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"Helpful" family and friends

  • By Kevin

    So, this is not exactly related to my MS, although I’ve had times in years gone by that I had similar interaction. BTW, I was diagnosed in Sept ’96. And even though my story hasn’t come about because of my MS, there has to be others that have gone through the same thing. But I just absolutely need to get this off of my chest because it’s killing me. So in June ’17, I two moles, side by side, on the left side of my neck, that felt funny one day. Growing up with a mom that worked for doctors, I knew that I needed to get them looked at and soon. So I contacted my dermatologist. Long story short, they were BOTH melanoma. So surgery was scheduled, moles removed along with 3 lymph node just to make sure. No treatment was needed. Fast forward to the Wednesay evening before Thanksgiving 2018. I felt a large lump in my left neck, much further down this time. Contacted the oncology surgeon as soon as I could.The month of December was a blur of ultrasounds, CT’s, MRI’s, amongst other testing. Yes, the melanoma had returned. There were several spots this time, including one in my left saliva gland. Long story short, major surgery this time. Treatment started shortly after surgery.

    What I’m getting at with my story, is this. Friends and family came crawling out of the wood work with what I should be doing treatment wise. My family kept saying that I needed to go get a second opinion. My response was always the same. What if it differs from the first one? Do I go for a third or fourth? That’s usually when they’d get upset with me and tell me that I was just being silly. What I wanted to say was, NO! I’m not being silly. I am scared to death. I have a lot going on in my mind right now and I have all of these people coming at me with what I NEED to be doing. What I really needed was for everyone to leave me alone and let me deal with it, emotionally. I haven’t had that chance yet to be honest. This road, much like the MS road, has been full of challenges. Even with monthly treatment, it keeps returning. With spots in my left neck (again) lungs and spleen, treatment has changed. And with that comes all of the helpful suggestions for getting second opinions. I cannot make them understand that I trust my oncology team. They are some of the top oncologists in their field in the United States. I’m very blessed to live in the same community as where they practice. This is not to say that my primary oncologist and I haven’t butted heads a few times. I wanted him to understand that this is my body. I ultimately call the shots, like it or not.

    We all appreciate our family and friends wanting to give us advice about what to do. They care. They love us. They just need to learn boundaries and when to just back off and leave us alone. Like I said, I’ve really not had to chance to sit down and emotionally process that I have stage 4 melanoma cancer. AndI don’t think they realize that I haven’t had this time yet. It is a process that we all have to go through, no matter what the disease. We have to get through the initial “shock”, so to speak. Have an amazing week!!

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  • By Shelby Comito Keymaster

    Hi @kevin, I think you touch on that fine line that so many experience – recognizing and appreciating that loving concern from family and friends, but also needing a little space. Thank you so much for taking the time to share here, and if you’d ever like to share more of your story, we’d love to read it! You can post a story anytime on our site here – https://multiplesclerosis.net/stories/

    I also wanted to let you know in case you weren’t already aware that we have a sister community for skin cancer if you’d like to check it out – https://skincancer.net/

    Thank you again for taking the time to share and please feel free to do so anytime. – Shelby, MultipleSclerosis.net Team Member

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  • By saimamom

    Kevin,
    I’m sorry you’re going through stage 4 cancer. But also sorry that you find so little support in your family. They seem to be adding to the stress. If you can put yourself in their shoes, realize they’re scared. They have a fear of not being able to control and fix this situation.

    Just say, “Thank you.” Then follow the Oncologists you trust. My husband is a surgical oncologist and he treats melanoma as well. It’s important for you to have confidence in your team. I might also suggest you learn stress management, maybe meditate. You can’t change those around you. But you can learn to create your own boundaries.

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