New and Scared

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ktlcs
ktlcs Member Posts: 358
edited March 2014 in Colorectal Cancer #1
I am new to posting, but have been reading the board for several months. My husband was dx 10/09 with Stage IV rectal cancer with mets to the liver. Surgery is not an option as he absolutely refuses to consider a colostomy! I should mention that he has been wheelchair bound for 9 years as the result of a stroke. We did 5 weeks of radiation and are currently on Xeloda (1 week on on off) as well as weekly erbitux infusions. So far he has handled everything pretty well, the dry skin and erbitux rash being the worst of it. His last two CEA levels were 2.2 and 1.3 respectively, normal levels! He had a PET scan on Fri. we will get the results this coming Fri at Dr appointment. I have a very bad feeling about it (although I always anticipate the worst) it will be his first PET, has had a number of CTs, the last in March which did show interval improvement.

I am always so scared, scared of what will happen next, scared that I cannot handle this, scared of every small issue thinking it is a sign that things are turning for the worst. Everything little thing freaks me out (although I don't let him see it). It is encouraging to read these boards as I have learned a lot and taken some strength other's stories.

Comments

  • lizzydavis
    lizzydavis Member Posts: 893
    #2
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    Hi Ktlcs,
    Hi Ktlcs,

    You are at the right place and you are not alone. This is a great group of people who will help answer your questions and keep you focused.

    Please try to stay positive. It truly helps us all to keep the best thoughts in mind. If things turn out not to be as we planned, we deal with it the best we can at that time – that is all we can do.

    You will be hearing from others who can shed some light.

    I hope you and your husband will continue to get reports showing improvement. Welcome to our family.

    Lizzy
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #3
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    Welcome to the forum; you
    Welcome to the forum; you have come to a very helpful place.
  • maglets
    maglets Member Posts: 2,576 Member
    #4
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    AnneCan said:

    Welcome to the forum; you
    Welcome to the forum; you have come to a very helpful place.

    welcome ktlcs
    welcome...it sounds as if your husband is doing pretty well. I know it is very very hard but baby steps and hopefully baby thoughts help. By that I mean not too far ahead. We all anticipate the worst and sometimes it really gets in the way of today.

    I am stage IV colon with liver mets twice....6 years and still lumping along :)

    reward yourselves with little treats every day.....you've been through a lot....

    how bout a popsicle???

    welcome and hugs....

    mags
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #5
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    Hi
    I understand your feelings. I remember telling my doctor once that something made me nervous, and then I said, "Well, everything makes me nervous now." And I think that's the nature of the beast (and cancer is a beast!). It takes us out of our comfort zone and puts us somewhere we never planned on going or wanted to be. But what can you do? You do the best you can, and that's all you can. Some days will be better, some will suck big time.

    Come by and share all those feelings with us, and we'll help you through it.

    *hugs*
    Gail
  • terry427
    terry427 Member Posts: 27
    #6
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    Colon Cancer
    Hi,
    This is my first time here. I was diagnosed a few weeks ago after having the colonoscopy and advised that I must have surgery to remove the cancerous polyp & possibly some lymph nodes. Besides a CT scan are there any other tests that you would recommend prior to the surgery. I also have COPD-Emphysema and will have a set of breathing tests this Wednesday. From how the doctors addressed the situation I felt it was imperative the surgery be done immediately but now it doesn't seem to be the case. Have any of you encountered "hurry up and wait"? I don't know how else to describe it.
    My feeling is that if you trust your doctors then most everything is in their hands now. It is no use fearing something you have no control over.

    ~~Terry from Illinois
  • steve g
    steve g Member Posts: 58 Member
    #7
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    A colostomy patients view
    Hi Ktlcs; I can't imagine anyone looking forward to a colostomy but sometimes there is no alternative. As my Dr. said to me " its better than wearing diapers" and I had to agree. It was hard to accept for a while but it soon becomes a way of life and no longer is a problem. If your husband can overcome a wheelchair, then a colostomy will be simple and he should give an operation a second thought. Steve
  • PGLGreg
    PGLGreg Member Posts: 731
    #8
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    surgery
    Since he has responded to radiation and chemo, maybe surgery without a colostomy will become possible, even if it was not feasible in the past. Things change. It might be useful to ask his doctors to reevaluate the situation. Also, some surgeons may be more willing or able to undertake "sphincter-sparing" surgery than others, so maybe you could get a second opinion about this.

    --Greg
  • theresa8
    theresa8 Member Posts: 61
    #9
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    Welcome to the board
    Welcome to the board. My husband was diagnosed with rectal cancer eight months ago. I really understand how you feel, what I found difficult was to not show him how worried I was over the outcome of things. After the initial shock, I came back to my senses and showed a very positive attitude and made him feel that everything was going to be all right. I was his strenght and sunshine during the first dreary months. I don't know how you're going to do this, get counselling if necessary but try to get a hold of yourself and show him that you are there for him no matter what . As others on this board will recommend, get a second opinion. As far as the colostomy goes, my husband has a temporary illeostomy and he says that he thinks it's no big deal. He has a very active lifestyle and it does not prevent him of doing what he wants. As far as being scared my best advice would be not to anticipate or plan what is going to happen next since you will probably be deceived, I know from experience that's it very easy for us women to anticipate the worst and go to bed with our mind racing over the outcome of things. I read on the board everyday and fed on the positive messages of people who had been there and to lighten up my nights my doctor prescribed some sleeping pills so that I was rested and positive the next day. My husband has two rounds of chemo left plus his reversal surgery and I can tell you a lot of positive things have come out of this cancer experience. Hope this helps you a little bit.
    Theresa
  • karguy
    karguy Member Posts: 1,020 Member
    #10
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    Welcome
    I'm sorry you have to be here,but it is a good place to be.I got more information from here than I did from the doctors because I didn't know what to ask.Write down all the questions you want to ask the doctor,because some times it's overwhelming.I have a permanant colostomy,and it's no big deal,I can still do everything I could before,and it's alot better then the alternative.It sounds like he is responding to the treatment,I wish him the best of luck,and try to think positive,there are alot of stage 4 suvivers here,and just never give up.Feel free to ask any questions you might have,someone will have some answers.I hope this helps.
  • ktlcs
    ktlcs Member Posts: 358
    #11
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    karguy said:

    Welcome
    I'm sorry you have to be here,but it is a good place to be.I got more information from here than I did from the doctors because I didn't know what to ask.Write down all the questions you want to ask the doctor,because some times it's overwhelming.I have a permanant colostomy,and it's no big deal,I can still do everything I could before,and it's alot better then the alternative.It sounds like he is responding to the treatment,I wish him the best of luck,and try to think positive,there are alot of stage 4 suvivers here,and just never give up.Feel free to ask any questions you might have,someone will have some answers.I hope this helps.

    New and Scared
    Thank You for the responses, it really helps to be able to voice some of my fears to those who understand. We have gone the 2nd (and 3rd) opinion routes, surgery is just not an option so we go along through treatment and hope for the best. Now sweating out the results of the PET, but it's one day at at time I guess.

    Again, thank you all, your suggestions and experieinces are of great help!
  • Shayenne
    Shayenne Member Posts: 2,342
    #12
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    ktlcs said:

    New and Scared
    Thank You for the responses, it really helps to be able to voice some of my fears to those who understand. We have gone the 2nd (and 3rd) opinion routes, surgery is just not an option so we go along through treatment and hope for the best. Now sweating out the results of the PET, but it's one day at at time I guess.

    Again, thank you all, your suggestions and experieinces are of great help!

    Hi K...
    I also have a temporary colostomy, and just wanted to say that it really isn't that bad. Sure it's not the most pleasant thing to see or go through, but it's convenient, I still do things I have done before, except swim, I also wear shirts wayyy bigger then I should to even hide it, it just becomes part of a routine to change the appliance, which takes me no time now, you get it to a science haha...lets just say my bowels were bleeding into my belly, that's why I had to have a colostomy, and it saved my life. I would have died without it. I could get it reversed, but too scared too, I just rather have the bag now :)

    Hugsss!
    ~Donna

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