An open message to no one in particular

[Bev G]

There is a general thing that I would like to say, that is NOT directed at what anyone in particular posted, and is NOT because there are conspiracies here, or an "old boys club" or an "old girls club", but because common sense should tell us that those who are new on the journey may just not have had the time yet to know as much as some of us who have been dealing with this for a bit longer. Oh! That may not be politically correct, true, but I am saying it anyway.

When I first came here early in 2010, I had very recently been diagnosed. I suppose like most of us, I was scared to death. I didn't know the words, I couldn't handle the feelings (or lack there of, as mostly I just felt numb, like I was in a dream), the idea of chemo petrified me, the idea of liver resection double-petrified me, and I didn't have very much support at all coming in to this. I clung to the board as if it were my heart and my lungs---I was glued to it for many hours at a time. Someone on the board from Pittsburgh, one of the very oldtimers, our dear Justsing, invited me to call her, and I did. It felt like the first time I had exhaled in many weeks. In short, I became very attached to the Board, and all who became my mentors here.

I see that as a role that those of us who have been around here for awhile have for new, recently diagnosed people. Sort of a paying it forward. I am well aware that new family here do not always like what old family members have to say. When this happens, it is almost never because anyone is trying to bust anyone else's chops, or to make anyone feel sad or bad, or mad. It is very hard to see stuff on the board that many of us know has been discussed ad nauseum before, and worry that people may take it as Gospel, and determine to implement strategies that have been proved to not work. What should we do if we are aware of this sort of information but don't share it, because people think we are disrespecting them, or their thoughts/ideas/input. I have seen a lot of already scientifically refuted stuff around here lately, and I almost never say anything, because I don't want to be seen as "being negative" or bursting someone's bubble. But, that also puts me in a fairly weird place, and many times I wonder what I'm doing here. I owe a lot to so many of my friends on this board; those who have seen me through some impossibly hard times with their love and support. I value many people here more than I value a lot of people in my "real" life. I care when someone comes here newly diagnosed, I care when someone is scared about an upcoming surgery or inconclusive scan results...

I'm concerned that this will sound patronizing. I don't mean it to be, but I simply can't think of another way of saying it. If we see one of our kids preparing to run out in traffic we scream to warn them, or run to grab them, wanting with all our hearts to keep them safe, to protect them. I think what can stir up really bad feelings around here is when someone posts something with all good will and intentions, and it's simply not really a safe idea, or a good plan, or an acceptable alternative. What is our role them? To continue what I feel will be an unwanted metaphor, we all know we have to let our kids learn some lessons themselves, particularly if they're likely to do no harm in the end, even if they are tough lessons to learn. I am finding myself saying less rather than more around here lately, because I, like everyone prefer to be understood than misunderstood.

Being a stage IV in remission for a long time (and feeling endlessly lucky) I frankly have little need for the Board these days, except that I care so much about my friends here, and I like the idea of supporting new members to the Board. I don't like my knowledge and intentions denigrated, I don't like getting "into it" with the very rare couple of people on the board whom I have tremendous synergy with, and I don't like not feeling free to say what I sometimes think people really need to hear for their own good.

I don't like hearing stage IVs in desperate states being told they "will be OK" by clearly well-intentioned people who just don't yet know that it's simply not true, and not helpful. I pray when I'm on my deathbed with stage IV cancer that no one will tell me I'll "be OK"--eternally I will be, but surely not at that moment. I hate it when people claim lifestyle is "the" cancer causer, because that has never, ever been scientifically proved, and does nothing but hurt our cancer buddies. If it was all lifestyle, there are so, so many who would not currently be struggling with cancer. Undoubtedly there are complementary therapies that MAY be found to help, but none of these have ever been scientifically, conclusively verified---so if they can't hurt, and they may help---excellent!

I hate being accused of "pulling a Stage IV cancer card" by someone who is not yet a stage IV and could therefore not possibly know what she is talking about. Stage of cancer is NOT a contest, and NO ONE thinks (I think) that they should be taken more seriously because of stage of disease, but guess what? Possibly, just possibly, because we really are looking at life and death stuff more urgently than some others might be, maybe, just maybe, we might be more familiar with the current literature and potential treatment modalities than others. Maybe not, too. Is this a social forum? Sure, in many ways it is, but its purpose originally was to bring people together who were dealing with CC (as well as a number of other goals, of course). At the end of the day, it IS very social around here sometimes, but it is not a play date, or a cat fight, or an appropriate place for hatred or animosity.

I don't have to be here. I've learned a lot of what I need to learn, and could and would come back if and when I have a recurrence and need new information and support. In the meantime, I think it has perhaps become more angst and heartache than it's worth. I don't know, maybe it's just me today, but that's what I'm thinking.

Bev

[BrendaB]

I don't post much but I do read a lot and have so much respect for you Bev, just seeing your name comforts me. You say so many nice things and are always sweet while telling the truths. I've wanted to let you know this for a while. I look up to you.

[Badass]

Hi Bev,
I just want to say that I so appreciate you being here for me-- not just for info, but for warmth and good humor. Seriously, you humanize the board!

I didn't really see what the big to-do was in the other thread-- someone just said "Please think twice before posting..."- and gave reasons why. Seems polite and civilized to me.
Some people come here for prayers, others for cheers. I come here for honest connection with others who are going through the same things I am. I welcome all opinions and posts, even if they are not my religion or point of view. But I also come here for good information, so I hope that whatever anyone posts, including me, can be critically evaluated for scientific soundness so that I have good quality information going forward. There is nothing personal about that-- we need to have good, analytical and science-based dialogue at the same time as we welcome all postings. I am not a scientist, but I do understand the importance of double-blind and peer reviewed studies. I also understand (and sometimes share in) the cynicism that folks have for the pharmaceutical industry and the intellectual dishonesty that might come with academic power politics. But one thing all of us share, whether we are Stage1 or Stage 4 or a caregiver, no matter how sophisticated, is intense fear as well as longing, deep longing for a solution. So I think we are all vulnerable to snake oil or the idea that there is some wholesome way to take control of this complicated disease over which we really have little control. I must admit, I eat my veggies, worry about sugar, think twice about acid vs alkaline, even though my logical mind tells me otherwise-- it gives me a sense of control and hope, however much that is an illusion. But that said, I really crave quality information and really, really count on Colon Talk to provide that! We need to be critical thinkers (not critical of one another) as we face this complex disease.

[Lara239]

I don't post much but I do read a lot and have so much respect for you Bev, just seeing your name comforts me. You say so many nice things and are always sweet while telling the truths. I've wanted to let you know this for a while. I look up to you.

Yes Bev, what she said. You make me feel comfortable and at home here always.

[pbyers]

I don't post much but I do read a lot and have so much respect for you Bev, just seeing your name comforts me. You say so many nice things and are always sweet while telling the truths. I've wanted to let you know this for a while. I look up to you.

I totally agree with Brenda. I just love and admire you Bev.

[MissM]

I don't post much but I do read a lot and have so much respect for you Bev, just seeing your name comforts me. You say so many nice things and are always sweet while telling the truths. I've wanted to let you know this for a while. I look up to you.

Likewise for me too. I've only been a lurker lately because I'm just extremely saddened by the loss of folks that I used to see post all the time like Gaelen and Rick... But I am ALWAYS glad to see a post from you and I just want you to know how much I truly respect you.

-M

[yvonne]

I have been lurking here on CC for quite some time deliberating whether or not to join and post. You are one of my favourite posters on here and I always look forward to reading your informative, succinct - and often warm-hearted comments.
Your latest post struck a chord and I can identify with what you are saying.
I have not got time at the moment to write, but I just had to register and join in order to ask you to please not even think of leaving this forum! You are a lovely person, and you help so many others!
I will write again when I have more time... I'm in the UK and it's way past bedtime and I have to be up early in the morning.

My best regards to you.
Yvonne - in England.

[Rob in PA]

Ditto what the other posters said Bev. I just moved to NEDsville and like the neighborhood, i'd like to stay awhile! I also don't really have the critical need for information like I craved when I was first diagnosed, but i do, however, feel the need to pay it forward as you said. It made me feel so great to hear that Patti was able to insist on meeting with a radiologist to discuss SBRT as an option because I mentioned it on this board a few months ago. I'm not saying that SBRT is the greatest thing since sliced bread, just saying "here is another option that worked for me"....take it for what it's worth. Same goes for the Bio-freeze, I never said it permanently made my neuropathy go away, just temporarily made it bearable to help me get to sleep.

I always said that if I'm going to go through this hell, then I'm sure as heckfire (remember that word from the movie Groundhog Day?) going to try and make my experiences helpful to someone else. Whether that is participating in trials (i've done two), or letting my doctors ranging from surgeons, oncologists, and radiologists to family doctors and neurologists know that I am more than willing to meet with new patients of theirs that are just recently diagnosed and need support (I give them my cell number and have received numerous calls from patients) from a "veteran".

Stick around Bev, the party is just getting started!
Rob

[gep]

Please don't stop participating here. I just ignore the rants and I never take them too seriously. My husband started out as IIIB in August 2007 and he's progressed over the years and our needs have changed over the years, too. People's needs are different at different times but everyone needs support and support from those going through this life means more somehow to me. I remember an uproar about the religious bent in the past, too, that seemed to settle down. It's bad enough to lose those people like Justsing, Gaelen and Kate Murphy to colon cancer, but the thought that you'd leave here because of someone's comments is really hard to take. I hope you won't choose to do that.
Gloria

[Pwheelhouse]

I'm a caregiver and a newbie here. I am thankful for people like you who stick around for those of us just starting this journey. I'm totally grasping at straws here for something, anything to help my hubby. Without those like you , I would be spending valuable time, money, and energy on "snake oil" and not even know it. I can't read every article and research everything as quickly as our lives are changing. I appreciate the veterans who take the time to "tell it again".

Thank you to all of you who help those of us who don't know what to do next. Don't know what I would do without this group of people

Patty

[SkiFletch]

Did I miss something Bev? Probably. You know I love ya Bev. We were chemo buddies, starting our journey together. I couldn't agree more with everything you wrote, it very much echoes some of my own feelings.

[jean60]

Bev,
I have to add to this. It has been said by others, but that's okay. You comfort me. I feel rather certain I would really really like you if we met in "real" life. I always look forward to reading your posts.
Having said that, I think and hope that what you should do in regard to this forum is whatever feels right to you. You are an elegant and articulate individual. Funny how much one can discern from an online forum.

Jean

[Angiemarie2000]

Bev,

I am one of newbies with stage 4! And this board is my salvation right now, I spend hours here reading and soaking in the information and support, it gives me comfort in a time of such disparity.

I've learned so much about my disease and how to face each day.

I tell you all this because you are a Hugh part Of my life and my success in accepting this Dx. Your advice and support is appreciated and well received from many here. I hope you stick around to countinue to share you advice and support.

Hugs to you


Angie

[Badass]

T In the meantime, I think it has perhaps become more angst and heartache than it's worth. I don't know, maybe it's just me today, but that's what I'm thinking.

Bev

Just reread your post-- how did I miss this? I would have angst and heartache if you left the board!

[AJS]

Well said Bev!!!!


Angie