Things people say or don't say but it's okay

[JudeD59]

When I first joined this board after being diagnosed, I had a tough decision to make. I could choose the standard treatment for rectal cancer (radiation and Xeloda followed by surgery and then six months of Folfox) or I could choose a clinical trial (no radiation, three months of Folfox, then surgery, followed by three more months of Folfox). I was frightened and overwhelmed by the research I had done. Many people offered their opinions, advice, and support. Some were very direct about which choice they thought I should make. I didn't see it as bullying at all. I was grateful that people who had years of experience with this disease were willing to share their thoughts with me and help make the decision process easier.

You are new to this disease and this board. Many members here have been not only fighting the fight for years as patients or caregivers, but they come back regularly to help those, like you, who are just starting the battle. Members who have been NED for years still pay it forward by showing up here. You have no idea how many friends they have made on here and then lost to this sucky disease. It makes you feel angry and helpless which can make you passionate when giving advice. Do you honestly think they stick around to bully people? They stick around to try to help save lives. They've had to watch as people they care about made choices about treatment that ended up killing them. Everyone deserves to choose their own path, but it can be difficult to watch as the treatment they've chosen fails and the member we've grown to care about weakens and then loses the fight.

We are also very protective of the reputation of the board and what new members see when they first find us. Most new members are in shock and overwhelmed and looking for a miracle cure, an easy way out of this nightmare that doesn't involve radiation or being cut open or having toxins pumped into their system. And who can blame them? But some of the alternative treatments offered will let the cancer eat away at their bodies until traditional treatments are no longer possible. We don't want to bully anyone into anything, but we have an enormous amount of experience and research into treatments behind our membership ranging from standard treatments to alternative treatments to clinical trials. And sometimes we get people who post once to promote some miracle cure book or website and never come back again, one that has been looked at through study after study and has been proven to be hogwash in the fight against this disease. So we want to be sure that any "cures" being posted have valid research and studies behind them to protect our most vulnerable members. You can understand that, I'm sure.

Also, this is the internet, where unless your words are accompanied by a hundred emoticons, it's hard to judge tone and intent. Passionate feeling can look like bullying. A large number of people who've been through the same experience all agreeing with each other can feel like being ganged up on. The people I've met on here are some of the kindest I've met in my life. I would have had a much harder time getting through my battle without their support and advice. Give them a chance. Drop your defenses a bit and acknowledge that they have years and years of experience, research, and information to share with you. You and your husband will still make your own choices at the end of the day, but you'll do it with so many more facts to help you make that choice. I personally learned more on here from asking questions and reading about other member's experiences than I did from my doctors. That made me so much more prepared when I met with my doctors. They tend to only tell patients what they think they need to know, but if you ask the right questions so they know you have a good basic understanding of the treatments, they will open up and tell you more.

And lastly, when you really think deeply about it, you have to know that coming on a board full of people who are battling colorectal cancer and have lost so many they care about to colorectal cancer and saying that 47% of them could have prevented it by living a healthier lifestyle wasn't a good idea. Even if it's true, it's hurtful and not a good idea. It's called blaming the victim and these victims have already had their lives shattered. They don't need to hear that it was their fault. If a woman is raped, do you tell her she deserved it for being alone in a bad part of town late at night? Of course not. You support her, you comfort her, you help her through it. People who are going through the hell of cancer don't benefit from hearing that if only they had exercised more or ate less beef and more vegetables, they could have avoided hell. They are already in hell. That ship has sailed. So support them, comfort them, help them through it.

Here's a friendly emoticon so you know I'm not yelling but speaking in a reasonable, calm voice of friendship.

Judy

[aja1121]

Beautifully said, Judy.

[Bev G]

When I first joined this board after being diagnosed, I had a tough decision to make. I could choose the standard treatment for rectal cancer (radiation and Xeloda followed by surgery and then six months of Folfox) or I could choose a clinical trial (no radiation, three months of Folfox, then surgery, followed by three more months of Folfox). I was frightened and overwhelmed by the research I had done. Many people offered their opinions, advice, and support. Some were very direct about which choice they thought I should make. I didn't see it as bullying at all. I was grateful that people who had years of experience with this disease were willing to share their thoughts with me and help make the decision process easier.

You are new to this disease and this board. Many members here have been not only fighting the fight for years as patients or caregivers, but they come back regularly to help those, like you, who are just starting the battle. Members who have been NED for years still pay it forward by showing up here. You have no idea how many friends they have made on here and then lost to this sucky disease. It makes you feel angry and helpless which can make you passionate when giving advice. Do you honestly think they stick around to bully people? They stick around to try to help save lives. They've had to watch as people they care about made choices about treatment that ended up killing them. Everyone deserves to choose their own path, but it can be difficult to watch as the treatment they've chosen fails and the member we've grown to care about weakens and then loses the fight.

We are also very protective of the reputation of the board and what new members see when they first find us. Most new members are in shock and overwhelmed and looking for a miracle cure, an easy way out of this nightmare that doesn't involve radiation or being cut open or having toxins pumped into their system. And who can blame them? But some of the alternative treatments offered will let the cancer eat away at their bodies until traditional treatments are no longer possible. We don't want to bully anyone into anything, but we have an enormous amount of experience and research into treatments behind our membership ranging from standard treatments to alternative treatments to clinical trials. And sometimes we get people who post once to promote some miracle cure book or website and never come back again, one that has been looked at through study after study and has been proven to be hogwash in the fight against this disease. So we want to be sure that any "cures" being posted have valid research and studies behind them to protect our most vulnerable members. You can understand that, I'm sure.

Also, this is the internet, where unless your words are accompanied by a hundred emoticons, it's hard to judge tone and intent. Passionate feeling can look like bullying. A large number of people who've been through the same experience all agreeing with each other can feel like being ganged up on. The people I've met on here are some of the kindest I've met in my life. I would have had a much harder time getting through my battle without their support and advice. Give them a chance. Drop your defenses a bit and acknowledge that they have years and years of experience, research, and information to share with you. You and your husband will still make your own choices at the end of the day, but you'll do it with so many more facts to help you make that choice. I personally learned more on here from asking questions and reading about other member's experiences than I did from my doctors. That made me so much more prepared when I met with my doctors. They tend to only tell patients what they think they need to know, but if you ask the right questions so they know you have a good basic understanding of the treatments, they will open up and tell you more.

And lastly, when you really think deeply about it, you have to know that coming on a board full of people who are battling colorectal cancer and have lost so many they care about to colorectal cancer and saying that 47% of them could have prevented it by living a healthier lifestyle wasn't a good idea. Even if it's true, it's hurtful and not a good idea. It's called blaming the victim and these victims have already had their lives shattered. They don't need to hear that it was their fault. If a woman is raped, do you tell her she deserved it for being alone in a bad part of town late at night? Of course not. You support her, you comfort her, you help her through it. People who are going through the hell of cancer don't benefit from hearing that if only they had exercised more or ate less beef and more vegetables, they could have avoided hell. They are already in hell. That ship has sailed. So support them, comfort them, help them through it.

Here's a friendly emoticon so you know I'm not yelling but speaking in a reasonable, calm voice of friendship.

Judy

Judy, what a beautiful, kind, well-reasoned post. I feel like framing it. Thank you for your thoughtful post.

[peanut_8]

Judy you have such a rare talent with words. Such a beautiful and insightful response.

[Maia]

Thank you, Jude : )

[LPL]

Judy, Thank You So much for writing this !
That is how it felt for me joining this friendly forum.
Nothing but kindness and sharing of informed & helpful advise. I wish I could write like you do !!

[ams5796]

Judy,

That was a wonderful post. It really sums up how we all feel about this place. I wish all newbies could read this.



Ann

[Lee]

Judy you have such a rare talent with words. Such a beautiful and insightful response.

Could not have said it better. Thank you Judy for those beautiful words,

Lee

[CRguy]

WORD !

[Swirdfish]

Well said Judy!!!

Lets get back to kicking cancers butt..

[JudeD59]

Oh I have a wee confession . I am a daughter. I had trouble posting about six years ago so tried using my son's name . Stewart! He is 17 too. I am so touched your son has been so mature. My son has been great with his support when my mum is ill but he is also great at picking up on my needs too.
I have decided against trying to gain an associate Medical doctorate specialising in oncology. I thought even a bad oncologist must be better clinically than my novice status . But I keep ahead of what is coming through and decided a supportive role was probably much more useful to her.
I have learnt loads and totally change along the way.
I wish you every success and you must be a good dad. There is a reason I support my mum!!!
Take care,
Stu

Stu! I'm in shock! All this time talking with you and I thought you were a son, not a daughter. Doesn't change the fact that you're one of the nicest people on the board, but I'm still shocked. I have a special affection for daughters since I have four of my own. Your mom and son are both lucky to have you in their corner.

Judy

[JudeD59]

Sorry. Got distracted by Stu's confession.

Thank you to everyone for your lovely comments. That post is dedicated to Delinda and CrystalD and Voxx and Bella and so many others. Always in our hearts.

Judy

[mpbser]

Judy,

Your message is heard, loud and clear. All of it is much appreciated, except one point as discussed below. (I still think that there are some really nasty people here who probably would be the same way, cancer hardships or not. I shall continue to mute them.)

I absolutely cannot disagree more about the accusation, "Even if it's true, it's hurtful and not a good idea. It's called blaming the victim and these victims have already had their lives shattered" regarding "it is estimated that 47% of colorectal cancers could be prevented by appropriate lifestyles." First off, the quote is taken out of context. Second, "it is estimated that 47% of colorectal cancers could be prevented by appropriate lifestyles" is directly quoted from one of the journal articles I linked to. I find that statistic, coupled with all the other data about anti-cancer properties of various extracts/foods/supplements/etc. and the FACT that some people (my friend to whose facebook I linked) are reversing their cancers without chemo or with supplements/diet in conjunction with chemo, a message of hope. If lifestyle has caused something, and doing the opposite of said lifestyle could reverse it, that just seems like wonderful news to me. Why is it not a good idea to share this information?

I understand that there is a fatalism that so many people with cancer feels. My husband goes through these moments but I pull him through them and out of this old school paradigm that treats cancer as something that absolutely cannot be controlled by its environment. That old paradigm treats a cancer diagnosis as an effective death sentence. The latest research actually shows that this IS NOT TRUE. The new immunological paradigm of cancer has only been around for just about a decade and I know that new ideas take a very long time to take hold in medicine.

As I have described a bit in some of these threads, I have reversed my CVD. Once I got over the immediate shock of learning I had a genetic mutation that predisposed me to CVD, I was overjoyed to learn how my really, really, really poor lifestyle caused my genetic mutation to "express" and to create a cascade of events that lead to my CVD. Learning that I could "cure" myself by cleaning my lifestyle up and supporting my CV system and immune system with mega doses of supplements and natural therapies did not make me angry or think that I was a victim. I cannot even wrap my head around that. This knowledge, this information, was power. It gave me hope and strength. I took control over my my body and my life.

I honestly would not be here or at least not for much longer (in 2000, mother died of massive stroke at age 47 after an extremely unhealthy lifestyle and we assume she passed the SNP to me) had I continued down the path that I had been on previously. I told her when I was with her the week she was dying in the ICU that in her dying she was giving me new life. I was going to learn from her example, I was determined and I was not going to end up dead so young. I didn't smoke a cigarette after that and stopped drinking alcohol. I went to Dr. Michael Schacter in Suffern, NY (http://www.mbschachter.com/) who diagnosed me with mercury toxicity (off the charts levels from grinding teeth full of amalgam fillings) as well as elevated lead and cadmium levels. I chelated those out of my system with DMSO and EDTA. I had my fillings removed by a holistic dentist. I started fasting and had colon hydrotherapy because I had years of built up waste and candidiasis. I used grapefruit seed extract to eliminate the candida. My gut, and my mind, back then was a total mess. Dr. Schacter essentially told me that my diet and lifestyle were large contributing factors to my health problems.

I had had massive health issues up until that point that I was able to reverse. After two years of absolutely no sugar and an extremely strict regimen, I felt like was born again.

Over time, however, I slipped...a decade long bad relationship lead to a near decade of increasingly bad habits returned (2002-2010) as did poor health as a result, hence my C-IMT results showing CVD/atheroschlerosis in 2010. This was actually the first time I had ever had a C-IMT sonogram and was when I was tested for genetic mutations for the first time. (This was a new doctor, and I have been going to him for the past 7 years. He is awesome. He's so open minded that he asks ME what new information I have to share about various supplements.) Detox round II was 2010 to 2011, and I completely reversed the CVD/atheroschlerosis within a year. Over the past seven years, some of the artheroschlerosis has returned (again, directly correlating to lifestyle.... once I reversed it, I gradually slacked off more and more, not a good idea).

Anyway, as inorganic8 put it, I am trying to make sense of something, this nasty thing called cancer, and this is the way I do it.

If this is a board where it's all about misery loving company, with no hope and comprised only of victims who tolerate bad behavior based on seniority and where the most snarky of sarcasm is not only accepted but cheered, then it isn't the board for me, of course. Time will continue to tell and I will, as I may have already said, just use the mute button. I have expressed deep thanks in other posts and have engaged in enough useful productive exchange of information to make me think that this isn't just a board of people who play no role other than to criticize, attack, and personally insult.

Let me repeat, Judy, I appreciate your contribution.

here is a fun read: http://www.independent.co.uk/news/healt ... 83521.html

[Maia]

That post is dedicated to Delinda and CrystalD and Voxx and Bella and so many others. Always in our hearts.

Oh, the fine people you're naming!
Now I imagine Voxx commenting on all this:
HA.

: )

Edited to add: I want to remember this night dianne052506 and Skypup.
I'm going to copy here a tale that Dianne liked very much:

"Once upon a time, Buddha, with his monk disciples stopped by a village. His intentions were to deliver sermons and spread the message of righteousness and liberation. Some of the villagers however did not receive him well. They called him an atheist, used abusive language and asked him to leave the village. Buddha, however, remained quiet and peaceful as ever. He did not respond to any of the verbal abuse. His face expression did not change.

His disciples could not bear their master being abused, they could not see him treated that way. They felt bad and hurt. Taking cue from their master, they chose to stay quiet however.

The disgruntled villagers left after a while. Peace ensued. Only Buddha and his disciples were left there.

“O Venerable One!” Shariputra, his close disciple said to Buddha, “how come you could stay so calm? How come it did not bother you?”

Buddha’s eyes half closed and his elusive smile remained unchanged for a good few minutes. After which he spoke the following words:

“If someone offers you a gift and you refuse to take it, to whom will it belong?”

“It will remain with the one who offered it, Master,” Shariputra replied after some thought.

“In much the same manner, my spiritual son, I refused verbal gifts of the villagers,” Buddha added, “How can I be burdened by something I do not accept? And why would I stop them if they felt good?”

Upon hearing his master, tears trickled down Shariputra’s face. He understood the profound wisdom and compassion behind the golden words of Buddha.

We don’t control what others say about us, but we always have the choice to accept, reject or ignore whatever is offered to us, verbally or materially.

If you do not accept whatever gives you grief, well then, it can never grieve you. Just before you accept or reject anything, any opinion, there is a quiet moment. It is a short one. It is the moment to exercise your choice. Much like the auction where you only have so much time before the hammer goes down. Once you consciously accept something, getting rid of it becomes harder later on.

Next time, anyone tells you what all they don’t like about you, you have the choice to reject it; they may give you a hundred reasons why your goals are too ambitious, you have the choice to ignore them; they may have a list of all the things you lack, you have the option to not buy their opinion. The choice is entirely yours, independently yours. And it is your choice alone that is going to make a direct impact on your state of mind and being.

The choices we made yesterday determine where we are today and the choices we make today will dictate where we may end up tomorrow.
Never let others’ words or gestures make you feel a certain way. It is not easy but it is possible with practice.
You dictate your own rules. That requires an awareness."

[Swirdfish]

That post is dedicated to Delinda and CrystalD and Voxx and Bella and so many others. Always in our hearts.

Oh, the fine people you're naming!
Now I imagine Voxx commenting on all this:
HA.

: )

Edited to add: I want to remember this night dianne052506 and Skypup.
I'm going to copy here a tale that Dianne liked very much:

"Once upon a time, Buddha, with his monk disciples stopped by a village. His intentions were to deliver sermons and spread the message of righteousness and liberation. Some of the villagers however did not receive him well. They called him an atheist, used abusive language and asked him to leave the village. Buddha, however, remained quiet and peaceful as ever. He did not respond to any of the verbal abuse. His face expression did not change.

His disciples could not bear their master being abused, they could not see him treated that way. They felt bad and hurt. Taking cue from their master, they chose to stay quiet however.

The disgruntled villagers left after a while. Peace ensued. Only Buddha and his disciples were left there.

“O Venerable One!” Shariputra, his close disciple said to Buddha, “how come you could stay so calm? How come it did not bother you?”

Buddha’s eyes half closed and his elusive smile remained unchanged for a good few minutes. After which he spoke the following words:

“If someone offers you a gift and you refuse to take it, to whom will it belong?”

“It will remain with the one who offered it, Master,” Shariputra replied after some thought.

“In much the same manner, my spiritual son, I refused verbal gifts of the villagers,” Buddha added, “How can I be burdened by something I do not accept? And why would I stop them if they felt good?”

Upon hearing his master, tears trickled down Shariputra’s face. He understood the profound wisdom and compassion behind the golden words of Buddha.

We don’t control what others say about us, but we always have the choice to accept, reject or ignore whatever is offered to us, verbally or materially.

If you do not accept whatever gives you grief, well then, it can never grieve you. Just before you accept or reject anything, any opinion, there is a quiet moment. It is a short one. It is the moment to exercise your choice. Much like the auction where you only have so much time before the hammer goes down. Once you consciously accept something, getting rid of it becomes harder later on.

Next time, anyone tells you what all they don’t like about you, you have the choice to reject it; they may give you a hundred reasons why your goals are too ambitious, you have the choice to ignore them; they may have a list of all the things you lack, you have the option to not buy their opinion. The choice is entirely yours, independently yours. And it is your choice alone that is going to make a direct impact on your state of mind and being.

The choices we made yesterday determine where we are today and the choices we make today will dictate where we may end up tomorrow.
Never let others’ words or gestures make you feel a certain way. It is not easy but it is possible with practice.
You dictate your own rules. That requires an awareness."

Thanks Maia, I enjoyed that.