I feel guilty

kmcrae77
kmcrae77 Member Posts: 17
in Head and Neck Cancer #1

So my name is Kylee, I am 21, and I am a survivor of laryngeal cancer. 

No one in my life seems to understand who I am now, hell (pardon the language), I don't even know who I am anymore. However I grew up fast because of it all. 

I feel guilty because I feel like my cancer was so minimal compared to others, I only needed two surgeries to get rid of mine, but I lost something much more important to me. Words don't come to me to try and get my husband, family, and friends to understand. 

I feel guilty for not feeling like I am being thankful enough, I am thankful...but I miss the old me and don't like the new me. 

I know I need to embrace who I am now, but it is hard! 

Has anyone else struggled with liking the post cancer self they have become? 

How can I learn how to cope? How do I find out who I am again?

I can feel the depression creeping along with me, trying to make me stuggle, trying to pull me down, and I know on my bad days I let it get the best of me, but I can see it harming those around me. My husband just wants to fix me and I love him, but only I can do that. 

Anyways, I feel like I am rambling, if anyone has some insight or advice that would be phenomenol. 

 

Hope your day is blessed

Kylee

Comments

  • cureitall66
    cureitall66 Member Posts: 913
    #2
    Sorry...double post

    Sorry for the duplication

  • cureitall66
    cureitall66 Member Posts: 913
    #3
    Hang in there....

    Kylee,

    What you're feeling is perfectly normal. I am not the cancer survior here, I was the caregiver. But, it can be a challenge for both you and your husband getting use to the.... what we call, "the new normal". You both have just gone through a life altering experience.

    The only advice I can give you is first, you are not alone!!! Everyone on this board has had the same feelings you have. Your feelings of not knowing who you are and wanting to be who you were before is not unusual. Second, please take one day at at time. Of course you will think of the cancer from time to time, but as days and years go by it will get better. Will you ever forget it? No. I'd be foolish to tell you that. But, don't let it consume you. Cancer doesn't deserve that. Third, talk all you want to people about this battle you just went through. Share your feelings and don't hold it inside. You may even feel better helping someone else that is starting to go through this battle. 

    My loved one has been 2 yrs cancer free and still has challenges from time to time. He doesn't talk a whole lot about cancer, but when he's in the mood to, he will. He had a good friend of his recently get diagnosed with the same cancer and has found a lot of gratitude in helping him along. It has built more of a bond between them. We do have a new normal in our relationship, and at first it was a little tough not knowing how to react about certain conversations about life, but somehow we are adapting. We talk about the future and all the plans we have and what we want to do. He keeps very busy with work and various activites and I think that helps keep his mind off of the cancer.

    I want to encourage you to come to this board anytime and talk whether you need something or you want to help someone else. Maybe you will find you don't care to be on here much because of the reminder. Either way, it's ok. You do what you feel is on your mind for the day. Please talk your feelings out to your husband, friends, and family. Let them help you through this. If it becomes to much, then consider seeing a counselor or even talk to your oncologist about prescribing something to ease your mind little and relax you.

    Life does get better! One day at a time.....

    God Bless,

    ~Cureitall 

  • kmcrae77
    kmcrae77 Member Posts: 17
    #4
    cureitall66 said:

    Sorry...double post

    Sorry for the duplication

    Thank you

    Thank you,

    I just feel like I have become this burden to him, you know? Like I am dragging him down with me and I hate it.

    He is not one to really talk about emotions, which is understandable for him being a guy but I have thought about looking into talking to a counselor. Just to have someone who can shoot ideas back at me

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #5
    goodness

    Kylee, first let me say I am a caregiver, not a survivor.  

    Please don't compare your experience with that of anyone else.  Everyone's is different.  Two surgeries does not sound easy to me, though.

    Other survivors will come forward.  For now, please remember you are living a new normal.  Your life experiences make up who you are and this definitely one of them.

    A counselor is an excellent idea.

    Hugs.

  • wmc
    wmc Member Posts: 1,804
    #6
    Yes we do understand your feeling.

    I do understand your feelings as I had the same ones too. I only had surgery and no chemo or radiation like so many did. They had to take my larynx and did a neck dissection on both sides and took a total of 86 glands, but I still felt guilty. You should never feel guilty, just lucky. You are so young to go through this and you sang as well. When I sang my family "very nicely" asked me to stop. Singing was so much of who you thought you were, but you are so much more then that. You will need time to fully understand and embrace this change. The sooner you accept your new second chance on life you will feel so much better, it can take time. Just be proud of who you are, and what you still have and all of your long life ahead of you with your husband. So when you wake up tomorrow you need to say, I just beat cancer, I can accomplish anything I want. It took me two months working everyday and all day long to be able to whistle again. Then I was told someone with a laryngectomee can't whistle. Glad they never told me that before I did it. I thought she was going to fall over when I whistled then I blew up a balloon and she had to film that. She said it had never been done. Maybe you won't be able to sing the same, but your love of music is still there and you can write the songs. The world is yours, do what you want and never let someone say you can't.

    Bill

  • cureitall66
    cureitall66 Member Posts: 913
    #7
    kmcrae77 said:

    Thank you

    Thank you,

    I just feel like I have become this burden to him, you know? Like I am dragging him down with me and I hate it.

    He is not one to really talk about emotions, which is understandable for him being a guy but I have thought about looking into talking to a counselor. Just to have someone who can shoot ideas back at me

    No burden...

    Don't think of yourself as a burden, you're not. He simply may not know how to handle it or how to talk to you about any of it. Yes, he's a guy and they normally like to get things back to normal quick so they don't have to deal with emotions. (sorry guys...that's how we girls see it...LOL). Don't be afraid to tell him the way you feel. The more you share with him, the greater he may understand what you are going through or are feeling. Communication is so important with this....do share with him. 

    I think you may feel better talking to a counselor...and hubby may want to talk to one at some point also. I'm sure it could be good for both of you. Hang in there girl, you will get through this. Take walks, listen to music, talk to people...you will get some of that normal back, most likely not all. You will build some new normal with parts of your life, and that's ok. Try to accept it by replacing the old with new.   

    ~C

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #8
    kylee, you have nothing to

    kylee, you have nothing to feel guilty about.  not liking who we are after cancer is quite normal.  it does not mean we are not grateful.  and with you being so young, i think you are doing great!  i went through terrible depression after my surgery 2/28/12.  i literally spent months in my bedroom, not socializing with anyone including family.  having cancer is very hard to accept and all the changes and side effects are just as hard to accept.  you are right though, only people who have walked this road truly understand what one means when we say we don't know ourselves any more.  as much as they love us and want to understand it is imposible.  it is hard on our family also.  like your hubby wanting to "fix" you, mine was the same way and there were many days he cried for me.  unfortunately, like you said, only YOU can fix you.  don't be too hard on yourself and expect it to happen overnight.  you must allow yourself time and go through the different phases.  you may need to talk to your doctor about antidepressants.  I take them daily and that is what finally got me out of my bedroom.  i'm 3 yrs out since my laryngectomy and honestly it took me almost the entire 3 years to learn to want to live again.  so, please, DO NOT FEEL GUILTY!  you've done nothing to feel that way.  talk to your doc about your depression before it gets worse.  each day try to tell yourself something you like about YOU and eventually, you will learn to love the "new" you.  btw, I also had larynx cancer and I'm now a laryngectomee.  i will be praying for you to fully recover from this which included finding yourself again.

    God bless you and your family,

    dj

  • MrsBD
    MrsBD Member Posts: 615 Member
    #9
    Feelings

    Hi Kylee.

    I don't think any of your feelings are abnormal.  Some of us will never know why we got this disease; it can be a susceptibility or a sudden genetic mutation, but we don't know.  "Why me?" is a question without an answer. So is thinking about why I am seemingly getting off easy compared to others with the same disease. We just will never know. It was not in our hands, so feeling guilty is taking blame for something that was never our fault.

    You are very young, so I don't think you've been married a long time. Those of us with a little more experience can tell you that marriage has high points and low for each partner. Right now you are feeling you are dragging your husband down. There will be times when you will be the stronger partner. My husband was there for me during cancer; I was there during his knee surgery. It's what we do. You husband has had to think about what it would be like to lose you and has grown to appreciate you more.

    Life is fluid. You may think about what you've lost when you are actually gaining something. Many people talk about having a stronger marriage, or knowing they can count on their friends, or a greater appreciation of the gift of each day. All of this is still so fresh for you. A part of you will always miss what you had, but you will get comfortable with your new self. 

    If you are a person of faith, you could pray for acceptance of your new self and guidance for finding your new purpose in life. You could talk to a counselor to help you find some direction. There are some great books about people who have faced life-changing adversity. Perhaps reading how they coped would give you ideas for managing your own loss. Joni Eareckson Tada, Dana Reeve (Christopher's wife), and Stephen Hawking come to mind.

    Don't ever feel alone! You are in my prayers every day, Kylee.

    Beth

     

     

     

  • yensid683
    yensid683 Member Posts: 349
    #10
    Guilt is very common

    it is easy to say but much more difficult to live with the feelings of guilt as a survivor.  I consider myself extremely fortunate.  I'm three years past diagnosis and have had a constant string of NED evaluations from my doctors since March of 2013.  I do have challenges from the side effects of treament (SCC, BOT, STG IVa, induction chemo, 7 weeks of chemo/rads and two neck dissections) but I embrace it as the "new me".

    James Clavell wrote a novel about feudal Japan, "Shogun" and a section of the book deals with one of the principal characters (Englishman John Blackthorne) going freely out to meet death through 'seppuku' and the aspect of being totally reborn after his willing attempt was stopped.  The passage resonates with me as I too felt the guilt of survival, the challenges of trying to talk about it and my feelings with my wife, and adapting to the new reality that is my life after cancer. 

    I do believe that I was reborn through the harrowing regimine of treatments (they only tried to kill me 3 times) and that my life is richer, sweeter and more than what it was pre-cancer. 

    I realize that the changes at a younger age seem very daunting, depressing and the feeling that you've 'lost' who was you is very real, but remember that you are still in there, you are still the person you were before you found out that you had cancer.  Mourn the loss of things, but don't let it define who you are.  Embrace the new you. 

    We've all felt survivors guilt in one form or another.  I've been on this forum for a number of years and watched the struggles of others who didn't survive and have felt those pangs of guilt that say 'why me, why am I still here and so many others aren't?'   It is very normal to feel it, it is normal to feel the loss of self and it is a struggle to find the new you.

    I have found that so many people want to help but they have no real clue on how to talk with us, how to help us.  Family, spouses, siblings, children, close and distant friends are often at a loss to really speak to us of our disease and what it was like to confront it, fight it and win victories over it.  They want to help us but so often don't know how, so they avoid it/us.

    I had a friend who passed away earlier this year from glioblastoma, and I found it hard to talk with him and his wife, to try to keep her spirits up and positive, to try to console her when it became plain that he was not going to survive.  I felt an incredible amount of guilt then, and still do to some extent, but I found in that simple passage from Shogun that I have been reborn, I have been given a new life.  Sure, I have limitations, I will have them forever.  I used to hate them but now I hold onto them as my 'medals of honor' that constantly remind me that it tried to kill me and ultimately failed!

    I agree with other posters here that you and your husband would very well benefit from counselling, coming to grips with that which could have killed us is always a challenge.

    I don't know who the original author of this phrase is, but "what doesn't kill us makes us stronger".    I also have heard a follow up comment to it.

    If what doesn't kills us makes us stronger, than I should be able to bench press a bus!

     

    Take heart Miss Kylee, you are still in there, you are still you (as Josh Groban's song says ..."after all, you're still you"

  • Hondo
    Hondo Member Posts: 6,636 Member
    #11
    Hi Kylee

     

    You are going through a normal part of healing process; life after cancer is all about making adjustments to your new normal and fitting back into a square world. For some of us it is very easy but for others is can become very hard and confusing at times and no one will understand except someone who has been there themselves. What I did was to focus my life on doing something, I set goals everyday for myself, easy ones at first then little by little I built them back up to my new normal; It takes getting use to but you can make it. I also have a very wonderful caretaker Wife of 41 years who was always by my side through both times; she encouraged me all the way. When I was down and could not get up she held me up until the storm in my life passed. I was also able to hold on because of my faith in God and through a lot of praying.

     

    Tim Hondo      

  • Goyca
    Goyca Member Posts: 220
    #12
    One day at a time Kyle. I'm

    One day at a time Kyle. I'm going through the same thing, I know its annoying. But try find something to get busy with and get ur mind of cancer. I suggest u write down all ur negative thoughts before u sleep on a paper and once done throw the paper away :) its a nice trick to get out the negative stuff from ur head ... Don't feel guilty , I felt it too. But its our right to be upset bcz of what happened. But don't stop there try to move on with ur new you ... No matter what changes this experience did but at the end its You heart & soul , the changes sometimes lead to better things , try to remember no matter.what its still u and ur family loves u no matter what ... I suggest let ur husband in maybe he'll help u through this . Keep smiling Kyle we have a lot of good days yet to come

    sending u hugs.

    goyca

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