input from survivors of other cancers, just to compare notes...
Thank you for your work on this...
Hugs, Kathi
people like you, that's what l was searching when l first came in to this board!
We need long term survivors!
Hugs.0 -
One of the firstKathiM said:Good work, Lisa!
I agree with others, tho (after being scolded about leaving), that we long-termers offer encouragement to keep fighting the fight to new people that come on....I remember this was so, 5 years ago for me (I lurked for 6 months...I celebrate 6 years the day after Thanksgiving....)
The new board sounds exciting! I will be interested to see the input from survivors of other cancers, just to compare notes...
Thank you for your work on this...
Hugs, Kathi
Kathi,
Some days I think I have chemo brain. Yours is one of the names I forgot, you were very helpfull to me!
Hugs,
Sue0 -
Hey Lisa (from an Old Timer)
I think ti's great to have a separate forum for those who have either been dealing with or survived cancer for like 5 years or more. We are no better than anyone else but I feel there is a big difference between dealing with this now (it will be 7 years since my dx this coming February) and when I was 1 or 2 years into my cancer. I Googled the topic and saw that the National Cancer Institute considers 5 years as "Long Term".
I find that I post less on this forum because I can't keep answering the same newbie questions, I am a long time out from being a newbie. There are others who are closer to that point who can carry that torch better than I can. At times I know I have useful input for this forum and will continue to post here.
You make so many good points Lisa about how different it is dealing with cancer for the long haul. I totally agree with you.
Congrats on your 6 years of Nedness too.
-phil0 -
Thank you allPhillieG said:Hey Lisa (from an Old Timer)
I think ti's great to have a separate forum for those who have either been dealing with or survived cancer for like 5 years or more. We are no better than anyone else but I feel there is a big difference between dealing with this now (it will be 7 years since my dx this coming February) and when I was 1 or 2 years into my cancer. I Googled the topic and saw that the National Cancer Institute considers 5 years as "Long Term".
I find that I post less on this forum because I can't keep answering the same newbie questions, I am a long time out from being a newbie. There are others who are closer to that point who can carry that torch better than I can. At times I know I have useful input for this forum and will continue to post here.
You make so many good points Lisa about how different it is dealing with cancer for the long haul. I totally agree with you.
Congrats on your 6 years of Nedness too.
-phil
I guess I have some mixed emotions about all this. I am so proud that we have long term survivors and that is one of the major things that helps me have hope.We have had so many deaths in the time I have been a member and it gets very depressing some times...BUT, we have always had you guys to look at and say, "Hey, it IS possible to beat this crap!" That within itself has been a blessing of encouragement to me.
Thanks to all of you long termers and please do keep up with us newbies.I hope the new board is a great success.
-Pat0 -
I agree with PAT!Jaylo969 said:Thank you all
I guess I have some mixed emotions about all this. I am so proud that we have long term survivors and that is one of the major things that helps me have hope.We have had so many deaths in the time I have been a member and it gets very depressing some times...BUT, we have always had you guys to look at and say, "Hey, it IS possible to beat this crap!" That within itself has been a blessing of encouragement to me.
Thanks to all of you long termers and please do keep up with us newbies.I hope the new board is a great success.
-Pat
this is cancer survivors network ,and that is what I was looking for first time I found this board,so please stay here ,you are the example for most of us this beast can be beatten! share both boards but don't let us alone!.0 -
No one is going anywhere
I will still come here read and comment when I can just like I have for almost 7 years.
Some of you are missing the point. The needs of long term survivors weren't being met here and instead of taking away from this great place, CSN gave us an alternative since other long time survivors with different cancers have said the same. This is still the only site specific to colorectal cancer and that will not change. I can't tell you how many old timers don't post here anymore and I hope this is a way to get them back to share their successes while they also get some benefits from it too.
You all are more then welcome to check out the site and see what it's all about. It is brand new so don't expect much yet.
This is a win/win for all of us. Catherine you are exactly right, the need for this kind of a board is HUGE!!! I wish I had a place like it to lurk, learn, and strive for 6 years ago. All I wanted was to be NED, now I want and need more, that's all. I hope each and every one of you reach that point in your journey.
Lisa P.0 -
Scoutyscouty said:No one is going anywhere
I will still come here read and comment when I can just like I have for almost 7 years.
Some of you are missing the point. The needs of long term survivors weren't being met here and instead of taking away from this great place, CSN gave us an alternative since other long time survivors with different cancers have said the same. This is still the only site specific to colorectal cancer and that will not change. I can't tell you how many old timers don't post here anymore and I hope this is a way to get them back to share their successes while they also get some benefits from it too.
You all are more then welcome to check out the site and see what it's all about. It is brand new so don't expect much yet.
This is a win/win for all of us. Catherine you are exactly right, the need for this kind of a board is HUGE!!! I wish I had a place like it to lurk, learn, and strive for 6 years ago. All I wanted was to be NED, now I want and need more, that's all. I hope each and every one of you reach that point in your journey.
Lisa P.
I hope you feel loved!0 -
Long Term Survivors Board
is a great idea. I'm sure that the needs are different. I've read on other boards questions by longer survivors that I just can't yet imagine the answers to. I can only hope to one day be a member. You guys are really appreciated here and do give us new comers hope. Thank you!0 -
Yes, you're crystal clear...scouty said:No one is going anywhere
I will still come here read and comment when I can just like I have for almost 7 years.
Some of you are missing the point. The needs of long term survivors weren't being met here and instead of taking away from this great place, CSN gave us an alternative since other long time survivors with different cancers have said the same. This is still the only site specific to colorectal cancer and that will not change. I can't tell you how many old timers don't post here anymore and I hope this is a way to get them back to share their successes while they also get some benefits from it too.
You all are more then welcome to check out the site and see what it's all about. It is brand new so don't expect much yet.
This is a win/win for all of us. Catherine you are exactly right, the need for this kind of a board is HUGE!!! I wish I had a place like it to lurk, learn, and strive for 6 years ago. All I wanted was to be NED, now I want and need more, that's all. I hope each and every one of you reach that point in your journey.
Lisa P.
but don't go.
;-)0 -
Whatever is necessary .....Lori-S said:Long Term Survivors Board
is a great idea. I'm sure that the needs are different. I've read on other boards questions by longer survivors that I just can't yet imagine the answers to. I can only hope to one day be a member. You guys are really appreciated here and do give us new comers hope. Thank you!
I too had personal reasons why our "Patron Patients" should stay, but I also believe that there will be a huge success in the amount of members that will show back up in the new board. Its kinda of like getting 10% off of your coffee at McDonalds, they have earned the right to a better chair, if you will. Its something that should be a sort of "Light at the end of the tunnel" for all newbies, that there is always hope. There should also be a graduation for anyone over the "5 Year" mark, for 5 years fighting in this mess is worth a medal. (and 10% off coffee).....It will be a place where the hustle and bustle will be a little less, and give them a place to reminiece and remember all of their old friends that have passed and friends that are still with us without all the hustle and bustle. God Bless each and everyone of you that have come this far and also for the ones that haven't, this will be two of the greatest boards on earth......Love to all, Buzz0 -
Needs + Wantsscouty said:No one is going anywhere
I will still come here read and comment when I can just like I have for almost 7 years.
Some of you are missing the point. The needs of long term survivors weren't being met here and instead of taking away from this great place, CSN gave us an alternative since other long time survivors with different cancers have said the same. This is still the only site specific to colorectal cancer and that will not change. I can't tell you how many old timers don't post here anymore and I hope this is a way to get them back to share their successes while they also get some benefits from it too.
You all are more then welcome to check out the site and see what it's all about. It is brand new so don't expect much yet.
This is a win/win for all of us. Catherine you are exactly right, the need for this kind of a board is HUGE!!! I wish I had a place like it to lurk, learn, and strive for 6 years ago. All I wanted was to be NED, now I want and need more, that's all. I hope each and every one of you reach that point in your journey.
Lisa P.
What I am seeing here are different sets of "needs" + "wants". The newer people to this board want/need success stories from long term survivors. The longer term survivors want to help us newer people but they also want + need a forum for issues that are more specific to them. The good news is these are not mutally exclusive goals. Long term survivors can still post on our forum. The reality is there are not a lot of long term survivors who currently do this on a regular basis. I am thinking with the new board, more long term survivors will actually post on that board + we will have more people to inspire us. The long term colon cancer survivors may actually pop on this board too. There is nothing to stop a newer survivor from visiting the new board for inspiration + even to understand better what some of the long term issues are. As far as a time designation to qualify, I suspect it may be different for different people. If someday I see some of my issues/questions as being more because I have been in treatment for so long, I would post something on the other board. I want to let you long term survivors know I am excited to you for this new board + my goal is to join you someday.0 -
The issue isn't "leaving"
Hi all -
If - God forbid - you were diagnosed with another cancer, you would probably participate in that board, right? That wouldn't mean you were leaving the CRC board - just joining another also.
Us long-termers are just joining another board. Some of us have been NED for years, others in treatment for years, others in-between. But when you have lived with cancer for X years (I deliberately say "X" - there is no magic number that makes you long term), you do, as Lisa says, start to have some different needs.
Please don't think of long term survivors as "leaving". We'll always be lurkers and sometimes will post (no change from the current situation) and you can always check out the other board - I suspect it will be slow to start. And we all live scan to scan, so we're all in that boat together.0 -
The issue isn't "leaving"
duplicate post - sorry0 -
Everywhere you go.....
I'll follow youuuuuuuu. LOL This song just popped in my head when I read your post, Scouty. Call me a stalker, but I'll be on the Long Term Survivor site lurking away. After all, stories like yours, John23, Emily, Liz, Phil, Ron and others here (at 1:50am, my brain can't remember all the names) were what gave me a glimmer of hope after we got the grim diagnosis and survival stats of my son's cancer and I came to the internet support sites seeking HOPE!
I think it's great that you all are working on a site for Long Term Survivors. You are so correct that at different stages in the cancer and survivorship journey, there are differents questions and needs that arise. I'm actually ELATED that the site is upcoming, as it will be "one stop shopping" for those newbies seeking encouragement, hope and a first hand account that it is possible to "slay the beast"!!!!!
All the best to you and the other long termers in this endevor.
Dee
PS: I'll be shooting you a PM soon. My baby boy is getting beat down by this chemo experience and we're in the process of discussing other options...so I'm coming to the "experts".0
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