Please !!!! - Page 2

Brenda_D · 07-02-2009, 04:20 AM

Now I feel bad for posting something good about my test results. Sorry if it offended anyone.

Pam P · 07-02-2009, 04:25 AM

I have been so moved by reading all you've posted here, the wisdom, acceptance, appreciation, experiences, insights, and I agree with you all. I have nothing to add - it has been all eloquently said. I just want to say how much I appreciate the connections to both support and medical facts that I gain here. I am grateful for Joe & Christine, without you none of us would have the benefit of this huge resource. And, like Maryann said, I hope never to offend anyone with my story, questions, or comments - certainly that is never my intention.

Hopeful · 07-02-2009, 07:00 AM

There is a feature on this Board that many may not be familiar with: the "ignore" list. While in one of the BB Forums, look at the menu bar across the very top of the page - there is a "User CP" link that is second from the left. Click on it, and you will get a menu down the left hand side of the page. The third major sub-heading on that menu is "Settings & Options." Under that sub-heading you will see, "Edit Ignore list." Click on that link, and you will get a screen that enables you to add the name of a member to your "ignore" list. If you enter a name, you will no longer view posts from that person when you log on. You can reverse it at any time.

I just wanted to point this out as a tool for members who may want to do their own censoring, as opposed to requesting the moderator do it on behalf of all.

Peace,

Hopeful

Jean · 07-02-2009, 07:47 AM

First of all,
This all began from a point of view that could have been avoided....

It hurts me to read that Brenda D now feels she should aplogize for her good news, that makes me feel very sad to read.

I also thank Hopeful for giving the instructions on how to avoid certain member who may post threads that you may not wish to view. Self censorship is what I beleive we have done in the past.

Like any group we will have difference of opinions and thoughts, hey that is what we are here for. If we all thought the same how could we benefit ourselves and others who join in.

In any great company or organization there are focus groups...in that body of people we never select the same personalities.

Joe I think the majority has shown that self censorship is the way to go....please...as long as the person posting is following the golden rule.

No name calling, we are grown women who are all fighting the same monster. I think of us as a huge patch quilt with each person bringing a beautiful patch of color that holds experiences, emotions, thoughts, humor,tears, joy....with this site we are one huge blanket that covers all of us and I feel protected and safe while here.

I am troubled by the recent events that brought this on,
now we have members who are now afraid to post their joy....that is a shame. All one has to do is click like Hopeful advised.

Jean

hutchibk · 07-02-2009, 09:12 AM

Hear! Hear! Jean ~

suzan w · 07-02-2009, 11:00 AM

Yikes, go away for a few days and miss what's going on! I will admit when I first read Joe's post, I felt sort of like Brenda, guilty for posting good news. But after reading all the replies...some of them several times, I feel OK now! It is so true that we are all like family here. I have come to this board since I first heard the words, "you are Her2 positive, and that is a bad prognosis" (from a not-so-tactful-surgeon!). So I googled Her2 and eventually found this board and joined...that was June 2005. I feel like I know so many of us here although I have only met a few personally. I am closer to you here than to my own sister, and my partner, as far as sharing cancer fears, joys etc. I cry from the pain when one of us is not doing well, and I cry with happiness when we share our success stories. I do not know what I would do without this board! And judging by the response to Joe's post, we all feel personally connected!

Joe · 07-02-2009, 01:06 PM

Success Stories !!!!

Keep em coming. We do forward some of these posts to the patient advocate reps of some pharma companies.

This sometimes leads to opportunities for both our group and the member; as well as inspiring new members that it can be done.

Who does not want to be the next Barbara Bradfield !!!

To Hopeful: "There is a feature on this Board that many may not be familiar with: the "ignore" list. While in one of the BB Forums, look at the menu bar across the very top of the page - there is a "User CP" link that is second from the left. Click on it, and you will get a menu down the left hand side of the page. The third major sub-heading on that menu is "Settings & Options." Under that sub-heading you will see, "Edit Ignore list." Click on that link, and you will get a screen that enables you to add the name of a member to your "ignore" list. "

I guess that explains why no one listens to me.

Regards
Joe

hutchibk · 07-02-2009, 01:27 PM

LOL - Joe!

Awww, I would never tune you out! You rock my world...

hutchibk · 07-02-2009, 01:48 PM

I would like to add - posting good news is not offensive. Neither is posting bad news. Please don't apologize for posting about either when you want to share. Please do not feel guilty for where you are, whether it be Stage I, NED, or a Stage IV thriving for an exponential number of years. Please don't withhold posting either, unless it makes you feel better to wait a few days. I admit, I do that sometimes, but other times I just jump right in if the water feels good. That is what we are here for! We are a support group. In my opinion, what IS offensive is to fear monger, name call, disparage, deride, mock, dismiss, slight, scorn, disdain, or insult. If you disagree with someone, it's OK to speak up if you feel strongly about it, but it is the customary and implied code of this site to simply state that you disagree and say why, without engaging in any of those behaviors and inflaming unnecessary controversy, or another choice is to simply move on and don't go there at all. Quite simply, it is about respecting each other and being cordial, even in disagreement. Please don't feel a need to apologize unless you feel you have engaged in disrespectful and/or insulting behavior...

As one who has pretty strong opinions about certain things in this life, I have had to rethink a time or two before posting responses... and have embraced the need to understand that this site is intended to be a gentle landing spot for those of us with HER2 breast cancer. A gentle place to learn how to cope with our dx. A gentle place to share what works for us when fighting this disease day in and day out. A gentle place to learn the reality surrounding our cancer lives, especially when it is devastating. A gentle place to learn about the science and discoveries. A gentle place to ask questions. And a gentle place to support each other as we face the fear of the uncertainty.

For those (including me) who do frequent other sites on the internet... news sites, opinion forums, etc., this site is different from those. You have to change your hat, your brain, and your mood when you come here. This is a shared experience, not intended to be an opinion/debate driven forum. This site is a valuable tool and a place for understanding, learning, sharing and respect for the process.

tricia keegan · 07-02-2009, 02:27 PM

I'm coming in late on this one as always with the time difference, but agree with Brenda's comments overall. My heart breaks for those in dire difficulties but I love sharing in the good news too.
While I'm not stage iv, anyone with her2+ (at least pre herceptin) can't help but put themselves in that situation and understand what other's are going through to a degree.
I moderate on the advanced forum of another bc site and am always delighted to pass on good news from someone here in the hope of providing some optimism if someone is doing badly.
When I meet anyone her2+ I direct them here, to me it's the most informative and supportive and knowledgable site to go to if you have this type of cancer. While I don't always understand Lani 's posts I love reading them and often quote them.
I think all the member's here have a deep and genuine feeling for those less fortunate as we truely know in a hairs breath we could be there too.
And Joe...of course we always listen to you

Lien · 07-02-2009, 02:45 PM

When I first came to these forums, I was newly diagnosed, and the posts about stage IV scared me away. But I kept dropping in from time to time, because I'm her2 pos and because this is such a special group of people. Now that I'm 5 yrs out from diagnosis and not so scared anymore, I can read the tough posts about struggling, dying and horrible side effects without getting too upset. And I sometimes look at the threads as if through the eyes of a newby and think: there should be hope here as well. So when I have good news, I share it. Perhaps I shouldn't have. But on the other hand: the newly diagnosed need us too. It's a fine line indeed.

Anyway, I hope I don't offend or hurt those of you who are struggling with this ƒ∞§¶§¶!*!!! disease, dealing with awful side effects from therapy or feeling sad, scared, desperate or angry.

Jacqueline

Hopeful · 07-02-2009, 02:52 PM

Joe,

"I guess that explains why no one listens to me."

ROFL!! You got me with that one!

If there were a "priority" list feature, you would be at the top of mine.

Hopeful

suzan w · 07-02-2009, 03:20 PM

I have to laugh about that comment too, Joe...I always "hear" you loud and clear!!!

Sheila · 07-02-2009, 03:40 PM

Some of these are too good not to pass on....it puts a whole different perspective on each on of us, and what truly is important.

Written By Regina Brett, 90 years old, of The Plain Dealer,
Cleveland , Ohio

"To celebrate growing older, I once wrote the 45 lessons life
taught me.. It is the most-requested column I've ever written.

1. Life isn't fair, but it's still good.

2. When in doubt, just take the next small step.

3. Life is too short to waste time hating anyone...

4. Your job won't take care of you when you are sick. Your
friends and parents will. Stay in touch

5. Pay off your credit cards every month.

6. You don't have to win every argument. Agree to disagree.

7. Cry with someone. It's more healing than crying alone.

8. It's OK to get angry with God. He can take it.

9. Save for retirement starting with your first pay check.

10. When it comes to chocolate, resistance is futile.

11. Make peace with your past so it won't screw up the present.

12. It's OK to let your children see you cry.

13. Don't compare your life to others. You have no idea what
their journey is all about.

14. If a relationship has to be a secret, you shouldn't be in
it.

15. Everything can change in the blink of an eye. But don't
worry; God never blinks.

16. Take a deep breath. It calms the mind.

17. Get rid of anything that isn't useful, beautiful or joyful.

18. Whatever doesn't kill you really does make you stronger.

19. It's never too late to have a happy childhood. But the
second one is up to you and no one else.

20. When it comes to going after what you love in life, don't
take no for an answer.

21. Burn the candles, use the nice sheets, wear the fancy
lingerie. Don't save it for a special occasion. Today is special.

22. Over prepare, then go with the flow.

23. Be eccentric now. Don't wait for old age to wear purple.

24. The most important sex organ is the brain.

25. No one is in charge of your happiness but you.

26. Frame every so-called disaster with these words: 'In five
years, will this matter?'

27. Always choose life.

28. Forgive everyone everything.

29. What other people think of you is none of your business.

30. Time heals almost everything. Give time time.

31. However good or bad a situation is, it will change.

32. Don't take yourself so seriously. No one else does.

33. Believe in miracles.

34. God loves you because of who God is, not because of anything
you did or didn't do.

35. Don't audit life. Show up and make the most of it now.

36. Growing old beats the alternative -- dying young.

37. Your children get only one childhood.

38. All that truly matters in the end is that you loved.

39. Get outside every day. Miracles are waiting everywhere.

40. If we all threw our problems in a pile and saw everyone
else's, we'd grab ours back.

41. Envy is a waste of time. You already have all you need.

42. The best is yet to come.

43. No matter how you feel, get up, dress up and show up.

44. Yield.

45. Life isn't tied with a bow, but it's still a gift."

Bill · 07-02-2009, 04:06 PM

Wow, Sheila, that's awesome! I agree with all of them except #44. (I'm persistent to a fault). I was going to make a personal request of Joe, but after your post I feel I should wait awhile............................................ .......................................
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Hey, Joe, can we make a new feature on the "User CP" where we can change someone else's avatar picture if we don't like it? The reason I bring this up (I personally think it's a great idea) is that Greg's new avatar when seen right next to mine makes me look, aw, I don't know, sorta silly, but I want to keep mine for awhile, but change his. Greg's avatar might seem really cool to some, but I just think I should change it to something that makes me look better. (maybe like a fake picture of Greg watching TV in a ratty T-shirt with mustard down the front, I don't know, I'm just brain-storming here) I think this is highly do-able and would greatly benefit the site. Joe, I know you probably want to think about this one awhile, so we can discuss it over the grill Saturday. I know what you're thinking and yes! I will remember the limes this time.

chrisy · 07-02-2009, 04:14 PM

Bill,
I think you need to reread #13 in Sheila's post. And maybe #29. You already know about #32.

Who says a big leaf of chard isn't as scary or dangerous as a shark cage? I mean, really, you've got that thing ACTUALLY touching your head!!!! Are you CRAZY????

chrisy · 07-02-2009, 04:19 PM

I have to say, I agree with everything everyone has said here. And I love how it now is now heading completely off the rails...

Sort of like when you have a big fight with a spouse or other important person in your life - it gets scarier and scarier until someone says something silly to break the tension.

Because in the end, what really matters, what you really value, is the relationship.

Said it before and I'll say it again...I love you ALL

Brenda_D · 07-02-2009, 04:27 PM

I try to be careful and realize that some are fighting a bigger or longer battle. I remember when I was dx'ed and told it was stage4. I was in a fog of unreality for 6 months, and I appreciated the help and hope I got here.
When I re-staged at 3, I was of course happy, but also furious at my 3 doctors who never ordered the bone scan to verify staging. They just blew it off, but I know how deeply affected I was, and still am to some degree, because those words never go away completely.
I understand fighting this disease.
I may not always jump in to threads or conversations because I'm not one that finds it easy to communicate with others.
I do post a little in another forum and have read posts from newly dx'ed women that are begging for good stories, and reports of long time survivors.
I have recently posted to some of those in hope that it gives some comfort to them in knowing this disease can be overcome at least to some point or for some amount of time.
I know sometimes I like reading success stories.

Joe, you can tell Genentech that Herceptin has worked it's magic for me.

Mary Jo · 07-02-2009, 04:27 PM

That's what I was going to say Chrisy........so now I'll just say...."me too!"

Hugs....

Catherine · 07-02-2009, 04:52 PM

Wow, as usual, I am impressed by the well meaning and well written people on this site. It is the only site I visit. I have learned so much and have felt so connected and supported ever since I signed on Dec 2006. If I start reading a post that upsets me, I just ignore it. I appreciate that every once in a while Joe makes a comment about keeping the site thoughtful, but I also understand that we do not want to be "censored."

So I agree, lets breath in and out and try to take most things with a grain of salt. I, too, feel guilty sometimes, because I am NED. But I pray for everyone on this site, and know that you are there for me, even if right now I am not as needy as I was 3 years ago.

Love you all, C