just wongering updated

[dixiecups]

hi
everyone that responded to my posts really doesn't understand what i meant. you all need to get a grip or learn how to read. if for one minute you think that cancer comes back b/c the person did not do what i posted you are crazy. this truly is not a place for support. this is what i am doing to try to prevent it from coming back. if one day it does then i will deal.please you all need to read and not jump on people b/c they have a different belief system than you.

[Bev G]

HI Dixiecups,

I think we all perceive support differently, just like we perceive many other things uniquely. I wish you had felt supported here, and welcome you to stop back by anytime you feel like it. Also, wishing you the very best health and a peaceful life, whichever path you choose. It is ALWAYS up to each of us as individuals to choose the path, taking or leaving whatever advice we receive, as we see fit.

All the best to you,

Bev, a fellow stage IV on the journey

[robinkaye]

Dixie, this all started with your question regarding the frequency of scans, you were concerned with being lit up so often. Diane responded that since you had not
had surgery it would be a good idea to get the scans as chemo is not considered curative the same as surgery therefore it is a good idea to do intense follow-up.
That wasn't meant to say that you couldn't retain your NED status but the liklihood would not be as good as with surgery...even if you can't see anything there could still
be something lurking.

You were also quite adament that your lifestyle change could determine what would happen in the future, though you have said and I believe you that that was not
what you meant. Maybe if you go back and re-read all the posts you might see that you weren't being attacked, you were being given some good advice. Some people
just want to hear what they want to hear, others want to hear everything the good and the bad, what to expect, what others went through and so on.

Cancer is not sunshine and lollipops, there are horror stories and miracles. I for one want to know everything to be prepared for anything. There is not one person on this board - caregiver or
patient that has not gone through some type of hell some much worse than others. I would imagine that many are hardened to the realities and try as delicately as possible to prepare the
newer members for the harsh realities that comes with a cancer diagnosis. I know that I appreciated all that I read regardless of how it made me feel at the moment. No one here is paticularily special, cancer has a mind of its own, some people will do fine and live to a ripe old age and some won't. My husband was the healthies person I knew, climbed mountains, ate right, no vices but it got him.
So far so good, a lot of problems throughout his treatment but for now, no cancer. I have no idea what the next test will bring and I believe the odds are with him. However, I have no delusions either, preferring to be prepared to battle whatever comes next if cancer should return.

If you are here just for the swinging chickens then you probably won't find what you are looking for. I'm glad that there are well seasoned people telling their stories and leading the rest of us through this maze. Katherine, Diane, Bev, Eric and many that are no longer here (Rix) have been out there telling it like it is and I am very grateful.

[Rob in PA]

hi
everyone that responded to my posts really doesn't understand what i meant. you all need to get a grip or learn how to read. if for one minute you think that cancer comes back b/c the person did not do what i posted you are crazy. this truly is not a place for support. this is what i am doing to try to prevent it from coming back. if one day it does then i will deal.please you all need to read and not jump on people b/c they have a different belief system than you.

I thought I understood pretty well. Here is what I responded to what I perceived to be your question about a.) how often for scans, b.) how often for colonoscopy, c.) impression of "NED" status. This is what I replied...

"Dixiecups,
All you need to be concerned about is that right here, right now, you are NED. Forget the word "cure" for now and just focus on the fact that cancer can't be detected in your body right now. That's my feeling. Scans every six months for the rest of your life? Yes, that seems a bit much to me as well. My doc had me on the three month plan and now that I've been NED for the last two, he's bumped me to the six month plan for a year, and then he wants to go to once a year for five years. Who knows after that? I'm just happy that I have a doctor that is talking to me like I'll be around six years from now Colonoscopy? I haven't had one for almost three years. Thinking they are going to call for one this year sometime.

Wishing the best,
Rob"



....so, as "one who responded to your post" did I misunderstand, or do I still need to get a grip or learn to read? Believe or not, I'm trying to support you. But I won't blow sunshine up your butt, this site can be a stark reality check in addition to being a comfort.

Best to you
Rob

[sadysue]

dixiecups....I read the posts and it seems that there was a lot of support for what you are doing. Maybe you are the one who is not reading the replies correctly or maybe you are having a problem expressing exactly what you mean, so it is being misunderstood by others. Who knows. I wish you good luck and best of health and am sorry you are upset.

[BrownBagger]

Dear skycup,
thank you for your encouraging words. i am determined to beat this no matter what. i truly believe if you keep your immune system strong,eat healthy,and exercise there is no reason for it to come back. your mind also has a great deal to do with it. if you keep worrying about it coming back it will . you have to stay positive and keep your mind strong. i firmly believe this .

Here's what you said, dixiecups. You can believe what you want (and more power to you), but I can see how people, including me, would be offended by this statement, because it's simply not true in our experience. I just learned that I have a second recurrence. Ask anyone on this board whether that would be possible if what you said were true.

It's also been my experience that anyone who starts an "I'm leaving" thread has no intention of doing so. I think you're trying to pick a fight because people took exception to what you said.

Get over it. I have.

[KarMel]

Yesterday you posted about wanting to unjoin.
Today, you tell us to get a grip, learn how to read, and that this is a truly not a place for support.

You blame us for not understanding what you meant. Communication is a two way street. I believe you have misunderstood what many of us have tried to say to you.

This a large group of many people, with many different experiences, from many different backgrounds. There is no way we are all going to agree with each other. If someone says something that is in disagreement with your beliefs, it is NOT a personal attack. It's simply a difference of opinion, based upon our personal experiences. And remember, many folks here have been dealing with this a long time

I often compare this group to a family. I and my siblings occasionally get into spats and arguments. I have a crazy uncle Wally who believes in some outrageous government conspiracies. I love him dearly, but sometimes, I just have to tune him out.

I wish you nothing but peace and health as you continue this journey. We will be here if you desire to return.

[Laurettas]

This seems to be one of those perennially difficult/sensitive topics that comes up on here. And the tone seems to depend on where each person is at individually at the moment.

I posted a couple of months ago about the statistical reality of stage 4 cancer and that we ought to be pushing for more and better treatments and was treated pretty harshly. I was thought to be much too negative about the reality of this disease. Now dixiecups is posting about hope and a positive attitude and she is being received negatively.

I believe that these are all phases that people go through and we probably ought to just allow them to be experienced and maybe temper our opinions if we don't agree. Maybe we ought to post on the threads that resonate with us at the time and just let the others go. Those who agree can chat about their opinions and those who don't can put up their own threads with their thoughts about their own situation.

[BrownBagger]

hi
everyone that responded to my posts really doesn't understand what i meant. you all need to get a grip or learn how to read.

This is just plain rude, especially for someone new to the board. I don't see why this sort of statement should go unchallenged. Seems to me that the people complaining the loudest about being "abused" are the ones throwing most of the mud. That's just an observation.

[Laurettas]

I just learned that I have a second recurrence.

Eric, I meant to ask you about this. Are you talking another one since the one mentioned in your signature? If so, I am very sorry to hear that.

[BrownBagger]

Eric, I meant to ask you about this. Are you talking another one since the one mentioned in your signature? If so, I am very sorry to hear that.

Yes, I'm back on chemo starting Monday. Details in the 53rd St. thread.

LOL, I need more sig capacity. Probably a perc Stage 4 vets should get.

Thanks.

[hannahw]

There's a difference between having a difference of opinion and not being supportive. I'm not quite sure what people think they're going to get when they post their opinion to a forum? Some people will agree and some people will disagree. That's the nature of discussion. If you only want to read comments from people who agree with you, maybe you should post something that says DIFFERENT OPINIONS NOT WELCOME. Otherwise, it seems pretty unreasonable to expect everyone to agree. There are lots of different ways to deal with having cancer. What's important is finding a way that works for you. If you've found something that works for you, great. The fact that other people have found different ways that work from them doesn't undermine your way. Do what works for you. Don't expect everyone to agree.

[sandrichelle]

Dixie, I think you are being a tad bit hypocritical in that it's ok for you to offended by someones post but they are not allowed to be offended by yours? How does that make any sense...lets all be adults.

MUCH MORE IMPORTANTLY- Brown, I am so sorry to hear that news....positive thoughts, prayers and swinging chickens all headed your way!

Michelle

[jjlist]

lol michelle, well said
i am offeneded that you are offeneded to my post when i was offended to her post when she told me how offensive it was that i was offeneded...
and so on and so on,,,,

[ccmc]

There's no need for any further "fanning the flames" on either side of this thread, and it's not serving any meaningful purpose, so it will now be locked.


Colon Club Moderation Committee