Please !!!!

Joe · 07-01-2009, 09:09 AM

Please be considerate to others in what you post on these boards. We have several members who are currently having problems responding to treatment so please temper your "sunshine" posts. There is a fine line between announcing and flaunting success in the face of others.

We DO look forward to good news and stories of inspiration, but remember others are not as fortunate. Sometimes I forward your posts of good news to various healthcare professionals to show them that their work does not go unappreciated.

I must admit that I do not have the time to read every post as I have done in the past. As our organization grows our advocacy becomes more complicated and more time consuming. We are currently involved in several projects which we feel will benefit everyone.

I do not want to be a censor nor should I be. I have always advocated an open forum and have very few forbidden topics. Politics being one of them.

Members have been great about reporting posts from people marketing drugs and cures on these boards. If you see a post that you feel is objectionable for any reason...please let me know !!!

Warmest Regards
Joe

hutchibk · 07-01-2009, 10:23 AM

I agree Joe that it is a fine line, and I have been reluctant to post successes at times when others are experiencing failures. But I have also experienced recurrences when others have been getting wonderful results, and so it goes, around and around. Such is the nature of this disease.

We are an amalgamation of people who share a common subset of cancer. That is truly the only common thread. Each one of us will come at it from a different perspective and a will have different fruit to bear on the subject. We all have different bodies, different doctors, different experiences, different approaches, different results, different psychology, different theories, different faiths, different spirituality, different treatments, different needs. We live in different countries, eat different diets, have different living situations, working situations, spousal (or not) situations. No one thing mentioned, offered, espoused, touted, expressed or experienced is going to apply to all who visit here.

In this cancer life, I have learned that one must attend to shared information with a proper personal skepticism and ability to suss out what makes sense for them and what doesn't. Some days, I am more open to some things and certain info than I might be on other days. But it is up to me to take it or leave it or to not click on a thread that I just don't have the energy for. I take personal responsibility when I am here. I don't blame anyone for what they post, unless they break the code of the site. I don't get upset by anyone who is too sunny or positive when I am feeling blue or worried for my situation. If it doesn't float my boat that day or that week, then I just don't go there. Life is about choices and I can't blame anyone else for the choices I make.

I come here because this is a family to me. A group of people who I share something in common with. I come here to try and contribute to the conversation, with my perspective, successes, and failures, hoping they might be helpful to someone else in their fight. And I have learned WELL beyond my initial expectations - many hints and ideas that have possibly saved my life more than once. I promise that is not an exaggeration. Before I became an active member, I read the forums and learned about brain mets and lapatinib trials. Scared me to death! Not knowing that I would ever need it, I kept that info in my back pocket for 4 years... running it by my doc who always said that "we are not there yet, it is not out of trials, and let's hope we don't ever need it." Well, we did and it has been a savior for me for 2.5 years.

This is a support group and those who are members post what is close to their heart... it is an outlet, a forum, and a tool; and sometimes it is a vent, a rant, a sadness or a fear. Often it is a question, a prayer, an overtly positive message, a success, or just an update with warts and all. And sometimes it is a propeller-head named Lani who shares the future with us in ways that makes us HOPE AND CHEER, even though we may not understand anything written in the trial results that she posts. That is what support groups are all about. Sometimes you take, sometimes you give, and sometimes you just sit back and let it happen around you.

That said, anyone who joins here looking for a site that fills only a narrow need that they have, is a true curiosity to me.

I hope all who visit here will take personal responsibility for their choices.

jml · 07-01-2009, 11:29 AM

So eloquently stated, Brenda.
I have nothing to add, other than to thank Joe & Christine for the tireless efforts they've invested to create this place for all of us to come and educate ourselves and each other, as well as to offer support or find a soft, safe place to fall when this journey gets too bumpy & frightening.
I wish none of us ever had to know one another - at least not under these circumstances. Some days I'm able to celebrate other's good news, while on other occassions, when I'm feeling less resilient, the Green-Eyed Monster may sneak in. We share an unforunate diagnosis that has rocked all of our world's in so many different ways.
May we all continue to go forward to be sensitive & responsible about why we are here and what we offer one another.

Ultimately, I do truly believe that successful treatment for any one of us is a victory for all of us.

Keep the Faith~

Jessica

Barbara H. · 07-01-2009, 11:54 AM

I can understand Joe's post, but I also agree with Brenda's and Jessica's reply. I have visited many online support groups, but this is the only one I have joined. When I first visited five years ago, I didn't know if I had three months. The stories here gave me "HOPE", although I knew we are all individuals with this complex disease and that I wouldn't necessarily follow the same road as others. While I have made it five years with mets, there have been bumps in the road and I appreciate the support I have been given.

All this being said, it is not easy to comfort someone who is not doing well. Again, we are all individuals, what works for one person may not work for another. When someone is not doing well, it seems important to acknowledge the situation, but also let her or him know your concern and that you care.

It's important to me that members feel free to post their experiences, both the good and the bad, and that we keep our hearts open to both.

Best regards,
Barbara H.

Jean · 07-01-2009, 01:09 PM

Ditto to all of the above...Brenda certainly nailed it.

We all come to the site with different stages, different dx. etc. It can be very frightening absorbing all the information (especailly when you are early stage)
so no matter which direction you are coming from
this cancer journey is a hard one.

I am so grateful for the wealth of information found here, the cyper friendships, the good luck to even meet face to face with some. If we start censuring the site and editing (as long as the posting remain correct) we are in trouble for sure and we will lose the very eccense of what you created Joe.

There are times I come here and I laugh, then there are the days I cry...along with the days I can share someone's good JOY.

We are collectively a wonderful community...like the song says, "don't go changing I love you just the way you are."

Jean

Diane H · 07-01-2009, 01:59 PM

I took a lot from all posts in this thread, thank you all.

AbbyDawg · 07-01-2009, 02:06 PM

Quote:

Please be considerate to others in what you post on these boards. We have several members who are currently having problems responding to treatment so please temper your "sunshine" posts. There is a fine line between announcing and flaunting success in the face of others.

Thank you, Joe, for allowing all of us to speak.

hutchibk · 07-01-2009, 02:40 PM

Hi Abby - your italic is a little curious to me... I personally have never experienced a time when all were not allowed to speak. Joe does not allow or disallow to the best of my knowledge. He does, however, protect the dignity of the site. He goes out of his way to not single out ANY one person for subjective judgements... and we are all expected to be cordial and adult while here, somewhat self monitored. I think we do a pretty good job of that, no? I know that sales pitches, meanness, partisan politics and unnecessary controversies are monitored, as well they should be.

That said, who needs a nice ice cold lemonade or hefeweizen on this hot and steamy July afternoon?

I'm buying!

chrisy · 07-01-2009, 03:25 PM

OK Y'all
You guys (that includes the girls)

That was sure fun! All together now,

Breathe in
Breathe out
Breathe in
Breathe out

Same thing, all day long. For as many days as we have.

I love you ALL. Nobody else can understand me (us) except you (us).

Peace and MUCH MUCH love,
Chris

WomanofSteel · 07-01-2009, 03:28 PM

I think it's the sunshine posts that keep us all going!

Becky · 07-01-2009, 04:19 PM

I realize that this board is split with several different populations. There are the Stage 4 battlers who are undergoing additional treatment (sometimes with success or they are onto something new). There are the women who are newly diagnosed - thrown into the new world of cancerland and beginning treatment, there are the caregivers - hungry to stay on top of things to help their significant other. There are also those who have finished treatment (regardless of initial Stage) and are NED.

Each population has some of the same needs (such as wanting to stay on top of the newest treatments and standards of care. Or the latest on lifestyle prevention measures/supplements etc). However, there may be different needs within populations. Never the less, we are a group who is here for each other. I admit, I feel for those who are not responding to treatment or have been thrown for a loop in finding new METs elsewhere. I can honestly say I feel guilty about it that I am ok for now (enough that I rarely ever say that I am ok for now). However, I also don't post about potential problems either (aches, headaches) etc.

If we can't post the good or post the bad or post the side effects (which might be next as one woman might have horrible and unusual side effects to a drug that might be out of the norm. That post might scare somebody - so now those things can't be posted?) When will it stop? I suppose when there is nothing else to be able to say, eh? There won't be anything we will be allowed to post about at all. We can come on and see the Articles of Interest but won't be allowed to post.

I don't read every post on the board and I don't read some individuals posts at all. I suggest others do the same because we are a family and we aren't all going to get along so ignore the folks you don't want to read. It works well. Try it.

Barbara H. · 07-01-2009, 04:33 PM

Hi Brenda,
We could use some of your sunshine up here in the northeast. We have had the rainiest June I can remember, and it appears as if July will not be much better. I guess we will have to get our vitamin D with supplements this summer.
Best,
Barbara H.

chrisy · 07-01-2009, 04:36 PM

Well said Becky, as usual!

PS
I always read your posts because they remind me I am braver than I believe and stronger than I seem.

Greg · 07-01-2009, 06:30 PM

Hi all,

"De-cloaking" again here. I don't post often, because I really don't feel like I have much to offer. But I have been here weekly reading all of the post and trying to stay up on things as we worked our way through Vickie's treatments. Today is good news for us as today was her last chemo treatment and we feel we have reached a goal. Now of course we are on to radiation and the every 3 week herceptin, but we made it this far!

I want to say how much help these forums have been and continue to be to us. I also have to say that sometimes it's difficult to read the posts from those that are not doing well without feeling a little guilty that things are going so well for us. Eric and Marie, I just don't know what to say. I hope if I were in the same situation, I would be half as strong as you are. All I can do is make sure I pray for you as often as I can, and being the eternal optimist that I am, believe that a cure will be found in all of our lifetimes.

This thread really hit home because I was just thinking about this last week. I feel so sorry for people that are really struggling but yet so happy for those that have good news. Here is a dumb idea, but maybe Joe could start a forum for "Good News" or something like that and people that want to pass on such news could post there without having to worry as much about hurting other peoples feelings.

Thanks again for all of your wisdon, support and courage.

Bill · 07-01-2009, 06:43 PM

Greg, feel free to "de-cloak" whenever you wish. You are now a part of this site, and a part of this family. Congrats on Vickie's last chemo. treatment, and like you said, you have made it this far and you can make it all the way!

Faith in Him · 07-01-2009, 07:00 PM

I have posted both good and bad posts because my cancer journey continues. When I get good news I want to share my experience with others to encourage them. When I have bad news I need to be encouraged by the only people who truly understand. Just my two cents.

Mary Jo · 07-01-2009, 07:28 PM

Hi "sisters" & "brothers!" I truly do look at each of you in this way...... I check up OR should I say check in every day....often more than once per day. You see, I love you all, and feel the need to check in on those I love. I don't agree with everyone on this board either....but as Becky said......"ignore" is an option. Overall though, I care about everyone here.

I, too, do not like to talk too much about myself as I know that compared to what many of you go through, I have nothing much to contribute . However, I do like to encourage (or I try too) and praying for your needs is something I do as I read a post from someone going through a bad time.

Can I say this though.....as a 4 year NED survivor I continue to come back to grow and get stronger as I read of those of you who are stage 4 and struggling with constant treatment. I've learned through your strength and determination that if my cancer ever does return I know I can get through it as many of you do on a daily basis. I see your strength.....I see your determination and your posts build those of us up who often are preparing ourselves (although somewhat subconsiously) for the day our cancer MIGHT return........ALTHOUGH also learning to live one day at a time but still growing and learning in this world we were thrown into.

This post probably doesn't make a lot of sense (I tend to ramble

) but what does make sense (at least to me) is each of you - us.............OUR struggles and successes but most of all the love and understanding we all seek.

Hugs....

Mary Jo

harrie · 07-01-2009, 11:57 PM

What I very much appreciate about this online site is the wide variety of perspectives, opinions and experiences as well as joys, concerns, and emotions. It can provide just about anyone with a concern for breast cancer or related concern the help, support and ENCOURAGEMENT where needed. It also provides availability for an outlet of amusement totally outside of the cancer scene. Anyone can pretty much pick and choose what they would like to read without anything being forced upon them.
I have times when I need to distance myself from the site or particular subject areas within the site, depending on my moods or paranoias. But i am sure those threads are at the same time very much benefitting another member in other ways.
What I am not comfortable with is when I read abrasive undertones and negative criticism.

harrie · 07-02-2009, 12:03 AM

Greg, I believe someone did start a thread about sharing the good news, but I forgot what the name of that thread was! (and no,..... that was not a thread i was subconsciously trying to avoid!! hahahaha!!)

madubois63 · 07-02-2009, 12:35 AM

Brenda, as usual, has the words and the spirit that just can't be beat. And Becky's point to ignore what you can't handle at a specific time is very good advice. There are times when I just can't be here physically or emotional for someone else; and I know to just stay away. But there are other times when you can't shut me up. The information, support and friendships here have saved my life so many times; truly. I learn about things that could happen and when they do happen to me, I am not so surprised and am able to make better decisions for a plan of attack than if I was totally in the dark. I for one have had things happen to me that the doctors don't always tell us about. I share what I can not to scare anyone, but to inform. This disease has become a chronic disease and we must all get through each step while working towards the cure THAT WILL COME. I've been through rough times, but always try to have fun in between. I hope that comes through in my posts and people know that no matter the stage, or diagnosis you can still have a good life. I appreciate Joe and Christine with all my heart and am very grateful to have a place to come and share the ups and downs. I am amazed at what everyone else has been through; I and gain so much strength through your stories. I also appreciate knowing that people care about me and are inspired by my journey. I hope never to offend.