Pete Simmer Down! My goodness ...

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Comments

  • devotion10
    devotion10 Member Posts: 623 Member
    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

    Thank you Tommycat

    From the responses I have received to this post both on the site and in private messages ... it seems this was a very needed discussion.  I think everyone wishes Pete the very best and want to support him, but their are bounadries that have been pushed to the edge.  Many seem quite stressed by the evolving negative tone of the discussions.

    Thanks again,

    Cynthia

  • devotion10
    devotion10 Member Posts: 623 Member
    YoVita said:

    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.  

    I appreciate your response YoVita

    I know sometimes it is easy to just overlook a discussion that might be controversial.  Taking the effort to write was kind.

    Cynthia

  • devotion10
    devotion10 Member Posts: 623 Member

    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

     

     

    Michelle ... I remember reading so many of

    your posts and following your journey when Angel was sick.  Maybe the board can return to a place of comfort and support for everyone, including Pete, if we can just bear in mind the simplest of kindnesses to one another.

    If I stay ...

    I will continue to try to be a voice of reason and kindness. I will do it for myself -- but also for all those patient and supportive individuals who have passed on ... folks whose gentle nature, even in the midst of their own tremendous struggles, guided and consoled so many.

    Cynthia

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    I wonder

    Pete seems like a decent fellow. It makes me wonder  maybe his personality is being effected by some of his treatments. Heaven knows our emotions are effected by conventional treatments, so why not alternative treatments may be effecting him. 

     

  • jen2012
    jen2012 Member Posts: 1,607 Member
    Trubrit said:

    I wonder

    Pete seems like a decent fellow. It makes me wonder  maybe his personality is being effected by some of his treatments. Heaven knows our emotions are effected by conventional treatments, so why not alternative treatments may be effecting him. 

     

    You have a good heart...and
    You have a good heart...and you may well be on to something.
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    I think everything has been said here,

    just wanted to add that I share your feelings, Cynthia...it's not the content that is the issue AT ALL, it is the tone and attitude delivered along with that content that is the problem.  Ann Alexandria

  • ron50
    ron50 Member Posts: 1,723 Member
    G'day Guys and Girls
    I have been around this board for some time as you can see by my joined date. There are many subjects over the years that have hit a nerve. Ihave seen many a debate turn into a situation that no one wants to see on a support forum. For me this forum is a place to comfort others and where experience permits to give a heads up on areas of concern with our treatment. My forte is experience of long term survival.
    What I avoid is getting sucked in. There are opinions here that I don't particularly agree on so I don't comment. There are a lot of comments that I agree with that I also don't comment upon. When I was fighting cancer I listened to all of the ideas and then made a choice on which route I would take. There are aspects of my choice that were less than perfect. I am not In great health thanks to some of those treatment choices but I am still alive and ca free 15 years later. My treatment and my choices don't matter a fig now. Treatments have moved on . What does matter is that we have a choice of commenting or not commenting. All of us are here for the same reason,the love and support of our fellow sufferes,hugs Cynthia and Craig. The longer we stay here the harder it gets,the losses mount and each effects us more so lets dispense more hugs and less philosophy.. Ron .
  • wawaju04976
    wawaju04976 Member Posts: 316 Member
    Trubrit said:

    I wonder

    Pete seems like a decent fellow. It makes me wonder  maybe his personality is being effected by some of his treatments. Heaven knows our emotions are effected by conventional treatments, so why not alternative treatments may be effecting him. 

     

    You know, it's like AA: take

    You know, it's like AA: take what you want/need, and leave the rest. I do both conventional and an alternative. I threw that out there back along; however, I am not pushing it, and I certainly would not give up my conventional treatment. My fiance and I chose to do both. But that is our decision. I also have a notebook, and I write down anything on here that I think I could present to my oncologist if my tx stopped working, anything from chemos to surgeries (and alternatives). This forum has/is very helpful, and no one should be shamed, pressured, etc. into txs. My wish is that for all of us, whatever we decide to do, it is helpful. Perhaps one chooses not to have tx. If that person is comfortable and at peace with that decision, then s/he should not feel pressured into something else.

    Again, take what you want, leave the rest. I write down tx from here that I feel I would be comfortable with. I leave the rest, but shame no one for what they choose to do. Most of us do this; think about what you might say to someone else and how it might be perceived by them. This is not a fun disease, and no one should have to have added burden for what they are doing for tx.

    Judy

  • Varmint5
    Varmint5 Member Posts: 384 Member
    ron50 said:

    G'day Guys and Girls
    I have been around this board for some time as you can see by my joined date. There are many subjects over the years that have hit a nerve. Ihave seen many a debate turn into a situation that no one wants to see on a support forum. For me this forum is a place to comfort others and where experience permits to give a heads up on areas of concern with our treatment. My forte is experience of long term survival.
    What I avoid is getting sucked in. There are opinions here that I don't particularly agree on so I don't comment. There are a lot of comments that I agree with that I also don't comment upon. When I was fighting cancer I listened to all of the ideas and then made a choice on which route I would take. There are aspects of my choice that were less than perfect. I am not In great health thanks to some of those treatment choices but I am still alive and ca free 15 years later. My treatment and my choices don't matter a fig now. Treatments have moved on . What does matter is that we have a choice of commenting or not commenting. All of us are here for the same reason,the love and support of our fellow sufferes,hugs Cynthia and Craig. The longer we stay here the harder it gets,the losses mount and each effects us more so lets dispense more hugs and less philosophy.. Ron .

    Ron

    That was a perfect response to this topic. Thank you for your voice of reason.

    Sandy

  • devotion10
    devotion10 Member Posts: 623 Member
    Varmint5 said:

    Ron

    That was a perfect response to this topic. Thank you for your voice of reason.

    Sandy

    Hugs, yes, to me these are our kind responses

    I really hope the important subject of the serious negative tone and the insults that have been used in various posts do not get watered back down to  ... oh ... let's just let everybody say whatever they want to say even if it is insulting ... and if you don't like it just move on. 

    I don't think that is a healthy or supportive board. I hold firm to the belief that support is when we care enough about one another to be considerate, kind, and respectful.  This is what I feel it is to be reasonable and supportive. 

    Many have brought up wonderful topics here and expressed some feelings that may be uncomfortable.  Pete, if you are reading all this ... I think what you are hearing are hurt feelings and confusion regarding your actions from people who have cared about you and feel that you have put them down and have been insulting.  Remember we have even supported your coffee enemas even though it is unlikely we would ever do one! :)

    Cynthia

     

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    thanks cynthia,

    first you stick around, I am going on a well deserved CSN holiday.

    your comments deserve a detailed response, so here goes.

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

    he was not being supportive, I asked for support, he did not make reference to the videos, he was being uninformed and argumentitive. when a few people replied, he was all over them. I just present, here is a video enjoy. I let the material speak for itself, its just the material does not get a chance to speak. the ketogenic diet maybe a standard of care oneday for colorectal, it does not harm, it may help. for trying to defend the discussion I get shot, so be it.

    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) ...

    yes, but not just usa, all conventional systems, at leasting pointing out weak points gives some the options of covering the deficincies. your system has many failings, i pointed them out for you guys to fix, I have my hands full with australia. 

    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 ...what I dreamed of was others here keeping the exercise message alive for new combers, it did not happen, the simplest proven life saving thing we could do as a community. I let it rest in peace. my onc insisted i do 30 minutes a day or else. foolish me for trying to help others. to prevent other recurrences. ignorance kills.

    You have made a number of references to sheep as if we are all just following our noses because we are choosing conventional treatment ... i apologise for the sheep analogy, but leaving the stage 4 pack is the best hope with my prognosis

    Pete, I get it.  You enjoy(I dont enjoy, i have no option, chemo each fortnight and dieing is not an option I support) 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 am passionate about my therapies, I share my passion. sometimes I tried to encourage people to question chemo in relation to immunotherapies. one precludes the other.

    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. agreed stage 4 has taken its toll, i have called it the way i see it, sorry its come across that way. my perspectives are a very bitter pill. I will spare the group more suffering from the truths as i see them.

    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. I have encouraged research and exercise and hope. i distract myself with germany beauty to mask my loneliness.

    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.  and my therapies offer me the only hope i found

    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 ... that list is in heart also, its exactly why i am extreme

    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. we all have choice, i encourage healthy choices, but thats come at a high cost. its also not effective anyway, but it was a nobel effort on part, but a failure largely. At least I tried.

    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. its well intended and i appreciate it. thanks.

    Cynthia

    ..

  • Trubrit
    Trubrit Member Posts: 5,796 Member

    thanks cynthia,

    first you stick around, I am going on a well deserved CSN holiday.

    your comments deserve a detailed response, so here goes.

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

    he was not being supportive, I asked for support, he did not make reference to the videos, he was being uninformed and argumentitive. when a few people replied, he was all over them. I just present, here is a video enjoy. I let the material speak for itself, its just the material does not get a chance to speak. the ketogenic diet maybe a standard of care oneday for colorectal, it does not harm, it may help. for trying to defend the discussion I get shot, so be it.

    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) ...

    yes, but not just usa, all conventional systems, at leasting pointing out weak points gives some the options of covering the deficincies. your system has many failings, i pointed them out for you guys to fix, I have my hands full with australia. 

    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 ...what I dreamed of was others here keeping the exercise message alive for new combers, it did not happen, the simplest proven life saving thing we could do as a community. I let it rest in peace. my onc insisted i do 30 minutes a day or else. foolish me for trying to help others. to prevent other recurrences. ignorance kills.

    You have made a number of references to sheep as if we are all just following our noses because we are choosing conventional treatment ... i apologise for the sheep analogy, but leaving the stage 4 pack is the best hope with my prognosis

    Pete, I get it.  You enjoy(I dont enjoy, i have no option, chemo each fortnight and dieing is not an option I support) 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 am passionate about my therapies, I share my passion. sometimes I tried to encourage people to question chemo in relation to immunotherapies. one precludes the other.

    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. agreed stage 4 has taken its toll, i have called it the way i see it, sorry its come across that way. my perspectives are a very bitter pill. I will spare the group more suffering from the truths as i see them.

    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. I have encouraged research and exercise and hope. i distract myself with germany beauty to mask my loneliness.

    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.  and my therapies offer me the only hope i found

    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 ... that list is in heart also, its exactly why i am extreme

    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. we all have choice, i encourage healthy choices, but thats come at a high cost. its also not effective anyway, but it was a nobel effort on part, but a failure largely. At least I tried.

    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. its well intended and i appreciate it. thanks.

    Cynthia

    ..

    RIght, I'm going to try this

     my onc insistedi do 30 minutes a day or else. foolish me for trying to help others.

    I've known in my heart that I need to exercise every day, I just ignore it when I'm feeling unwell, but I think I am going to have to make it a goal.  Evem if I break it down into two sessions of 15 minutes. 

    Thanks Pete, this has not been wasted on me. 

     

  • angelsbaby
    angelsbaby Member Posts: 1,165 Member

    Michelle ... I remember reading so many of

    your posts and following your journey when Angel was sick.  Maybe the board can return to a place of comfort and support for everyone, including Pete, if we can just bear in mind the simplest of kindnesses to one another.

    If I stay ...

    I will continue to try to be a voice of reason and kindness. I will do it for myself -- but also for all those patient and supportive individuals who have passed on ... folks whose gentle nature, even in the midst of their own tremendous struggles, guided and consoled so many.

    Cynthia

    Thanks

    cynthia

     

    michelle

  • barbebarb
    barbebarb Member Posts: 464
    Trubrit said:

    RIght, I'm going to try this

     my onc insistedi do 30 minutes a day or else. foolish me for trying to help others.

    I've known in my heart that I need to exercise every day, I just ignore it when I'm feeling unwell, but I think I am going to have to make it a goal.  Evem if I break it down into two sessions of 15 minutes. 

    Thanks Pete, this has not been wasted on me. 

     

    Exercise
    For anyone who feels up to exercising I think its great for our bodies and mind.
    Just taking a walk or chair yoga can do wonders for neuropathy issues and emotional
    challenges we face.
    I try to outsmart those cells and the effects of chemo.
    Please share what works for you.
    Barb
  • wawaju04976
    wawaju04976 Member Posts: 316 Member
    barbebarb said:

    Exercise
    For anyone who feels up to exercising I think its great for our bodies and mind.
    Just taking a walk or chair yoga can do wonders for neuropathy issues and emotional
    challenges we face.
    I try to outsmart those cells and the effects of chemo.
    Please share what works for you.
    Barb

    Exactly, we don't have to do

    Exactly, we don't have to do a daily hour of Zumba. I find just walking the dog for 20 minutes is enough. And she likes it too!!! And I do feel better after getting out.

    Judy

  • wawaju04976
    wawaju04976 Member Posts: 316 Member
    barbebarb said:

    Exercise
    For anyone who feels up to exercising I think its great for our bodies and mind.
    Just taking a walk or chair yoga can do wonders for neuropathy issues and emotional
    challenges we face.
    I try to outsmart those cells and the effects of chemo.
    Please share what works for you.
    Barb

    Exactly, we don't have to do

    Exactly, we don't have to do a daily hour of Zumba. I find just walking the dog for 20 minutes is enough. And she likes it too!!! And I do feel better after getting out.

    Judy