• MerryMaid's Avatar

    MerryMaid asked a questionHead & Neck/Throat Cancer

    The 29th is Rare Cancer Day

    7 answers
    • meyati's Avatar
      meyati

      NM is still sort of rural- and when I say same area, I mean that I'm not traveling to a different city or county- all of my appointments were within Alb city limits.

      11 months ago
    • po18guy's Avatar
      po18guy

      A "Rare" cancer does not necessarily mean an aggressive, dangerous cancer. It may be a very unusual cancer which follows an indolent course. Naturally, some rare cancers are also aggressive, but mot always. What it does mean is that we, as the patient, must seek out an oncologist or hematologist who is familiar with that type, no matter ho rare it is.

      I have had two rare and aggressive T-Cell non-Hodgkin's Lymphomas. So rare that very few oncologists or hematologists have ever seen a case outside of a textbook. Neither a pathologist nor a seasoned oncologist thought I had a malignancy at all. In truth, I was at stage IV with too many tumors to count.

      For this reason, I always recommend that those with a diagnosis, or not yet diagnosed, travel if necessary to a National Cancer Institute designated comprehensive cancer center. Doing so literally saved my life.
      https://www.cancer.gov/research/nci-role/cancer-centers/find

      11 months ago
    • meyati's Avatar
      meyati

      po18guy---each cancer must be treated for what it is. Congressman Schiff-passed in the mid-90s, had a small stage 1 Squamous Cell Cancer on the tip of one ear. They took it off, gave him chemo for precautions, and it went like a wild fire through his body. he was buried 18 months later. Specialists came from Germany and Israel and treated him. He was a good Congressman and a true friend to many.

      it just does not help if a person has something that nobody has a name for. It took 2 years in labs to find out what family it was in- an odd cousin of Gorlin Syndrome.

      11 months ago
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    MerryMaid asked a questionHead & Neck/Throat Cancer

    After I was diagnosed some of my friends were here to support and help me, but several acted like they didn't even know me.

    6 answers
    • po18guy's Avatar
      po18guy

      Fairly common response, actually. They simply do not know how to act or what to say. I have had some dismiss my journey, saying "Oh, you'll be fine."

      Right. I will keep my thoughts private...

      11 months ago
    • smlroger's Avatar
      smlroger

      Yep it can be most uncomfortable for all. I think most people, especially those who have not personally faced a life changing/ending event feel very uncomfortable with thinking about their own mortality. I mean we all grow up thinking we are going to live forever and when someone close to them proves that wrong they can't deal with it. We probably didn't deal with very well when we got the news about ourselves either. It's natural. I think most will grow into it with a few that just cannot. For me, no harm no foul. We all deal with life in our own way. We go on.

      11 months ago
    • Sasukesuma's Avatar
      Sasukesuma

      Sometimes it the ones you think will be most supportive who disappear. Several people who I thought were close disappeared. I am now in remission and last week called one of them and invited her out to coffee. She accepted and it was just like the last three years never happened. I don’t know how to explain it. My best friend, though was on vacation when I was diagnosed. I called her and we laughed and joked about it and the next day she was on a plane home to help me out. She basically took a year out of her life to help me.
      When my husband was terminally ill with colon cancer my teenage son’s friends would drop in and sit at his bedside and talk with him for hours. His brother with whom he was really close basically disappeared until I called him and told him that if he wanted to see him before it was too late he had better get his XXX over here soon. He drove 3 hours through a blizzard and I swear it gave my husband an extra 3 weeks of life. All my life I have had a close family member with cancer. So I guess I just have more experience dealing with it. Some people don’t have that experience and don’t know how to handle it.

      11 months ago
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    I cannot believe that some of my so called "best friends" have just disappeared since I got diagnosed. I've needed a couple of them to be here for me and they just ignored me. Have any of you had that happen?

    1 Comment
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      Best friend for over 30 years invited me to no longer be a part of her life. She got mad at me because I was upset that she elected to go to an administrative meeting for her son's soccer team instead of my mom's memorial service. And yes, she knew my mom.

      11 months ago