Ready to pull my hair out

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  • VanessaSLO
    VanessaSLO Member Posts: 283
    #22
    VivianLee5689 said:

    Slim chance

    Well David keeps telling me that the doctor had told us he had a slim chance of making it to next Christmas.  He told us initially the chance of David making it to transplant was slim.  Maybe he was trying to tell us, but we were just grasping for a chance at the miracle.  It is hard to believe that my husband isn't going to live much longer.  I hope if this is the case that God doesn't allow him to suffer long.  I know he loves me and probably enjoys spending so much time with me, but his quality of life sucks right now.  We aren't able to go into public with the exception of going to treatments and doctor's appointments.  He isn't able to shower every day because he knows it is such a challenge to get him ready to get in the shower.  He finds it difficult to even brush his teeth daily.  Not being able to use the one leg and being weak from so much weight loss makes everything harder.  He misses being able to sleep with me and I am sure he wishes we could kiss just as I do.  His relationship with God is so strong and I don't know how he would cope without that.  I appreciate all my friends here who help me with my faith and make me feel someone cares about what is happening to me as well.  I find myself upset sometimes that it doesn't seem like people care about me.  They all worry about David and yes he is dying, but I feel like a piece of me is dying too.

    Yes, we care Vivian...

    We care for you! I often think how could we all make this easier for you. If this is true that David has a slim chance to win this desease then we all have to focus mostly on you. Because it is true that YOU are the one who stays in the end. YOU will have to go on. YOU will have to continue to live! But trust me on one thing - you WILL live again. You WILL feel free again. You're focusing completely on David now and on his needs. You're doing everything to make HIM feel better. You're using your entire strength exclusively for him. It is exhausting, because no matter how much you love him and no matter how much you're grasping for at least a slim chance or a miracle, it is taking energy away from you. No matter how weird this might sound, you will feel relieved when all this is over. You don't want him to hurt, but you don't want to hurt either. Cancer is a terrible desease when you know there is not much chance for living...When my grandmother found our about her terminal stage of cancer it was terrible for all of us. It took a whole year before she passed away but the feeling was like we were all dying slowly. Our minds were exhausted, dead in times.... When she passed, we had no tears anymore. I felt that weird freedom and relief that she is in a better place without pain now! No matter how much we missed her, it was better for all of us that it just ended. Being in this twilight zone is no walk in the park. It is horrible torture for mind and body. So, Vivian, please forgive me on my long posts, but please do know that I wish strongly for you to be strong thru all this!

  • NJShore
    NJShore Member Posts: 429 Member
    #23
    VivianLee5689 said:

    Sorry I just feel so lonely

    It is so stressful.  This is the only place people still respond even when there isn't good news.  After my post on caring bridge I can hear the crickets.  When I post feel good things I get plenty of posts.  People want to cheer and ignore the pain I feel.  Now when I share something that is so devestating to me I get nothing.  Yes I know they don't know what to say, but I can't always be encouraging. I don't have the strength.

    Caring bridge..

    Vivian,

    i am so sorry that you keep getting thrown these curve balls. 

    And I get you on the caring bridge responses.. how many times have you written, and then someone calls you, tells you they love the site, tells you they read it everyday, and then asks you questions that are clearly answered in a recent post...

    I have learned, they hear what they want to hear.. And people who have not gone through what we have, don't necessarily get it and  are in big denial... I think more of it as a journal for me... If they get something good out of it great, but I have the data... Dated.. If they don't read it or listen to what I am saying.. Me repeating it isn't going to help Dan, I don't. I find excuses to hang up the phone.

    oh and I love the ones who look for information that's not on the website... So that they can be a key source of info for others..  People are good at the core.. But we all carry baggage.. And this just isn't a good time to see it.

    hope you start getting some good breaks.. You so deserve it.

    Kari

  • ToBeGolden
    ToBeGolden Member Posts: 695
    #24
    VivianLee5689 said:

    Slim chance

    Well David keeps telling me that the doctor had told us he had a slim chance of making it to next Christmas.  He told us initially the chance of David making it to transplant was slim.  Maybe he was trying to tell us, but we were just grasping for a chance at the miracle.  It is hard to believe that my husband isn't going to live much longer.  I hope if this is the case that God doesn't allow him to suffer long.  I know he loves me and probably enjoys spending so much time with me, but his quality of life sucks right now.  We aren't able to go into public with the exception of going to treatments and doctor's appointments.  He isn't able to shower every day because he knows it is such a challenge to get him ready to get in the shower.  He finds it difficult to even brush his teeth daily.  Not being able to use the one leg and being weak from so much weight loss makes everything harder.  He misses being able to sleep with me and I am sure he wishes we could kiss just as I do.  His relationship with God is so strong and I don't know how he would cope without that.  I appreciate all my friends here who help me with my faith and make me feel someone cares about what is happening to me as well.  I find myself upset sometimes that it doesn't seem like people care about me.  They all worry about David and yes he is dying, but I feel like a piece of me is dying too.

    Emotions

    It is normal for you to feel down, depressed: whatever term you want to apply. There is no point for feeling guilty about negative emotions. Embrace your negative emotions, there are also real. Then I pray that there will still be time to let a few positive emotions in. The positive and negative can exist side by side. Strange. Rick.

  • cureitall66
    cureitall66 Member Posts: 913
    #25
    Never Alone...

    Vivian,

    I'm sorry that you and David are having a tough time and I know how stressful this is for you. You feel helpless at times, I know. But, you are never alone even if there is just you and David. God is always beside you because you hold your faith. We all may be many miles away from you, but there isn't a day we don't think about what you and David are going through and how much we wish we could be there to help you through this. I know you are a strong person...and I know you can get through this. Try not to look ahead so far and look at what is before you right now....Love what you have.

    You know you can email me anytime and vent all you want.....I will be there to take it and help you the best I can.

    God Bless,

    Cris

     

  • NJShore
    NJShore Member Posts: 429 Member
    #26
    Just read your caringbridge!

    Vivian, 

    so glad the sun came out! You are way ahead of me today, I am still into washing bedding .. Seems while we were in Philly for 6 weeks, my almost 30somethings had a holiday here at home.. And every bed was a mess! So I started at the mattresses and its spring cleaning time.

    But you're ready to watch the game too!  

    And even on a good day, my thoughts are with you, my prayers, and i get it.. You are not alone, you are in all our hearts too.. And we get you.

    go enjoy the sunny day with your handsome groom..:)

    Kari

    ps - you are making me want to toss out the coke in my fridge!

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