What do you expect from this forum?

brainman

Obviously, we can all learn at least two things from Priscilla's experience:

1. We need to do a better job of responding to people in emotional pain. None of us (including me) realized how much Priscilla was hurting and how much she needed our support. We should and can do a better job of helping each other.

2. If we really have a new issue, we should start a thread of our own. Priscilla's message was buried inside a thread of someone else. People where responding to that thread but not to Priscilla. It has been amazing how many replies Priscilla has received since I spit her message away for that thread!

I don't want to "blame" Priscilla. I want us to learn from her.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

isidella

This forum should be a tool for info about cancer, not a sole source of emotional support. I don't think anyone did anything wrong by not responding to Priscilla. Sometimes, it is just helpful to vent. It can be difficult to reply to others who are hurting when there is so much pain here. I do not agree with the way Priscilla has disrespected the forum with her post above. There are people on here who are fighting cancer, hoping for a cure, hoping for research breakthroughs. There is hope. Her post, despite her own pain, is hurtful to all of the fighters and survivors. At the depths of our pain, we must refrain from spewing hateful words.
_________________
Cancer is not a single disease, but billion diseases. Each cell is a disease that has the potential to become a million different diseases. It is complicated, but not unconquerable.
~Isidella

I am the master of my fate:
I am the captain of my soul
~William Ernest Henley

winnymac

Isidella,

I agree with you so much. I read her post and sort of felt attacked! I read all the posts but I only reply to a small percentage because my family and I are still learning about the twists and turns and ups and downs of this disease and I don't always have the right words to help someone along.
Many times when I have had questions about my dad's progress or treatments, I have found information by searching the posts to see if it has already been addressed.
This forum has been wonderful for me, simply to help me keep in touch with what can and possibly will happen.
My family still has hope and has seen my dad fight this disease for 2 1/2 years and still going at the age of 79.

Thanks,
Linda P
Salem OR

brainman

I followed my own advice and have started a new thread for the unexpectedly hot topic Confused

. I really did not expect my comments to be so controversial! It seems like I was wrong. I am sorry if I offended anyone Embarassed

. I did not and do not mean to cause any additional pain to anyone. It is obvious that each of us expects different things from this forum. So, the question is: "What are you looking for from the forum? Why did you join the forum?"

For myself, I do not need information as much as I need support. This does not mean that this is the case for everyone on the forum and certainly at times I want information. However, it is not the primary reason I joined the forum.

I invite you to express why you joined the forum.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

CrescentMoon · Regular Joined: 07 Apr 2007 Posts: 22

I find comfort finding information on cancer from people who are going through it/ went through it, and I'd also like to help in any way I can to help someone else going through the same thing find little things that can help them feel better, little things can help so much for someone's depression or pain. Even if it's just a simple "be strong".
_________________
x_x 0_x x_0 ^_^ -_+

healthoption · New User Joined: 01 Feb 2007 Posts: 8

I learn some breakthroughs in the treatment of cancer and how other people cope having cancer.
_________________
Health Diseases and Conditions Today

http://myhealthoption.blogspot.com

honeysuckle · Regular Joined: 04 Aug 2007 Posts: 34

I joined this forum out of desperation. There is so much information "out there" about the different types of cancer, but I wanted to connect with real people. I wanted to read what people were going through, what helped and what didnt so I could better understand my sister (stage IV colon cancer), and mother (stage IV breast cancer).

I feel safe asking questions here, and don't expect everyone to rally around me. Sometimes I check back to see if there is a response though Very Happy

I am glad that I found this board and hope that I can somehow help others as I learn more. Wishing everyone better days.

BaldEagle · Regular Joined: 23 Aug 2007 Posts: 31

Support, information, fellowship and fun. Not always in that order!!!
_________________
Question: Have you lived here all your life?
Answer: No, not yet!!!

http://www.cllcfriends.com

In

I joined to get advice, help, information, a caring ear. BUT most of all to talk to "real" people. People who are living through it, or suffering through it, and surving. Real information, true feelings and information.

I was so sick of all the so called advice and help, from people who have no idea, people who haven't delt with it. Who think what is best. They don't know the twist and turns, the up and downs, the hate and pain, Even the funny and amazing.

That is why i joined- Support, help, advice, information and a place to vent. But most of all to feel, to listen, to share with REAL people. Confused

Inica
_________________
Thinking of you Inica

*Administrator*

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

Smile

9 Lives and still kicking Smile

BaldEagle · Regular Joined: 23 Aug 2007 Posts: 31

Hi Inica,

I completely agree with you. I know that my friends more or less cut off ties with me simply because they did not know what to say to me. I was sick for over a year and that contributed to their standoffishness (is that a word Shocked

). When I sought help online I found many forums filled with people experiencing the same things I am experiencing and they were willing to talk about it and offer support without knowing me or anything about me. I have cherished that and my many online friendships that have developed as a result.

Many, most and perhaps all I will never meet face to face on this earth. But that is ok cause I have no doubts they are my friends.

I have perused the board and seen posts that were genuine and caring and supportive. Some of those posts were made by you. Good for you, that is what is needed and for those that can and are willing to provide this support it is important not to be discouraged by lack of participation. We must continue to provide that which we know to be the right thing to do.

It must be hard to run such an all encompassing board as this one is. Not that it can't work but rather that it will take great effort by all to make it work.

Perhaps if a new category for suggestions were created so that members could start to feel like this is their board. They can make suggestions and feel like they are part of the process. No matter who owns, moderates or otherwise governs this board without participating members it is of little value.

Also have you given thought to having games in the lounge area. Sometimes just having a place to interact and get acquainted can be very beneficial.

Are there any medical professionals that are members? Do you know? Perhaps a mod/admin can answer that if you cannot.

Take care and be well.

Regards,
Loren
_________________
Question: Have you lived here all your life?
Answer: No, not yet!!!

http://www.cllcfriends.com

In

I agree with alot of things you say and believe. But i'm happy with the look and feel of this forum....But there is always room for advice and suggestions.
Games in the lounge sound like fun. or even just your funny topics.

Not sure on all the other questions.

Inica
_________________
Thinking of you Inica

*Administrator*

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

Smile

9 Lives and still kicking Smile

BaldEagle · Regular Joined: 23 Aug 2007 Posts: 31

I am not promoting any particular format per se. I just want to see it be user friendly and well organized so that infomation is easy to find.

Regards,
Loren
_________________
Question: Have you lived here all your life?
Answer: No, not yet!!!

http://www.cllcfriends.com

brainman

Hi Loren, I can answer some of your concerns/questions... maybe not to your satisfaction Laughing

(joke... hopefully, my answers will be to your satisfaction)

[quote="BaldEagle"]

Q1. I have perused the board and seen posts that were genuine and caring and supportive. Some of those posts were made by you. Good for you, that is what is needed and for those that can and are willing to provide this support it is important not to be discouraged by lack of participation. We must continue to provide that which we know to be the right thing to do.
A. So very true! That is why I try to make sure that someone has replied every new member with 48 hours of their first post.

Q2. It must be hard to run such an all encompassing board as this one is. Not that it can't work but rather that it will take great effort by all to make it work.
A. Again, so very true! It is not easy to run such an extensive board. That is way I often refer to the members of this board as a "community." This is a community effort. There are member that assume more responsibilities than others but it is still a community effort.

Q3. Perhaps if a new category for suggestions were created so that members could start to feel like this is their board. They can make suggestions and feel like they are part of the process. No matter who owns, moderates or otherwise governs this board without participating members it is of little value.
A. I will take this under advisement and consult with the Forum's owner. In the mean time, you can send any suggestions directly to me via a Private Message. I have often consulted with the community before making changes. For example, I posted the Policies and FAQs for commends and suggestions from the community long before I presented them to the owner. In fact, currently there are two polls going on asking for input from the community members.

Q4. Also have you given thought to having games in the lounge area. Sometimes just having a place to interact and get acquainted can be very beneficial.
A. Almost anything can be done in the lounge area. I have started a "Movies about Cancer" thread and see no problem with the current "Getting to Know You" game. Anything that will help this community become closes has my approval.

Q5. Are there any medical professionals that are members? Do you know? Perhaps a mod/admin can answer that if you cannot.
A. Yes, there are two doctors that I know of who are not only members but one is the owner and the other is an administrator. Dr. Leo Faoro "Leo" ( http://cancerforums.net/viewtopic.php?t=148 ) is the owner/founder/author of the forum. Dr. Richard Lee "Rlee" is an administrator. You will occasionally see their names on different threads.

Loren[/quote]

Loren, may I add how thankful I am for your interest and participation in this community.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

BaldEagle · Regular Joined: 23 Aug 2007 Posts: 31

Thanks Jim, I appreciate the response. And yes, your answers were satisfactory.
_________________
Question: Have you lived here all your life?
Answer: No, not yet!!!

http://www.cllcfriends.com

	Cancer Forums Forum Index -> The Lounge	All times are GMT - 5 Hours
Page 1 of 1

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others