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Thanks to all of you on this board but

oriontj
Posts: 390
Joined: Jul 2009

from now on I'll probably just read not post. I feel that William over stepped his boundaries when he questioned me in his response. I also see that if you are not a William fan...you are basically ignored on this board. I was told in another board that this would happen but didn't believe it..I do now.

We are not all walking this journey in the same shoes or it would be one size fits all..it's not that easy...some cannot have surgery some have it and done well and others not so much. To be encouraged to do something your cancer team doesn't advise is not good advice..Our hospital is the U. of Chicago...their surgeon told us all the risks and said my husband is not a candidate for surgery..not that we couldn't find someone who would do it. A surgeon's job is to do surgery..period...you can always find some willing to cut..but to be told that our way of thinking is wrong..is absolutely not right.

William's dr. is top notch...but it's not for everyone..nor is he. I feel my orthopedic surgeon is the best ever..but others might not think so..despite his 15 inventions and doing the oral exams in orthopedics or being the Director of his dept..

I feel that his dr. is literally being forced on people who will never see him...too far away..being one..and to hear someone say he's the only one to go to is discouraging and actually not truthful. And not only once but every time someone new comes aboard...the story is repeated making you feel worse since his dr isn't treating your loved one...

No one can read your heart and mind, but William decided he could do both for me..plus give unneeded and not asked for advice..that's not his job. And when I replied, not even the courtesy of a response...why would that be? He has no business analizing me, my husband or our marriage nor is he qualified. Then why would he do that?

Postive attitude has nothing to do with cancer suvival except it makes having it or living around someone who has it more plesant...scientific fact.

Your immune system cannot fight cancer...it doesn't recognize it...or they would be NO cancer..except for three kinds of viral cancer it does recognize...scientific fact.so much for that positive imaging...better to imagine the radiation and chemo working hard.

I probably have overstepped the boundaries...but this is how I feel and I have seen the responses to posts...but not to mine...we got good news Friday...I wanted to share with everyone..because this cancer doesn't give much good news and our good news could become bad news quickly...but no responses..

I'll be praying for everyone as I read your posts..

oriontj

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

Sorry you feel that way but I also have read some of your post and didn't reply due to the fact that I really don't believe some of the things you say, No maybe everyone is not a candidate for surgery, but you only wanted to believe what you wanted to believe.

I truly believe Mr. Marshall is great with words, Did you by chance read the article he wrote for our dear beloved Kitten, obviously not or you would have a different action. He is one of a kind, he always has the right words to anything, He helped me in so many ways, and still does I have had so many compliments from the beloved Kitten's site of how well and what an awesome person he is.

I am sorry you feel the way you do but Mr. Marshall isn't going anywhere too many people on this site love him.

Keep it up Bill

Lori

oriontj
Posts: 390
Joined: Jul 2009

You didn't believe what I said...about what...No I believe exactly what the team told my husband...his cancer is not at the stomach junction...a lymph node is twined around the esophagus..

Mr. Marshall is wonderful with words and yes I did read what he said about Kitten..and it was was beautiful...but he was also hurtful in his response to me..just what you don't need on a cancer board..so his words were not the right words for me...and if he knew me better he would of understood that..

He doesn't need to go anywhere...I can choose just to read...lifting up spirits is a worth task...but so is the telling the truth...

mumphy's picture
mumphy
Posts: 486
Joined: Jun 2009

You are entitled to you opinion about William, but we are not stepford people who follow William as a cult leader. I just so happen to have alot in common with him. I live in Pittsburh and was lucky enough to have been referred to the same surgeon that did his surgery,
Dr. James Luketich. I do have to say that we went to him for a second opinion another Dr. in
the area referred us to him and The Hillman Cancer Center in Pittsburgh. These Dr.s found
clinical trials for my husband and due to that he was able to have the surgery that probably
saved his life.

I was first told when I joined this site to watch out for William he is scarey and you might not like what he has to say.

I have to say that if anyone is interested in having the MIE procedure that Dr. Luketich does
all you have to do is call his office and his staff will refer you to the Dr. nearest to you that is qualified to do the procedure.

Everyone here has a choice, we have joined this site for comfort,support and sometimes a little advice.

I have to disagree with you on the fact that a positive attitude has nothing to do with someone surviving cancer. Attitude is everything along with strength, hope and of course
the Dr.s that treat the patients.

I like many others on this site come here to vent, discuss and find out information.
The reason that I didn't respond to your postings is that I really didn't like what you said on your first post I found it negative and uncaring.

We all have different ways of dealing with things. So I respected you opinion and just choose
not to reply.

I am not brain washed by William.

Thank you,
Mumphy

oriontj
Posts: 390
Joined: Jul 2009

It's not a matter of liking what he says as much as he sure doesn't have the right to ask if someone has been abused...what kind of question is that? He can give all the advice he wants without over stepping into to areas where he shouldn't or isn't qualified to be...that's the personal part...No one has that right unless it is given to them by the person her/himself. That's always a good thing to remember anywhere you go..

That said. I sure will continue to read and respond to the board we are not one of us in the exact same spot or stage of treatment...Someone has to tell the other or a different side of this fight...and I think I'll step up to the plate and do just that...without special panties...I wear big girl panties every day...np need for sipecial ones.

oriontj
Posts: 390
Joined: Jul 2009

Your reactions could be mine...I felt the same way and my husband acts the same way..opinions are just that opionions...but it sure would be nice to hear IMO...then you could separate what you might want to read from out right unkind words...which I willnow ignore from William...he has his way of staying afloat and I have mine...I agree he is a beautiful writer and the scriptures are right on...I just am not one bit comfortable quoting scriptures at all...that's just me...doesn't mean I don't read them....but writing them are out of my comfort zone...for now.

Kpup
Posts: 16
Joined: Oct 2009

Hi Oriontj,
I'm sorry your experience is a negative at this point. I hope you will continue to read the posts because there is a lot of positive learning and resources to be had as well. Please know you are not alone and everyone has found their way of resolution. You spoke up for yourself and your perspective (beliefs) on things. If you read through old posts you'll see Mr. Bill (and others) have been put through the wringer before. Everyone is needed here. Each experience is different and valuable. I am grateful CSN is here and try to focus on that. CSN has helped a lot of people and was working fine before I got here and will continue to do so whether I'm here or not (I remind myself of this ALOT some days) :). Some of the things that help me with my responses to what I'm experiencing are "Take what you like and leave the rest", "Everybody is good for somebody; Nobody is good for everybody" also "live and let live". It's easy to see how helpful people have been for one another here whether we agree with whats offered or not and how important it is that we have people willing to speak up on all sides.
I hope everthing works out for you and your husband. We all just make the best decisions we can. I will be just a reader for a while myself due to my own surgery but will be thinking of how you and the others are doing. It's hard, at least for me,to keep track of all the posts and while I have the strength to read a post, I don't always have the strength to respond or the required wisdom. We need our community elders! :)
I hope you'll hang around. (me too!) LOL...........................................kpup

JaneE2366's picture
JaneE2366
Posts: 332
Joined: Jul 2009

Lori, Mumphy, Sherri, Kpup
Nicely said.......you take what you need from the postings...and leave the rest. Most important thing to remember is everyone is different.....everyone's situation is different, we are all looking for a solution but one solution doesn't fit everyone's situation.
Jane

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

I second this, you take what you need, that is what I do, because we all are in different places, same disease but it is not 100% the same for each of us, because it is our body fighting this. I hope you will still be on the board, everyone has something to contribute and like going to church, we listen and take what we want to our hearts. Everyone is entitled to their personal opinion and when a person is trying to help they only have the best intentions.take care,
Donna70

marielle
Posts: 6
Joined: Dec 2009

Hello all,
I follow this board and have been for quite some time. You are all an inspiration and a great support system.

I need to say the surgery is not for everyone due to a person's state of health. My husband was dx in October 2008 (Stage 1/borderline 2a) and had chemo/rad, and has been cancer free since April 2009. He had a complete response to the the treatment, with no residual tumor. Biopsies proved to be negative of the tumor site and surrounding nodes. He has heart issues and HE decided not to opt for the surgery. I too, did not feel it was in HIS best interest as I do not think he would have made it through. His doctor agreed as well. This is the decision WE made. He is monitored closely with scopes and pet scans. I have read of many who DO NOT have the surgery and do quite well if the disease is discovered early. We are thankful that his was, as from what I have read he is one of the few.

I pray for all of you that go through with the surgery, and pray for your recovery every day. The original post here is a reminder that each case is different and the person must decide what is best in their particular case.

Marielle

Betty in Vegas's picture
Betty in Vegas
Posts: 311
Joined: Jul 2009

And I am sad that sometimes, posts come across harsh--and people are hurt. It is difficult for that not to happen--we are all totally raw from the experience, and we all have different personalities. Some are independent stand on their own types, and some are so melded into their spouse that it is hard to distinguish one from the other...and some are not married to the EC patient, but are children or brothers or sisters of the patient. So every case is so different.

That being said, I hope you won't leave. I think that people who may be new need to hear ALL perspectives and if you are not here, your voice will be missing. Who knows that someone who feels just as you do won't feel alone because you have not shown them how YOU did this walk?

Hugs from Vegas.

jethro-t's picture
jethro-t
Posts: 23
Joined: Dec 2009

My husband has just been diagnosed with EC. Not staged yet, waiting on PET scan this week. He doesn't really want to have surgery, but we are afraid not to.

It helped reading that your husband did not have surgery. My husband also suffers from other health issues so it is a concern of ours. I am praying that the doctors guide us in this very important decision. But it is comforting to know that chemo/radiation worked for your husband. do you mind me asking how often and long he had treatments and how they affected him in case we go this route and not surgery?

Also, if we have surgery, anyone out there that can tell us about how long you have a feeding tube in after surgery, what is the recovery period in hospital and at home like? We have been told we can't have the MIE, but the kind where they make two cuts and pull everything up. We would have both feeding and waste tubes... We should get more detail this week after talking back to surgeon. We PRAY that there is not any more than they suspect.

Thanks

Jethro-t

aunti_m's picture
aunti_m
Posts: 42
Joined: Oct 2009

I'm sorry you're so upset about this website. A lot of times I don't reply because I just don't have the words to say. I felt similar to you with regards to William. My first response from him after joining felt hurtfull and judgemental and it got me very frustrated. I don't think he meant it to be that way but what I had was a pretty simple question and what I got was a long list, questioning my love and devotion to my husband and family. I thought how rude for someone to be so quick to judge when they know nothing about me. I thought hard about finding somewhere else to turn 'til I got a response from Kitten. She was the reason I stayed. The only comfort I found in his reply was that he did take the time to write it. He has helped a lot of people on this site and that's a wonderful thing. I've found you take what you can from here and if it helps GREAT if it doesn't and it upsets you, please leave it here, we already have enough things to upset us. Take care and I too will be praying.

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

very nice note aunti_m
thanks

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