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SAD
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May 21, 2010 - 7:42 pm
I don't mean the Standard American Diet either. How much HELP are we actually giving any NEW people who happen to come here? This site is NOT going to have sections for: So a little tolerance for how people choose to handle their own lives might not be a bad idea. I know this will ruffle the feathers of the usual suspects but those are the ones who possibly need to look at this the most. It will give you something to do at least. Obviously we took many paths to GET cancer and we took many paths in our attempts to GET RID of cancer. The chemo people are not going to convert the TCM people and the TCM people are not going to convert the chemo people. That's been established. I know cancer can make people cranky at times and it's brought out the worst in me as well as the best in me. No WONDER so many good people got fed up and left! |
Joined: Jan 2010
Really???
Wow that will remove about half the questions on here since about half are ASKING for advise. And about 2/3 of the people on here are more than glad to freely GIVE advise. Does anyone know where someone can go to get advise on the internet? There are ALOT of people out there that are scared and aren't getting help from their doctors. Now, I see the value of consoling a "virtual" friend but most people CAME here looking for advise not a shoulder to cry on. This site is not always a sounding board but any online forum leans that way occasionally. That's the nature of the beast. Tell me what support can you give me when I'm not sure about my treatment? I guess everyone should just have a standard reply they can copy and paste. "Stay positive". No, that's giving advise.... "Everything will be allright". No that's a prognosis... How about "sorry, can't help you, but good luck". Hey, that might work.
Thanks Phil, I'll have alot more time on my hands now.....
Joined: Jul 2006
Advice.
I agree that many come here for advice and that many of us give it. That being so, it is especially important for us to preserve our right to disagree with one another. When there is a diversity of views, people need to know that. If Phil finds the public disagreements distasteful, that's just tough.
--Greg
Joined: Jan 2010
High five???
On this, my friend, we are in full agreement........
Now about that other subject.... LOL
Joined: May 2009
Here we go again
Maybe we need to create another discussion group(s)
Spiritual
Stages of Cancer
Juicing
Eat Meat
Don't eat meat
Phil geez.....why do you get so uptight over the dumbest things.....
No one here makes you read anything, so go poop or something......
Taking a break.....later.
Joined: Nov 2001
From one of lifes accidental tourists
I loved that old irish ditty "The orange and the green" Particularly the line"And me ,being strictly neutral,I fights anyone in sight".:) Ron.
Joined: Nov 2009
I guess its easier to ignore
I guess its easier to ignore feed back when you know you are off base!! I came here scared, confused , sad , hurt etc.. not one time in me asking questions or advice did i think that i should just go off this and not talk to chris Dr.. but lets be honest.. Is it logical go call your dr everytime you have a bathroom question or what ostomy supplies are better than others?? I love your advice and feed back, your jokes and your tips on what has helped you!! please everyone stay the way you are and help each other face everday of this horrible thing we call CANCER!! if you dont like it GET OFF!!!! ok im done....lol
Loves,
Mel
Joined: Jan 2007
Whew, Mel !!!
You are HOT !!
Thanks for the laugh!
John
Joined: Nov 2009
Thanks John.... had a better
Thanks John.... had a better day i really am a pussy cat!!! lol
Loves,
Mel
Joined: Feb 2009
It's the tone...
not the information. We should all share - but we should be aware of the tone of our posting. This is not a face to face encounter so it's difficult to interpret the tone of some. Just because a particular treatment worked for one does not mean it will work for another.
Joined: Feb 2008
I'm confused
I realize I may have been distracted lately for various reasons, but I'm confused about what's going on...
*hugs*
Gail
Joined: Jan 2010
not again...
This is beginning to look like it could turn into something like that "Prayer" thread Y'all had going when I first signed up.Please don't go there.
-Pat
Joined: Feb 2009
I am Lost
OK what brought this all on. I'm lost as to what has caused this post. Phil, you have contributed so much to this board and helped me so much so why are you saying that we shouldn't give advice anymore based on what we have been through personally. We all got this cancer because we were dealt a dirty hand in life, but we can still help one another. We don't all need to be a specific stage, but help those that are the stage we are and go from there. You are a hero in my book Phil. You have gone through major trials, but we still need to keep focused on the emotional aspect of all of this and that is being human and emotions.
Hugs! Kim
Joined: Oct 2009
Lost
I am with several others, am lost as to why you posted this thread. If someone seeks advise then that is what they want. People share their experiences with this disease. I see absolutely nothing wrong with resonding to a thread "what side effects should I expect from Folfox". If we don't share, how the heck are we suppose to know what to expect? Personally, I would have been lost without the advise and assistance I received from total strangers who, unfortunately, share the same disease George has and will be forever grateful to them for their help.
Sure there are a few that I think are downright mean, rude, and think they are superior. They offer no support whatsoever and God forbid they offer a condolance but they can be easily ignored.
People leave the board because they have moved on, their disease is not active. It is sad but if they can't be botherered then they can't be bothered.
Is your goal is to drive people away? Now chill out and have a glass of wine.
Tina
Joined: May 2005
Tina
"I am with several others, am lost as to why you posted this thread. If someone seeks advise then that is what they want. People share their experiences with this disease. I see absolutely nothing wrong with responding to a thread "what side effects should I expect from Folfox". If we don't share, how the heck are we suppose to know what to expect?"
Sorry if I wasn't clear enough. My entire point is that we are here to offer helpful things like "what side effects should I expect from Folfox". Not to call each other names and tell people they are seeking the wrong treatment because they didn't do it that way or they had a bad experience with it. It's the ones that are telling people they are WRONG that gets me. They can disagree but do they to say they are WRONG? Only to inflate their egos.
"Sure there are a few that I think are downright mean, rude, and think they are superior. They offer no support whatsoever and God forbid they offer a condolance but they can be easily ignored."
Yes, they can. They can also keep it to themselves. They don't HAVE to but they CAN.
"People leave the board because they have moved on, their disease is not active. It is sad but if they can't be botherered then they can't be bothered."
I think you'd be surprised how many people left because of the things I addressed in my post Tina. It's not that they can't be bothered, it's that they have tired of the non-helpful people arguing over the same old stuff. I am in touch with many of them.
My goal is not to drive people away. Where does that come out?
My goal is the opposite, it's to keep people here.
Joined: Oct 2009
Ok
Now I kinda get it Phil. Thanks for the explanation. I know exactly what you mean by "wrong treatment" but I usually try to ignore that stuff and move on. And tell those you are still in contact to check in once in a while.
Tina
Joined: Feb 2008
Phil's okay by me!
Thanks for the update, Phil. I understand what's going on better now.
*hugs*
Gail
Joined: Oct 2009
I don't know.....
When I found this site I had already done weeks of oxi/Xeloda and radiation and was a month out of colostomy not knowing how to survive with a bag and some of the people here when I found this site literally taught me how to not just survive but how to live after such a procedure and what to expect from FOLFOX, my next step then in this journey.
After awhile, you learn whats BS and what has some validity; who seems to be a leader,who a follower, who provides legit info, who just nonsense; who's good for emotional support-a major part of this site, I think and at times, the most important to me,- the knowledge that there are other people out there going thru the same or similar sheit that I'm going thru..(It takes some of the scariness away) There were three men in particular, among many here whose advice ands PMs made my life liveable, giving me hope that things will get better, that there is a new "normal" you can live with; there were a number of women who's thoughts and advice from a woman's perspective/experience in this mutual battle was very helpful as well.
Thats what I found to be the strength of this site. If you needed support when in pain or depressed or just needed to vent/talk to someone; if you needed advice as to what to be aware of when undergoing specific treatment regimens, to get thru the treatment with minimal negative side effects; to provide a bit of humor or "human interest" stories to take one's mind off this battle for a minute or two, with words most can identify with; to provide answers to personal, specific questions one has while undergoing treatment, while trying to live after treatment, while being a caregiver;for me, this site (you) was (were)a lifesaver.
Yet tho I've been here but 7 1/2 months (and intend on continuing visiting during my next 30-45 years)something seems different. I know I've changed, hence much of the above may no longer apply to me but I'd like to do unto others what others here did for me-help....
Cancer is an ongoing, never-ending battle as I do not believe once afflicted you can ever be certain you are completely free. Don't mean to be negative in any way but thats based on rather extensive reading and thought (and so far limited personal experience.)
That being said, as no one can with absolute certainty tell me how many years I have left nor if I'll be dead by 3:17 PM, Sunday, May 23, 2010, then I have no other choice but to live my life to its fullest as best I can, for as long as I can and do what I think will help me do that.....steve
Joined: May 2005
OK
So the comments "we each have a different story" and the suggestion that we show tolerance to how other chose to battle their disease are out of line and offensive to some of you?
And calling each other "stupid" and arguing who is right and wrong about treatment and how to help people get through cancer is not offensive and helps new people coming here for guidance from our experiences?
NOW I Get it! Name calling and arguing is the way to help people!
Boy, do I feel stupid! All this time I thought it was about offering experience and support.
Joined: Feb 2009
Ironically...
chemotheraphy is used in China to treat cancer. It's used in conjunction with TCM - numerous studies on the internet.
Joined: Nov 2009
im not seeing it
I am new to the board but I am not seeing what you describe. I am not sure that this problem is such a prevailing one that you cant go right to the person you are having problems with. Its a public forum, people are going to say and do things that are rude. Call them out on it. I used to have expectations on how I thought people should respond to a posting or email but I learned that some people take and some people give. Some people are rude and some people are kind. Thats what you get with a "public forum"
Joined: Oct 2009
Phil
sometimes we all need, what my Boyfriend would call, a "wakeup call." Thank you for reminding us that we're all here for everyone, and that we can share our stories, our pain, our experiences, our joy, our hope, with everyone, without judgment. Sure we need our critical thinking skills for discernment, but not in a way to shut others out.
Love ya Phil,
In the Light,
Aud
Joined: Mar 2009
I wish....
I wish the forum included a 'block' feature like found on the Christian forum that hosts my blog so if I or someone irked others, they could just 'block' them (or me :-D ) and would never see anything they posted.
As for now, scroll on......... ;-)
Joined: Jan 2010
Wow Diane, I didn't figure
Wow Diane, I didn't figure you for a fan of censorship. Anyone who is openly religious should welcome other freedoms including the freedom to annoy people whether intentional or not. If you never saw or heard anything you dissagreed with I think life would become pretty mundane. Oh well, to each his own.....
Joined: Oct 2009
Wasn't gonna weigh in..but.......
I watched this thread with mild amusement as another mundane attempt to moderate a forum in one person's views just like the prayer thread was so really didn't care to weigh in on something that shouldn't even be taking up space until this last post..........
Diane in no way supports censorship....she has taken so much heat for her spiritual views (and mine) that she tried to be diplomatic in an attempt to diffuse this meaningless tirade. (I'm not referring to you imagine)
I personally utterly enjoy all and every thread, read and enjoy them all..cry over MOST of them and attempt to pray for and love all who are suffering so terribly from this disease, so post on about any and all things..........I'm a grown man who knows how to let others express their views, vent and EVEN occasionally act or say something stupid(as i do myself)and guess what.......accept it and move on.
so if you juice, juice away.....if you pray...do so loudly and often......if you are not spiritual in any way....say so openly :)LOL.....but above all let's share our diversity, love our differences and support each other in our fight...:)
And Phil for God's sake can you please give it a break.
Joined: Mar 2009
Actually, Imagine...
I would love for those who dislike me or who are angered by my thoughts to be able to choose to never see what I added. :-)
Censoring would be to remove or prevent the writer/ speaker from having their say. A 'block user' would allow those who don't want to read that post the right to not view it. :-) Ever 'hide' anyone or anyones 'games or quizzes' on Facebook? I do!!
Adversity stinks!
Joined: Feb 2009
And....
some people who are not religious also welcome other freedoms including the freedom to annoy other people whether intentional or not. Just saying...
Joined: May 2009
Around my peson, I just
Around my peson, I just ignore them, guess I better use that here too, just like the advice given....
touche'
Joined: Dec 2002
Huh?
OMG, when I clicked on this thread I thought it was talking about Seasonal Affective Disorder!
N/A
This comment has been removed by the Moderator
Joined: May 2009
We are good.....
time to let go.........
Joined: Mar 2010
missed it
Well thank goodness I missed the posts that apparently started all this, only wish I would have missed this one too, LOL.
Nana b, me and you sister, I am good, and if I might add quite happy, time to move on.
If nothing else WE of all people should know, life is to short to focus on the negatives. Peruse the site as you see fit, take what helps you ignore what doesnt and as the great philospher Jimmy Buffet said, "Breath in breathe out, move on".
Hope this finds ya all smilin
chris
Joined: Jan 2007
Hey Phil....
I was wondering (and I hate to appear stupidly naive), but after reading
the posts on your "SAD" thread, were you pointing that thread at me?
I hope I didn't wrongly assume that you understood my stance
on all this cancer crap?
Chemo, or anything at all, is fine when it works, but my feelings
are and always will be, that when something fails to work, we should
try something else.
I get terribly depressed when I read a poster tell how they've taken
everything western medicine threw at them, and the damned cancer
is back..... and everyone starts telling them to try all the new "trials"
with "new chemicals", rather than suggest other routes that have
been successful for many, many others out here.
Even that Hydrazine Sulfate that the Syracuse Cancer Research Center
has done so much research with, gets tossed aside as so much BS
instead of being tried... Good grief... If I had a choice between getting
a placebo or trying something that might actually work....
I always tried to include a statement, that if my route failed me,
I'd look again at chemo, or whatever else is out there. I almost started
with chemo, but it was so long after my operation, that they said
it no longer had as much of a chance to do the job. Cancer cells can
travel and spread fast. after a tumor is opened. Kinda' like a hornet's
nest, ya'know?
I don't know for sure if the herbs worked, so I hesitate telling anyone
to take what I took, but damn... if something doesn't work, move the
&*^%$%^ on before it kills ya'... that's the only message I want to
get across...
It's tough getting that out there Phil.... It's like telling someone to
stop praying to whatever their praying to and do something constructive.
It touches nerves.....
If your thread was aimed at me Phil.... my sincere apologies to you
for causing you to feel so compelled.
Life's too damned short to be hurtful. When I finally die, I'd rather be
thought of as a guy who gave a crap about others...
Sorry if I've been missing the mark.
Take care.
John
Joined: Dec 2006
I am one that Left....
So I know what Phil is talking about.
It is easy when you are "In the Party" to not know what Phil is talking about. I am 4 years out and came here about that time I was DX and I never felt so "Out of the Party" like there was a clique I did not belong to even though like all of you I also had cancer. There was so much flaming going on I got so turned off I left and I was not the only one that left there were several of us that talked back channel about how rude some people were.
I since found other forums that to me were more open and welcoming so I stuck around there. I have popped in her over the past year and I actually thought it was not as bad as it was back in 2006/2007, but I do see some of what Phil is talking about.
I think these forums are to HELP people and it is so great that many of you know eachother and sometimes some of the conversations are best kept to back channels etc.... and always remember that new people come here to be welcomed and not felt that they are not invited to the "party".
And I am a strong person and can handle most things and I can speak my mind, so for me to get offended as I was here, that takes a lot and for me to give it another shot is something most people won't do and more then likely the people that have left we will never hear from them on how they felt.
But again I am not that active here, but I thought it was better around here now then 3-4 years ago.
Just my thoughts for what it is worth......
Liz DENNIS
Tempe,AZ
DX 05/06 Rectal
6 Weeks radiation with 5FU
LAR 10/06 Stage III
Temp Ileo, reversal failed in 05/07 after 1m in hospital came out with a permanent colostomy
http://www.runlizrun.com
Joined: Jan 2007
Liz -
Read your: http://www.runlizrun.com/journey.htm, and really have
to hand it to you. Your choice was difficult, and yet you made it,
and are still here today to tell people about it.
Congratulations!
And thanks for coming back to share!!!
John
Joined: Jan 2010
Thanks for the reminder Phil
Phil,
Thank you for the reminder that we are all here to support one another and share our experiences by responding to THE PERSON WHO ORIGINATED THE POST asking for advice or guidance. When bickering starts among the people who reply, there is little helpful information given and the originator will either look elsewhere or be left at square one where they started - alone, scared and full of questions. There is such a wealth of information available on these discussion boards and it is a shame when someone is scared away when all they needed was a little connection with others who may have had some similar experiences.
I don't know of any one who was given an instruction manual for all of the different aspects in their life that would be affected by cancer when they received their diagnosis. And I am not aware of any one who does not have the same wish and prayer for the outcome of their cancer diagnosis. So...we are all trying to sail the same seas...just in different types of boats and with different equipment and conditions. There are no wrong ways to steer our boats and there is no one who knows how to paddle any better than the next person. We just all want the same thing......to make it ashore.
Part of what has made this tough road a little easier, has been the compassionate, non-judgmental, LISTENERS on these boards, who have made themselves available to me when I needed it the most. If we can offer the same open arms to all people who post - then we will have supplied what these boards were intended to provide - a place of comfort and information for an extremely scary time in life who none of us asked for - or ever dreamed we would have to face.
Thanks again, Phil