From cautious remission to freedom... - Page 2

Jean · 06-30-2009, 08:45 PM

Dear Andi,
You are a very important part of our quilt.
You have fought this nasty disease long and bravely.
You certainly are an inspiration to many. You are such an old soul! Yikes.....

Abby, you can choose to not read a thread started by Andi, this is an open forum. Also, like any family, we all bring different things to the table, it's okay to pass.

Kind Regards,
jean

AbbyDawg · 06-30-2009, 11:03 PM

Quote:

Abby, you can choose to not read a thread started by Andi, this is an open forum. Also, like any family, we all bring different things to the table, it's okay to pass.

Kind Regards,
jean

I was warned by others if I vocally dissented I would be pushed off the forum. I passed along this website to many women in the beginning and then at times was embarrassed I had. And there was a big reason I did not pass it along to my oncologist, lest she'd think I had become one of the lemmings.

I've gotten kind emails of support, emails of agreement from those who don't want to be "outed" on the board, and then some who actually wrote and had the nerve to say I was only jealous of Andi's health and success. That's disgusting.

So, I'll take this as a "don't let the door hit you on your way out."

I don't have to choose to stay and be force fed saccharin at every turn, or be told if we spell it canser, it will help me win, I don't need to have Ram Das, Bill Moyers, positive thinking, and mind/body, burped all over me. And when someone new comes on here to ask for help or advice, I am sure I am not the only one that would like to see one honest reply, rather than 15 dismissive, "I'll pray for you's."

I've been a book editor for many years. If Andi wants to write, great, then people that like that sort of thing will buy it. In today's publishing market, she'll likely have to self-publish, what they term "vanity press" because she'll have a hard time finding a legit publisher. The main prerequisite for writing is to be aware of who your audience is.

I came here thinking this forum was a supportive board. Not a prayer room (although I am a Christian). Not a place for a sell-proclaimed writer to try their new material. Or someone to sell vitamins via their book.

I thought this was a home -- a soft place to land -- a place to be honest-- a place to ask questions-- a place to share information.

Watching the two-hour documentary Farrah's Story gave me an honorable example of grace and dignity and support to last a lifetime, and I will hold my head high in health. Some of the drivel espoused here as wisdom only damages the credibilty and respectiblty I fight so hard for.

Thank you, Joe and Christina -- you had good intentions.

SoCalGal · 06-30-2009, 11:21 PM

Hi Andi,
Just wanted to say I love you.
Flori

Jyber · 07-01-2009, 04:56 AM

I am an infrequent poster here but the posts objecting to Andi's communications "got my Irish up." I moderate a very large, very active non-cancer-related forum and our terms of service demand that all posters who post with courtesy are welcome, and free to express their opinions. "Put-downs" of other posters are specifically forbidden. Live and let live. If somebody or their opinions annoys you, just don't read their threads!

You can always try the "ignore" option:
"Can I block posts, emails and messages from specific users?
If there are particular members that bother you and you do not want to see their posts or receive Private Messages and Emails from them, then you can add these members to your 'Ignore List'. "There are several ways to do this:
Through your User Control Panel: User CP, Settings & Options, Edit Ignore List. Then, type their name into the empty text box and click 'Okay'."

You could still express your own opinions on other threads. Why is that so hard? I have to wonder what is driving the unnecessary and unproductive antagonism.

What Andi is doing works for her, and may for others. Perhaps not all. Many paths. I enjoy reading a variety of thoughts and opinions. It is like reading a cookbook for recipes -- some will appeal, some will not. I am under no obligation or pressure to try everything.

Sheila · 07-01-2009, 05:19 AM

Andi
Your posts are always so insightful and uplifting...I just want to slip on my Ruby Slippers (if it would help), click them together and get to where you are....it just seems so hard when I am on a treatment merry-go round, never being able to stop long enough to feel even slightly free of this disease.....any suggestions?

Pam P · 07-01-2009, 05:51 AM

Abby - I really am trying to understand your position, but I'm sorry I don't. You've talked a lot about what doesn't work for you: the mind/body connection language, 'I'll pray for you' comments etc. as not being "honest reality' (my words not yours), I get that doesn't connect with you as real or helpful. That's fine and I'm glad you can express that doesn't work for you. But I don't know what would be meaningful and helpful for you that you'd like to see discussed in its stead. Help me understand. As others have said, I think the intent is for this to be an open forum where everyone and their opinions are accepted and honored - and we are able to share our realities and truths without being criticized - different paths. I'm sure you are not alone in your beliefs regarding these things nor is Andi in hers. And how many hundreds of us are on this site (Joe? I have no idea!) No two of us are alike. As another has said, take what is helpful here, ignore what isn't.

"I'll pray for you" does sound like a lame inept thing to say at times when the news is bad bad bad and terrifying and we well know the facts. I could say something blunt like "your not going to beat those odds" but the person already knows the score her/himself - & I - or any of us don't know what the future will hold anyway, so all I can do is pray.

I didn't watch the Farah story you mentioned, but I'm curious - I'll see if I can find it on the internet.

Andi - I admire your positive spirit and stories of inspiration.

Peace and acceptance to all here. Pam

PinkGirl · 07-01-2009, 06:24 AM

Hey SheilaGirl
I know Andi will reply to your questions ... I'll just toss in my 2 cents.

Andi will be the first to admit that she is not always in this warm, fuzzy
place. She has her down times and I usually hear about them. She works
hard on this "stuff" and it's not easy.

I'm not on treatments and didn't have a fraction of the chemo you've
received but I understand the feeling of living in "cancerland". It's a
hard place to get out of.

Jean · 07-01-2009, 09:03 AM

Abby, you wrote,
"was warned by others if I vocally dissented I would be pushed off the forum"

I have never heard of this? Unless something is posted that is intended to harm the support group I doubt Joe would remove or push anyone from the forum.

You write, “I passed along this website to many women in the beginning and then at times was embarrassed "
I am truly sorry that you feel this way as I believe this site offers a diverse community - inputting different emotions, thoughts, feelings, coping skills, experiences, support, medical updates, research news, etc, the list is long and varied. Anyone one who comes to visit this site and if they are facing this disease will find an article or recent experience that they will find helpful. I also would like to think that your oncologist would have the heart and compassion to understand that each person on the site faces this disease in the manner that makes them strong enough to fight it each and everyday. While each of us has wonderful oncologist that fight this battle with us, let’s face it is OUR battle they are not in our shoes, nor would they choose to be. So I guess I doubt very highly that any oncologist would think of any patient as a mere mouse. All on this site are strong and brave fighters.

Abby, I am sorry if anyone took the time to write to you that you were jealous of Andi's health that is a strange act in itself. If anything Andi's success in battling this disease is a demonstration of will, constant struggle to survive and beating the odds. I think it serves to show other women who come to the site that there are many who are thriving in spite of the rotten disease. Yes, you are correct in that it is disgusting to imply such a thing to you. There is no room for jealous emotions when fighting this disease as all strength and efforts are better spent enjoying each day.

You Write, So, I'll take this as a "don't let the door hit you on your way out."
NOT AT ALL, no one here feels that way. I noticed many of the women who were interested in understanding your position. And yes, there are articles that will be posted that may not fit your needs, or that you feel are not are worthy enough. As an editor I am sure you have passed over many different articles that you feel or believe do not fit in. So you move on to the next.
Simple - why is Andi such a spot light for you? Just don't read her posts, no big deal!

"And when someone new comes on here to ask for help or advice, I am sure I am not the only one that would like to see one honest reply, rather than 15 dismissive, "I'll pray for you's."

Wow, I have to strongly disagree here....we have a collection of people who are very well informed on this disease from firsthand experience. The new members that join in get valuable information on new trials, sisters that are in the trails sharing their personal experience with us, we have Hopeful who is a constant supporter of adding research material, Lani who is a wealth of first hand information, Joe and Christine who attend most if not all of the conferences along with our own members.
Recent books, articles, medical info, and yes along with the medical side of this disease that is forever in our heads, we have the emotions that some will share how they cope and endure.

Abby, there are many women and men when faced with this life threatening disease who may have never reached out to God prior. (who knows)? Some have always had a strong faith and practiced their faith long before breast cancer came into their lives. We do know that having faith has served many well. When people are facing the harsh reality of their own mortality they
become more in touch with an inner spirit. My oncologist on the East coast is not known for his bed side manner, a rather crusty person. His nurse shared with me that he prays each day for each one of his patients. He is a devoted man of god and science.

"I thought this was a home -- a soft place to land -- a place to be honest-- a place to ask questions-- a place to share information."

It is Abby - you can be honest we only ask that you allow and accept others to do so also without name calling.

"Watching the two-hour documentary Farrah's Story gave me an honorable example of grace and dignity and support to last a lifetime, and I will hold my head high in health. Some of the drivel espoused here as wisdom only damages the credibility and respectiblty I fight so hard for."

I watched the Farah’s Story also, which I also enjoyed and cried over her documentary. She was a beautiful lady in all ways. She fought so hard & bravely (by the way Farrah was also very connected to her faith) she came across in her story how she developed her strength from her faith. She wanted others to see the face of cancer. She fought all her life to demonstrate that she was just not a pretty face, she possessed a great talent and when dx with cancer she wanted to share the good, the bad and the ugly parts of her life. She was not afraid to expose herself and her thoughts. Much like what Andi is doing.

I hope you will feel welcomed to stay with us.
Kindest Regards,
Jean

Joe · 07-01-2009, 10:02 AM

I agree with Jean's comments. I rewatched "Living Proof" yesterday and was impressed by both the dedication of Dennis Slamon and of the ladies who were in the Phase I trial.

I have only kicked one person off of this website in eight years and that was warranted as she was giving medical advice and telling members not to listen to their oncologists and that was after warning the person several times.

Regards
Joe

StephN · 07-01-2009, 12:18 PM

Dear Joe -
May this thread be closed. Abbydawg wants to maintain her position even though I think that Jyber had EXCELLENT advice as to ways to have the site itself "edit" threads for anyone who wishes this route.

Seems most of us do not want to "stir this pot" any more. Let's just take it off the burner.

Joe · 07-01-2009, 01:30 PM

I feel that this discussion has run its course and am closing this thread.

Remember we are all in this together.

Regards
Joe