Pete Simmer Down! My goodness ...

devotion10
devotion10 Member Posts: 623

how dare you request a board member (John) get off a message thread because he did not agree with you. 

I have read through many posts that you have written where you have put down everything from conventional treatment (that has saved lives) to health professionals (the majority of which are very well-intentioned) to the U.S. system and attitudes (my country of which I feel a certain pride) ...

You have repeatedly made reference to having tried to get people on board to exercise more and somehow made the conclusion that simply because they were not responding to your thread that they were not being responsible for their health or exercising ...

You have made a number of references to sheep as if we are all just following our noses because we are choosing conventional treatment ...

Pete, I get it.  You enjoy having a contrarian attitude and you are desperately searching to eradicate every last cancer cell in your body.  But, Pete, please be more respectful ... and work on the passive-aggressive thing you have going where you lamblast folks and their decisions and then sign your messages hugs ... it really feels awkward.

I have sat back and watched your appearance on the board unfold.  At first, I was delighted to read of your personal journey and impressed by your tenacity.  Over time though I have witnessed a more desperate more angry, defensive, and almost mean-spirited tone.

People on this board have been very kind and supportive to you and perhaps many may not agree with your decision to spend great sums of money and leave your family half way across the world and then talk about how beautiful the Black Forest is ... but they have not criticized your choices the way you are criticizing others.  You do it sometimes in subtle ways and sometimes in incredulously brazen ways.

You simply cannot have it both ways -- that is, you cannot expect support and acceptance of your unorthodox treatments and also keep putting down the choices of others. You lose credibility by doing this.  

I am very close to leaving the board as the tone has really changed over the years.  It is a shame too because my husband is dying of this disease.  I can remember those who have passed brought a gentle and supportive spirit to everyone who came here.  I had so many private messages with Buzz, Lisa, Eric, Donna, ... the list is too long and painful ... 

I wish everyone, including you, the very best as they navigate their very personal choices in their life and that includes what they choose to eat, whether they exercise, and what types of treatments they seek.

There ... I have said what I needed to ... maybe this will be my last post.

I do wish everyone, including you Pete, a full and happy life -- however long it may be.

Cynthia

 

 

 

 

 

 

 

 

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Comments

  • tachilders
    tachilders Member Posts: 313
    Please stay around Cynthia

    Please stay around Cynthia and skip the threads where folks aren't playing nice. 

  • geotina
    geotina Member Posts: 2,111
    Cynthia:

    Bravo, well said.  I, also, found respect to be limited.  This is a support board and I am so very grateful for the support I received in George's journey.  The information on treatments, etc.  George and I made the best decisions we could with what we were facing. 

    I am so very sorry your husband is not doing well.  If you need to vent, ask question, anything please send me a pm.  There is another member who recently lost her significant other and we pm each other often, and have even talked on the phone.  Together, we are getting through the tough day by day stuff and the support has been immeasurable to us. 

    Take care - Tina

  • abackhou
    abackhou Member Posts: 77
    Please Stay

    Please stay Cynthia, and I wish you and your husband all the very best.  I am also in a similair situation to your husband and would like to hear how he gets on and deals with this disease.

     

    I agree with your comments regarding Pete's post, well said from the heart.

     

    I also find John's posts very informative and unbiased.

     

    Take care, Andrew

  • herdizziness
    herdizziness Member Posts: 3,624
    Dear Cynthia

    Please my dear do not go, nor stop posting.  If there was a love button for what you bravely spoke up and said, I would be clicking on it a hundred times.

    Thank you for your words, they were well "spoken".

    I hope some day we get back to the way we used to be, supporting each other with words of comfort and our experiences to help those that have just started this awful journey.

    Winter Marie

     

  • Dyanclark
    Dyanclark Member Posts: 296
    Please all stay

    Dont let us scare anyone away with our opinions, we need as many people as possible on this discussion board.  I learn so much on this board.  Everyone has to do what they feel comfortable with.  I dont even make my husbands cancer decision that is for him to decide.   I try to help him make good sound decision, but it is not my body with cancer.   I dont know if it was me with cancer if I could do any of these harsh treatments so my hats off to all with cancer my heart achs for you all.  My nephew died at 32 years of age after a 5 year battle with testicular cancer and believe me it was hell especially for my sister      I say do what works for you.   Having said that, we need eveyones comments.Wink

     

  • LivinginNH
    LivinginNH Member Posts: 1,456
    Dear Cynthia,

     

    Thank you! You just stated what I've been fuming about for an hour after I read Pete's very disrespectful post to John .  I was just too angry to express it (at least to the community at large).   So, please, don't leave this board, the "silent majority" is here to help and support you.

    Cynthia

  • thxmiker
    thxmiker Member Posts: 1,278
    Dyanclark said:

    Please all stay

    Dont let us scare anyone away with our opinions, we need as many people as possible on this discussion board.  I learn so much on this board.  Everyone has to do what they feel comfortable with.  I dont even make my husbands cancer decision that is for him to decide.   I try to help him make good sound decision, but it is not my body with cancer.   I dont know if it was me with cancer if I could do any of these harsh treatments so my hats off to all with cancer my heart achs for you all.  My nephew died at 32 years of age after a 5 year battle with testicular cancer and believe me it was hell especially for my sister      I say do what works for you.   Having said that, we need eveyones comments.Wink

     

    Well said Dyan.
     
    I do like

    Well said Dyan.

     

    I do like the various posts and points of view. We cannot argue with each other, we all have bigger fish to fry.  (I am also guilty.)   I do not agree with everything, but I do appreciate everyone's journey.  

     

    I have taken advice form John316, Pete, Phil, NanaB, Coloncan, Doc, and to many others.  Everyone's cancer is a little different, and everyone's treatment is going to be a little different. We all need to respect those facts.

     

    Best Always,  mike

  • bailee2012
    bailee2012 Member Posts: 60
    We all need all of you

    I am so glad to find out that other people here feel the same way as I have been towards Pete's posts.  I havent said anything before this because of being sort of a newbie here(6/12) and most of the responses to his posts are positive.  The tone of his posts,at times, have left me feeling guilty for not tryin to do the same things for my husband.  We don't have the finances to go to Germany for expensive treatments and how would we leave the kids for that?  At one point, my husband was losing 1 lb per day no matter how much he ate.  I decided that trying to get that stopped was more important than anything else at that time so I fed him anything he was willing to eat, that's right, I stocked up on junk food in all forms.  Thankfully we got past that and he put weight back on and looks healthy again and has worked full time since his diagnosis except for couple hospital stays.  We are all here to help eAch other and even though I don't post much doesn't mean that I haven't taken suggestions from u all at different times.  All of the vitamin supplements he takes were recommended by someone here.  Thanks for all of you!!!

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Big Applause, Cynthia

    I want to take this opportunity to thank you for this post, Cynthia. 

    I feel ashamed of myself for not having the guts and courage that you displayed - to say what you had to say.  And you told the truth of the matter.  And that's exactly how it has all unfolded.  It has been downright mean at times.  I remember times when we were told "GD It" get your a$$ off the couch and exercise or you deserve cancer...and the exercise post that ran incessantly for over a full year....in 5 different parts. 

    It was insulting...it was demeaning...and more to the point, it was condescending...

    The message over and over to me is...if you're not doing what I'm doing, then you're not doing it right....which seems funny to me....because I'm heading towards my 9th year...I must be doing something right...

    And the bashing of all doctors - when I literally owe my life to several really fine surgeons and western medicine practicioners, who sewed me back together and gave me a chance to fight on...

    I agree with you about leaving this board...I've had one foot out already...and this BS over the stuff being discussed and how we're supposed to believe wears thin on my last nerve.  You're right, it was family back then...and I know you were here then.  It was a different feel then...it was a family feel then...it wasn't a cancer board...I always told Shayenne (Donna) that it was a Life board.

    It is a shame how things have become and I'm tired of listening to most of it now...it's on two boards now...same stuff...different IP addresses...

    On a board, all one can do is present material or discuss a subject...you can never force anyone to conform to your beliefs...not sure you'd really want to if it were not on their own volition anyway...anyway, the message has been overbearing at times...

    It's never about the message itself - only the tone with which it is delivered...

    This may indeed be one of my last posts as well...you've given me something to think on...maybe this is a good time...if there ever is such a thing....

    Anyway...well said!

  • tommycat
    tommycat Member Posts: 790
    Chiming in too

    Really Pete....saying you are going to "flag" everyone who disagrees with you is petty and downright unhelpful.

    This is a complicated disease and it helps to have differing opinions.

    Simmer down is right.

    Tommycat

    PS: Thanks for the post Cynthia

  • devotion10
    devotion10 Member Posts: 623

    Please stay around Cynthia

    Please stay around Cynthia and skip the threads where folks aren't playing nice. 

    Thank you for your encouragement

    For a long time I did try to skip the threads where people were not playing nice ... seeing your lovely children I know you have experience as a parent with picking your battles :)  This is wise advice. I do feel though that if we do not speak up when the level of discourse becomes so disrespectful ... we ourselves become just as guilty.  

    I very much appreciate your thoughtfulness to respond to my message.

    Cynthia

  • devotion10
    devotion10 Member Posts: 623
    geotina said:

    Cynthia:

    Bravo, well said.  I, also, found respect to be limited.  This is a support board and I am so very grateful for the support I received in George's journey.  The information on treatments, etc.  George and I made the best decisions we could with what we were facing. 

    I am so very sorry your husband is not doing well.  If you need to vent, ask question, anything please send me a pm.  There is another member who recently lost her significant other and we pm each other often, and have even talked on the phone.  Together, we are getting through the tough day by day stuff and the support has been immeasurable to us. 

    Take care - Tina

    Tina you have been in my thoughts

    after George's passing. I appreciate your support for my message.  

    Yes, the tone of the messages on the board has been steadily getting more and more disrespectful and I just felt I needed to speak up.  I have read messages on the site everyday since 2008 when my husband was first diagnosed.  It used to feel like such a safe and comforting place.  There has been a change and it seems sadly that newcomers seem to have accepted that this is what to expect here ... I have been amazed at the newcomers who feel that the level of disrespect in some of Pete's posts is acceptable -- they do not realize it has not always been this way and that a support board can have dissenting opinions regarding treatment decisions without aggressive insults and putdowns.

    Thank you for your sympathy regarding my husband ... yes, because of his thankfully long survival his cancer has unfortunately moved on to brain mets which he had sterotactic radiation for about a month ago.

    I will send you a pm.  Sincere thanks -- Cynthia

  • devotion10
    devotion10 Member Posts: 623
    abackhou said:

    Please Stay

    Please stay Cynthia, and I wish you and your husband all the very best.  I am also in a similair situation to your husband and would like to hear how he gets on and deals with this disease.

     

    I agree with your comments regarding Pete's post, well said from the heart.

     

    I also find John's posts very informative and unbiased.

     

    Take care, Andrew

    You have my support Andrew

    and anytime that you wish to share experiences in this journey I would welcome that. Yes, your situation is similar to my husband's and i understand that there is an overwhelming set of emotions that you deal with every moment, of every day.

    I thank you for your courage to say you agree with my comments reagrding Pete's posts.  He seems like a fine man that has lost sight of what is appropriate here.  My comments were from the heart, I just did not feel that I could continue to simply try to avoid his threads or comments.  He has valuable insights but sorting thought the venom became increasingly difficult.  I simply felt the unkindness had no place here ... but, maybe I am wrong ... it may be me who has no place here.

    You will be in my thoughts and you may write to me anytime.  I sincerely appreciate your encouragement for me to stay on the board.

    Cynthia

     

  • angelsbaby
    angelsbaby Member Posts: 1,165
    tommycat said:

    Chiming in too

    Really Pete....saying you are going to "flag" everyone who disagrees with you is petty and downright unhelpful.

    This is a complicated disease and it helps to have differing opinions.

    Simmer down is right.

    Tommycat

    PS: Thanks for the post Cynthia

    RIGHT ON

    To everyones post here, i felt like it was family back then when angel was so sick  and thank goodness for that feeling and for all of u who helped me so much

     

    michelle

     

     

  • devotion10
    devotion10 Member Posts: 623

    Dear Cynthia

    Please my dear do not go, nor stop posting.  If there was a love button for what you bravely spoke up and said, I would be clicking on it a hundred times.

    Thank you for your words, they were well "spoken".

    I hope some day we get back to the way we used to be, supporting each other with words of comfort and our experiences to help those that have just started this awful journey.

    Winter Marie

     

    Winter Marie – my hope also is that we

    get back to the way we used to be on the board.  I can see by many messages that are cropping up that many who have been silent … have also been offended and disturbed by the tone of some of the discussions … not the content … the tone.

    You were kind to refer to me as brave for speaking up.  Perhaps we may turn a corner with the recent discussion.

     

    I have this little quote that I keep on my desk.  I have had it for over 35 years and I often look at it when things get challenging in my marriage or with family …

     

    The closer we are to someone the more necessary do tact and courtesy become.

    It is a sort of odd statement, rather archaic sounding, but it helps me to remember that we should not let respect erode as we let our guard down to those close to us.

     

    Thank you again for your support.

     

     Cynthia

     

  • devotion10
    devotion10 Member Posts: 623

    Dear Cynthia,

     

    Thank you! You just stated what I've been fuming about for an hour after I read Pete's very disrespectful post to John .  I was just too angry to express it (at least to the community at large).   So, please, don't leave this board, the "silent majority" is here to help and support you.

    Cynthia

    From one Cynthia to another …

    I am glad that I was able to put into words most of what I was thinking as I too had strong feelings when I read Pete demanding John get off the message thread. I would like to stay on the board and I do hope that there really is silent majority that will become more vocal and help monitor when things get out of hand.  I have just been so puzzled by the attitude that everything is ok to say, that somehow it falls in the category of venting.

     Thank you for your support.

    Cynthia

  • devotion10
    devotion10 Member Posts: 623
    Dyanclark said:

    Please all stay

    Dont let us scare anyone away with our opinions, we need as many people as possible on this discussion board.  I learn so much on this board.  Everyone has to do what they feel comfortable with.  I dont even make my husbands cancer decision that is for him to decide.   I try to help him make good sound decision, but it is not my body with cancer.   I dont know if it was me with cancer if I could do any of these harsh treatments so my hats off to all with cancer my heart achs for you all.  My nephew died at 32 years of age after a 5 year battle with testicular cancer and believe me it was hell especially for my sister      I say do what works for you.   Having said that, we need eveyones comments.Wink

     

    Thanks for your support to stay, and

    I agree with you that our board is made healthy by a variety of opinions.  But, opinions are not what I have stated concern me …  it has been the aggressive tone and insults.  To me, this is simply never acceptable on a cancer support board and while it may arise from time to time we have a responsibility to work against those very negative and hurtful forces.  We must all agree that this journey is hard enough without that. 

    Cynthia

  • YoVita
    YoVita Member Posts: 590
    Part of the Silent Majority

    I think.  I agree with you 100%.  It's the tone, not content, that needs adjustment.  Thank you for posting and reminding all to be respectful in their posts.  

  • devotion10
    devotion10 Member Posts: 623

    We all need all of you

    I am so glad to find out that other people here feel the same way as I have been towards Pete's posts.  I havent said anything before this because of being sort of a newbie here(6/12) and most of the responses to his posts are positive.  The tone of his posts,at times, have left me feeling guilty for not tryin to do the same things for my husband.  We don't have the finances to go to Germany for expensive treatments and how would we leave the kids for that?  At one point, my husband was losing 1 lb per day no matter how much he ate.  I decided that trying to get that stopped was more important than anything else at that time so I fed him anything he was willing to eat, that's right, I stocked up on junk food in all forms.  Thankfully we got past that and he put weight back on and looks healthy again and has worked full time since his diagnosis except for couple hospital stays.  We are all here to help eAch other and even though I don't post much doesn't mean that I haven't taken suggestions from u all at different times.  All of the vitamin supplements he takes were recommended by someone here.  Thanks for all of you!!!

    Thank you for responding

    You have stated precisely one of the reasons I am concerned about the tone of Pete’s posts … it makes newcomers feel guilty when they read that the options being offered by their oncology team are suspect and inferior.  The initial emotional rollercoaster of a cancer diagnosis … and then seeking out this board for support … and then coming here … I just hope for it to be like it was when I first came … a welcoming, comforting, and reassuring experience.

    Trust that while there are many options out there … many, many have been helped with conventional treatments and also some with alternative. It is not perfect, but we must do what we can -- what is within our financial means, how we feel about our family unity, and simply what our individual hearts feel comfortable with.

    Cynthia

  • devotion10
    devotion10 Member Posts: 623
    Sundanceh said:

    Big Applause, Cynthia

    I want to take this opportunity to thank you for this post, Cynthia. 

    I feel ashamed of myself for not having the guts and courage that you displayed - to say what you had to say.  And you told the truth of the matter.  And that's exactly how it has all unfolded.  It has been downright mean at times.  I remember times when we were told "GD It" get your a$$ off the couch and exercise or you deserve cancer...and the exercise post that ran incessantly for over a full year....in 5 different parts. 

    It was insulting...it was demeaning...and more to the point, it was condescending...

    The message over and over to me is...if you're not doing what I'm doing, then you're not doing it right....which seems funny to me....because I'm heading towards my 9th year...I must be doing something right...

    And the bashing of all doctors - when I literally owe my life to several really fine surgeons and western medicine practicioners, who sewed me back together and gave me a chance to fight on...

    I agree with you about leaving this board...I've had one foot out already...and this BS over the stuff being discussed and how we're supposed to believe wears thin on my last nerve.  You're right, it was family back then...and I know you were here then.  It was a different feel then...it was a family feel then...it wasn't a cancer board...I always told Shayenne (Donna) that it was a Life board.

    It is a shame how things have become and I'm tired of listening to most of it now...it's on two boards now...same stuff...different IP addresses...

    On a board, all one can do is present material or discuss a subject...you can never force anyone to conform to your beliefs...not sure you'd really want to if it were not on their own volition anyway...anyway, the message has been overbearing at times...

    It's never about the message itself - only the tone with which it is delivered...

    This may indeed be one of my last posts as well...you've given me something to think on...maybe this is a good time...if there ever is such a thing....

    Anyway...well said!

    Craig, you absolutely must stay …

    I would not be missed so much as not many folks these days know my story or that of my husband.  But you Craig have been open and generous with your life.  You have been kind and thoughtful to others.  You also have the ability to be straightforward with your opinions while still remaining kind.  And you are a long-term survivor who has bravely endured treatments options that can inspire others in their journey.

    You know, it is not my desire to stir up trouble … but, to calm the waters and reign in the growing acceptance that anything said here is acceptable simply because one is dealing with cancer.

    Stay, but please speak your mind and do not be silent.  As an old-timer and a survivor your opinion matters.

    I appreciate your support and publically thanking me for my post.

    Cynthia