This is not helping...
I am going through chemo right now for recurrent stage iv rectal cancer with met to liver. Guess what? I am NED. This is mop-up chemo and regardless of what YOU think, I will beat this and WILL live a long and happy life. Why? Because I believe it!
I came on here today and what do I find? Oh I am killing my liver by doing chemo and will die. One person disagrees and the playground bullies attack. What ever.
I wish you all the best and I wish a lot of you would get over yourself. You are not doctors. You are not anymore experienced than the rest of us since EVERYONE's issues are their own - no two alike.
Comments
-
Vickilg -
Re:
"I came on here today and what do I find? Oh I am killing my liver
by doing chemo and will die. "
I hope you don't leave for too long, your input is welcomed here!
To be fair, the thread you're referring to didn't suggest that at
all, what it did say was re-posted for clarity. It said that the one
specific chemical treatment could be life-threatening, and another
chemical treatment can be used in place of it.
Sometimes in haste, we overlook an important section of a post,
and come away feeling offended when we should actually be
thankful that there's a forum like this, where we can learn the truth
that even our well-trained physicians have neglected to tell us.
So please don't leave, there is so much information for all of
us here, that no-one should deny or deprive themselves of
all of it for the sake of something that is deemed offending.
There was an old saying: "Don't throw out the baby with the bath water".
We all can get offended at things at times, because we are all
very sensitive to our condition and our paths we take to stay alive.
Stick around, willya'?
My very best wishes for your better health!
John0 -
sorry
Hi Vicki,
I'm sorry to hear you will be leaving the site, but you do what you feel you need to do. That's SO wonderful that you are NED & yes, I believe it's possible for you to stay that way! It gives me hope, as I have not achieved that but still hope to.
I know that several have not been posting lately & I don't know if that's permanent or just temporary, but I do hope that you will check back with us sometime.
I know the tone of the board has not been as healthy lately, overall. So, you focus on living, as you say.
Take care of yourself & hugs-
Lisa0 -
Hi Vickilisa42 said:sorry
Hi Vicki,
I'm sorry to hear you will be leaving the site, but you do what you feel you need to do. That's SO wonderful that you are NED & yes, I believe it's possible for you to stay that way! It gives me hope, as I have not achieved that but still hope to.
I know that several have not been posting lately & I don't know if that's permanent or just temporary, but I do hope that you will check back with us sometime.
I know the tone of the board has not been as healthy lately, overall. So, you focus on living, as you say.
Take care of yourself & hugs-
Lisa
you said it correctly Vicki....no two people are alike....
everyone has to do their own cancer in their own way....I also agree with you that perhaps a little less grandstanding and a little more support, love and acceptance would go a long way.
Focus on yourself and how you are going to beat this beast....
best hugs, mags0 -
Well said , Magsmaglets said:Hi Vicki
you said it correctly Vicki....no two people are alike....
everyone has to do their own cancer in their own way....I also agree with you that perhaps a little less grandstanding and a little more support, love and acceptance would go a long way.
Focus on yourself and how you are going to beat this beast....
best hugs, mags
Vicki take
Well said , Mags
Vicki take care God bless0 -
I hear Ya loud and clear...........!
Vicki,
I too have had issue with the negativity we sometimes feel from reading certain post's. I too have swore off this site only to come back to the people who matter to me. We are not going to agree with all. I try to take what I need, give what I am capable and leave the rest.........
I havnt been posting too much just reading, sometimes I get annoyed at what I read but them move down 2 lines and find a heartfelt post of someone giving or recieving very needed information and love......
When I worked as a laborer for bricklayers (many years ago) 4 stories up on a staging someone said something I didnt like I wanted to throw em off, but didnt want to kill em just hurt them enough to get my point across. Since then I've matured a little not much People can still push my buttons even here on this forum. The best solution for me (which I cant always do) is move to a more positive post and send someone who needs it some love. When I delve into the negativity as I have in the past it usually backfires and pisses me off even more. (not worth it I am here for peace)
Vicki This site needs you.........you are a very strong power of example and people could gain alot from hearing your story and journey. If you go I understand and wish you continued health and happiness. If you stay and pull up a post thats bad...give it the finger and move down one....
Peace and happiness to you and yours,
Love,
Tom0 -
EVERYONE's issues are their own
hi vickilg,
i too am thinking of leaving, i wanted a discussion about liver damage which is an issue i am dealing with now my folfox chemo is finished. what point of raising difficult questions if you cannot get answers. even the question causes to much pain.
i asked the forum for help, only a couple of helpful replies. i ended up finding my own answers for folfox and liver damage. so i have answers that will really help improve peoples folfox treatment. do i post it or not? of course i do.
i am glad your positive and ned and wish you good health.
pete0 -
If you want thatpete43lost_at_sea said:EVERYONE's issues are their own
hi vickilg,
i too am thinking of leaving, i wanted a discussion about liver damage which is an issue i am dealing with now my folfox chemo is finished. what point of raising difficult questions if you cannot get answers. even the question causes to much pain.
i asked the forum for help, only a couple of helpful replies. i ended up finding my own answers for folfox and liver damage. so i have answers that will really help improve peoples folfox treatment. do i post it or not? of course i do.
i am glad your positive and ned and wish you good health.
pete
Start a new thread about that.
Changing the title did not change what had already been said.
You got good advice, take it.0 -
Some people are afraid, someBuckwirth said:If you want that
Start a new thread about that.
Changing the title did not change what had already been said.
You got good advice, take it.
Some people are afraid, some are in denial, some are okay. Why not use your encouragement to help those in need. Smiles and Laughter, Raquel Stage 4. Chemo is bad for you, we all know that. Just keep putting one foot in front of the other.0 -
Vicki.........luvmum said:I like your positive attitude!
Dear Vicki,
I really like your positive attitude. You certainly give me hope
I'm hoping my mum will have her NED soon!
Take good care and wish you have a wonderful life.
Love Dora
Everyone has their limits on what cooks their bacon, and every song and every story will have a lyric or a line that just doesn't seem to suit. In any matter, the song is still sung, and the story is still told. Thats just part of life. I get mad or aggravated because I am Stage 4 but !!! I feel like Im going to live forever. I may not but thats not how I feel now, 4 is a simple number, as cancer is cancer, Life will never be all great, and neither will this forum. So, if you feel the need to leave as I did once before, then thats what you need to do, for whatever reasons, except maybe to help yourself emotionally and we think no less of anyone for doing that. There are lots here who read but not post (lurkers) simply for the knowledge and up to date information they can get here. I completely understand the negativity that you can hear can be very disheartening to someone fighting for their lives in which here, all of us are. Not just you, or me, but all of us, and whether or not it offends, the intention to present this in here was not to deter but to expand peoples knowledge of their treatment options in case they want to proceed down other paths that may not be "mainstream" (please don't anyone throw tomatoes and lettuce at me). So, my young lady, its fully understandable that you are upset, it upsets me too, but after reading a few posts in a few threads I figure out pretty quick which ones I want to read, and which ones I don't. I will no longer ever bother about any other thread unless it becomes very detrimental to a lot of people, we have monitors, mediators, and admins that will remove it for us. You lose a lot of great info if you leave, and somewhere in your life in everything you or anyone else does there will always be debate or issue. Main point is this, we are here for the masses, and while we try and keep all heads above water there will be a few that just get "enough". Completely understandable....I wish you would stay but its ultimately your choice. I wish you all the best in both your journey and your life and wish everything well and good for you, where ever you are........love to you and yours..........buzz0 -
BuckwirthBuckwirth said:If you want that
Start a new thread about that.
Changing the title did not change what had already been said.
You got good advice, take it.
I think you do more damage then good! Get off that high horse and ride a donkey for awhile. Geez! I am thinking about people's feelings here, who only have good intentions.
Okay, I am not deleting this. But I do apologize to you, I should have PM you.
See my PM0 -
Thanks NanaNana b said:Buckwirth
I think you do more damage then good! Get off that high horse and ride a donkey for awhile. Geez! I am thinking about people's feelings here, who only have good intentions.
Okay, I am not deleting this. But I do apologize to you, I should have PM you.
See my PM
Out of respect to you I would have deleted my post, but it was too late and editing is no longer an option.
Yours,
Blake0 -
And then you find another post...positive all the way....
'Can I travel with my mom'....
Check it out...it's the 'other' side!!!
You are right, this is NOT a place for medical advice...but it is only fair if someone has some trouble to ask for help. So, as our dear Scouty just posted...you KNOW what the post is going to be, so then don't read it...
In the last 48 hours I personally have posted 3 very upbeat posts...look around, I'm sure you will find others!!! But, in the final analysis you need to 'do what you need to do'...
Hugs, Kathi0 -
So sorry
Vicki,
This post makes me sad, because I am a Relay For Life volunteer, and I so much appreciate what the American Cancer Society has done for us by providing this site. I find it very helpful most of the time and very supportive most of the time. No, we're not doctors, although there are certainly some who have a lot of experience, there are some here who are not only patients, but also nurses and doctors.
I'm sorry if you have felt negativity. Sometimes that happens, but I think it's like a family. You have squabbles or misunderstandings, but mostly you love and help each other. I'm sorry that hasn't been your experience here.
I hope you will stick around and give it more time. You are fairly new to the board and might feel differently after you've been here awhile.
At any rate, I'm very glad about your status. You're a beautiful lady, and I wish you well.
*hugs*
Gail0 -
I would miss you!pete43lost_at_sea said:EVERYONE's issues are their own
hi vickilg,
i too am thinking of leaving, i wanted a discussion about liver damage which is an issue i am dealing with now my folfox chemo is finished. what point of raising difficult questions if you cannot get answers. even the question causes to much pain.
i asked the forum for help, only a couple of helpful replies. i ended up finding my own answers for folfox and liver damage. so i have answers that will really help improve peoples folfox treatment. do i post it or not? of course i do.
i am glad your positive and ned and wish you good health.
pete
Pete,
What are you talking about? Don't leave! The only reason I didn't answer your question was because I had no answer!
*hugs*
Gail0 -
Tied One More Time
I thought about it and you know this site needs positive people and then I read this little cheerful message that was recently posted so for my own healthy outlook, I am done for good with this site. I feel so sorry for people that come here looking for encouragement because YOU can beat this. Trust me, no one is coming here for YOU to tell them that they will never be cancer free. I feel bad for you and others that think like you. Again, YOUR story is YOUR story... not mine. Just because you are not doing well do not dare say that someone else will be in your same situation because there are many, many survivors that live long healthy lives. YOU are not God. YOU are not MY doctor.
Posted by Phil
I kind of equate your post with when I see someone post that the are "finally NED!!!"
Do you have any idea how many times in the past few years I've read that only to read 3 months later that "it's back..I'm so bummed". I could post that they shouldn't celebrate too soon but I congratulate them or I say nothing. The same goes for the 12 round/cycle/dose of chemo stuff. "Only 3 more until I'm done with chemo!!!" I heard that myself once... 243 chemo's ago. I don't tell them "well don't bank on it". So I feel that warning people of potential risks and making something out to be the boogey-man are different issues.0 -
Vickilg,Vickilg said:Tied One More Time
I thought about it and you know this site needs positive people and then I read this little cheerful message that was recently posted so for my own healthy outlook, I am done for good with this site. I feel so sorry for people that come here looking for encouragement because YOU can beat this. Trust me, no one is coming here for YOU to tell them that they will never be cancer free. I feel bad for you and others that think like you. Again, YOUR story is YOUR story... not mine. Just because you are not doing well do not dare say that someone else will be in your same situation because there are many, many survivors that live long healthy lives. YOU are not God. YOU are not MY doctor.
Posted by Phil
I kind of equate your post with when I see someone post that the are "finally NED!!!"
Do you have any idea how many times in the past few years I've read that only to read 3 months later that "it's back..I'm so bummed". I could post that they shouldn't celebrate too soon but I congratulate them or I say nothing. The same goes for the 12 round/cycle/dose of chemo stuff. "Only 3 more until I'm done with chemo!!!" I heard that myself once... 243 chemo's ago. I don't tell them "well don't bank on it". So I feel that warning people of potential risks and making something out to be the boogey-man are different issues.
I am so sorry that
Vickilg,
I am so sorry that you are this upset. Please try to look at things from a different perspective.
This forum is about TRUTH. People share their realities. Other people gain knowledge or hope from someone who keeps winning the battle.
There are many people that have beat the beast. You probably won't find them posting here, they have moved on. They no longer need this forum.
this may not be the right place for you at this time. But we will be here if you ever need us.
We will be caring and supportive, but we cannot alter the truth of our experiences.
I wish you all good things,
Judy0 -
Vickilg -jjaj133 said:Vickilg,
I am so sorry that
Vickilg,
I am so sorry that you are this upset. Please try to look at things from a different perspective.
This forum is about TRUTH. People share their realities. Other people gain knowledge or hope from someone who keeps winning the battle.
There are many people that have beat the beast. You probably won't find them posting here, they have moved on. They no longer need this forum.
this may not be the right place for you at this time. But we will be here if you ever need us.
We will be caring and supportive, but we cannot alter the truth of our experiences.
I wish you all good things,
Judy
Ditto Judy's post, she probably said it all for most of us, me included!
Don't abandon us, just "take a break" as most of us do from
time to time..... Then come back and see us, OK? We -do- care!
Stay well,
John0 -
I could not have said it better!jjaj133 said:Vickilg,
I am so sorry that
Vickilg,
I am so sorry that you are this upset. Please try to look at things from a different perspective.
This forum is about TRUTH. People share their realities. Other people gain knowledge or hope from someone who keeps winning the battle.
There are many people that have beat the beast. You probably won't find them posting here, they have moved on. They no longer need this forum.
this may not be the right place for you at this time. But we will be here if you ever need us.
We will be caring and supportive, but we cannot alter the truth of our experiences.
I wish you all good things,
Judy
This forum is for all the stuff...good AND bad...happy AND angry....we come for support both when we are happy, and when we are bummed. But, yes, being a long timer (6 years) I can tell you many of the other long timers I know and knew are either just staying here behind the scenes, or have gone on with their lives.
I wish there was a magic way to turn the anger (which is part of this process) on cancer itself, where it belongs, instead of at each other, and at our support system in our lives...hard sometimes, but I try to explain when I am feeling off, or make a comment that is hurtful...
Hugs, Kathi0 -
MisunderstoodVickilg said:Tied One More Time
I thought about it and you know this site needs positive people and then I read this little cheerful message that was recently posted so for my own healthy outlook, I am done for good with this site. I feel so sorry for people that come here looking for encouragement because YOU can beat this. Trust me, no one is coming here for YOU to tell them that they will never be cancer free. I feel bad for you and others that think like you. Again, YOUR story is YOUR story... not mine. Just because you are not doing well do not dare say that someone else will be in your same situation because there are many, many survivors that live long healthy lives. YOU are not God. YOU are not MY doctor.
Posted by Phil
I kind of equate your post with when I see someone post that the are "finally NED!!!"
Do you have any idea how many times in the past few years I've read that only to read 3 months later that "it's back..I'm so bummed". I could post that they shouldn't celebrate too soon but I congratulate them or I say nothing. The same goes for the 12 round/cycle/dose of chemo stuff. "Only 3 more until I'm done with chemo!!!" I heard that myself once... 243 chemo's ago. I don't tell them "well don't bank on it". So I feel that warning people of potential risks and making something out to be the boogey-man are different issues.
I never said that people won't be cancer-free. I'm doing great with my chemo. I'm VERY glad that the different forms of chemo are available for me. I do my chemo every 3 weeks and don't really give it much thought in between. I think that showing that people can live with cancer for over 7 years and have a good life is positive. I never said that cancer can not be beat. Not even close. It seems my post was not read fully or fully understood. However, I do not think that posting fear-inducing threads about how chemo is going to kill you or that you should chose your poison wisely does anything to make people feel at ease.
I pointed out observations I've made while being on this site since 2005. I do not believe that anyone who's been on this site for over a year can dispute what I've observed.
Maybe your post isn't directed at me but I am not trying to be any of those things to you, I'm just saying that words from a doctor are not as important as how one feels or what treatment options one choses. I happen to have trust in western medicine and while chemo can have adverse effects, my experience is that it works.
I do not think that making chemo the monster instead of cancer being the monster helps at all.
I wish you well Vicki. I'm sorry that my post was not understood and that it upset you.
-phil0
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