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  • #20480
    Mrs_Ras
    Participant

    What can you do when the person physically affected by the melanoma doesn’t understand that just because the person caring for them doesn’t have it doesn’t mean they aren’t affected?!

    #55480
    lunchlady
    Participant

    It really can be frustrating at times! I can understand even tho my situation may be very different than yours. My husband (the patient) makes comments in jest a lot about maybe not having much longer to deal with the stress that he is under. Never any mention of the stress that I am under thinking of the possibity (probability actually) of being left to raise 3 teenage boys and a girl by myself. He doesn’t really complain much but he doesn’t want to talk about it either. He “seems” to be handling his emotions so well that I don’t want to force the issue. I just try to take it one day at a time and pray that he will be willing to talk when the talk needs to happen. Hang in there. This is a good place to find support and vent if/when needed.

    #55481
    Mrs_Ras
    Participant

    Thanks for the reply. I think frustrated is an understatement sometimes.

    Luckily Gary does talk about what’s going on. Unfortunately, it gets him more depressed when he does. But he also knows that talking about it helps both of us.

    Mine makes the same statements about not being around much longer. I just tell him he’s got to mellow down before God will be ready for him, he’s too bullheaded right now!

    We have two kids left at home, ages 14 and 17, the other four are grown and two of them have kids of their own. I’m hanging in the best I know how. He’s my soul mate and it’s been so hard seeing him go thru this and me not be able to physically help him get better.

    Valerie

    #55482
    Anonymous
    Guest

    Valerie:

    When typing a response to someone who has children at home while in the heat of battle with this horrid disease, I fell the tears welling up. My heart goes out to you. I pray for calm, peace and grace for you.

    You are absolutely right! Even though you don’t have the disease in your body, you are suffering symptoms from it. Us care givers have physical and emotional symptoms and we can be, at times, imobilized by them. And that’s normal. Don’t let anybody (especially the internal voices 😈 ) tell you otherwise. It’s a sign of just how deeply connected you are with your husband.

    You DO have symptoms associated with your husbands disease and, like him, DESERVE and REQUIRE care and attention to help treat the disease and relieve symptoms.

    Period.

    Please post early and often here. We will help you. That’s part of the care and attention thing. :)

    Jeff

    #55483
    Catherine Poole
    Keymaster

    I couldn’t say it any better Jeff. Thanks for sharing and helping Valerie. And please do post often and express your fears, hopes and anything you’d like to share. This is a safe place for you.

    #55484
    Mrs_Ras
    Participant

    Jeff and Catherine,

    Thank you so much for the replies. Thank you for the prayers, Jeff.

    Right now we are both frustrated with the situation. Two weeks ago the oncologists’ medical assistant was supposed to schedule a physical therapy appointment for Gary’s lymphedema. Two weeks later and still no appointment. And now the onc wants Gary to up his Zelboraf back to 8 pills a day. He had massive side effects on 8 pills. All he could manage was going from his recliner to the bed. I feel, well honestly, I am pissed. He used to be so active that I had to tell him to sit down and take a break every so often. Now, as he says, he doesn’t have a life. And that depresses me and makes me feel completely helpless. I know I am there for moral support, but there’s got to be more I can do for him. There has to be. I feel lost sometimes.

    Is it normal not to have had a ‘breakdown’ yet? I haven’t cried hardly at all since his diagnosis. I keep telling myself it’s because he’s still with me.

    Thanks for listening and caring like y’all do!!

    Valerie

    #55485
    Anonymous
    Guest

    Valerie:

    Boy, we all, I’m sure, share the fustration and feelings of being helplesss that you’re going through right now. For me it’s very much a grieving process. I grieve the loss of the life I had before this terrible disease took hold in Rachel and I grieve that loss on many different levels.

    And I can’t fix it. I’m the caregiver and I can’t really make it any better. That’s a hard one for me. We have also been shoved into a new life and new perspective that we would never choose for ourselves. We had no choice. That’s another hard one.

    But you’re not completely powerless and you’re doing extremely well at exactly what we can do: Being an effective advocate for Gary, satisfying yourself he’s getting the best care possible, and most importantly, just being there with him.

    Don’t worry about it being “normal” not having a breakdown yet. You will have your tears. Everybody reacts and works through this messy process differently. For me, I was never mad or pissed..until my therapist and priest helped me to see that I could give myself permission to be pissed. I was pissed this last Friday.

    I hope this helps.

    Jeff

    #55486
    Catherine Poole
    Keymaster

    Jeff and Valerie;

    I admire so much the hard work you put in as caregivers. I know it is emotionally draining to say the least. Somehow, you have to find time for yourself to get rejuvenated. I often think of that old saying about putting the oxygen mask on yourself first and then on your child. In order to be helpful to others, you have to take care of yourself first. So please use our forum to vent anytime and find support. That’s what it is here for!

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