I hope we see her back. Who knows what else she is dealing with. It's understandable at this stage that she and her partner will be looking for reassurance without question from their doctors - especially if she and the family are at the totally freaked out stage of the proceedings.
But yes, she's misguided in not trying to educate herself so she can advocate for her husband and do what's best for him.

Hi Everyone,
The only thing I want to point out is that this is the second woman we have lost recently. Lady 1 and Heather. Regardless of our intentions, we have driven them away when they are the most vulnerable.
I am communicating with Heather privately so we haven't lost her completely, but she was very hurt. I KNOW it was not our intentions to hurt her, but it seems some folks are just way more emotional about their diagnosis than others.
I don't know what to do different, but I hate that people are going away angry. If those 2 talk to 5 people about us and those 5 talk to 5 people....you get the picture.
I love this site and know it saved my sanity.
Just thoughts,
Kathy

Personally, I think those two were a little over the top with thier reactions. You must learn to listen with an open mind and understand that not all information recieved here is good for your individual situation. It is a shame they got mad and took thier ball home (I know there's a saying about that), but at the same time those speaking on this forum have alot of info to give and they should have stucdk around to find out more. Even a little sliver that sticks with you is better than nothing. Maybe it was just too much of emotional roller coaster for them.

I'm pleased to hear you're speaking with Heather. I'm quite new, also, and felt the harshness from some of the comments with Heather.

I am also speaking with Heather privately. She wants information and support but felt very attacked when she most needed someone to talk to. Bear in mind, as well that she is a care giver, not the patient, and it is not her decision to make on treatment and doctor options.

I realize everyone here is trying to provide information from their own experiences, and they are emotionally charged experiences, to boot, but if someone asks people to back off, they need to listen. This is supposed to be a place where people listen, and not judge, and I can see very much how she felt judged.

This saddens me. There is so much valuable support and information here on this site. I really hate to see people leave because they felt threatened or intimidated. I really hope they return eventually.

It is interesting how lady1- an unregistered user - just jumped into a conversation in the middle about Erbitux - something we've all discussed frequently on here and started attacking people here on the forum. I'm not sure if she'd posted other things or even told her story but it just seems odd. I'm sorry she feels that way I can't remeber if she'd posted anything prior to that but the conversation initially started as a sharing of info about the drug between various members who've had both good and bad experiences with it. So I don't know that the intent was to scare her away at all, rather just reply to her posting.
As for heather I'm sorry - i totally understand she's worried and upset and has a lot at stake here. I know she has young children and a husband she's afraid for. I also know she feels she made the best decision for her family, and husband. And I truly support her in that - but when you seek out support of some of the people who've been through it then you have to understand that you're going to hear the good and the bad, because we've all seen both. And after a while here you see a pattern. Things that work, things that don't, and learn to recognize signs. One of the things I have noted is that people who seek out the best treatment at the best hospitals tend to do better - this is why the people on the forum say this repeatedly - its advice that we all impart because it's so important. What a person chooses to do with it is up to them absolutely. I just guess most of us don't want to deal with losing another member and having to hear the regret of... I wish we had gone here instead.... I think we were all trying to help - my initial response to her was that if she was close to mdanderson that was the best hospital to be treated at. She had said something about convenience etc... This is why I mentioned it. I know a few of the other replies she got were more harsh but because she was already so upset I don't think anything would have helped. I know she needs to feel secure in the decisions they've made. But the reality is, cancer does that, it plays with your emotions, pulls the blanket right out from under you and makes everything uncertain. So in seeking out the emotional security of a medical professional you trust sometimes we put blinders on. And that is the unfortunate thing. You have to feel comfortable in the decisions you've made - absolutely - but you also have to advocate and question as well. I'm glad a few of you are still talking to her and I'm glad she's around. It sounds like she needs a lot of support. Best of luck to her and her hubby.

The message sent is not always the message received (and vice versa).
My own �message received� from recent comments is this:

The comments that questioned Charm�s post about his experience or knowledge or the truthfulness of his comments saddened me immensely. I�ve been around this forum long enough to have seen over and over, the extent or Charm�s altruistic compassion, experience, impressive knowledge and generosity in helping anyone and everyone who comes here for help even while undergoing some difficult days himself. I fretted over this for some time.

And then, when I saw our founder Brian�s comments in support of Charm, it touched me to the core of my being because I saw the depth of his caring and concern for someone who had done so much for so many of us.

This is just my opinion, but when what appears to be an unkind comment is made to someone you care about, it seems natural to me to want to protect and support that person.

When we post things here or anywhere, we do not have the advantage of face-to-face communication, which can impact how a message is received. That�s where the �Preview� option can help should we want to �tone it down� before we hit the �submit� button.

There is such a wealth of information, experience, compassion and support available on this site for anyone going through the craziness of surviving oral cancer. It�s like no other anywhere. I do hope that the two who left us recently will reconsider and come back. And everybody will �play nice�.

I wasn't going to comment on the two women leaving but in fairness to Lady1, she was a registered user and actually started this whole thread so she did not just jump in. She did ask Brian to unregister her because she objected to posters citing studies without a medical degree. Rather naive faith in a medical degree IMO but certainly her right.
As for Heather, I can understand why she felt beleaguered, since the chorus on OCF can be quite deafening in insisting on certain approaches. I certainly encountered that when I first joined and challenged the conventional wisdom of OCF posters on getting a PEG, acceptable weight loss, excessive neck dissections and even getting second rounds of radiation.
I'm glad there are some members sending PMs to Heather (Lady1 would need to be contacted thru her private email if she had posted in her profile when she was registered) as it was a PM from DavidCPA which helped decide not to just write off the OCF forum.
But IMO there will always be posters who quit because they have one of more expectations which are inconsistent with public discourse even in a moderated forum. I started to enumerate them and realized my wording would just cause unnecessary dissension and discussion. Suffice it to say that while it's sad when posters quit, it would be worse if the OCF forum was reduced to only "poor baby - I wish you well" posts (not that there is anything wrong with those types of posts, I certainly have liked getting them myself on OCF and found them supportive) for fear of upsetting fragile personalities. Sometimes the decisions and positions evinced by posters should be challenged and not supported. We are all in this together and it's not easy.
In the past, other posters have come back to OCF after their first sulk is over. I hope these two do also.
Charm

[quote=Charm2017] Suffice it to say that while it's sad when posters quit, it would be worse if the OCF forum was reduced to only "poor baby - I wish you well" posts (not that there is anything wrong with those types of posts, I certainly have liked getting them myself on OCF and found them supportive) for fear of upsetting fragile personalities. Sometimes the decisions and positions evinced by posters should be challenged and not supported. Charm [/quote]

Exactly. I do not think that we are being helpful if we stand by and do not challenge something that, in our experience, seems offtrack and possibly life threatening. In doing so, we risk making the poster feel second guessed but in the scheme of things, feeling second guessed is by far the lessor of two evils.

Deb