Scan went reasonably well but I won't be here any more

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oriontj
oriontj Member Posts: 375
edited March 2014 in Esophageal Cancer #1
Husband's scan was good...his onconglist is a woman...she noticed a slight thickening in the esophagus...she's an agressive doctor and since she said that ec is agressive, she will do an endoscope after Christmas....she doesn't like to wait 3 months for another scan...which is fine with us..he's gained another 3 lbs and weights more than when he got his diagnosis.

As for not coming here any more...when I first posted, I was new to all of this...I was treated rudely by a few people..not all of you by any means...William hurt me the most..and he is the most knowledgeable on the board which wonderful advice..but no one knows an individuals situation or marriage...being judged because I couldn't give my husband advice was cruel because he didn't want any and still doesn't. He didn't want my imput so I ceased giving it. It has remained that way. But it is totally unfair to condemn someone when there is nothing they can do in their situation.

I will come back now and then to see how everyone is doing but I feel like an outsider here...we've had a good year and that might change in fact it probably will...but I feel little support here since I am on William's wrong side. He judged me unfairly and I don't fault him for that..he can do and say what he wants.

So I wish everyone well and will still pray for everyone but I don't feel welcome to post.

jan

Comments

  • Donna70
    Donna70 Member Posts: 852 Member
    #2
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    Please Jan stay
    Jan,
    Please stay on Jan, you have encouraged so many people yourself and I always have felt so touched by your responses. I am sure William did not mean to offend you. It is so difficult when the patient like your husband does not want any advice and won't talk it out. That would drive me crazy, I tell my husband everything and he tells me how he feels when I have had trouble and complications. It makes your job as a caregiver so much harder and it is so hard as it is. Please don't go away from the board, you have many friends and supporters here. I am sure you will hear from more today. take care, many prayers,
    Donna70
  • BMGky
    BMGky Member Posts: 621
    #3
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    There must be some sort of breakdown in communication
    It is disappointing you feel this site has not supported you. Somehow well intentioned responses were not of help. Whatever the reason, we wish you well and hope you will continue to let us know your status. Each and everyone is hoping the best for all affected by this terrible disease. I am glad you have gotten good news. Hope you continue to. As for Mr. Marshall, again, it surely must have been a misunderstanding. The posts of his that I have read, he speaks from his heart and is sincere in trying to be of help. I respect his willingness to speak out against doctors who are slow to respond, who shut the door on options, who do not grasp the devastation of the EC diagnosis. He has also spoken directly as to just what we are facing and our choices. Hopefully, you will rethink your impression of this discussion board and continue to share and to learn. Best wishes to you and your husband in this arduous journey.
  • cmn412
    cmn412 Member Posts: 69
    #4
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    Jan
    Dear Jan,

    I don’t post a lot as I am not sure what to say sometimes and I am always afraid I will say something that will make it worse for someone instead of better.

    I don’t think anyone here would say anything just to hurt someone’s feelings, including William. That being said I know William really cares and wants to help everyone, but He like the rest of the human race is not perfect, (sorry William).

    All of us are different and have lived different lives and have had different experiences which have made us who we are. What is a perfect for one is not perfect for another.

    Thank God we are not cookie cutter people and because we are not, everyone’s opinion and thoughts are needed. I may or may not be able to relate to you or your way of looking at things but that doesn’t mean that someone else can’t or that I can’t be help by a different point of view.

    No one is perfect or has all the answers. Heck sometimes I don’t even know the question (smile). Please do remember the good here and know we are all treading the same waters, just sometimes in different boats and like you are only human.


    PS and a very big PS. I am glad that your husband Scan was good. I will keep both of you in my prayers.

    God bless

    Callie Newman
    09/02/2009 T2N0M0 – Stage IIA
    09/2009 -11/2009 Chemo Cisplatin and , 5 FU
    02/05/2010 MIE at Duke Medical
    Dr T. Pappas and Dr M. Onaitis
  • unclaw2002
    unclaw2002 Member Posts: 599
    #5
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    Jan,I am sorry if I ever
    Jan,

    I am sorry if I ever said anything that seemed rude or harsh. I know sometimes in our frustration to help we nudge, urge and beg that people try to get second opinions, or seek help elsewhere, or not to avoid surgery because it seems scarry if they have that option. But I know deep in my heart that I count every soul on this board as a member of my extended family, ms CSN family, and even if I don't reply to every post I do read them all and care about what is happening to each and every one here. Some days are harder and some are easier for me as a distant caregiver, and then regular life is there too so I don't always reply.

    I am not sure about what happened, but please you are as welcome to post as anyone else. And I can attest to the fact that my father, even when given the best advice has his own mind and has not always followed the best advice. I in a small way understand the frustration of trying to get your husband to consider your input and his rejection of your advice and don't think anyone would judge you for not being able to get a stubborn person to listen to you.

    I hope you reconsider and share with others when you feel it is appropriate. You have much to share and perhaps a day will come when only you will have experienced what someone is asking about --- and then what a loss to the board that you won't be here to help that person walk those difficult steps.

    I wish you well no matter what you decide and hope you have a wonderful holiday.

    Cindy
  • sal314
    sal314 Member Posts: 599 Member
    #6
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    Jan, Please Reconsider...
    I'm very sad and troubled by your post. Please know it is no ones intention to "judge" you or anyone else on this board. Sometimes words and the way we read them can be taken in a totally different light than how they were ment to be received. Mr. Marshall surely did not mean to hurt you, judge you or disrespect you. There is obviously a disconnect somewhere along the line between both parties.

    I hope you will reconsider coming back. Whether you do or not, I respect your decision. I will continue to pray for you and your husband. I wish you a very blessed holiday.

    Blessings,
    Sally
  • Unknown
    Unknown
    #7
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    This comment has been removed by the Moderator
  • sandy1943
    sandy1943 Member Posts: 824
    #8
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    Jan, I was diagnosed in
    Jan, I was diagnosed in nov.07. and didn't find this site until July '10. I wish I had been here during my treatment.I have learned so much I could have used when I was going through treatment. The reason I am here now is because even though I'm cancer free, I want to encourage others. I also need support from ones that have been thru it. I still have effects from the treatment and it helps to know how others are handling the side effects.
    We are all different and what works for one doesn't always work for another. That's why we must learn to use what applies to us and ignore what doesn't. I don't know your personal relationship, but my huaband was a great caregiver. I found out how independent I was during that time. I resented the things he would do for me and I definately didn't need his advise or so I thought. I did give him a hard time,but he refers to my cancer as our journey. He was in it just as much as I.
    I hope you reconcider and stay with us.
    You are both in my prayers, Sandra
  • 3Mana
    3Mana Member Posts: 811
    #9
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    Don't leave
    Jan,
    Don't leave this site. I'm sure William didn't mean anything by what he said. Sometimes people don't think before they speak.
    I have been coming to the CSN website since April 2010. My husband died from lung cancer in March and had a rare side effect from Avastin. I am still seeing a counselor, but have gotten so much support from so many people on here. I feel like they're my second family cause we are all going through or have gone through the same feelings. People can sympathize with you but until they go through dealing with having cancer or having their loved One have cancer they don't know what it's like.
    So please, stay on here cause It will help you alot. "Carole"
  • paul61
    paul61 Member Posts: 1,391 Member
    #10
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    We really hope you will stay
    Jan,

    I hope you will stay with us. One of the shortcomings of this form of communication is that sometimes, because we can’t see each other, things written with intent to be helpful and compassionate don’t come out that way. I know I have posted some things and then gone back a day or so later and read what I posted and said to myself “gee that’s not what I intended to say, I hope they don’t misunderstand”.

    In any case, if I was one of the posts that you found rude, I sincerely apologize.

    I hope you will reconsider and stay with us. We all need all the support and information we can get to fight this disease. I think caregivers need the most support because everyone always remembers to ask how the cancer survivor is doing but people seldom remember to ask the caretaker how they are doing.

    I hope both you and your husband will continue to do well.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • Boston67
    Boston67 Member Posts: 61
    #11
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    Everyone is here for you
    Jan,

    The people here are here for you. No one is perfect, but everone here cares a great deal for everyone else here.

    We, patients and families, are going through a horrible thing. People are frightened, often feel betrayed, and sometimes hopeless.

    We feel your pain because we have own as well.

    When you need the people here, we will always be here for YOU!

    Good Luck and Merry Christmas,
    Keith Rodney age 67, Boston

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