nudgie Member Posts: 1,478 Member
edited March 2014 in Colorectal Cancer #1
Just want to know if I am the only one that sometimes feels this way or even thinks like this:

Even thought the tests and Docs tell you, you are NED/ALL CLEAR, do you find it hard to feel "normal or healthy"? It is weird, sometimes I am actually afraid to feel good or healthly, I just just scared it won't last.

I know it sounds stupid, but thought I would ask anyway.


  • JoyceCanada
    JoyceCanada Member Posts: 134
    I really thought that after being given the NED diagnosis it would be over but I'm still playing mind games.

    I don't say anything to Hubby because be is so confident that "I'm cured".

    When I was diagnosed I was feeling great, I had lost weight (on purpose), my blood pressure etc was great and I was on top of the world because I had just retired and we were planning a trip....then BAM I was diagnosed with Stage III rectal Cancer 2 nodes involved.

    I do not trust my body it lied to me once and I'm always afraid that it will do it again!!

    I don't think this "mistrust" will ever go away I just try to put in into the back of my mind, but it is really difficult.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Doesn't sound stupid to me. I was ecstatic over the clear biopsy yesterday, but still couldn't sleep last night. Kept having nightmares of a doctor telling me I had more cancer. I hope it goes away, but can't prove it by me so far.
  • brn2ride
    brn2ride Member Posts: 32
    I am much newer at this than many of ya but here is my take.
    I went to the doctor wed and had blood work done and then scheduled a flexible sigmoioscopy for my quartely check up.
    It kind of lowered my spirits a little and after worrying and being blue I reminded myself that cancer may shorten life but I won't let it ruin what life I have left.
    I went out for a nice ride on my horse yesterday and when i got home I spoke with the doc about my blood work. he said it all looked great.
    I think keeping a positive outlook helps but it is in deed very hard not worry about what is next.
    I was never normal before cancer but in many ways coming to terms with my own mortality has made me appreciate things much more.
  • KathiM
    KathiM Member Posts: 8,028 Member
    This is why, even tho I was shouted down last time, I feel cancer is a terrorist. Even after the 'happy ending', you still look over your shoulder sometimes. My fix is to get mantra? "Cancer got 2 years of my life, it will get NO MORE!!!". Over and over I say this. Most of the time, it works. When it doesn't, well, I just find something to make me laugh...

    Hugs, Kathi
  • jams67
    jams67 Member Posts: 925 Member
    Most of us, I've been NED from stage iv for 2 1/2 yrs. now, know exactly what you mean. You stay positive, but that "gotcha" feeling is always lurking. My husband, Don, had to go in yesterday for a biopsy on a tumor in the mesentery. It is about a 2cm hard area. About 20 years ago, he had renal cancer and only has one kidney, but the doc doesn't think it is connected to that and thought it was a strange place for colon cancer to go first, no liver problems, so then it could be lymphoma or it could be benign. Does all of this uncertainty sound familiar? I'm trying to be positive, but we won't know anything until next week. I feel like the other shoe just fell, but it wasn't mine, it was his. I'm going to try and get out of the house today and do something that is totally unrelated to all of this. We both need an attitude adjustment today.
    Jo Ann
  • HowardJ
    HowardJ Member Posts: 474
    Great question. I'm at a little over 3 yrs now and was not comforted at my last onc visit when he said I was doing great. I feel good, exercise and hike, yet can't shake that "its lurking" feeling. Every little belly ache has me wondering. It's not that I think about it all the time, but the feeling never really goes away either. It seems, though, as time goes on the feeling is diminishing.

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  • shmurciakova
    shmurciakova Member Posts: 906 Member
    Sometimes I wonder when the worry will end! For me it's been 6 years since I was diagnosed and I have been NED for a while now. I still worry like crazy every time something comes up. Most recently I have developed this teeth clenching thing at night. My jaw hurts, I have pain in my face, and a weird pressure in and behind my ear on one side of my head. Of course I worry about worst case scenarios, but in my logical mind I know it is probably unrelated to "the beast", nonetheless I worry. Now I have my scans coming up and I am so sick of having these checkups because I have been going through this for 6 YEARS now and I don't want to do it anymore! I think I've had at least 20 CT scans. Wouldn't that be great to survive colon cancer only to get some other cancer because of all the CT scans!
    Nonetheless, I am only at the 3 1/2 year mark, so I have to (at least I think I have to) get at least one or two more. I guess I'll stop worrying when I stop having CT scans (at least I hope I will).

    Take care,
    Susan H.
  • jenhopesprays
    jenhopesprays Member Posts: 128 Member
    Normal? Its the quest of my life. Every movie I watch, newspaper I read screams "Your not normal. You have everyone's worst nightmare!"

    I strive to seize the day. For we all only have now. Enjoying each day (much easier to do when I'm not fried from chemo) helps to get me closer to feeling that life my life is not as tragic as it seems when the phobes come over me.

    This ACS group is also extremely helpful in feeling as if we journey on together.

    I will still Hope and I will still Pray!

  • jams67
    jams67 Member Posts: 925 Member
    unknown said:

    This comment has been removed by the Moderator

    Amen! You have expressed exactly the way I feel. I've really come to the acceptance of "Thy will be done." It makes life much more peaceful when you are not having to constantly be in control.
    Jo Ann
  • PGLGreg
    PGLGreg Member Posts: 731
    Obviously you're not the only one to be haunted, but on the other hand, this experience is not universal. After being treated for rectal cancer over two years ago, I feel perfectly normal and healthy. I hope you all don't get mad at me for having the bad taste to admit in the face of your tribulations that I'm not suffering. I'm careful about follow up exams, and I want to know how you all are coming, but I no longer think of cancer as having any particular relevance to me.
  • pamness
    pamness Member Posts: 524 Member
    I don't think it's weird. I am only 6 months out of treatment. While I don't think about it all the time, everytime I see an article or hear about a friend with cancer it all comes roaring back. I will be going for a CT in May and know I will be nervous waiting for the results. Most of time though, I figure, while the cancer could come back, I could also be hit by a bus. I refuse to let it interfere with getting on with things. I am still recovering from the fatigue, colon problems etc. But am coming to terms with having my mortality shoved right into my face. I also have a really good therapist and he has helped me put things into perspective.
  • cjf2006
    cjf2006 Member Posts: 83
    When I read about those of you that are declared NED, I am truly happy for you. And I can understand the struggle to feel normal ( I have heard or read that normal for cancer survivors is really a new normal, not the old one. I can live with that.) But this reply is for those of you who are not NED and may never be. We go through a different struggle that is not so easy to talk about, especially with healthy people. We may not even look ill outwardly, but inwardly we know. I want you to take heart. You can have joy in the midst of sorrow and life in the face of death. For me, it has only been because of my relationship with God, through faith in Jesus Christ. Even this weekend, when I stayed home again from church because of a concern about catching the flu, God sent blessings my way that filled my cup to overflowing. He is so much more real to me now than ever before.

    During my recent visit to my oncologist, we discussed my prognosis. I have survived since dx fro 17 months. She believes I'll beat the average for Stage 4 CC and make it past 2 years. But we both know that, without a miracle from God, I am not going to be disease free. My cancer was spread too far by the time it was even discovered. (I can relate to the comment about the body lying and not trusting it.) For some of you the "talk" about being NED is hard to take. Don't be ashamed of that. Cry when you want to. I hope I'm not breaking some unspoken rule about what to say and do in this forum. I'm not proselytizing, but I want to encourage those who struggle with never being "normal", to look towards God and seek to know His love. You'll find it in the Bible, especially the book of John.

    God bless you.