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  • garym
    garym Member Posts: 1,647
    #22
    We ned both...

    When I was forced to join some 45 months ago there was very little technical information here and I have watched this site evolve into one that offers a much deeper knowledge based level of support with much more to offer our newcomers.  They come here scared and in need of both hope and knowledge, today both can be found here, not so in the past.    I have assumed the role of cheerleader (no skirt jokes please) because it suits me and my current “cured” situation while those in the thick of it like Tex, Neil, and others provide a wealth of  experience and information from the front battle lines.  It is a blend that seems to work quite well, and one that I certainly hope will continue.  The reason “I’m still here” is that RCC remains my constant companion and while I don’t currently have a need based interest in the fight, if/when I do, I’ll know where to turn.  I long for the day when all of this is no longer necessary, but until that time the balance achieved over the last year or so has worked best in my opinion.

  • MDCinSC
    MDCinSC Member Posts: 574
    #23
    Galrim said:

    But you shouldnt be silent...

    Seriously Nano. Dont hold back on that type of information, be it you or anyone else.

    We have cancer. We had cancer. We are prone to have relapses. All of us! The only thing differentiating us are the odds. We have to live with it. Period!

    Not nice to know, but its a fact. And denying it or trying to keep it hidden away is not going to help anyone. If someone doesnt like to be reminded of the risk of relapse or progression, then they should stop reading the threads were it is discussed.

    The information given in those threads are important and vital to a lot of people seeking information here. This board would loose a big part of its purpose if a general sentiment of "no no dont talk about prognostic factors and mcc´s in here, lets just pat eachothers backs and send happy thoughts and nothing else because then we get scared" prevailed...

    The comfort given, the advises, the wishing of good luck all holds value, but so does the information given about the darker side of RCC, whether we like it or not. What would this forum be without the stories and inputs from the likes of you, Texas, Fox and others? It might be a comforting and warm place to be, but it would also be a collective excersise in denial of reality.

    And the latter we certainly dont need...so keep posting and dont hold back.

    My five cents.

    /G 

    Bravo!

    You da man Galrim! 

    oopss!  I'm cheerleading again! Wink 

    Call it my widow's mite!  Tongue Out

  • MDCinSC
    MDCinSC Member Posts: 574
    #24
    garym said:

    We ned both...

    When I was forced to join some 45 months ago there was very little technical information here and I have watched this site evolve into one that offers a much deeper knowledge based level of support with much more to offer our newcomers.  They come here scared and in need of both hope and knowledge, today both can be found here, not so in the past.    I have assumed the role of cheerleader (no skirt jokes please) because it suits me and my current “cured” situation while those in the thick of it like Tex, Neil, and others provide a wealth of  experience and information from the front battle lines.  It is a blend that seems to work quite well, and one that I certainly hope will continue.  The reason “I’m still here” is that RCC remains my constant companion and while I don’t currently have a need based interest in the fight, if/when I do, I’ll know where to turn.  I long for the day when all of this is no longer necessary, but until that time the balance achieved over the last year or so has worked best in my opinion.

    No Skirt Jokes?

    Awwww!

    Hmmmph! I'll bet he has the legs for it!

  • NanoSecond
    NanoSecond Member Posts: 653
    #25
    Galrim said:

    But you shouldnt be silent...

    Seriously Nano. Dont hold back on that type of information, be it you or anyone else.

    We have cancer. We had cancer. We are prone to have relapses. All of us! The only thing differentiating us are the odds. We have to live with it. Period!

    Not nice to know, but its a fact. And denying it or trying to keep it hidden away is not going to help anyone. If someone doesnt like to be reminded of the risk of relapse or progression, then they should stop reading the threads were it is discussed.

    The information given in those threads are important and vital to a lot of people seeking information here. This board would loose a big part of its purpose if a general sentiment of "no no dont talk about prognostic factors and mcc´s in here, lets just pat eachothers backs and send happy thoughts and nothing else because then we get scared" prevailed...

    The comfort given, the advises, the wishing of good luck all holds value, but so does the information given about the darker side of RCC, whether we like it or not. What would this forum be without the stories and inputs from the likes of you, Texas, Fox and others? It might be a comforting and warm place to be, but it would also be a collective excersise in denial of reality.

    And the latter we certainly dont need...so keep posting and dont hold back.

    My five cents.

    /G 

    Thanks

    Michael, Galrim, and others...

    Many thanks for your thoughts. I will certainly continue to post the "facts" as I best understand them. I firmly agree that "knowledge is power".  However, I frequently find that I have to go against what is "commonly" accepted as truth whenever I conclude the precise and/or newer research points in precisely the opposite direction.  I find that this also can make some people uncomfortable - since it is troubling trying to deal with yet another level of uncertainty.

    The only way to get at the "real" truth regarding these kinds of issues is at least to first hear them.  Sometimes that can be disorienting and uncomfortable.

    Anyway, I don't plan to refrain from contributing more information whenever requested.  But I will be silent for this next week as I am about to attend 4th of July festivities that take me away from access to the internet and email.

    Happy 4th to all (and, of course, even to our UK friends who may not be viewing this bit of history in quite the same way as we do) :)

     

  • MDCinSC
    MDCinSC Member Posts: 574
    #26
    NanoSecond said:

    Thanks

    Michael, Galrim, and others...

    Many thanks for your thoughts. I will certainly continue to post the "facts" as I best understand them. I firmly agree that "knowledge is power".  However, I frequently find that I have to go against what is "commonly" accepted as truth whenever I conclude the precise and/or newer research points in precisely the opposite direction.  I find that this also can make some people uncomfortable - since it is troubling trying to deal with yet another level of uncertainty.

    The only way to get at the "real" truth regarding these kinds of issues is at least to first hear them.  Sometimes that can be disorienting and uncomfortable.

    Anyway, I don't plan to refrain from contributing more information whenever requested.  But I will be silent for this next week as I am about to attend 4th of July festivities that take me away from access to the internet and email.

    Happy 4th to all (and, of course, even to our UK friends who may not be viewing this bit of history in quite the same way as we do) :)

     

    Enjoy your trip!

    We'll be here!

     

    Thanks again!

  • BLKJAK
    BLKJAK Member Posts: 108
    #27
    garym said:

    We ned both...

    When I was forced to join some 45 months ago there was very little technical information here and I have watched this site evolve into one that offers a much deeper knowledge based level of support with much more to offer our newcomers.  They come here scared and in need of both hope and knowledge, today both can be found here, not so in the past.    I have assumed the role of cheerleader (no skirt jokes please) because it suits me and my current “cured” situation while those in the thick of it like Tex, Neil, and others provide a wealth of  experience and information from the front battle lines.  It is a blend that seems to work quite well, and one that I certainly hope will continue.  The reason “I’m still here” is that RCC remains my constant companion and while I don’t currently have a need based interest in the fight, if/when I do, I’ll know where to turn.  I long for the day when all of this is no longer necessary, but until that time the balance achieved over the last year or so has worked best in my opinion.

    Agreed

    We do need to have a variety of information on this board. Some people really need to have the cheerleaders in their corner to give them the courage to fight this damn disease. It's easy for a newbie to be overwhelmed by the technical nature of some posts, so it's nice to have others on here that can communicate to us commoners. Some of us want to know the details and facts of this disease so they can make informed decisions and challenge their medical staff to see if they are the right people to help them fight this using all of the latest tools in their arsenal. There has always been something for everyone here, and the members are constantly evolving. Their desire to get answers and information keeps growing. The information that once satisfied their needs will become inadequate and they will seek more indepth information from the likes of Neil, TW, etc. I'm thankful for everyone on this site. From the cheerleaders to those who are able to be logical and tell it like it is.

    BLKJAK

    P.S. I guess my post helped to generate some activity on this board! :)

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