Strange feelings

Julie 44
Julie 44 Member Posts: 476 Member
edited March 2014 in Colorectal Cancer #1
I am one month NED!!!! I am so happy but........it is very strange..I should be smiling all the time and jumping for joy but I am not...I let myself go throught this whole ordeal and have gained some weight ,hairs a mess, clothes don't fit, additude is strange...I find myself more sad than happy...Everyone is coming up to me and giving me hugs and kisses but it feels fake to me... I can't explain it...I don't want hugs and kisses I want to be left alone..I want to feel like I did before the monster came into my life..but it has all changed...Has anyone had the same feelings about being NED????? I just don't get it!!!!! JULIE

Comments

  • tiny one
    tiny one Member Posts: 465 Member
    feelings aren't strange at all
    Most everyone after treatment feels like this. This is the hard part, maybe even harder than treatment. I still feel this way, deep inside there is the what if the monster comes back. Then there is the dealing with the body image and also the screenings. I am 2 years cancer free, I'm slowly doing more things that don't have anything to do with cancer. This helps. My cancer support group has been a big help to me. Do what you enjoy the most and tell people just how you feel. You're cancer free, don't let the cancer moster rob you of this. Take it one day at a time. You've been thru alot.
  • shoppergal
    shoppergal Member Posts: 118
    Dealing with NED
    After I was finished with my treatments I noticed that I wasn't feeling the way I thought I would.I thought I would feel happy and instead I was depressed. I spoke to my dr about it and he said that it was very normal to feel that way. When going thru surgery and treatment he told me you are so focused on getting thru treatment and getting well that you really aren't thinking about anything else. He told me I wasn't alone and alot of people get depressed,so I started on an antidepressant. They really made a big difference.

    I had lost alot of weight on chemo and had gone out and bought clothes that fit, now I have put back all the weight I lost but my old clothes didn't fit. So, I cleaned out my closet and drawers and went shopping!! Now I have new clothes that fit. Of course I bought some other things besides clothes, I needed some new shoes and some new bags to go with my new clothes. After doing that I felt better because I looked better, and my attitude got better.

    Treat yourself to having your hair done, it will also make a big difference. You say you let yourself go thru this whole ordeal,I believe that was your mistake. That's what has added to your feeling bad. Whenever I went to chemo, I noticed how many people had lost weight and were wearing clothes that were big. When my clothes started to get big, I didn't feel good about myself and that was why bought some clothes that fit better. I knew I would put the weight back on so I just bought a few things so that I wouldn't look so bad.

    Because I was working thru chemo, it was still important for me to take care of myself,so that was a big incentive for me. Take the time to take care of yourself now that you are NED. I really think that it will help with how you feel. You have to realize you won't feel the way you did before, this is a new you and you have to adjust to it. You have been thru a battle and won and thats wonderful. Be proud of yourself for getting thru,and do something for yourself that you enjoy,you deserve it! :-)

    Cogratulations on being NED!!!
  • KathiM
    KathiM Member Posts: 8,028 Member
    Yup....normal!
    I felt (and still occasionally feel) like I was holding my breath, waiting for the other shoe to drop. I accepted this feeling, and then took a deep breath, and went on with my life. Since I, as a survivor, know that our lives can be shortened, I reminded myself how precious my days are...

    It DOES get easier, as time goes on...but so far, the feelings for me haven't faded away completely.

    Hugs for NED!!! YEA!!!

    Hugs, Kathi
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    KathiM said:

    Yup....normal!
    I felt (and still occasionally feel) like I was holding my breath, waiting for the other shoe to drop. I accepted this feeling, and then took a deep breath, and went on with my life. Since I, as a survivor, know that our lives can be shortened, I reminded myself how precious my days are...

    It DOES get easier, as time goes on...but so far, the feelings for me haven't faded away completely.

    Hugs for NED!!! YEA!!!

    Hugs, Kathi

    Something else
    I think something else that adds to the depression we get after treatment is that all the attention we got is gone now...All the Drs and Nurses that tended to our every beck and call have moved on to others beck and call and we feel like the rug has been pulled out from under us. Like the ship has sailed and left us behind..Well, you have to realize that it has left us behind because we are ok now and they no longer have to be with us for us to continue on with our lives. Now, all the talk,gab,and smiles are gone but along with that all the pokes,prods, and most of the needles and sickness have left with it....So, don't look back, move ahead, but don't forget the ones still fighting the battle. Its here where we need to be right in the middle of it all for the newbies coming in. Where would we be if they weren't here for us. Its a freedom that we enjoy if only for a while, doesn't matter, its still freedom to me, and I will not look back and worry about it returning for if it does I'll kick its butt again cause I am more educated about what I need to do.....and I will not let it run my life, I will however let it better the way I live my life which to me was a blessing in disguise.......SMILE GIRL....
  • Julie 44
    Julie 44 Member Posts: 476 Member
    Buzzard said:

    Something else
    I think something else that adds to the depression we get after treatment is that all the attention we got is gone now...All the Drs and Nurses that tended to our every beck and call have moved on to others beck and call and we feel like the rug has been pulled out from under us. Like the ship has sailed and left us behind..Well, you have to realize that it has left us behind because we are ok now and they no longer have to be with us for us to continue on with our lives. Now, all the talk,gab,and smiles are gone but along with that all the pokes,prods, and most of the needles and sickness have left with it....So, don't look back, move ahead, but don't forget the ones still fighting the battle. Its here where we need to be right in the middle of it all for the newbies coming in. Where would we be if they weren't here for us. Its a freedom that we enjoy if only for a while, doesn't matter, its still freedom to me, and I will not look back and worry about it returning for if it does I'll kick its butt again cause I am more educated about what I need to do.....and I will not let it run my life, I will however let it better the way I live my life which to me was a blessing in disguise.......SMILE GIRL....

    Thanks Everyone
    Thank you for your advice everyone...It still feels good to know you are not alone even if you are NED or just starting the battle....If it wasn't for everyone here I don't know what I would do...I am going to start living my New life...Treat myself to several things and move on..I will look forward only Thanks again JULIE
  • ron50
    ron50 Member Posts: 1,723 Member
    Julie 44 said:

    Thanks Everyone
    Thank you for your advice everyone...It still feels good to know you are not alone even if you are NED or just starting the battle....If it wasn't for everyone here I don't know what I would do...I am going to start living my New life...Treat myself to several things and move on..I will look forward only Thanks again JULIE

    Good idea Julie ,the
    Good idea Julie ,the biggest mistake a cancer survivor can make is to forget to live their life, to stop taking risks,waiting to get the cured word before resuming life. I've made the comment before but surviving survival is not easy. It is not about being sick and getting better It is about getting your life taken a way and then sort of given back but with conditions. You will undoubtedly hear the terms "you are doing fine but you are not out of the woods yet". And you will have the tests for years. The ones where you are sure you are fine but as they come closer you are just as sure you are doomed. They go with the territory and your new life. They have an impact on your mind but really they mean nothing. You are alive . No one can see the future. I have lived as hard and as clean as I could since cancer. I have worked hard ,not for the future,but to do the things that are important to me.
    The worst part of life is that there are so many things that want to take it away from you. We fret about cancer but there are a whole book full of diseases just waiting in the shadows. I have survived eleven and a half years post cancer (st3 into 6 lymph glands).
    Currently I am facing incurable kidney disease,auto-immune arthritis and poly or short fibre neuropathy. I take four blood pressure tablets for the kidneys,methotrexate for the arthritis and lyrica for the neuropathy. All of these diseases have been more dbilitating than the cancer was. I am glad that I was able to what I enjoyed while I could. There are certainly no guarantees in life so "just do it", my best wishes for a long ,healthy and ca free future,Ron.
  • lesvanb
    lesvanb Member Posts: 905
    Not weird at all
    I also have similar feelings to you Julie, now three weeks from my last chemo (I'm also NED after diagnosis of stage 4 rectal with one met to liver). I feel more depressed, more scared,(yah NED until the next scan; what about all these side effects from treatment !?! those pins and needles in the soles of my feet?) and then -moving to the other side- more grateful for everything in life, more intrigued by the little things like watching a pair of cranes walk with their young fuzzy ones through our fields tipping over cow pies, more content. I had an insight the other day, after another comment about how brave and strong I was etc etc. when I didn't feel very brave and strong; I felt a fake. My insight was that when I'm not feeling connected to my support system, not connected with all the things in my life that bring up gratefulness, then I do feel alone and small and certainly can't muster all I need to get over the next hurdle. I also remember to grieve the change, the losses, the passage, and to mark that change. I'm having a small gathering with all the local folks in my support group on June 7 to say Thanks!. To those who are in my more intimate circle, it's my "I ain't dead yet" party, said with a wide smile, and leading into the next comment "I'm also burning my underwear! No more skid marks!"

    Leslie
  • Julie 44
    Julie 44 Member Posts: 476 Member
    ron50 said:

    Good idea Julie ,the
    Good idea Julie ,the biggest mistake a cancer survivor can make is to forget to live their life, to stop taking risks,waiting to get the cured word before resuming life. I've made the comment before but surviving survival is not easy. It is not about being sick and getting better It is about getting your life taken a way and then sort of given back but with conditions. You will undoubtedly hear the terms "you are doing fine but you are not out of the woods yet". And you will have the tests for years. The ones where you are sure you are fine but as they come closer you are just as sure you are doomed. They go with the territory and your new life. They have an impact on your mind but really they mean nothing. You are alive . No one can see the future. I have lived as hard and as clean as I could since cancer. I have worked hard ,not for the future,but to do the things that are important to me.
    The worst part of life is that there are so many things that want to take it away from you. We fret about cancer but there are a whole book full of diseases just waiting in the shadows. I have survived eleven and a half years post cancer (st3 into 6 lymph glands).
    Currently I am facing incurable kidney disease,auto-immune arthritis and poly or short fibre neuropathy. I take four blood pressure tablets for the kidneys,methotrexate for the arthritis and lyrica for the neuropathy. All of these diseases have been more dbilitating than the cancer was. I am glad that I was able to what I enjoyed while I could. There are certainly no guarantees in life so "just do it", my best wishes for a long ,healthy and ca free future,Ron.

    Hey Ron
    I am so sorry that you beat the cancer monster only to get more monsters...Your right to JUST DO IT...and enjoy every day you have with your family....It does have alot of impact on your mind and your right you can't see the future so live it live it live!!!! I wish you the best of luck fighting all these monsters..You are very strong and know you will do what you have to...I will keep you in my prayers.......JULIE
  • krystle singer
    krystle singer Member Posts: 108
    KathiM said:

    Yup....normal!
    I felt (and still occasionally feel) like I was holding my breath, waiting for the other shoe to drop. I accepted this feeling, and then took a deep breath, and went on with my life. Since I, as a survivor, know that our lives can be shortened, I reminded myself how precious my days are...

    It DOES get easier, as time goes on...but so far, the feelings for me haven't faded away completely.

    Hugs for NED!!! YEA!!!

    Hugs, Kathi

    Still shaky
    I am nearly 3 months post surgery and still wake up shaking many mornings. I am about to undergo my third colonoscopy..the first found the cancer tumor, the second found another growth which was only partly removable and now this one is to remove the last of the second growth! It feels as if all this testing and probing will never end. And I still have to have a CT scan of my kidneys in August. I know I am far luckier, so far, than many, many people because I didn't need chemo, but the nightmares keep coming anyway.
    By the way...what is NED? I guess I've been away too long.
    Krystle singer
  • robinvan
    robinvan Member Posts: 1,012
    The Emotional Aftermath
    Hi Julie...

    You are definitely NOT alone! This experience is so common amongst cancer survivors that Susan Nessim devotes a whole chapter to it in her book “CanSurvive: Reclaiming Your Life After Cancer”.

    Here's a shortened piece of I wrote in my cancer journal a couple of years ago...

    One of the experiences of many cancer survivors is the flood of emotions that come after treatment is finished. These emotions cover the whole gamut from relief, joy, and elation, to anxiety, fear, anger, and sadness... It seems that when we are undergoing treatment, much of our focus and energy is directed towards coping with the treatment regime and side-effects. When treatment is done some of the emotional stuff we’ve been unconsciously repressing surfaces and needs to be dealt with. I guess it is kind of like a delayed stress reaction to a traumatic event in our lives.

    This experience hit me fairly hard after my first diagnosis and treatment. I had very positive results from my surgery and chemo and there was no evidence of cancer when it was all through. Wow! I felt such relief, gratitude and gladness. It was so wonderful to share this time with the family and friends that supported us through the difficult journey.

    And yet, at the same time, I was affected by more "afflictive" emotions as well. I was worried about what the future would bring. Would I have a recurrence? What then? I was particularly upset about being sidelined for so long in my work life and concerned about the implications for my job. I was on disability for a whole year and it took its toll financially (there’s almost always financial concerns for cancer patients!).

    I was very easily moved to tears during this time, tears of relief, gratitude, and joy as well as tears of grief, sadness, and loss. I took an extended period of time off after treatment to recover and enjoy some holiday time. Gradually my emotional climate found a place of equilibrium. With each new scan showing “no evidence of cancer” my future horizon began to open up again. And life went on…

    TTFN… Rob; in Vancouver

    “The great metaphors from all spiritual traditions — grace, liberation, being born again, awakening from illusion — testify that it is possible to transcend the conditioning of my past and do a new thing.” Sam Keen
  • Julie 44
    Julie 44 Member Posts: 476 Member
    robinvan said:

    The Emotional Aftermath
    Hi Julie...

    You are definitely NOT alone! This experience is so common amongst cancer survivors that Susan Nessim devotes a whole chapter to it in her book “CanSurvive: Reclaiming Your Life After Cancer”.

    Here's a shortened piece of I wrote in my cancer journal a couple of years ago...

    One of the experiences of many cancer survivors is the flood of emotions that come after treatment is finished. These emotions cover the whole gamut from relief, joy, and elation, to anxiety, fear, anger, and sadness... It seems that when we are undergoing treatment, much of our focus and energy is directed towards coping with the treatment regime and side-effects. When treatment is done some of the emotional stuff we’ve been unconsciously repressing surfaces and needs to be dealt with. I guess it is kind of like a delayed stress reaction to a traumatic event in our lives.

    This experience hit me fairly hard after my first diagnosis and treatment. I had very positive results from my surgery and chemo and there was no evidence of cancer when it was all through. Wow! I felt such relief, gratitude and gladness. It was so wonderful to share this time with the family and friends that supported us through the difficult journey.

    And yet, at the same time, I was affected by more "afflictive" emotions as well. I was worried about what the future would bring. Would I have a recurrence? What then? I was particularly upset about being sidelined for so long in my work life and concerned about the implications for my job. I was on disability for a whole year and it took its toll financially (there’s almost always financial concerns for cancer patients!).

    I was very easily moved to tears during this time, tears of relief, gratitude, and joy as well as tears of grief, sadness, and loss. I took an extended period of time off after treatment to recover and enjoy some holiday time. Gradually my emotional climate found a place of equilibrium. With each new scan showing “no evidence of cancer” my future horizon began to open up again. And life went on…

    TTFN… Rob; in Vancouver

    “The great metaphors from all spiritual traditions — grace, liberation, being born again, awakening from illusion — testify that it is possible to transcend the conditioning of my past and do a new thing.” Sam Keen

    Hit the nail on the head
    Rob,
    Wow its like you read my mind about my feeings toward being NED....It is really a new normal..I will get the book you quoted from it sounds interesting...I do need to find my place of equilibrium. Hopefully it will come with time too...

    Thanks everyone it is nice to know that I am normal so to speak...lol lol
    I love this board it is so comforting to have so many people who know what you are going through and where you have been....JULIE
  • impactzone
    impactzone Member Posts: 551 Member
    Yes. As one who has been NED
    Yes. As one who has been NED and then had it come back...I feel the same way a lot. You have been to war and only people who have been there understand. It is not right, fair or healthy but those feelings are so common. Mentally for me, I try to make the small talk, appreciate their help and love and try to find things that make me truly happy. My dogs, my family, surfing, doing what I want and not just waht is expected. It is at times selfish sounding but it is healthy for me. You are a survivor and congrats for that.
    Chip
  • Buzzard
    Buzzard Member Posts: 3,043 Member

    Yes. As one who has been NED
    Yes. As one who has been NED and then had it come back...I feel the same way a lot. You have been to war and only people who have been there understand. It is not right, fair or healthy but those feelings are so common. Mentally for me, I try to make the small talk, appreciate their help and love and try to find things that make me truly happy. My dogs, my family, surfing, doing what I want and not just waht is expected. It is at times selfish sounding but it is healthy for me. You are a survivor and congrats for that.
    Chip

    Krystle Singer........
    To answer your question NED is short for "No Evidence of Disease"

    You may hear the term NEAD...Short for "No Evidence of Active Disease"
  • lizzydavis
    lizzydavis Member Posts: 893
    Sharing a message...
    I was sent this message and wanted to share with you. -------------

    There is one call you must make today. Call back your power. Nothing outside you is more important than what is inside you. Just whistle for it and it will return.
  • krystle singer
    krystle singer Member Posts: 108
    Buzzard said:

    Krystle Singer........
    To answer your question NED is short for "No Evidence of Disease"

    You may hear the term NEAD...Short for "No Evidence of Active Disease"

    Thanks!
    I really hadn't heard or seen NED. I still have tests to go so don't know until after August whether I am NED.
    Appreciate the answer from you.
  • krystle singer
    krystle singer Member Posts: 108
    KathiM said:

    Yup....normal!
    I felt (and still occasionally feel) like I was holding my breath, waiting for the other shoe to drop. I accepted this feeling, and then took a deep breath, and went on with my life. Since I, as a survivor, know that our lives can be shortened, I reminded myself how precious my days are...

    It DOES get easier, as time goes on...but so far, the feelings for me haven't faded away completely.

    Hugs for NED!!! YEA!!!

    Hugs, Kathi

    How many shoes are thyere!?
    KathiM:
    I think I must have a demon with about thirty feet, all shod. My oncologist says the latest biopsy is beniegn and I only have to have the rest of the "bed" of the lesion removed this Friday. How I wish I could believe that. But I also have CT scan of my kidneys scheduled for August. Is there another shoe ready to fall? Most of the time I just have to get on with life and not show how worried I am, but inside I am still scared. Maybe it will get easier as time goes by, I certainy hope so. It is comforting to know I'm not the only one holding my breath once in a while!

    Thanks!
    Krystle Singer
  • dixchi
    dixchi Member Posts: 431
    War
    Just read all the posts on this and Chip struck a note with me....
    it is sort of like being sent to Iraq, serving your time, coming
    home, only to be sent back again.....at least it seems that way...I'm
    not a soldier....but you are so grateful you made it through
    the first war only to realize you have to face the guns again...
    how many times can you go through this and still be lucky....
    guess like soldiers, we say to ourselves...as many times as it
    takes....we won't surrender....we believe in our cause.
    Barbara
  • polarprincess
    polarprincess Member Posts: 202
    interesting
    you know it is interesting.. i have always been a person very prone to depression and stress and anxiety- after my diagnosis in the hospital i had to take an anxiety pill every morning because i felt like i couldn't breathe..so when chemo was done i expected to feel that way and my doctor told me most people do go through a depression when chemo is finished but i finished on april 20th and i have felt nothing but happy..almsot immediately i went back to work and barely even think about the cancer anymore. I have severe rectal pain 9 months post radiation, have no sex life anymore due to the damage and will probably end up divorced because of it..had to put off my long dreamed about house addition because of the medical bill, and pretty much am getting pushed out of my job of 25 years..and yet i am still happy..maybe that is why cancer happened to me.. to change my outlook on life.. i am not sure but hopefully the feeling will pass for you and you will be able to feel some sense of normalcy again...although i don't think any of us will ever experience complete normalcy again.. it is always in the back of my mind and of course when scan times come i will be a basketcase..