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Tolerance and diversity (long)

Forums Cutaneous Melanoma Community Tolerance and diversity (long)

  • Post
    NicOz
    Participant

    I fail to see how choosing to post anonymously is not being respectful. If someone chooses to maintain their privacy by not using a recognisable moniker, then they are perfectly within their rights to do so, surely?

    I fail to see how choosing to post anonymously is not being respectful. If someone chooses to maintain their privacy by not using a recognisable moniker, then they are perfectly within their rights to do so, surely?

    I don’t post anonymously here, but I also don’t ask many questions these days, nor do I have much to “offer”. Not everyone who visits this forum has travelled the more ‘typical’ route of melanoma progression or treatment. And with the amount of people concerned about “upsetting the natives” and “scaring people” with their stories, I actually feel that I have nothing to offer in most cases.

    I used to post on here more frequently, but no longer feel part of the ‘community’ so these days it is fairly rare that I respond. I have nothing to offer with regard to chemo information that hasn’t already been covered in numerous posts. I have no advice to offer stage I, II OR III as I jumped straight to IV. I don’t even have much to offer stage IV as I only deal (at this stage) with brain mets using a mixture of surgery and SRS. Don’t ask me about liver, lungs, intestines, bones, subcutaneous mets… I have no idea or advice to offer. I will deal with them if and when I have to.

    I don’t get on and talk too much about brain mets, other than to update any treatment I’ve had recently, and I’ve had that many surgeries that I’d just be repeating myself over and over (which would be a waste of time in my book) And frankly, sometimes I’m just too busy living as normal as possible life and spending time with my little girl.

    Because I choose not to immerse in  and surround myself with melanoma does not mean that I have any less right to visit this site to lurk and see how friends are doing. If I choose to distance myself to stay away from here because I do not feel up to seeing one more ounce of bad news, that is my business. If I choose to push melanoma to the periphery of my life, then more power to me! I already have it in my body- I see no need to have it on my mind unless it is necessary.

    I have divulged all of the personal information I intend to, and have no wish to go over it ad nauseum. There are archives for that.

    I am at a different place to where I used to be, so this is what works for me. Times change. Circumstances change. Fear changes, and even abates. My needs are different. I have been around here for 2.5 years. Not everyone is at the same stage or in the same place, and I think people tend for forget that lately.

    I don’t get my “hope” from anyone else, so I don’t come here looking for that. I do my own research on what interests me, and I’m qualified enough to do that considering I was clinical trial researcher prior to melanoma. I’m in a different country to most on here, so I’m not going to be any help with doctor recommendations, available trials,  disability/insurance/financial issues.

    I don’t reach for NED. To me, it’s just another acronym. I’ve never been NED and that doesn’t actually bother me because, for now, I’m still living independently, still caring for my 5yo daughter, still doing the school run and still taking my girl on bone-jarring rides at the local show (fair, I think most call it) From November to June just past, I had 3 craniotomies (one of those was a double) and an SRS treatment, and there was not a month when I didn’t have to travel for medical appointments. For the moment, I’ve had 3.5 months at home, and I’ve been loving it.

    Yes, I still have 5 tumours in my brain, but meh. When I get to the point where I need to have something done about them, I will (and no, they aren’t measured in mm’s IFKWIM) For the moment, we’re chugging along nicely.

    My point? Not sure. Just letting people know that there are real people who visit this forum, and their reasons for not being active are likely many and varied. It is up to no one else to judge them for it. People have the right to be active, or not. To be anonymous, or not. Everyone has their own reason for being here, and it is no less valid because it doesn’t mesh with how someone else thinks it should be.

    Rant over.

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  • Replies
      LizzM
      Participant

      I totally agree with all you said but just wondered if you were responding to something someone else said?? What brought on your self-described "rant?"

      I am glad you are doing well Nic.

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      LizzM
      Participant

      I totally agree with all you said but just wondered if you were responding to something someone else said?? What brought on your self-described "rant?"

      I am glad you are doing well Nic.

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      washoegal
      Participant

      I've wondered who viewed and didn't respond.  Nice to hear from you…..even in a "rant".  Good luck in your battle and keep up the wonderful attitude.

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      washoegal
      Participant

      I've wondered who viewed and didn't respond.  Nice to hear from you…..even in a "rant".  Good luck in your battle and keep up the wonderful attitude.

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      glewis923
      Participant

      Dear Nic and All-  I get it.  I have my own reasons for not "facebooking" this site.  I've gotten tons of useful & anecdotal info.- especially from search feature.  Unless I can specifically help someone with some new "experience" I seldom post.  I do read most posts just to see what others are doing and because I do care, even if I don't really know them.  Anyway, hope all will be well with you and everyone else- with or without melanoma or otherwise.  What else can be said?

       

      Love and Such to ALL-  Shady-Grady, Low swamps of Gawga.

       

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      glewis923
      Participant

      Dear Nic and All-  I get it.  I have my own reasons for not "facebooking" this site.  I've gotten tons of useful & anecdotal info.- especially from search feature.  Unless I can specifically help someone with some new "experience" I seldom post.  I do read most posts just to see what others are doing and because I do care, even if I don't really know them.  Anyway, hope all will be well with you and everyone else- with or without melanoma or otherwise.  What else can be said?

       

      Love and Such to ALL-  Shady-Grady, Low swamps of Gawga.

       

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