Postby Bev G » Thu Oct 04, 2012 7:22 pm
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
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo
9/13 ^17th clean PET/CT NED for now