› Forums › General Melanoma Community › Why doesnt anybody reply to my posts on here :-(
- This topic has 22 replies, 11 voices, and was last updated 13 years, 7 months ago by boot2aboot.
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- April 2, 2011 at 7:12 am
I dont understand, and am quite saddened by this.
Perhaps its because Im from Australia or because a lot of you know each other and have your little friendship groups formed already.
I dont understand, and am quite saddened by this.
Perhaps its because Im from Australia or because a lot of you know each other and have your little friendship groups formed already.
- Replies
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- April 2, 2011 at 8:41 am
Simmy – I think it is the fact that posts come to the top when someone responds rather than staying in a fixed order. I hate this aspect of the board – some really important posts get lost. If you post during your day and then four people in the US get up and post their questions and another 4 respond to other posts yours is off the charts. The only reason I saw your post is because I can't sleep tonight so I found it at 3 AM.
Another reason could be the type of question you're asking. If you ask something very specific and no one who knows anything about it sees it fast- then it falls of the face of the earth (front page of board).
One thing it isn't is personal. This group is remarkably free of jerks, petty people, or …well, you fill in the blank. Some people who live near each other or are being treated at the same facility may become closer, but most people here probably come for information and respond when they can.
Sending you huge trans-atlantic hugs
Fen
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- April 2, 2011 at 8:41 am
Simmy – I think it is the fact that posts come to the top when someone responds rather than staying in a fixed order. I hate this aspect of the board – some really important posts get lost. If you post during your day and then four people in the US get up and post their questions and another 4 respond to other posts yours is off the charts. The only reason I saw your post is because I can't sleep tonight so I found it at 3 AM.
Another reason could be the type of question you're asking. If you ask something very specific and no one who knows anything about it sees it fast- then it falls of the face of the earth (front page of board).
One thing it isn't is personal. This group is remarkably free of jerks, petty people, or …well, you fill in the blank. Some people who live near each other or are being treated at the same facility may become closer, but most people here probably come for information and respond when they can.
Sending you huge trans-atlantic hugs
Fen
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- April 2, 2011 at 9:34 am
Hi Simmy
i think Fen is spot on our time difference does not help and you can get pushed down the list pretty quickly. I had a look at your last topic i think rather than just state BRAF and the number of the Trial ask a question in the title so as to seek a response. This is a great bunch of people and i can assure you they do care about you.
best wishes
James
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- April 2, 2011 at 9:34 am
Hi Simmy
i think Fen is spot on our time difference does not help and you can get pushed down the list pretty quickly. I had a look at your last topic i think rather than just state BRAF and the number of the Trial ask a question in the title so as to seek a response. This is a great bunch of people and i can assure you they do care about you.
best wishes
James
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- April 2, 2011 at 10:56 am
I am from Melbourne as well, and it appears that most people here are from
the US. Therefore, there is often a time difference of 14 – 17 hours. Of
course, that will change a bit when daylight savings finishes tomorrow.I agree that there is a problem with the way that the latest response will
always be at the top. One way to keep your topic on the front page is to
reply to (or add something to) your own topic once it has been posted. This
will get any important posts noticed.Although I haven't been on this forum for very long, I feel that the people
here really do care about each other. So, please don't be discouraged.Frank
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- April 2, 2011 at 12:13 pm
Thanks guys,
You've made me feel much better, and given me bit more of an understanding of how this new board works. I will try and put your little tips into action with my next posts!
And yes I know the people on here are sooo friendly, helpful, courageous and giving of their time, personal stories, and souls. I feel like its a big family on here, we are all going thru similar terrible experiences at the same time on this site and we all understand each other in a way that most others in our lives cant possibly understand. Lots of the members on here will also help you with questions about treatments, the disease itself, etc.
Sorry if I sounded like I was whinging or being ungrateful… I wasnt, promise. I just didnt understand what I was doing wrong!! when I saw some posts get heaps and heaps of replies and I sometimes struggle to get one!!
Anyway, its my bedtime now, gotta get some beauty sleep!! hmmmm HARDLY!! At the moment Im covered in this horrible itchy rash!! lol
Cheers,
Simmy xo
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- April 2, 2011 at 1:37 pm
Hi Simmy – I was really surprised to see your post this morning because I don't remember seeing your name before and I would be very surprised at anyone not being answered here! I am in the US, Mountain Time Zone, and I usually check the board when I'm up in the morning and drinking my coffee so I think everyone is right about it being the huge time difference.
Would you mind putting up a post telling us a bit about yourself and where you are with diagnosis and treatment? For me that always helps me to understand where someone is in this journey we all share. I hope your beauty sleep was good and peaceful!
Carmon in NM – Stage 3b 9/2008, Stage 4 6/2010 with brain an
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- April 2, 2011 at 1:37 pm
Hi Simmy – I was really surprised to see your post this morning because I don't remember seeing your name before and I would be very surprised at anyone not being answered here! I am in the US, Mountain Time Zone, and I usually check the board when I'm up in the morning and drinking my coffee so I think everyone is right about it being the huge time difference.
Would you mind putting up a post telling us a bit about yourself and where you are with diagnosis and treatment? For me that always helps me to understand where someone is in this journey we all share. I hope your beauty sleep was good and peaceful!
Carmon in NM – Stage 3b 9/2008, Stage 4 6/2010 with brain an
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- April 2, 2011 at 12:13 pm
Thanks guys,
You've made me feel much better, and given me bit more of an understanding of how this new board works. I will try and put your little tips into action with my next posts!
And yes I know the people on here are sooo friendly, helpful, courageous and giving of their time, personal stories, and souls. I feel like its a big family on here, we are all going thru similar terrible experiences at the same time on this site and we all understand each other in a way that most others in our lives cant possibly understand. Lots of the members on here will also help you with questions about treatments, the disease itself, etc.
Sorry if I sounded like I was whinging or being ungrateful… I wasnt, promise. I just didnt understand what I was doing wrong!! when I saw some posts get heaps and heaps of replies and I sometimes struggle to get one!!
Anyway, its my bedtime now, gotta get some beauty sleep!! hmmmm HARDLY!! At the moment Im covered in this horrible itchy rash!! lol
Cheers,
Simmy xo
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- April 2, 2011 at 10:56 am
I am from Melbourne as well, and it appears that most people here are from
the US. Therefore, there is often a time difference of 14 – 17 hours. Of
course, that will change a bit when daylight savings finishes tomorrow.I agree that there is a problem with the way that the latest response will
always be at the top. One way to keep your topic on the front page is to
reply to (or add something to) your own topic once it has been posted. This
will get any important posts noticed.Although I haven't been on this forum for very long, I feel that the people
here really do care about each other. So, please don't be discouraged.Frank
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- April 2, 2011 at 2:51 pm
Simmy, also keep in mind that this forum is always changing as new people decide to enter discussions and may have missed your previous posts. Like me. And also, like me, may be a tad lazy and not look beyond the first page of posts. Maybe the folks who moderate this bulletin board might be able to show a longer list of topics.
I went back and looked at your previous posts and I also need to reiterate what another member said earlier, some of us may not be able to answer your very specific questions because we haven't been there. I know nothing about braf.
On the other hand, people's experiences are always changing as well as the membership of this board. If you repost your queries every so often, you might get answers.
Of course, there's nothing like calling a group on the carpet to get a reaction! You got responses with this one!
Grace and peace Aussie Friend,
Carol
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- April 2, 2011 at 4:41 pm
Simmy,
I am so sorry that you feel that we are ignoring you as I do feel that people here are caring and supportive and dont purposefully ignore other peoples posts. Even if we dont have advice or suggestions people will often post their support to you.
I do remember posting to you about the problems you were having with the wetting…then later I looked at that thread again and my post wasnt there, so I reposted my answer to you. I cant explain why my post was missing and no I diont think it was deleted because of any inappropriateness, heavens no, I would never post anything inappropriate!
I hope that you find some good resource info for that pesky uncomfortable rash of yours. Poor dear, you have been through alot!!!
Hugs,
Vermont_Donna
stage 3a
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- April 2, 2011 at 4:41 pm
Simmy,
I am so sorry that you feel that we are ignoring you as I do feel that people here are caring and supportive and dont purposefully ignore other peoples posts. Even if we dont have advice or suggestions people will often post their support to you.
I do remember posting to you about the problems you were having with the wetting…then later I looked at that thread again and my post wasnt there, so I reposted my answer to you. I cant explain why my post was missing and no I diont think it was deleted because of any inappropriateness, heavens no, I would never post anything inappropriate!
I hope that you find some good resource info for that pesky uncomfortable rash of yours. Poor dear, you have been through alot!!!
Hugs,
Vermont_Donna
stage 3a
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- April 24, 2011 at 1:44 am
Hello Down-Under,
I am one of those posters who pop-in then I pop-out. It is me and my personality…here today, gone tomorrow…it is my defense mech. Just that, when I get overwhelmed I tend to disappear…poof. So if you need anyone to chat to about how this "Beast" is so "Beastly" please shoot me an email. And my husband, who is my Lancelot of Kings Way, is really needy of my time…as I am of his time. Human connection is the key I think…typed as I look into my Fantasta Man's eyes…gotta go too much time online and out of his loving arms…OH ONE REALLY GOOD THING…GET A MASSAGE ONCE A WEEK…we are one.
My best to you…Suzan AB a Cali girl
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- April 24, 2011 at 1:44 am
Hello Down-Under,
I am one of those posters who pop-in then I pop-out. It is me and my personality…here today, gone tomorrow…it is my defense mech. Just that, when I get overwhelmed I tend to disappear…poof. So if you need anyone to chat to about how this "Beast" is so "Beastly" please shoot me an email. And my husband, who is my Lancelot of Kings Way, is really needy of my time…as I am of his time. Human connection is the key I think…typed as I look into my Fantasta Man's eyes…gotta go too much time online and out of his loving arms…OH ONE REALLY GOOD THING…GET A MASSAGE ONCE A WEEK…we are one.
My best to you…Suzan AB a Cali girl
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- April 2, 2011 at 2:51 pm
Simmy, also keep in mind that this forum is always changing as new people decide to enter discussions and may have missed your previous posts. Like me. And also, like me, may be a tad lazy and not look beyond the first page of posts. Maybe the folks who moderate this bulletin board might be able to show a longer list of topics.
I went back and looked at your previous posts and I also need to reiterate what another member said earlier, some of us may not be able to answer your very specific questions because we haven't been there. I know nothing about braf.
On the other hand, people's experiences are always changing as well as the membership of this board. If you repost your queries every so often, you might get answers.
Of course, there's nothing like calling a group on the carpet to get a reaction! You got responses with this one!
Grace and peace Aussie Friend,
Carol
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- April 22, 2011 at 10:00 pm
I haven't been on this post since 2008, and I just returned and have found a much different group of people. I guess all the people I knew have either stoped posting or have died but they seemed much more involved. Sorry for your experience, but I have noticed it also.
We also had a site that was off topic but anything went language, sexual topics, politics, etc, it was called "The Darkside" and that's also gone. Everything is more sterilized. I guess its a sign of the times.
CCCC
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- April 24, 2011 at 12:51 pm
Hi,
I am so sorry you felt that noone was writing or caring. I agree this new format is awful that the posts move around like they do. I liked the old way soo much better, I have a hard time finding the posts I want to follow because they slip down so quickly. I also agree that I dont respond if someone posts a specific trial etc that I know nothing about. I know there are very informed people on this board and I am sad to say there were some really great informed people that we have lost. I will usually only post when it is something I have gone thru or can offer my support for. But as to specifics I stay out of it I have not been thru 1/3 of what most people on this board have and dont want to speak of things I dont know about. I am sorry if you interpreted it as not caring, I will try to be aware in future that just offering support is enough so people dont feel left out. 🙂
take care
laurie from maine
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- April 24, 2011 at 12:51 pm
Hi,
I am so sorry you felt that noone was writing or caring. I agree this new format is awful that the posts move around like they do. I liked the old way soo much better, I have a hard time finding the posts I want to follow because they slip down so quickly. I also agree that I dont respond if someone posts a specific trial etc that I know nothing about. I know there are very informed people on this board and I am sad to say there were some really great informed people that we have lost. I will usually only post when it is something I have gone thru or can offer my support for. But as to specifics I stay out of it I have not been thru 1/3 of what most people on this board have and dont want to speak of things I dont know about. I am sorry if you interpreted it as not caring, I will try to be aware in future that just offering support is enough so people dont feel left out. 🙂
take care
laurie from maine
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- April 22, 2011 at 10:00 pm
I haven't been on this post since 2008, and I just returned and have found a much different group of people. I guess all the people I knew have either stoped posting or have died but they seemed much more involved. Sorry for your experience, but I have noticed it also.
We also had a site that was off topic but anything went language, sexual topics, politics, etc, it was called "The Darkside" and that's also gone. Everything is more sterilized. I guess its a sign of the times.
CCCC
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- April 24, 2011 at 10:24 pm
you can talk to me simmy…i like all you kiwis…in fact, was planning on moving there until i got…delayed
boots
still getting path report, but looks like stage 3b for now…
happy easter
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- April 24, 2011 at 10:24 pm
you can talk to me simmy…i like all you kiwis…in fact, was planning on moving there until i got…delayed
boots
still getting path report, but looks like stage 3b for now…
happy easter
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