CSN Login
Members Online: 13

Pete Simmer Down! My goodness ...

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

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

 

 

 

 

 

 

 

 

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

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

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

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

geotina's picture
geotina
Posts: 2034
Joined: Oct 2009

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

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

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

abackhou
Posts: 77
Joined: Jan 2012

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

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

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

 

herdizziness's picture
herdizziness
Posts: 3328
Joined: Apr 2010

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

 

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

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

 

LivinginNH's picture
LivinginNH
Posts: 1217
Joined: Apr 2010

 

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

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

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

Dyanclark's picture
Dyanclark
Posts: 236
Joined: Apr 2012

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

 

thxmiker's picture
thxmiker
Posts: 1170
Joined: Oct 2010

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

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

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

bailee2012
Posts: 56
Joined: Jul 2012

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!!!

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

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

Sundanceh's picture
Sundanceh
Posts: 4252
Joined: Jun 2009

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!

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

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

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

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

angelsbaby's picture
angelsbaby
Posts: 1150
Joined: May 2008

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's picture
devotion10
Posts: 642
Joined: Jan 2010

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

angelsbaby's picture
angelsbaby
Posts: 1150
Joined: May 2008

cynthia

 

michelle

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

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

YoVita's picture
YoVita
Posts: 530
Joined: Mar 2010

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's picture
devotion10
Posts: 642
Joined: Jan 2010

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

Cynthia

Trubrit's picture
Trubrit
Posts: 980
Joined: Jan 2013

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
Posts: 1132
Joined: Aug 2012

You have a good heart...and you may well be on to something.

wawaju04976's picture
wawaju04976
Posts: 318
Joined: Dec 2012

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

annalexandria's picture
annalexandria
Posts: 2029
Joined: Oct 2011

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's picture
ron50
Posts: 1240
Joined: Nov 2001

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 .

Varmint5's picture
Varmint5
Posts: 369
Joined: Feb 2012

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

Sandy

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

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's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

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's picture
Trubrit
Posts: 980
Joined: Jan 2013

 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. 

 

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

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's picture
wawaju04976
Posts: 318
Joined: Dec 2012

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's picture
wawaju04976
Posts: 318
Joined: Dec 2012

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

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network