Loading ...
Sorry, an error occurred while loading the content.
 

Re: [BrainSurgery] Message from member

Expand Messages
  • chosen 1
    Hey Bruce!!! I just noticed your name. I belong to the ependy group that you moderate!!! I guess i don t keep up w/ this one like I do the other :o) Just
    Message 1 of 8 , Mar 2, 2005
      Hey Bruce!!!
      I just noticed your name. I belong to the ependy group that you moderate!!! I guess i don't keep up w/ this one like I do the other :o) Just wanted to say "HI"
      Billi Banks
      4th vent ependy w/ "probable" 100% resection March 2004

      Bruce Blount <brub58@...> wrote:
      Just a thought here -
      As some of us were pessimistic before the tumor, some of us were optimistic. The tumor did not change that, those makeups decide our opinions.
      I may be wrong...
      Bruce, 4th ventricle surgery & radiation, '95

      Patricia Williams <trisha4080@...> wrote:


      I received this email today from a member of our list. She's given me her
      permission to post it to the group so other people could jump in and we
      would all benefit from a group discussion. My nursing qualifications help
      me in some ways in this list. But for a post like this, it's my experiences
      as a brain tumor patient and survivor that I draw from. So we have many
      experts in here...



      Here's her post: (exerpts)



      "...I know that virtually every person (patient) on this list had their
      lives changed (for the worse) with whatever experience they experienced with
      their illness. I was just wondering if many people were able to get back to
      any normal kind of life. Do they help people get back into any kind of
      routine/career after their illness with any kind of rehabilitation? Would
      occupational therapy have helped? Since you are a registered nurse, (and a
      surviver) I believe; I thought you might be the best person to tell me. I
      have had a lot of heartache about this for almost 16 yrs, which to me is a
      very, very long time. I also feel it is the loss of the whole person I could
      have been that I am grieving, and I just don't know how to get over it. I
      don't know how asking you this question will change anything, but I hope
      even writing this down will get some of my hurt and frustration out of my
      system.



      ... They literally just sent me back to live (or die) as they didn't give my
      parents and I any name for any kind of help, but left it up to us to do
      whatever we thought was best. I know there was a brain injury support group
      that had started by that time, as I found it ten yrs after I had the ops;
      (without any help from them) but I found that I didn't "fit in" there
      either, as those people were much, much worse off than I was ten yrs after
      the surgery, and most of them were retarded, which is something I quite
      obviously am not.



      ... I was 17 yrs old when I had the two ops and I will be 33. I feel that is
      a lot of yrs I lost. Anyway; trying my best to go on, I guess... thank you
      for reading this e-mail. "



      My reply to the post:



      I agree with you that every person on this list (patients, families and
      friends) have had their lives changed forever. Some of the changes were
      bad, but some were actually good Most people I have spoken to agree with
      me that there is a silver lining in this cloud. For me, I find I am more
      patient, more relaxed, and most of all, I now live in the "present moment"
      and don't analyze everything I've said or should have said or let things
      bother me the way I used to (since I usually can't remember!). I appreciate
      things so much more. My daughter, my husband, everything. I know it's
      harder for many of us to process our thoughts, concentrate, organize, speak,
      be around noise and lots of people; but, I truly would say the positive has
      outweighed the negative. I mention this because in the above post it was
      mentioned that people had had their lives changed for the worst. I am
      afraid that we often focus on the bad things and don't take the time to
      really focus on some of the positives; but I do believe most of us feel that
      those positives are definitely there. Maybe we need to talk about them
      more.



      And there's that word again... "NORMAL". Volumes could be written about
      that word and what it means. I have come to understand that "normal" solely
      depends on WHO you're talking about. In this list, I would say it's normal
      to have had brain surgery or a brain tumor affect your life. That's not
      normal in our community! But here, it definitely is. So, I believe we have
      to learn to adapt to a new normal when we enter this experience. This, I
      believe, was one of the biggest hurdles for me. I could relearn to walk,
      talk and use my hand. My goals were clearly defined, I was on a mission.
      But, to redefine yourself - THAT is difficult. Very difficult.



      And for me, that's what it took. Redefining myself and accepting myself as
      a new person. Not as smart as before. Capabilities more limited. But in
      many ways, I had insights I never would have had otherwise. Any of you used
      to be impatient with slow learners??? I was. I always thought some people
      just didn't try hard enough. Now that I've seen the other side, I know
      better. New limitations. It took "this" to cause me to realize how some
      of the things I took for granted were actually gifts. And now, another very
      unique gift: being been able to live my life as two separate "selves", two
      totally different perspectives. How many people get to do that? There is a
      new person inside my head now. The old one is gone. I resisted getting to
      know her and giving her a chance. It took some mourning for the loss of the
      old "self". But once I did that, the whole world opened up to me in a much
      brighter way.



      So, in a way you are right when you say you are "grieving the loss of a
      person." But, if you continue to grieve the loss of the person you "could
      have been", what's going to happen to the person you ARE now. It's
      important to learn to get to know that person, the one you are now. Kind of
      exciting actually. Maybe even try the support group thing again. There are
      four people in the one I'm going to and none of them are intellectually
      retarded. Maybe you'd benefit from that.



      Lastly (I wanted to make sure I covered your many questions/comments), you
      are so right about the lacking follow-up for post operative or post
      diagnosis brain tumor patients. Unfortunately, we cannot change what
      happened to us - but we can continue to learn what needs to be done and help
      to improve those areas for future patients. (take the polls, for one!). We
      are going to make a difference in the area of identifying patients needs and
      helping to educate medical professionals and the community by being
      catalysts for change.



      You're going to do fine. FYI for others reading this, this member has been
      happily married for two years now, plans to start a family next year, and is
      very creative and artistic. You just need to get to know yourself better
      and I expect you will see much improvement in the way you feel. And, by all
      means, if getting your hurt and frustration out helps you work through this,
      then keep on posting! This is not an easy transition, but it is well worth
      the work it takes. You hang in there.



      Sorry this was so long everybody... it was kind of hard to "nutshell" it.



      All my best,

      Trisha

      Trisha Williams, R.N.

      BrainSurgery@Yahoo Group Founder/Moderator

      4.8 cm meningioma left frontal/parietal/temporal lobes resected 5/3/99

      Living, laughing and loving better than ever!

      HAVE YOU VOTED IN THE POLLS???? CHECK THEM OUT:
      http://health.groups.yahoo.com/group/BrainSurgery/polls







      [Non-text portions of this message have been removed]



      ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE IN THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***

      Community email addresses:
      Post message: BrainSurgery@...
      Subscribe: http://groups.yahoo.com/group/BrainSurgery
      Unsubscribe: Trisha4080@...
      List owner: Trisha4080@...

      Shortcut URL to this page:
      http://health.groups.yahoo.com/group/BrainSurgery



      ---------------------------------
      Yahoo! Groups Links

      To visit your group on the web, go to:
      http://groups.yahoo.com/group/BrainSurgery/

      To unsubscribe from this group, send an email to:
      BrainSurgery-unsubscribe@yahoogroups.com

      Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



      ---------------------------------
      Do you Yahoo!?
      Yahoo! Mail - Helps protect you from nasty viruses.

      [Non-text portions of this message have been removed]



      ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE IN THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***

      Community email addresses:
      Post message: BrainSurgery@...
      Subscribe: http://groups.yahoo.com/group/BrainSurgery
      Unsubscribe: Trisha4080@...
      List owner: Trisha4080@...

      Shortcut URL to this page:
      http://health.groups.yahoo.com/group/BrainSurgery


      Yahoo! Groups SponsorADVERTISEMENT


      ---------------------------------
      Yahoo! Groups Links

      To visit your group on the web, go to:
      http://groups.yahoo.com/group/BrainSurgery/

      To unsubscribe from this group, send an email to:
      BrainSurgery-unsubscribe@yahoogroups.com

      Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



      Billi Banks




      ---------------------------------
      Celebrate Yahoo!'s 10th Birthday!
      Yahoo! Netrospective: 100 Moments of the Web

      [Non-text portions of this message have been removed]
    • Bruce Blount
      Hi Billie! I don t get on this one too often either. Anyhow, HI ! Bruce chosen 1 wrote: Hey Bruce!!! I just noticed your name. I
      Message 2 of 8 , Mar 4, 2005
        Hi Billie!
        I don't get on this one too often either. Anyhow, "HI"!
        Bruce

        chosen 1 <drlnclemntyn69@...> wrote:
        Hey Bruce!!!
        I just noticed your name. I belong to the ependy group that you moderate!!! I guess i don't keep up w/ this one like I do the other :o) Just wanted to say "HI"
        Billi Banks
        4th vent ependy w/ "probable" 100% resection March 2004

        Bruce Blount <brub58@...> wrote:
        Just a thought here -
        As some of us were pessimistic before the tumor, some of us were optimistic. The tumor did not change that, those makeups decide our opinions.
        I may be wrong...
        Bruce, 4th ventricle surgery & radiation, '95

        Patricia Williams <trisha4080@...> wrote:


        I received this email today from a member of our list. She's given me her
        permission to post it to the group so other people could jump in and we
        would all benefit from a group discussion. My nursing qualifications help
        me in some ways in this list. But for a post like this, it's my experiences
        as a brain tumor patient and survivor that I draw from. So we have many
        experts in here...



        Here's her post: (exerpts)



        "...I know that virtually every person (patient) on this list had their
        lives changed (for the worse) with whatever experience they experienced with
        their illness. I was just wondering if many people were able to get back to
        any normal kind of life. Do they help people get back into any kind of
        routine/career after their illness with any kind of rehabilitation? Would
        occupational therapy have helped? Since you are a registered nurse, (and a
        surviver) I believe; I thought you might be the best person to tell me. I
        have had a lot of heartache about this for almost 16 yrs, which to me is a
        very, very long time. I also feel it is the loss of the whole person I could
        have been that I am grieving, and I just don't know how to get over it. I
        don't know how asking you this question will change anything, but I hope
        even writing this down will get some of my hurt and frustration out of my
        system.



        ... They literally just sent me back to live (or die) as they didn't give my
        parents and I any name for any kind of help, but left it up to us to do
        whatever we thought was best. I know there was a brain injury support group
        that had started by that time, as I found it ten yrs after I had the ops;
        (without any help from them) but I found that I didn't "fit in" there
        either, as those people were much, much worse off than I was ten yrs after
        the surgery, and most of them were retarded, which is something I quite
        obviously am not.



        ... I was 17 yrs old when I had the two ops and I will be 33. I feel that is
        a lot of yrs I lost. Anyway; trying my best to go on, I guess... thank you
        for reading this e-mail. "



        My reply to the post:



        I agree with you that every person on this list (patients, families and
        friends) have had their lives changed forever. Some of the changes were
        bad, but some were actually good Most people I have spoken to agree with
        me that there is a silver lining in this cloud. For me, I find I am more
        patient, more relaxed, and most of all, I now live in the "present moment"
        and don't analyze everything I've said or should have said or let things
        bother me the way I used to (since I usually can't remember!). I appreciate
        things so much more. My daughter, my husband, everything. I know it's
        harder for many of us to process our thoughts, concentrate, organize, speak,
        be around noise and lots of people; but, I truly would say the positive has
        outweighed the negative. I mention this because in the above post it was
        mentioned that people had had their lives changed for the worst. I am
        afraid that we often focus on the bad things and don't take the time to
        really focus on some of the positives; but I do believe most of us feel that
        those positives are definitely there. Maybe we need to talk about them
        more.



        And there's that word again... "NORMAL". Volumes could be written about
        that word and what it means. I have come to understand that "normal" solely
        depends on WHO you're talking about. In this list, I would say it's normal
        to have had brain surgery or a brain tumor affect your life. That's not
        normal in our community! But here, it definitely is. So, I believe we have
        to learn to adapt to a new normal when we enter this experience. This, I
        believe, was one of the biggest hurdles for me. I could relearn to walk,
        talk and use my hand. My goals were clearly defined, I was on a mission.
        But, to redefine yourself - THAT is difficult. Very difficult.



        And for me, that's what it took. Redefining myself and accepting myself as
        a new person. Not as smart as before. Capabilities more limited. But in
        many ways, I had insights I never would have had otherwise. Any of you used
        to be impatient with slow learners??? I was. I always thought some people
        just didn't try hard enough. Now that I've seen the other side, I know
        better. New limitations. It took "this" to cause me to realize how some
        of the things I took for granted were actually gifts. And now, another very
        unique gift: being been able to live my life as two separate "selves", two
        totally different perspectives. How many people get to do that? There is a
        new person inside my head now. The old one is gone. I resisted getting to
        know her and giving her a chance. It took some mourning for the loss of the
        old "self". But once I did that, the whole world opened up to me in a much
        brighter way.



        So, in a way you are right when you say you are "grieving the loss of a
        person." But, if you continue to grieve the loss of the person you "could
        have been", what's going to happen to the person you ARE now. It's
        important to learn to get to know that person, the one you are now. Kind of
        exciting actually. Maybe even try the support group thing again. There are
        four people in the one I'm going to and none of them are intellectually
        retarded. Maybe you'd benefit from that.



        Lastly (I wanted to make sure I covered your many questions/comments), you
        are so right about the lacking follow-up for post operative or post
        diagnosis brain tumor patients. Unfortunately, we cannot change what
        happened to us - but we can continue to learn what needs to be done and help
        to improve those areas for future patients. (take the polls, for one!). We
        are going to make a difference in the area of identifying patients needs and
        helping to educate medical professionals and the community by being
        catalysts for change.



        You're going to do fine. FYI for others reading this, this member has been
        happily married for two years now, plans to start a family next year, and is
        very creative and artistic. You just need to get to know yourself better
        and I expect you will see much improvement in the way you feel. And, by all
        means, if getting your hurt and frustration out helps you work through this,
        then keep on posting! This is not an easy transition, but it is well worth
        the work it takes. You hang in there.



        Sorry this was so long everybody... it was kind of hard to "nutshell" it.



        All my best,

        Trisha

        Trisha Williams, R.N.

        BrainSurgery@Yahoo Group Founder/Moderator

        4.8 cm meningioma left frontal/parietal/temporal lobes resected 5/3/99

        Living, laughing and loving better than ever!

        HAVE YOU VOTED IN THE POLLS???? CHECK THEM OUT:
        http://health.groups.yahoo.com/group/BrainSurgery/polls







        [Non-text portions of this message have been removed]



        ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE IN THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***

        Community email addresses:
        Post message: BrainSurgery@...
        Subscribe: http://groups.yahoo.com/group/BrainSurgery
        Unsubscribe: Trisha4080@...
        List owner: Trisha4080@...

        Shortcut URL to this page:
        http://health.groups.yahoo.com/group/BrainSurgery



        ---------------------------------
        Yahoo! Groups Links

        To visit your group on the web, go to:
        http://groups.yahoo.com/group/BrainSurgery/

        To unsubscribe from this group, send an email to:
        BrainSurgery-unsubscribe@yahoogroups.com

        Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



        ---------------------------------
        Do you Yahoo!?
        Yahoo! Mail - Helps protect you from nasty viruses.

        [Non-text portions of this message have been removed]



        ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE IN THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***

        Community email addresses:
        Post message: BrainSurgery@...
        Subscribe: http://groups.yahoo.com/group/BrainSurgery
        Unsubscribe: Trisha4080@...
        List owner: Trisha4080@...

        Shortcut URL to this page:
        http://health.groups.yahoo.com/group/BrainSurgery


        Yahoo! Groups SponsorADVERTISEMENT


        ---------------------------------
        Yahoo! Groups Links

        To visit your group on the web, go to:
        http://groups.yahoo.com/group/BrainSurgery/

        To unsubscribe from this group, send an email to:
        BrainSurgery-unsubscribe@yahoogroups.com

        Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



        Billi Banks




        ---------------------------------
        Celebrate Yahoo!'s 10th Birthday!
        Yahoo! Netrospective: 100 Moments of the Web

        [Non-text portions of this message have been removed]



        ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE IN THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***

        The BrainSurgery@Yahoo website is not a substitute for medical advice: THIS WEBSITE IS NOT DESIGNED TO, AND DOES NOT, PROVIDE MEDICAL ADVICE. All content, including text, graphics, images, and information, available on or through this Web site ("content") are for general informational and support purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis or treatment. NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE, OR DELAY IN SEEKING IT, BECAUSE OF SOMETHING YOU HAVE READ ON THIS WEB SITE. NEVER RELY ON INFORMATION ON THIS WEB SITE IN PLACE OF SEEKING PROFESSIONAL MEDICAL ADVICE.

        Community email addresses:
        Post message: BrainSurgery@...
        Subscribe: http://groups.yahoo.com/group/BrainSurgery
        Unsubscribe: Trisha4080@...
        List owner: Trisha4080@...

        Shortcut URL to this page:
        http://health.groups.yahoo.com/group/BrainSurgery


        Yahoo! Groups SponsorADVERTISEMENT


        ---------------------------------
        Yahoo! Groups Links

        To visit your group on the web, go to:
        http://groups.yahoo.com/group/BrainSurgery/

        To unsubscribe from this group, send an email to:
        BrainSurgery-unsubscribe@yahoogroups.com

        Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



        ---------------------------------
        Celebrate Yahoo!'s 10th Birthday!
        Yahoo! Netrospective: 100 Moments of the Web

        [Non-text portions of this message have been removed]
      • Patsy
        Trisha, You have walked the positive and that is what is special. Terminal brain tumor patient. Patsy b ... From: Bruce Blount [mailto:brub58@yahoo.com] Sent:
        Message 3 of 8 , Mar 6, 2005
          Trisha,
          You have walked the positive and that is what is special. Terminal brain
          tumor patient.
          Patsy b

          -----Original Message-----
          From: Bruce Blount [mailto:brub58@...]
          Sent: Friday, March 04, 2005 10:16 PM
          To: BrainSurgery@yahoogroups.com
          Subject: Re: [BrainSurgery] Message from member



          Hi Billie!
          I don't get on this one too often either. Anyhow, "HI"! Bruce

          chosen 1 <drlnclemntyn69@...> wrote:
          Hey Bruce!!!
          I just noticed your name. I belong to the ependy group that you
          moderate!!! I guess i don't keep up w/ this one like I do the other :o)
          Just wanted to say "HI" Billi Banks 4th vent ependy w/ "probable" 100%
          resection March 2004

          Bruce Blount <brub58@...> wrote:
          Just a thought here -
          As some of us were pessimistic before the tumor, some of us were
          optimistic. The tumor did not change that, those makeups decide our
          opinions.
          I may be wrong...
          Bruce, 4th ventricle surgery & radiation, '95

          Patricia Williams <trisha4080@...> wrote:


          I received this email today from a member of our list. She's given me
          her permission to post it to the group so other people could jump in and
          we would all benefit from a group discussion. My nursing qualifications
          help me in some ways in this list. But for a post like this, it's my
          experiences as a brain tumor patient and survivor that I draw from. So
          we have many experts in here...



          Here's her post: (exerpts)



          "...I know that virtually every person (patient) on this list had their
          lives changed (for the worse) with whatever experience they experienced
          with their illness. I was just wondering if many people were able to get
          back to any normal kind of life. Do they help people get back into any
          kind of routine/career after their illness with any kind of
          rehabilitation? Would occupational therapy have helped? Since you are a
          registered nurse, (and a
          surviver) I believe; I thought you might be the best person to tell me.
          I have had a lot of heartache about this for almost 16 yrs, which to me
          is a very, very long time. I also feel it is the loss of the whole
          person I could have been that I am grieving, and I just don't know how
          to get over it. I don't know how asking you this question will change
          anything, but I hope even writing this down will get some of my hurt and
          frustration out of my system.



          ... They literally just sent me back to live (or die) as they didn't
          give my parents and I any name for any kind of help, but left it up to
          us to do whatever we thought was best. I know there was a brain injury
          support group that had started by that time, as I found it ten yrs after
          I had the ops; (without any help from them) but I found that I didn't
          "fit in" there either, as those people were much, much worse off than I
          was ten yrs after the surgery, and most of them were retarded, which is
          something I quite obviously am not.



          ... I was 17 yrs old when I had the two ops and I will be 33. I feel
          that is a lot of yrs I lost. Anyway; trying my best to go on, I guess...
          thank you for reading this e-mail. "



          My reply to the post:



          I agree with you that every person on this list (patients, families and
          friends) have had their lives changed forever. Some of the changes were
          bad, but some were actually good Most people I have spoken to agree
          with
          me that there is a silver lining in this cloud. For me, I find I am
          more patient, more relaxed, and most of all, I now live in the "present
          moment" and don't analyze everything I've said or should have said or
          let things bother me the way I used to (since I usually can't
          remember!). I appreciate
          things so much more. My daughter, my husband, everything. I know it's
          harder for many of us to process our thoughts, concentrate, organize,
          speak, be around noise and lots of people; but, I truly would say the
          positive has outweighed the negative. I mention this because in the
          above post it was mentioned that people had had their lives changed for
          the worst. I am afraid that we often focus on the bad things and don't
          take the time to really focus on some of the positives; but I do believe
          most of us feel that those positives are definitely there. Maybe we
          need to talk about them more.



          And there's that word again... "NORMAL". Volumes could be written about
          that word and what it means. I have come to understand that "normal"
          solely depends on WHO you're talking about. In this list, I would say
          it's normal to have had brain surgery or a brain tumor affect your life.
          That's not normal in our community! But here, it definitely is. So, I
          believe we have to learn to adapt to a new normal when we enter this
          experience. This, I believe, was one of the biggest hurdles for me. I
          could relearn to walk, talk and use my hand. My goals were clearly
          defined, I was on a mission. But, to redefine yourself - THAT is
          difficult. Very difficult.



          And for me, that's what it took. Redefining myself and accepting myself
          as a new person. Not as smart as before. Capabilities more limited.
          But in many ways, I had insights I never would have had otherwise. Any
          of you used to be impatient with slow learners??? I was. I always
          thought some people just didn't try hard enough. Now that I've seen the
          other side, I know
          better. New limitations. It took "this" to cause me to realize how
          some
          of the things I took for granted were actually gifts. And now, another
          very unique gift: being been able to live my life as two separate
          "selves", two totally different perspectives. How many people get to do
          that? There is a new person inside my head now. The old one is gone.
          I resisted getting to know her and giving her a chance. It took some
          mourning for the loss of the old "self". But once I did that, the whole
          world opened up to me in a much brighter way.



          So, in a way you are right when you say you are "grieving the loss of a
          person." But, if you continue to grieve the loss of the person you
          "could have been", what's going to happen to the person you ARE now.
          It's important to learn to get to know that person, the one you are now.
          Kind of exciting actually. Maybe even try the support group thing
          again. There are four people in the one I'm going to and none of them
          are intellectually retarded. Maybe you'd benefit from that.



          Lastly (I wanted to make sure I covered your many questions/comments),
          you are so right about the lacking follow-up for post operative or post
          diagnosis brain tumor patients. Unfortunately, we cannot change what
          happened to us - but we can continue to learn what needs to be done and
          help to improve those areas for future patients. (take the polls, for
          one!). We are going to make a difference in the area of identifying
          patients needs and helping to educate medical professionals and the
          community by being catalysts for change.



          You're going to do fine. FYI for others reading this, this member has
          been happily married for two years now, plans to start a family next
          year, and is very creative and artistic. You just need to get to know
          yourself better and I expect you will see much improvement in the way
          you feel. And, by all means, if getting your hurt and frustration out
          helps you work through this, then keep on posting! This is not an easy
          transition, but it is well worth the work it takes. You hang in there.



          Sorry this was so long everybody... it was kind of hard to "nutshell"
          it.



          All my best,

          Trisha

          Trisha Williams, R.N.

          BrainSurgery@Yahoo Group Founder/Moderator

          4.8 cm meningioma left frontal/parietal/temporal lobes resected 5/3/99

          Living, laughing and loving better than ever!

          HAVE YOU VOTED IN THE POLLS???? CHECK THEM OUT:
          http://health.groups.yahoo.com/group/BrainSurgery/polls







          [Non-text portions of this message have been removed]



          ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE IN
          THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***

          Community email addresses:
          Post message: BrainSurgery@...
          Subscribe: http://groups.yahoo.com/group/BrainSurgery
          Unsubscribe: Trisha4080@...
          List owner: Trisha4080@...

          Shortcut URL to this page:
          http://health.groups.yahoo.com/group/BrainSurgery



          ---------------------------------
          Yahoo! Groups Links

          To visit your group on the web, go to:
          http://groups.yahoo.com/group/BrainSurgery/

          To unsubscribe from this group, send an email to:
          BrainSurgery-unsubscribe@yahoogroups.com

          Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



          ---------------------------------
          Do you Yahoo!?
          Yahoo! Mail - Helps protect you from nasty viruses.

          [Non-text portions of this message have been removed]



          ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE IN
          THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***

          Community email addresses:
          Post message: BrainSurgery@...
          Subscribe: http://groups.yahoo.com/group/BrainSurgery
          Unsubscribe: Trisha4080@...
          List owner: Trisha4080@...

          Shortcut URL to this page:
          http://health.groups.yahoo.com/group/BrainSurgery


          Yahoo! Groups SponsorADVERTISEMENT


          ---------------------------------
          Yahoo! Groups Links

          To visit your group on the web, go to:
          http://groups.yahoo.com/group/BrainSurgery/

          To unsubscribe from this group, send an email to:
          BrainSurgery-unsubscribe@yahoogroups.com

          Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



          Billi Banks




          ---------------------------------
          Celebrate Yahoo!'s 10th Birthday!
          Yahoo! Netrospective: 100 Moments of the Web

          [Non-text portions of this message have been removed]



          ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE IN
          THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***

          The BrainSurgery@Yahoo website is not a substitute for medical advice:
          THIS WEBSITE IS NOT DESIGNED TO, AND DOES NOT, PROVIDE MEDICAL ADVICE.
          All content, including text, graphics, images, and information,
          available on or through this Web site ("content") are for general
          informational and support purposes only. The content is not intended to
          be a substitute for professional medical advice, diagnosis or treatment.
          NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE, OR DELAY IN SEEKING IT,
          BECAUSE OF SOMETHING YOU HAVE READ ON THIS WEB SITE. NEVER RELY ON
          INFORMATION ON THIS WEB SITE IN PLACE OF SEEKING PROFESSIONAL MEDICAL
          ADVICE.

          Community email addresses:
          Post message: BrainSurgery@...
          Subscribe: http://groups.yahoo.com/group/BrainSurgery
          Unsubscribe: Trisha4080@...
          List owner: Trisha4080@...

          Shortcut URL to this page:
          http://health.groups.yahoo.com/group/BrainSurgery


          Yahoo! Groups SponsorADVERTISEMENT


          ---------------------------------
          Yahoo! Groups Links

          To visit your group on the web, go to:
          http://groups.yahoo.com/group/BrainSurgery/

          To unsubscribe from this group, send an email to:
          BrainSurgery-unsubscribe@yahoogroups.com

          Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



          ---------------------------------
          Celebrate Yahoo!'s 10th Birthday!
          Yahoo! Netrospective: 100 Moments of the Web

          [Non-text portions of this message have been removed]




          ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE IN
          THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***

          The BrainSurgery@Yahoo website is not a substitute for medical advice:
          THIS WEBSITE IS NOT DESIGNED TO, AND DOES NOT, PROVIDE MEDICAL ADVICE.
          All content, including text, graphics, images, and information,
          available on or through this Web site ("content") are for general
          informational and support purposes only. The content is not intended to
          be a substitute for professional medical advice, diagnosis or treatment.
          NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE, OR DELAY IN SEEKING IT,
          BECAUSE OF SOMETHING YOU HAVE READ ON THIS WEB SITE. NEVER RELY ON
          INFORMATION ON THIS WEB SITE IN PLACE OF SEEKING PROFESSIONAL MEDICAL
          ADVICE.

          Community email addresses:
          Post message: BrainSurgery@...
          Subscribe: http://groups.yahoo.com/group/BrainSurgery
          Unsubscribe: Trisha4080@...
          List owner: Trisha4080@...

          Shortcut URL to this page:
          http://health.groups.yahoo.com/group/BrainSurgery
          Yahoo! Groups Links
        • Patricia Williams
          Patsy, Your words are kind, but I realize I am also very lucky. Although there is chance for recurrence, my tumor has not recurred. I can only speak from my
          Message 4 of 8 , Mar 7, 2005
            Patsy,



            Your words are kind, but I realize I am also very lucky. Although there is
            chance for recurrence, my tumor has not recurred. I can only speak from my
            own experiences.



            I try to be positive but, like everyone else, there are down days.
            Frustrations, limitations re-presenting themselves, etc.. I know we can't
            control what happens to us or what other people do or say. But I like to
            try to remember one of the things we CAN control is how we react and
            internalize our responses to those external situations. These internal
            feelings and responses, I believe, can directly affect our health, even if
            just minutely. We need to do what we can to keep our immune systems at
            maximum efficiency.



            Today, for me, it's the wonderful aroma of Italian Tomato Sauce simmering on
            the stove... :-)



            Trisha















            _____

            From: Patsy [mailto:pbmoffitt2001@...]
            Sent: Sunday, March 06, 2005 1:27 PM
            To: BrainSurgery@yahoogroups.com
            Subject: RE: [BrainSurgery] Message from member



            Trisha,
            You have walked the positive and that is what is special. Terminal brain
            tumor patient.
            Patsy b

            -----Original Message-----
            From: Bruce Blount [mailto:brub58@...]
            Sent: Friday, March 04, 2005 10:16 PM
            To: BrainSurgery@yahoogroups.com
            Subject: Re: [BrainSurgery] Message from member



            Hi Billie!
            I don't get on this one too often either. Anyhow, "HI"! Bruce

            chosen 1 <drlnclemntyn69@...> wrote:
            Hey Bruce!!!
            I just noticed your name. I belong to the ependy group that you
            moderate!!! I guess i don't keep up w/ this one like I do the other :o)
            Just wanted to say "HI" Billi Banks 4th vent ependy w/ "probable" 100%
            resection March 2004

            Bruce Blount <brub58@...> wrote:
            Just a thought here -
            As some of us were pessimistic before the tumor, some of us were
            optimistic. The tumor did not change that, those makeups decide our
            opinions.
            I may be wrong...
            Bruce, 4th ventricle surgery & radiation, '95

            Patricia Williams <trisha4080@...> wrote:


            I received this email today from a member of our list. She's given me
            her permission to post it to the group so other people could jump in and
            we would all benefit from a group discussion. My nursing qualifications
            help me in some ways in this list. But for a post like this, it's my
            experiences as a brain tumor patient and survivor that I draw from. So
            we have many experts in here...



            Here's her post: (exerpts)



            "...I know that virtually every person (patient) on this list had their
            lives changed (for the worse) with whatever experience they experienced
            with their illness. I was just wondering if many people were able to get
            back to any normal kind of life. Do they help people get back into any
            kind of routine/career after their illness with any kind of
            rehabilitation? Would occupational therapy have helped? Since you are a
            registered nurse, (and a
            surviver) I believe; I thought you might be the best person to tell me.
            I have had a lot of heartache about this for almost 16 yrs, which to me
            is a very, very long time. I also feel it is the loss of the whole
            person I could have been that I am grieving, and I just don't know how
            to get over it. I don't know how asking you this question will change
            anything, but I hope even writing this down will get some of my hurt and
            frustration out of my system.



            ... They literally just sent me back to live (or die) as they didn't
            give my parents and I any name for any kind of help, but left it up to
            us to do whatever we thought was best. I know there was a brain injury
            support group that had started by that time, as I found it ten yrs after
            I had the ops; (without any help from them) but I found that I didn't
            "fit in" there either, as those people were much, much worse off than I
            was ten yrs after the surgery, and most of them were retarded, which is
            something I quite obviously am not.



            ... I was 17 yrs old when I had the two ops and I will be 33. I feel
            that is a lot of yrs I lost. Anyway; trying my best to go on, I guess...
            thank you for reading this e-mail. "



            My reply to the post:



            I agree with you that every person on this list (patients, families and
            friends) have had their lives changed forever. Some of the changes were
            bad, but some were actually good Most people I have spoken to agree
            with
            me that there is a silver lining in this cloud. For me, I find I am
            more patient, more relaxed, and most of all, I now live in the "present
            moment" and don't analyze everything I've said or should have said or
            let things bother me the way I used to (since I usually can't
            remember!). I appreciate
            things so much more. My daughter, my husband, everything. I know it's
            harder for many of us to process our thoughts, concentrate, organize,
            speak, be around noise and lots of people; but, I truly would say the
            positive has outweighed the negative. I mention this because in the
            above post it was mentioned that people had had their lives changed for
            the worst. I am afraid that we often focus on the bad things and don't
            take the time to really focus on some of the positives; but I do believe
            most of us feel that those positives are definitely there. Maybe we
            need to talk about them more.



            And there's that word again... "NORMAL". Volumes could be written about
            that word and what it means. I have come to understand that "normal"
            solely depends on WHO you're talking about. In this list, I would say
            it's normal to have had brain surgery or a brain tumor affect your life.
            That's not normal in our community! But here, it definitely is. So, I
            believe we have to learn to adapt to a new normal when we enter this
            experience. This, I believe, was one of the biggest hurdles for me. I
            could relearn to walk, talk and use my hand. My goals were clearly
            defined, I was on a mission. But, to redefine yourself - THAT is
            difficult. Very difficult.



            And for me, that's what it took. Redefining myself and accepting myself
            as a new person. Not as smart as before. Capabilities more limited.
            But in many ways, I had insights I never would have had otherwise. Any
            of you used to be impatient with slow learners??? I was. I always
            thought some people just didn't try hard enough. Now that I've seen the
            other side, I know
            better. New limitations. It took "this" to cause me to realize how
            some
            of the things I took for granted were actually gifts. And now, another
            very unique gift: being been able to live my life as two separate
            "selves", two totally different perspectives. How many people get to do
            that? There is a new person inside my head now. The old one is gone.
            I resisted getting to know her and giving her a chance. It took some
            mourning for the loss of the old "self". But once I did that, the whole
            world opened up to me in a much brighter way.



            So, in a way you are right when you say you are "grieving the loss of a
            person." But, if you continue to grieve the loss of the person you
            "could have been", what's going to happen to the person you ARE now.
            It's important to learn to get to know that person, the one you are now.
            Kind of exciting actually. Maybe even try the support group thing
            again. There are four people in the one I'm going to and none of them
            are intellectually retarded. Maybe you'd benefit from that.



            Lastly (I wanted to make sure I covered your many questions/comments),
            you are so right about the lacking follow-up for post operative or post
            diagnosis brain tumor patients. Unfortunately, we cannot change what
            happened to us - but we can continue to learn what needs to be done and
            help to improve those areas for future patients. (take the polls, for
            one!). We are going to make a difference in the area of identifying
            patients needs and helping to educate medical professionals and the
            community by being catalysts for change.



            You're going to do fine. FYI for others reading this, this member has
            been happily married for two years now, plans to start a family next
            year, and is very creative and artistic. You just need to get to know
            yourself better and I expect you will see much improvement in the way
            you feel. And, by all means, if getting your hurt and frustration out
            helps you work through this, then keep on posting! This is not an easy
            transition, but it is well worth the work it takes. You hang in there.



            Sorry this was so long everybody... it was kind of hard to "nutshell"
            it.



            All my best,

            Trisha

            Trisha Williams, R.N.

            BrainSurgery@Yahoo Group Founder/Moderator

            4.8 cm meningioma left frontal/parietal/temporal lobes resected 5/3/99

            Living, laughing and loving better than ever!

            HAVE YOU VOTED IN THE POLLS???? CHECK THEM OUT:
            http://health.groups.yahoo.com/group/BrainSurgery/polls







            [Non-text portions of this message have been removed]



            ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE IN
            THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***

            Community email addresses:
            Post message: BrainSurgery@...
            Subscribe: http://groups.yahoo.com/group/BrainSurgery
            Unsubscribe: Trisha4080@...
            List owner: Trisha4080@...

            Shortcut URL to this page:
            http://health.groups.yahoo.com/group/BrainSurgery



            ---------------------------------
            Yahoo! Groups Links

            To visit your group on the web, go to:
            http://groups.yahoo.com/group/BrainSurgery/

            To unsubscribe from this group, send an email to:
            BrainSurgery-unsubscribe@yahoogroups.com

            Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



            ---------------------------------
            Do you Yahoo!?
            Yahoo! Mail - Helps protect you from nasty viruses.

            [Non-text portions of this message have been removed]



            ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE IN
            THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***

            Community email addresses:
            Post message: BrainSurgery@...
            Subscribe: http://groups.yahoo.com/group/BrainSurgery
            Unsubscribe: Trisha4080@...
            List owner: Trisha4080@...

            Shortcut URL to this page:
            http://health.groups.yahoo.com/group/BrainSurgery


            Yahoo! Groups SponsorADVERTISEMENT


            ---------------------------------
            Yahoo! Groups Links

            To visit your group on the web, go to:
            http://groups.yahoo.com/group/BrainSurgery/

            To unsubscribe from this group, send an email to:
            BrainSurgery-unsubscribe@yahoogroups.com

            Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



            Billi Banks




            ---------------------------------
            Celebrate Yahoo!'s 10th Birthday!
            Yahoo! Netrospective: 100 Moments of the Web

            [Non-text portions of this message have been removed]



            ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE IN
            THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***

            The BrainSurgery@Yahoo website is not a substitute for medical advice:
            THIS WEBSITE IS NOT DESIGNED TO, AND DOES NOT, PROVIDE MEDICAL ADVICE.
            All content, including text, graphics, images, and information,
            available on or through this Web site ("content") are for general
            informational and support purposes only. The content is not intended to
            be a substitute for professional medical advice, diagnosis or treatment.
            NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE, OR DELAY IN SEEKING IT,
            BECAUSE OF SOMETHING YOU HAVE READ ON THIS WEB SITE. NEVER RELY ON
            INFORMATION ON THIS WEB SITE IN PLACE OF SEEKING PROFESSIONAL MEDICAL
            ADVICE.

            Community email addresses:
            Post message: BrainSurgery@...
            Subscribe: http://groups.yahoo.com/group/BrainSurgery
            Unsubscribe: Trisha4080@...
            List owner: Trisha4080@...

            Shortcut URL to this page:
            http://health.groups.yahoo.com/group/BrainSurgery


            Yahoo! Groups SponsorADVERTISEMENT


            ---------------------------------
            Yahoo! Groups Links

            To visit your group on the web, go to:
            http://groups.yahoo.com/group/BrainSurgery/

            To unsubscribe from this group, send an email to:
            BrainSurgery-unsubscribe@yahoogroups.com

            Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



            ---------------------------------
            Celebrate Yahoo!'s 10th Birthday!
            Yahoo! Netrospective: 100 Moments of the Web

            [Non-text portions of this message have been removed]




            ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE IN
            THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***

            The BrainSurgery@Yahoo website is not a substitute for medical advice:
            THIS WEBSITE IS NOT DESIGNED TO, AND DOES NOT, PROVIDE MEDICAL ADVICE.
            All content, including text, graphics, images, and information,
            available on or through this Web site ("content") are for general
            informational and support purposes only. The content is not intended to
            be a substitute for professional medical advice, diagnosis or treatment.
            NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE, OR DELAY IN SEEKING IT,
            BECAUSE OF SOMETHING YOU HAVE READ ON THIS WEB SITE. NEVER RELY ON
            INFORMATION ON THIS WEB SITE IN PLACE OF SEEKING PROFESSIONAL MEDICAL
            ADVICE.

            Community email addresses:
            Post message: BrainSurgery@...
            Subscribe: http://groups.yahoo.com/group/BrainSurgery
            Unsubscribe: Trisha4080@...
            List owner: Trisha4080@...

            Shortcut URL to this page:
            http://health.groups.yahoo.com/group/BrainSurgery
            Yahoo! Groups Links











            ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE IN THE
            PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***

            The BrainSurgery@Yahoo website is not a substitute for medical advice: THIS
            WEBSITE IS NOT DESIGNED TO, AND DOES NOT, PROVIDE MEDICAL ADVICE. All
            content, including text, graphics, images, and information, available on or
            through this Web site ("content") are for general informational and support
            purposes only. The content is not intended to be a substitute for
            professional medical advice, diagnosis or treatment. NEVER DISREGARD
            PROFESSIONAL MEDICAL ADVICE, OR DELAY IN SEEKING IT, BECAUSE OF SOMETHING
            YOU HAVE READ ON THIS WEB SITE. NEVER RELY ON INFORMATION ON THIS WEB SITE
            IN PLACE OF SEEKING PROFESSIONAL MEDICAL ADVICE.

            Community email addresses:
            Post message: BrainSurgery@...
            Subscribe: http://groups.yahoo.com/group/BrainSurgery
            Unsubscribe: Trisha4080@...
            List owner: Trisha4080@...

            Shortcut URL to this page:
            http://health.groups.yahoo.com/group/BrainSurgery






            Yahoo! Groups Sponsor



            ADVERTISEMENT

            <http://us.ard.yahoo.com/SIG=12cnsq5es/M=298184.6018725.7038619.3001176/D=gr
            phealth/S=1707507923:HM/EXP=1110222427/A=2593423/R=0/SIG=11el9gslf/*http:/ww
            w.netflix.com/Default?mqso=60190075> click here



            <http://us.adserver.yahoo.com/l?M=298184.6018725.7038619.3001176/D=grphealth
            /S=:HM/A=2593423/rand=630104868>



            _____

            Yahoo! Groups Links

            * To visit your group on the web, go to:
            http://groups.yahoo.com/group/BrainSurgery/

            * To unsubscribe from this group, send an email to:
            BrainSurgery-unsubscribe@yahoogroups.com
            <mailto:BrainSurgery-unsubscribe@yahoogroups.com?subject=Unsubscribe>

            * Your use of Yahoo! Groups is subject to the Yahoo!
            <http://docs.yahoo.com/info/terms/> Terms of Service.



            [Non-text portions of this message have been removed]
          • Patsy
            Trish, My favorite sauce!! You could not of stated it more beautifully then you did. For that is the truth. Sometimes I get so frustrated with myself I want
            Message 5 of 8 , Mar 7, 2005
              Trish,
              My favorite sauce!! You could not of stated it more beautifully then
              you did. For that is the truth. Sometimes I get so frustrated with
              myself I want to explode, then I realize how stupid that would look. I
              have been speaking from my own as well. And Pray no one else walks in
              my shoes. Have a good day.
              Always
              Patsy B

              -----Original Message-----
              From: Patricia Williams [mailto:trisha4080@...]
              Sent: Monday, March 07, 2005 3:10 PM
              To: BrainSurgery@yahoogroups.com
              Subject: RE: [BrainSurgery] Message



              Patsy,



              Your words are kind, but I realize I am also very lucky. Although there
              is chance for recurrence, my tumor has not recurred. I can only speak
              from my own experiences.



              I try to be positive but, like everyone else, there are down days.
              Frustrations, limitations re-presenting themselves, etc.. I know we
              can't control what happens to us or what other people do or say. But I
              like to try to remember one of the things we CAN control is how we react
              and internalize our responses to those external situations. These
              internal feelings and responses, I believe, can directly affect our
              health, even if just minutely. We need to do what we can to keep our
              immune systems at maximum efficiency.



              Today, for me, it's the wonderful aroma of Italian Tomato Sauce
              simmering on the stove... :-)



              Trisha















              _____

              From: Patsy [mailto:pbmoffitt2001@...]
              Sent: Sunday, March 06, 2005 1:27 PM
              To: BrainSurgery@yahoogroups.com
              Subject: RE: [BrainSurgery] Message from member



              Trisha,
              You have walked the positive and that is what is special. Terminal brain
              tumor patient. Patsy b

              -----Original Message-----
              From: Bruce Blount [mailto:brub58@...]
              Sent: Friday, March 04, 2005 10:16 PM
              To: BrainSurgery@yahoogroups.com
              Subject: Re: [BrainSurgery] Message from member



              Hi Billie!
              I don't get on this one too often either. Anyhow, "HI"! Bruce

              chosen 1 <drlnclemntyn69@...> wrote:
              Hey Bruce!!!
              I just noticed your name. I belong to the ependy group that you
              moderate!!! I guess i don't keep up w/ this one like I do the other :o)
              Just wanted to say "HI" Billi Banks 4th vent ependy w/ "probable" 100%
              resection March 2004

              Bruce Blount <brub58@...> wrote:
              Just a thought here -
              As some of us were pessimistic before the tumor, some of us were
              optimistic. The tumor did not change that, those makeups decide our
              opinions.
              I may be wrong...
              Bruce, 4th ventricle surgery & radiation, '95

              Patricia Williams <trisha4080@...> wrote:


              I received this email today from a member of our list. She's given me
              her permission to post it to the group so other people could jump in and
              we would all benefit from a group discussion. My nursing qualifications
              help me in some ways in this list. But for a post like this, it's my
              experiences as a brain tumor patient and survivor that I draw from. So
              we have many experts in here...



              Here's her post: (exerpts)



              "...I know that virtually every person (patient) on this list had their
              lives changed (for the worse) with whatever experience they experienced
              with their illness. I was just wondering if many people were able to get
              back to any normal kind of life. Do they help people get back into any
              kind of routine/career after their illness with any kind of
              rehabilitation? Would occupational therapy have helped? Since you are a
              registered nurse, (and a
              surviver) I believe; I thought you might be the best person to tell me.
              I have had a lot of heartache about this for almost 16 yrs, which to me
              is a very, very long time. I also feel it is the loss of the whole
              person I could have been that I am grieving, and I just don't know how
              to get over it. I don't know how asking you this question will change
              anything, but I hope even writing this down will get some of my hurt and
              frustration out of my system.



              ... They literally just sent me back to live (or die) as they didn't
              give my parents and I any name for any kind of help, but left it up to
              us to do whatever we thought was best. I know there was a brain injury
              support group that had started by that time, as I found it ten yrs after
              I had the ops; (without any help from them) but I found that I didn't
              "fit in" there either, as those people were much, much worse off than I
              was ten yrs after the surgery, and most of them were retarded, which is
              something I quite obviously am not.



              ... I was 17 yrs old when I had the two ops and I will be 33. I feel
              that is a lot of yrs I lost. Anyway; trying my best to go on, I guess...
              thank you for reading this e-mail. "



              My reply to the post:



              I agree with you that every person on this list (patients, families and
              friends) have had their lives changed forever. Some of the changes were
              bad, but some were actually good Most people I have spoken to agree
              with
              me that there is a silver lining in this cloud. For me, I find I am
              more patient, more relaxed, and most of all, I now live in the "present
              moment" and don't analyze everything I've said or should have said or
              let things bother me the way I used to (since I usually can't
              remember!). I appreciate
              things so much more. My daughter, my husband, everything. I know it's
              harder for many of us to process our thoughts, concentrate, organize,
              speak, be around noise and lots of people; but, I truly would say the
              positive has outweighed the negative. I mention this because in the
              above post it was mentioned that people had had their lives changed for
              the worst. I am afraid that we often focus on the bad things and don't
              take the time to really focus on some of the positives; but I do believe
              most of us feel that those positives are definitely there. Maybe we
              need to talk about them more.



              And there's that word again... "NORMAL". Volumes could be written about
              that word and what it means. I have come to understand that "normal"
              solely depends on WHO you're talking about. In this list, I would say
              it's normal to have had brain surgery or a brain tumor affect your life.
              That's not normal in our community! But here, it definitely is. So, I
              believe we have to learn to adapt to a new normal when we enter this
              experience. This, I believe, was one of the biggest hurdles for me. I
              could relearn to walk, talk and use my hand. My goals were clearly
              defined, I was on a mission. But, to redefine yourself - THAT is
              difficult. Very difficult.



              And for me, that's what it took. Redefining myself and accepting myself
              as a new person. Not as smart as before. Capabilities more limited.
              But in many ways, I had insights I never would have had otherwise. Any
              of you used to be impatient with slow learners??? I was. I always
              thought some people just didn't try hard enough. Now that I've seen the
              other side, I know
              better. New limitations. It took "this" to cause me to realize how
              some
              of the things I took for granted were actually gifts. And now, another
              very unique gift: being been able to live my life as two separate
              "selves", two totally different perspectives. How many people get to do
              that? There is a new person inside my head now. The old one is gone. I
              resisted getting to know her and giving her a chance. It took some
              mourning for the loss of the old "self". But once I did that, the whole
              world opened up to me in a much brighter way.



              So, in a way you are right when you say you are "grieving the loss of a
              person." But, if you continue to grieve the loss of the person you
              "could have been", what's going to happen to the person you ARE now.
              It's important to learn to get to know that person, the one you are now.
              Kind of exciting actually. Maybe even try the support group thing
              again. There are four people in the one I'm going to and none of them
              are intellectually retarded. Maybe you'd benefit from that.



              Lastly (I wanted to make sure I covered your many questions/comments),
              you are so right about the lacking follow-up for post operative or post
              diagnosis brain tumor patients. Unfortunately, we cannot change what
              happened to us - but we can continue to learn what needs to be done and
              help to improve those areas for future patients. (take the polls, for
              one!). We are going to make a difference in the area of identifying
              patients needs and helping to educate medical professionals and the
              community by being catalysts for change.



              You're going to do fine. FYI for others reading this, this member has
              been happily married for two years now, plans to start a family next
              year, and is very creative and artistic. You just need to get to know
              yourself better and I expect you will see much improvement in the way
              you feel. And, by all means, if getting your hurt and frustration out
              helps you work through this, then keep on posting! This is not an easy
              transition, but it is well worth the work it takes. You hang in there.



              Sorry this was so long everybody... it was kind of hard to "nutshell"
              it.



              All my best,

              Trisha

              Trisha Williams, R.N.

              BrainSurgery@Yahoo Group Founder/Moderator

              4.8 cm meningioma left frontal/parietal/temporal lobes resected 5/3/99

              Living, laughing and loving better than ever!

              HAVE YOU VOTED IN THE POLLS???? CHECK THEM OUT:
              http://health.groups.yahoo.com/group/BrainSurgery/polls







              [Non-text portions of this message have been removed]



              ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE IN
              THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***

              Community email addresses:
              Post message: BrainSurgery@...
              Subscribe: http://groups.yahoo.com/group/BrainSurgery
              Unsubscribe: Trisha4080@...
              List owner: Trisha4080@...

              Shortcut URL to this page:
              http://health.groups.yahoo.com/group/BrainSurgery



              ---------------------------------
              Yahoo! Groups Links

              To visit your group on the web, go to:
              http://groups.yahoo.com/group/BrainSurgery/

              To unsubscribe from this group, send an email to:
              BrainSurgery-unsubscribe@yahoogroups.com

              Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



              ---------------------------------
              Do you Yahoo!?
              Yahoo! Mail - Helps protect you from nasty viruses.

              [Non-text portions of this message have been removed]



              ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE IN
              THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***

              Community email addresses:
              Post message: BrainSurgery@...
              Subscribe: http://groups.yahoo.com/group/BrainSurgery
              Unsubscribe: Trisha4080@...
              List owner: Trisha4080@...

              Shortcut URL to this page:
              http://health.groups.yahoo.com/group/BrainSurgery


              Yahoo! Groups SponsorADVERTISEMENT


              ---------------------------------
              Yahoo! Groups Links

              To visit your group on the web, go to:
              http://groups.yahoo.com/group/BrainSurgery/

              To unsubscribe from this group, send an email to:
              BrainSurgery-unsubscribe@yahoogroups.com

              Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



              Billi Banks




              ---------------------------------
              Celebrate Yahoo!'s 10th Birthday!
              Yahoo! Netrospective: 100 Moments of the Web

              [Non-text portions of this message have been removed]



              ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE IN
              THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***

              The BrainSurgery@Yahoo website is not a substitute for medical advice:
              THIS WEBSITE IS NOT DESIGNED TO, AND DOES NOT, PROVIDE MEDICAL ADVICE.
              All content, including text, graphics, images, and information,
              available on or through this Web site ("content") are for general
              informational and support purposes only. The content is not intended to
              be a substitute for professional medical advice, diagnosis or treatment.
              NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE, OR DELAY IN SEEKING IT,
              BECAUSE OF SOMETHING YOU HAVE READ ON THIS WEB SITE. NEVER RELY ON
              INFORMATION ON THIS WEB SITE IN PLACE OF SEEKING PROFESSIONAL MEDICAL
              ADVICE.

              Community email addresses:
              Post message: BrainSurgery@...
              Subscribe: http://groups.yahoo.com/group/BrainSurgery
              Unsubscribe: Trisha4080@...
              List owner: Trisha4080@...

              Shortcut URL to this page:
              http://health.groups.yahoo.com/group/BrainSurgery


              Yahoo! Groups SponsorADVERTISEMENT


              ---------------------------------
              Yahoo! Groups Links

              To visit your group on the web, go to:
              http://groups.yahoo.com/group/BrainSurgery/

              To unsubscribe from this group, send an email to:
              BrainSurgery-unsubscribe@yahoogroups.com

              Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



              ---------------------------------
              Celebrate Yahoo!'s 10th Birthday!
              Yahoo! Netrospective: 100 Moments of the Web

              [Non-text portions of this message have been removed]




              ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE IN
              THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***

              The BrainSurgery@Yahoo website is not a substitute for medical advice:
              THIS WEBSITE IS NOT DESIGNED TO, AND DOES NOT, PROVIDE MEDICAL ADVICE.
              All content, including text, graphics, images, and information,
              available on or through this Web site ("content") are for general
              informational and support purposes only. The content is not intended to
              be a substitute for professional medical advice, diagnosis or treatment.
              NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE, OR DELAY IN SEEKING IT,
              BECAUSE OF SOMETHING YOU HAVE READ ON THIS WEB SITE. NEVER RELY ON
              INFORMATION ON THIS WEB SITE IN PLACE OF SEEKING PROFESSIONAL MEDICAL
              ADVICE.

              Community email addresses:
              Post message: BrainSurgery@...
              Subscribe: http://groups.yahoo.com/group/BrainSurgery
              Unsubscribe: Trisha4080@...
              List owner: Trisha4080@...

              Shortcut URL to this page:
              http://health.groups.yahoo.com/group/BrainSurgery
              Yahoo! Groups Links











              ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE IN
              THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***

              The BrainSurgery@Yahoo website is not a substitute for medical advice:
              THIS WEBSITE IS NOT DESIGNED TO, AND DOES NOT, PROVIDE MEDICAL ADVICE.
              All content, including text, graphics, images, and information,
              available on or through this Web site ("content") are for general
              informational and support purposes only. The content is not intended to
              be a substitute for professional medical advice, diagnosis or treatment.
              NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE, OR DELAY IN SEEKING IT,
              BECAUSE OF SOMETHING YOU HAVE READ ON THIS WEB SITE. NEVER RELY ON
              INFORMATION ON THIS WEB SITE IN PLACE OF SEEKING PROFESSIONAL MEDICAL
              ADVICE.

              Community email addresses:
              Post message: BrainSurgery@...
              Subscribe: http://groups.yahoo.com/group/BrainSurgery
              Unsubscribe: Trisha4080@...
              List owner: Trisha4080@...

              Shortcut URL to this page:
              http://health.groups.yahoo.com/group/BrainSurgery






              Yahoo! Groups Sponsor



              ADVERTISEMENT

              <http://us.ard.yahoo.com/SIG=12cnsq5es/M=298184.6018725.7038619.3001176/
              D=gr
              phealth/S=1707507923:HM/EXP=1110222427/A=2593423/R=0/SIG=11el9gslf/*http
              :/ww
              w.netflix.com/Default?mqso=60190075> click here



              <http://us.adserver.yahoo.com/l?M=298184.6018725.7038619.3001176/D=grphe
              alth
              /S=:HM/A=2593423/rand=630104868>



              _____

              Yahoo! Groups Links

              * To visit your group on the web, go to:
              http://groups.yahoo.com/group/BrainSurgery/

              * To unsubscribe from this group, send an email to:
              BrainSurgery-unsubscribe@yahoogroups.com
              <mailto:BrainSurgery-unsubscribe@yahoogroups.com?subject=Unsubscribe>

              * Your use of Yahoo! Groups is subject to the Yahoo!
              <http://docs.yahoo.com/info/terms/> Terms of Service.



              [Non-text portions of this message have been removed]




              ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE IN
              THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***

              The BrainSurgery@Yahoo website is not a substitute for medical advice:
              THIS WEBSITE IS NOT DESIGNED TO, AND DOES NOT, PROVIDE MEDICAL ADVICE.
              All content, including text, graphics, images, and information,
              available on or through this Web site ("content") are for general
              informational and support purposes only. The content is not intended to
              be a substitute for professional medical advice, diagnosis or treatment.
              NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE, OR DELAY IN SEEKING IT,
              BECAUSE OF SOMETHING YOU HAVE READ ON THIS WEB SITE. NEVER RELY ON
              INFORMATION ON THIS WEB SITE IN PLACE OF SEEKING PROFESSIONAL MEDICAL
              ADVICE.

              Community email addresses:
              Post message: BrainSurgery@...
              Subscribe: http://groups.yahoo.com/group/BrainSurgery
              Unsubscribe: Trisha4080@...
              List owner: Trisha4080@...

              Shortcut URL to this page:
              http://health.groups.yahoo.com/group/BrainSurgery
              Yahoo! Groups Links
            Your message has been successfully submitted and would be delivered to recipients shortly.