The Leukemia & Lymphoma Society - Fighting Blood Cancers
16 Replies Latest reply: May 29, 2012 12:30 PM by Tex RSS

Week 41: My latest update 41 weeks post allo SCT

lymphomajourney Registered Users
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All well. Interesting thing was reaction to Cancerwise post on what we call ourselves: overwhelming use of term fighter (or equivalent), compared to survivor or a mix of terms, depending where on the journey. Expect our group would be more in the living with cancer or survivor space but who knows. Thoughts?

 

Andrew

Lymphoma Journey

  • Re: Week 41: My latest update 41 weeks post allo SCT
    Tex Registered Users
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    I've never liked the word "survivor."  I use it because we really don't have a better word but there's the implication of victimization inherent in the way I read/hear the word.  I think we've really overdone the whole victimization thing in this country during my lifetime to the point its a meaningless and convenient excuse.

     

    I didn't think of my role in my AML or treatment as that of victim.  I was just a hapless sap who walked through the wrong door or something at some point in his life and wound up with this junk. 

     

    I just think the word leaves a lot to be desired.  Thing is, the cancer didn't survive ME.

    • Re: Week 41: My latest update 41 weeks post allo SCT
      lymphomajourney Registered Users
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      Thanks for getting back to me. I keep on coming back to 'living with cancer' as none of the other terms really work for me. Just is for another hapless sap as you put it. Cheers

      • Re: Week 41: My latest update 41 weeks post allo SCT
        Lottie Registered Users
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        Interesting that you bring that up, because Nate was just talking about how people refer to him as a "survivor" now and someday he'll be a "long term survivor" and he said he doesnt like that term, either. He also didnt consider himself a "fighter" when going through it all, and said it was more of a journey than a battle. He said that though technically he is a cancer survivor, he prefers to think of himself as a guy who had cancer. He says "I had cancer for a month and a half, and the rest was just treatment." So he just says "i'm a guy who had cancer." I think it's the past tense, had, that makes that sentence so appealing to him.

        • Re: Week 41: My latest update 41 weeks post allo SCT
          lymphomajourney Registered Users
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          Thanks Lottie. Interesting comments from Nate and pleased that he has found a term that works for him. I also like the journey metaphor, given the stages that we go through. Cheers, Andrew

        • Re: Week 41: My latest update 41 weeks post allo SCT
          Tex Registered Users
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          I love "had."  Maybe something like, "I've completed my journey with cancer," is what I've been looking for, though it's a mouthful.  Thanks for the thought, though.  I kind of like that more than what society offers us.

           

          Which is kind of weird, when you think of it.  Someone considered themselves -- or someone they knew -- a cancer survivor and now we're all stuck with it.  Another someone, probably a doctor, started talking about "living with cancer."   And we're stuck with that, too.

           

          I wonder if underneath it all, that's not something that bothers me about the terms without my ever having realized it.  We all are comfortable with the fact we all have individual recoveries but people who went down similar roads years before us have stuck us with descriptions of our experiences that just don't fit right with our individual experiences.  That sounds like something that would piss me off.

           

          Sounds like Nate and I think about this much the same way.

      • Re: Week 41: My latest update 41 weeks post allo SCT
        Tex Registered Users
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        lymphomajourney wrote:

         

        Thanks for getting back to me. I keep on coming back to 'living with cancer' as none of the other terms really work for me. Just is for another hapless sap as you put it. Cheers

        I think one of the critical things to remember is, especially after a successful transplant, we're not actually living with cancer any more.  I haven't had AML since they chased it off with the conditioning chemo (knock wood).

         

        I'm living with the rather minor aftermath of a transplant and fighting the original disease but I'm not living with cancer and I hope you aren't either.  That's our goal.  I guess that's another reason why "survivor" is the only thing that really works for me.

         

        Someone else broadened my information about what the overall discussion regarding terminology is about.  I really never thought of myself as a warrior or anything like that.  I was just a guy who had his world turned over by some completely off-the-wall news that I had leukemia.  I didn't know if I was going to live, I was just determined to do what I was told and be here when it was all over.

         

        I don't know.  Terminology sucks.  Nothing works for everyone.

         

        Good discussion seems to be developing.

         

        Blessings

  • Re: Week 41: My latest update 41 weeks post allo SCT
    willowbayfarm Registered Users
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    I've never liked the term "survivor" either.  Try as I may, I cannot come up with anything better.  For the most part, I don't talk about it except to old friends who don't seem too put off if I bring it up. 

     

    I have to confess to still being slightly paranoid about seeming over-confident and it seems as though I almost feel like somehow the leukemia could overhear me and decide to ramp up again just to show me a thing or two.  Funny how it almost takes on a persona of its own, at least in my mind.  Recently I had another good CBC and my onc. said, "you beat it".  I wanted to put my hand over his mouth and shush him.  

     

    Maybe my discomfort with the term comes from feeling like the moniker was created by non-patients who were trying to define something they've really no idea about, although I hear others who have dealt with cancer call themselves survivors without missing a beat.  I dunno.  I guess I'll just go on pretending it never happened with folks who don't know me well and being tickled that I can fool them! 

     

    - WBF

    • Re: Week 41: My latest update 41 weeks post allo SCT
      lymphomajourney Registered Users
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      Thanks. The 'overconfidence' or tempting fate aspect also affects me. In the end, what I find interesting is how each of us come to a term, or set of terms, that capture how we feel during and after our experience. Some of us reflect more, some have a more automatic reaction, and enjoying the reflection in your and the other comments in this discussion. And great attitude in trying to fool people

       

      Andrew

    • Re: Week 41: My latest update 41 weeks post allo SCT
      Tex Registered Users
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      willowbayfarm wrote:

       

      I have to confess to still being slightly paranoid about seeming over-confident and it seems as though I almost feel like somehow the leukemia could overhear me and decide to ramp up again just to show me a thing or two.


      Why do you think I'm always writing "knock wood?"  I'm not really afraid of insulting the cancer.  I've always noticed that all too often, as soon as we begin to feel comfortable with something good, someone or something turns a valve that lets the floodgates open up.

    • Re: Week 41: My latest update 41 weeks post allo SCT
      KyGuy Registered Users
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      I guess I'll just go on pretending it never happened with folks who don't know me well and being tickled that I can fool them! 

      There's nothing wrong with that!  If they don't need to know, I don't tell them.

       

      I have to confess to still being slightly paranoid about seeming over-confident and it seems as though I almost feel like somehow the leukemia could overhear me and decide to ramp up again just to show me a thing or two.

      I think that gives it too much power over us.  Maybe I'm screwed up since I relapsed but I think it's important to live as if it's never coming back. 

       

      When I was first diagnosed, it was important to me to look myself in the mirror and say "I have cancer".  Then on the flip side, I was able to look myself in the mirror again and say "I don't have cancer".  That goes along with saying "I had cancer".  Whatever works.  I guess the problem with survivor is that we don't know if we're finished with it or if we're just sitting on the bench.  I just feel that every day that I'm free of it, I'm a survivor.  We don't know if we're going to be pulled off the bench or sit on the bench until the end of the game.  Then if we get called into the cam, the question is whether we'll play defense (patient) or offense (caregiver).  I'd probably suck at offense.  At the same time, we may just need to join the game on a different court.

       

      Take care,

      Kelly

      • Re: Week 41: My latest update 41 weeks post allo SCT
        lymphomajourney Registered Users
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        Some great reflections here all. On a lot of issues, I am with the 'whatever works' school (thanks Kelly, and some great game metaphors), although I have reservations when someone is too stuck on a single metaphor without the nuances that all of you have shared. Tex, to answer your question about 'living with cancer', I should know at the year mark but given the cumulative effect of all the chemo and radiation, my expectation, hopefully much later rather than sooner, some form may come back. Hence the need to avoid overconfidence but live life as if it is not there. Andrew

        • Re: Week 41: My latest update 41 weeks post allo SCT
          mamawarrior Registered Users
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          And it scares the heck out of me because it was MY son.

           

          No, i dont know what it is like to be the one facing the beast, but as the mother i do know what it is like to be scared to death for my child, to give everything and give up everything to help my son get through this, and i know what is is like to feel the need to stay on top of everything in fear that missing one thing could open the door to disaster. But i could not prevent relapse after initial treatment and my security was long gone after that.

           

          Even though my son is 5 years out, i still fear the beast and i still get a little panicky when my son calls, any change in the tone of his voice can send me spiraling back down the dark hole. As do many other things about this journey. 

           

          WBF, i totally understand your comment about wanting to shush the doctors comment, i avoid yearly celebrations for the exact same reason, i dont know if it is a feeling of tempting fate or if it is tempting the beast.

           

          Guess i am not as sane as you thought, tex.  

           

          Interesting conversation folks.

          • Re: Week 41: My latest update 41 weeks post allo SCT
            warrior Registered Users
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            Since I am the caregiver and not the person who had this horrible beast, my attitude may be a bit caviler. I see each day that Kathy wakes up cancer free as a gift  and a great day. That is how I describe her current "condition" cancer free! All of us have no idea what the future holds so the best we can do is try to have a healthy life style and get the most out the 24 hours we currently have. It has taken some effort to come to terms with the idea that as much as I know about biology and cancer, it has no impact on whether kathy will relapse or not..... out of my control....

          • Re: Week 41: My latest update 41 weeks post allo SCT
            Tex Registered Users
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            mamawarrior wrote:

             

            Guess i am not as sane as you thought, tex.  

             

            I think you are.  I often consider paranoia a sign that one is paying attention.  You never know who or what's out to get you.  Hell, that's the only sane response to life today.

             

            However, as your child continues to mature, you might want to get to the point you roll with the punches better.  I doubt Steven's ever going to get his cancer back.  But there are a lot of things he's going to be calling Mom about that won't make you happy.  Ours are in their 40s and still make us cringe.

      • Re: Week 41: My latest update 41 weeks post allo SCT
        Tex Registered Users
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        KyGuy wrote:

         

        I think that gives it too much power over us.  Maybe I'm screwed up since I relapsed but I think it's important to live as if it's never coming back. 

         

        I think one can live as if it's never coming back but still be afraid to say it out loud (knock wood).

         

        As for x's and o's, I was always playing offense in my mind.  I guess I'd think both patient and caregiver need to play iron man.