Absolutely! I think it is also a sign of respect for the person being challenged. It shows you care enough about them to want to make all the info and experience possible available to them in making an informed decision. That's what we do here, right? We share knowledge and experience, plus caring and concern.

It is possible to challenge the assumption without challenging the poster personally. Changing 'you should' to 'I think if I were in your situation' provides the same information without the personal attack. Anther useful phrase is: 'it's hard to argue with the numbers' In this case, its the numbers fault, not yours or the person you are responding to.

Please remember that some of these individuals have never posted on a forum, and have not learned to NOT take things personally, regardless of what is said. It is very frustrating when critical information is being ignored, but shouting is not always the best response.

Maria

Maria,

In Heather's case, no one shouted before she got upset. We were all just suggesting a second opinion and when she indicated that she felt attacked, I immediately explained that she needed to understand the history that we had all seen and why we were so passionate and also that I had experienced a little of the "feeling second guessed" when I first came to the board but realized that it was an effort to help me. Several posters tried to explain why we were so concerned especially since we were reacting to her word "easier."

If you go back and read the entire thread, you will see that the more "passionate" discussion came after we were attacked for being heavy handed.

I think you are correct in saying that some of this was due to inexperience, particularly on this board and that is why I chimed in so quickly to try to tell Heather that we were just concerned ...not attacking her personally.

I think we all want her husband and anyone else that makes contact here to have a good outcome(s) and that in the end
we really do care a lot.

Deb

Hi, Deb

[quote]you will see that the more "passionate" discussion came after we were attacked for being heavy handed[/quote]

There's the one of the problems right there - when these passionate discussions get going, all sorts of people feel attacked, and things go downhill from there. Another way of looking at it is that she was defending herself. Its like looking at the moon - do you see the man in the moon, or the silhoutte of the lady.

Maria

[quote=Maria]It is possible to challenge the assumption without challenging the poster personally. Changing 'you should' to 'I think if I were in your situation' provides the same information without the personal attack. Anther useful phrase is: 'it's hard to argue with the numbers' In this case, its the numbers fault, not yours or the person you are responding to.

Maria [/quote]

Right ON, Maria. We're all adults here and not one of us wants to be told what to do, no matter how correct the advice is. "You should..." can easily be changed to "I would..." and the entire tone of the response changes. Also, I always try to remember how I felt in those first few days after diagnosis and what I thought I knew about oral cancer and its long term effects. I thought I'd never have a normal life again and I was very, very scared.

These are all really good comments and suggestions.

I know I personally am guilty of speaking in these inappropriate tones. I think we can all learn from these posts to state things in a less "absolute" manner, in one that allows some room for the subjective nature of our opinions to be fully expressed. I am certainly not opposed to posting something that has strong science behind it. But rather than state that individually, it would be better to state that in Dr. so and so's paper, he looked at X and found Y, this kinda of sounds like it could apply to you�

After all we are all knowledgable lay people, do not have intimate knowledge of any given person's situation medically, and we should state things with plenty of "wiggle room" for them to take the science idea to their doctors for direct consideration, knowing that it came from a non doctor. We need to fill their need for "probable, likely answers" with our experience, that can give them some guidance for pursuit and action, and never to speak in absolutes as it relates to them individually. I can tell you with no uncertainty a variety of scientific absolutes (at least as we understand them today) related to this disease in a given population of people. I can less so tell you if any of that applies to a particular person, even if they sound like a text book example here on the forums.

Some of us are more science oriented than others. But that science is not universally applicable. Passion, which many of us have in spades, must be kept in check, as it can easily be interpreted in a negative, pushy manner.

Good stuff from all the recent posters. Good lessons for a better forum.

I agree with most of the comments here, and certainly everyone has good intentions, which isn't in doubt. You know what they say about the road to hell...

I actually spent a fair bit of time reading various threads before jumping in so I could get a flavour. Plus I'm a pushy broad, a lawyer, a taurus and born under the sign of the ox, so really, it's impossible to intimidate me.

I will pass on to Heather the general thoughts here, so she knows where things are at in hopes she will return. For those who are interested, her husband came through surgery well, and is awaiting his chemo/rad series. He is, in fact, back at work at this time.

So glad to hear he is doing well. Wish him luck with rads and chemo.

I do apologize I did note this morning that Lady 1 was a member and originated the post. I do understand her concern with the citing of medical information. But part of what we do here is read, study, and ask questions. This combined with the fact that we've gone through treatment and invariably grilled the drs on different treatments etc... this gives us a fairly solid knowledge base (combined with an element that most drs don't have the option of obtaining and likely would never want to which is; a first person experience with the treatment). Am I saying we know more than the drs? hell no. I am saying we're a solid knowledge base period. Truth be told you can tell just by the varied answers from drs. that not all of them read the newest info and do try to stick to the tried and true or what the latest "trend" is (and I use the word "trend" loosely). So educating yourself really is a good thing and hearing all sides gives you the opportunity to make an informed decision. I find that some times when people feel threatened by what they hear, it's perhaps because they are already questioning their own choices. This site is not meant to attack by any means.. I absolutely agree tone has everything to do with how things are acceped. I found that there are always conflicting viewpoints on certain things. When that happens I look into it myself read as much as possible, ask questions of the people in the know (often a dr.) and then make what I hope is an informed decision. This is what anyone facing treatment, and this disease should do. After all a dr. who is caring for you will likely have your best interest at heart, but they also have another 1000 patients, so even if they are the most caring dr known to mankind they just simply cannot look out for you or your interests better than you or someone who loves you will.

Hi all.

My husband is doing well after surgery and is starting chemo and radiation next week. Thank you for the good wishes for his recovery.

My issue was not that people were questioning me, it was the tone in which it happened. My objection wasn't to the suggestion that we go to MDA, it was to the immediate assumption that we weren't going to MDA because we couldn't be bothered to drive to Houston and that was it. No one here knows our life's story, or anything about our circumstances other than the info I put in my sig line regarding my husband's diagnosis. It made me feel like I "owed" the forum a long explanation of what went into the decision to stay local rather than go to MDA, and that is tremendously alienating. People said we should go to MDA, I said there were reasons why we weren't, and it needed to stop at that point. Someone on my intro thread something like "When we see that you're not going to an NCI CCC we just worry and want to know why." Frankly, what needs to happen is you need to take my word for it when I say that we have considered the option with our medical team and within the context of our family's circumstance. Taking umbrage at being spoken to with such disrespect when I don't offer up the explanation that you (the collective you, not any particular poster) think you deserve doesn't seem to me like taking my ball and going home.

I am in no way a "fragile personality." I don't expect strangers on the internet to coddle me and protect my sad little girl feelings with only soothing words and gentle affirmations of all my life choices. However, I certainly didn't expect to be told to "get [my] spinning head out of [my] behind," and I'm not the sort of person to passively take that comment even when I'm NOT in the immediate stages of dealing with the fact that my husband has a life-threatening disease. I think that comment is the most hurtful thing anyone's ever said to me on the internet, and I'm not new to posting on internet forums (just this one). The fact that I didn't get an official apology from the OCF administrators, just a lot of "oh, some of us are like that here" kind of dismissal, was insult to injury, if you will.

I'm a litigation paralegal so I'm surrounded all the time by smart people who don't hesitate to express strongly-held opinions. I don't have a problem with strong expressions of opinion. I do have a problem with being disrespected and condescended to, particularly after I've expressed that I've taken issue with something that's been said to me. Certainly folks can disagree that what was said was disrespectful, but different interpretations of the situation don't invalidate my response.

I'm also a victims' advocate for the domestic violence shelter in my town, and I know how to speak to people are in crisis. One of the principal rules of advocacy work is that when someone is in crisis, you let them BE IN CRISIS. That means if they don't respond to you in a way that you expect or feel is "appropriate," you just accept that their response is THEIRS and cannot be wrong. My first post here was 27 days after my husband's diagnosis with this fearsome disease, and exactly 1 week after he had surgery to remove a 1/4 of his tongue. He had been home from the hospital for 2 days, with 22 stitches in his tongue and 35 in his neck, and I was trying to help him recuperate, keep life as normal as possible for our 6-year-old daughter, go back to work, keep my house running, and not lose my mind. I was absolutely IN CRISIS. The response I got here broke my heart when I was the most vulnerable I've ever been.

Anyway, that's my 2 cents.