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Living with melanoma

Forums Caregiver Community Living with melanoma

  • Post
    Summer S.
    Participant

    My mom was diagnosed with Stage IV in May, although I am fighting by her side everyday, I feel extremely anxious lately especially with two consecutive progression reports over the past 7 months. I also feel rather helpless and sad and most of the time, I was rushed to the ER last week due to severe anxiety and lack of sleep that heavily affected my body. 

    How do you guys stay so strong? how do you live with the diagnosis and enjoy the precious moments you have with your beloved ones ? how do you live normally knowing things may never get better …

    And especially for caregivers out there, how do you survive the feelings of guilt and helplessness

     

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      cjm22
      Participant

      Hi Summer, I'm sorry to hear about your mom. :( I'm married to a guy with stage 4 melanoma. It sucks, doesn't it?

      I find that my sadness comes in waves. Sometimes for a week or two I feel a lot of despair and I cry a lot. Then, other times, I feel pretty good. I find the grief comes on after bad scans or news from the doctors, or when my husband's pain is acting up. When his pain is well-managed, my emotions are much more stable. I didn't notice this pattern until recently. Right now he is partially paralyzed from spine metastases and you'd think I'd be a real mess, but because his pain is well-controlled, I don't feel too bad.

      I don't think I'm strong at all. I don't really think my husband will ever be cancer-free. I'm not even sure he'll ever be able to walk again. But most of the time (like when his pain is managed), I'm able to accept the way things are and have fun with him, and other friends, in spite of the enormous losses we've experienced over the past year since his diagnosis. Being able to laugh and live a sort-of normal life has been crucial to surviving the past year.

      Here are some of the ways I try to keep it together:

      – when I'm feeling really sad, try to distract myself (make dinner, do homework, watch a movie, walk the dogs, call a friend) — often the horrible feelings will subside after a few hours if I can do something else

      – when I'm feeling guilty, tell myself that I'm doing the absolute best I can and nobody is ever perfect

      – when I feel helpless, remember all the things I DO have control over — I cook for my husband, keep him company, hug him and stick with him at the hospital. I can't cure cancer but I stick by him and that's not nothing.

      – give up on the idea of being a 'perfect caregiver' — I'm allowed to have bad moods, feelings, selfish thoughts, etc. I can only do my best.

      – remember that everything in life is temporary, both the good and the bad. When things are very dark, I remind myself "this too shall pass"

      – post on my online young adult cancer caregiver support group. I don't do this often since I prefer talking to my friends, but this can help when some things (like the guilt or anger) really can't be understood by other people who haven't gone through it.

      At the end of the day this is really an impossible and life-changing experience. Nobody asks for cancer. Nobody asks to be a caregiver for someone they love who has cancer. And yet many, many of us end up in this position and step up and get the work done. You aren't alone in your feelings or in your experience even though it's the most isolating and horrible thing. But you love your mom and that's what will carry you through, since none of us really have a choice in the matter.

      And keep in mind, like I said earlier, I definitely have horrible, grief-stricken days where I feel like garbage, cry hysterically and snap at my husband. I don't have it all together at all. But we just keep on keeping on. One of my friends from high school always said "Ain't nothin to it but to do it" and that's basically been my mantra since this whole thing started. Never thought I'd be helping my mid-30s hubby clean his bum but now I can say been there, done that.

      I hope you'll find some peace and calm soon. For now I've mostly given up on wishing for the type of carefree happiness I had before my husband got sick. But peace and calm are still manageable.

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        Summer S.
        Participant

        Hello dear,

        You just helped me realize more of the bigger picture, the patterns of sadness or despair, it is allowing me to become less absorbed by one wave of feelings and gradually realize it can and may pass too. 

        Thank you! yor are just a wonderful person, your genuine words truely touched me and I know how difficult it is to reflect and share your story in general and especially with a stranger like me.  

        I am really humpled by your experience and what you do, and I feel more understood, and much less alone in this …
        Thank You heart

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        cjm22
        Participant

        I'm glad it helped. Talking to other people who've been through grief is helpful to me, too. The terrible thing about cancer is that a lot of people have experienced it (either as a patient/survivor or as a caregiver), but it does mean that even though it's an isolating experience, you know that other people have made it through and have probably felt very similarly to the way you do now.

        We can't really control our feelings. Sometimes we're just going to feel really sad (or angry, or helpless, or guilty). We're experiencing a really difficult time in our lives, so these feelings make total sense. In fact, it would be pretty weird if I never felt sad while my husband is suffering so greatly …

        But I find it is definitely helpful to remember that feelings (and experiences) are always temporary, so even intense sadness will change and go away sometimes. Just have to ride it out and keep doing the work and try to find small funny moments where we can.

        I haven't found counselling too helpful, but if that's offered through your mom's treatment center, you could try that, too. Our cancer agency offers free counselling (biweekly appointments) to the primary caregivers and family members as well as the person with cancer.

        You can do this! Keep loving your mom, that's the best thing you can do.

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        aldrichdesigner
        Participant
        @cjm22 I too have been paralyzed recently from bone mets. How high up does your husband’s parallisis run? Mine goes from feet to about 5 inches above my belly button.

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      One little bit at a time.  I compartmentalize everything.  Just get through the drive to work.  Just make it through the first meeting.  Just make it through lunch, etc and then repeat.  Try to take some time for yourself.   I write in a journal, and lean on friends, on this group, sometimes a therapist.  It isn't easy to be the caregiver.  My husband is in that role and he is sometimes lost.

      You are doing great.  This isn't easy for anyone.  Stay strong.

      Good wishes to you.

      Jennifer

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        Summer S.
        Participant

        Hi Jennifer, 

        My warmest wishes goes to you and your husband – this a brilliant tip, and now knowing it works with you :)) I feel like I can do it too 

        Love, 
        S.

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      WithinMySkin
      Participant

      As others have said here, you take it one step at a time. Every day is different, every moment is different. I personally tend to bottle up my feelings but that was really bringing me down (like…way down). I eventually learned to do the very opposite, which helped me tremendously. If I was feeling scared or sad, I'd get out a good cry or write in my journal and get it out and move on. Live in the moment because worrying about the future doesn't help anything. I learned to lean on those who understood. Once I accepted that I had no control over the big picture but I DID have control over my mindset and the daily mental grind, things definately got a bit easier to swallow. Normal is what you accept as normal…you get to define it. I don't think anyone who has had cancer lives a 'normal' life — it just becomes an accepted new 'normal' and we do the best we can with what we've got. 

      Thoughts and prayers to you and your mother,

      Lauren

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      Hukill
      Participant

      When I was diagnosed with stage IV I continued my life as normal. I will fight as best I can but not let cancer control my life. I had 5 nivo/ipi combos and 52 doses of nivo without missing a dose. During the combos lots of side effects but I still worked full time to support my family. I never got down or depressed, I was always upbeat, not that fake positive attitude junk but really just tried to be my normal self. I am nobody special but when I got melanoma I was already ok with death and believed without a doubt that something better awaits me after this life. Do I wish to die, no, but it will happen some time and I am ok with it. I actually think it is exciting when you think about you may be about to see what awaits us after death. We really don't have much control over the physical effects of melanoma and fighting it but how we deal with it mentally is our control. Melanoma may take my life but it will not take my spirit and I will go out being my happy normal self. Again, I am nobody special but a long life has taught me that things I can't control don't let them control me. Our spirits belong to us not melanoma. Merry Christmas to everyone and may this not be your last, God bless you all.

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