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How to keep from freaking out in fear?

Forums General Melanoma Community How to keep from freaking out in fear?

  • Post
    Rendergirl
    Participant

      When I was first diagnosed a few months ago, my mom and sister didn't want me coming onto this site because they thought I was just scaring myself with other people's horror stories. I fought them on it and continued coming because I can't fight unless I have info, and I got info and more from all of you. I wouldn't have gotten through my past three surgeries withoutt the people here. BUT…. a little part of what they were afraid of was true.

      When I was first diagnosed a few months ago, my mom and sister didn't want me coming onto this site because they thought I was just scaring myself with other people's horror stories. I fought them on it and continued coming because I can't fight unless I have info, and I got info and more from all of you. I wouldn't have gotten through my past three surgeries withoutt the people here. BUT…. a little part of what they were afraid of was true. Most days are good since I am NED now after my 3rd surgery, but I do have a tumor behind my knee and I have my 4th surgery on that in a few weeks and the chance it might be cancer is scaring me. But like I said, most days are fine. Then there are those days that I read about person after person who's journals I follow are in ICU or in the hospital and not doing good. And someone else posts a tribute video on YouTube… it just hits me like a hammber blow.

      How do you keep from freaking out when it seems all the fighting and the tears and the pain is for nothing? When you feel like no matter what happens, this might really kill you? How do you stop from scaring yourself? How do you stop your heart from breaking over everyone else's battles?

      Just having a bad day I guess. Honestly, I know I should be so happy, I'm NED. There are so many that are SO worse off. Maybe I'm just too empathic… It just doesn't seem fair. I hate melanoma. No one deserves this.

    Viewing 21 reply threads
    • Replies
        gossteach
        Participant

          Hi- my sister-in- law (and best friend) also tried to talk me out of this board a couple of weeks ago for the same reasons. I was taken back by some of the current situations and full of fear for my own….I started worrying about my four children and asking myself all the same questions that you mentioned above. 

          I've only been battling this disease for about 8 months, but this board has helped me learn so much through the experiences of others. I've finally come to the realization that only God knows the plan for me, and each day that I'm given is for a purpose….I can't waste the day worrying, but need to spend it living. Believe me it is hard to do sometimes, but if we truly try to live one day at a time, it will ease the anxiety.  I will keep you in my thoughts and prayers! Know that you are not alone in this:)

          Michelle

          gossteach
          Participant

            Hi- my sister-in- law (and best friend) also tried to talk me out of this board a couple of weeks ago for the same reasons. I was taken back by some of the current situations and full of fear for my own….I started worrying about my four children and asking myself all the same questions that you mentioned above. 

            I've only been battling this disease for about 8 months, but this board has helped me learn so much through the experiences of others. I've finally come to the realization that only God knows the plan for me, and each day that I'm given is for a purpose….I can't waste the day worrying, but need to spend it living. Believe me it is hard to do sometimes, but if we truly try to live one day at a time, it will ease the anxiety.  I will keep you in my thoughts and prayers! Know that you are not alone in this:)

            Michelle

            Carol Taylor
            Participant

              Rendergirl,

              Forgive me, but for me to answer I'm going to have to get a little theological. We're all going to die one day, none of us are promised a next five minutes whether we have melanoma or not. Life is a gift and each day is a gift to cherish.

              We're in an imperfect world. Imperfect bodies that are full of genes, family history, chemicals we breathe and ingest, we're out in modes of transportation doing things with people all around doing their things that might get us killed. Life is a gamble.

              I've buried people before their time and yet they lived a life span and had a full life. I've held parents' hands and known that they shouldn't have been going through these things with their children…that's just not the "natural order" of life. Children are supposed to bury their parents not the other way around…and even the natural order stinks. Life can stink sometimes. Life is a mixed bag and you know that. The problem is, eventually, WE get a hold of one if the universe's bags and what we see other people and families endure becomes what we endure.

              I choose to see the blessings. I can easily do that because I wore a great big "Kick Me Melanoma" sign on my back for decades and thought I was home free. I had the warnings, I knew my family history, I knew the risks and I took them anyway.  Melanoma didn't sneak up and bite me from out of the blue; I threw down the gauntlet and it picked it up and ran with it. I can honestly smile and be sickenly positive and upbeat because I'm damn grateful to be here and I know I don't deserve it.  Some people get mad at melanoma because it tried to kill them. I can't do that. I can only be mad at myself and then want to take a bite out of melanoma so it can't keep hurting others.

              I should be dead by now. I know that, but instead I'm stage 3b and doing great.  When I was in the hospital both times for the surgeries, not knowing what the outcomes would be, I was just like I am now. I have been blessed. God got my attention. I can't help it, it took this to make me fall in love with life and love everyone's life. I have learned so many lessons thanks to this that have changed me and made me better that I feel obligated to try and help others see past this and grow from it. Bitter or better? I choose better. Lemon or lemonade? I choose lemon meringue pie with a shot of lemonade.

              I choose to take this and use it and not let it defeat me. And if it recurs, I'm ready. I know who I am and I'm a child of God. I'm not a victim of melanoma and I will never be a warrior who "loses." I've already won. Melanoma can only do so much. It can't touch who I am.

              Grace and peace,

              Carol

                mom3girlsFL
                Participant

                  Carol,

                  I love you!  Just thought you should hear that today.  You are not only a melanoma warrior, you are a beautiful gift from God to all of us here!

                  Laurie

                  mom3girlsFL
                  Participant

                    Carol,

                    I love you!  Just thought you should hear that today.  You are not only a melanoma warrior, you are a beautiful gift from God to all of us here!

                    Laurie

                  Carol Taylor
                  Participant

                    Rendergirl,

                    Forgive me, but for me to answer I'm going to have to get a little theological. We're all going to die one day, none of us are promised a next five minutes whether we have melanoma or not. Life is a gift and each day is a gift to cherish.

                    We're in an imperfect world. Imperfect bodies that are full of genes, family history, chemicals we breathe and ingest, we're out in modes of transportation doing things with people all around doing their things that might get us killed. Life is a gamble.

                    I've buried people before their time and yet they lived a life span and had a full life. I've held parents' hands and known that they shouldn't have been going through these things with their children…that's just not the "natural order" of life. Children are supposed to bury their parents not the other way around…and even the natural order stinks. Life can stink sometimes. Life is a mixed bag and you know that. The problem is, eventually, WE get a hold of one if the universe's bags and what we see other people and families endure becomes what we endure.

                    I choose to see the blessings. I can easily do that because I wore a great big "Kick Me Melanoma" sign on my back for decades and thought I was home free. I had the warnings, I knew my family history, I knew the risks and I took them anyway.  Melanoma didn't sneak up and bite me from out of the blue; I threw down the gauntlet and it picked it up and ran with it. I can honestly smile and be sickenly positive and upbeat because I'm damn grateful to be here and I know I don't deserve it.  Some people get mad at melanoma because it tried to kill them. I can't do that. I can only be mad at myself and then want to take a bite out of melanoma so it can't keep hurting others.

                    I should be dead by now. I know that, but instead I'm stage 3b and doing great.  When I was in the hospital both times for the surgeries, not knowing what the outcomes would be, I was just like I am now. I have been blessed. God got my attention. I can't help it, it took this to make me fall in love with life and love everyone's life. I have learned so many lessons thanks to this that have changed me and made me better that I feel obligated to try and help others see past this and grow from it. Bitter or better? I choose better. Lemon or lemonade? I choose lemon meringue pie with a shot of lemonade.

                    I choose to take this and use it and not let it defeat me. And if it recurs, I'm ready. I know who I am and I'm a child of God. I'm not a victim of melanoma and I will never be a warrior who "loses." I've already won. Melanoma can only do so much. It can't touch who I am.

                    Grace and peace,

                    Carol

                    nicoli
                    Participant

                      Hey rendergirl,

                      When I had my 6 month remission (NED) last year, I stopped coming to thes site. I wasn't "sick" and neede to get on with my life, without thinking about cancer everyday. When I had a recurrence in October, I came back to this site to get encouragement and education.

                      If you are NED, what are you doing here? Go, live your life, follow your onc's scan schedule but forget about cancer as much as you can.

                      I agree this site is wonderful and horrible. Lots of encouragment but also some tears. I plan to leave when I reach NED. And I plan to come back when I need this site again. And that's okay.

                      Nicki, Stage 3b

                       

                      nicoli
                      Participant

                        Hey rendergirl,

                        When I had my 6 month remission (NED) last year, I stopped coming to thes site. I wasn't "sick" and neede to get on with my life, without thinking about cancer everyday. When I had a recurrence in October, I came back to this site to get encouragement and education.

                        If you are NED, what are you doing here? Go, live your life, follow your onc's scan schedule but forget about cancer as much as you can.

                        I agree this site is wonderful and horrible. Lots of encouragment but also some tears. I plan to leave when I reach NED. And I plan to come back when I need this site again. And that's okay.

                        Nicki, Stage 3b

                         

                        FormerCaregiver
                        Participant

                          I would like to agree with the great sentiments expressed by Michelle and Carol.

                          Unfortunately, some people do have a very difficult time in dealing with melanoma and for
                          a number of reasons they become seriously ill fairly quickly. A few will be the subject of
                          "horror stories" that will undoubtedly frighten those who are new to melanoma.

                          However, please be aware that this is not the case in the vast majority of patients. Many
                          will live relatively healthy lives for a long time.

                          There are melanoma warriors here in this forum who have been stage III or IV for a long
                          time and continue to astound doctors with their resilience and determination to beat the
                          odds. A few have even been in remission for years and continue to have good
                          health. Here is a link to a recent post by Warren Galinat that shows how someone can truly
                          defy all statistics:
                          http://www.melanoma.org/community/mpip-melanoma-patients-information-page/hi-all-warren-galinat-here-back-nih

                          Hope this helps.

                          Frank from Australia

                          FormerCaregiver
                          Participant

                            I would like to agree with the great sentiments expressed by Michelle and Carol.

                            Unfortunately, some people do have a very difficult time in dealing with melanoma and for
                            a number of reasons they become seriously ill fairly quickly. A few will be the subject of
                            "horror stories" that will undoubtedly frighten those who are new to melanoma.

                            However, please be aware that this is not the case in the vast majority of patients. Many
                            will live relatively healthy lives for a long time.

                            There are melanoma warriors here in this forum who have been stage III or IV for a long
                            time and continue to astound doctors with their resilience and determination to beat the
                            odds. A few have even been in remission for years and continue to have good
                            health. Here is a link to a recent post by Warren Galinat that shows how someone can truly
                            defy all statistics:
                            http://www.melanoma.org/community/mpip-melanoma-patients-information-page/hi-all-warren-galinat-here-back-nih

                            Hope this helps.

                            Frank from Australia

                              shellebrownies
                              Participant

                                I have to agree with Frank, Rendergirl. There is good and bad about the site, but overall, I find it to be a positive and supportive place. 

                                Please don't let the "horror" stories scare you away…least of all my and my husband's story. I know I post on here often, and haven't had much good news on our journey thus far. But please don't judge most melanoma by my husband's… his is much more aggressive than most.

                                And, do you know what? Even facing what we have, my husband is the bravest man I know. He gets up each day with a good attitude and continues to fight. He amazes me!

                                While it's a shame you have to be here at all, we're happy to have you as part of our group.

                                Michelle, wife of Don, Stage IV

                                shellebrownies
                                Participant

                                  I have to agree with Frank, Rendergirl. There is good and bad about the site, but overall, I find it to be a positive and supportive place. 

                                  Please don't let the "horror" stories scare you away…least of all my and my husband's story. I know I post on here often, and haven't had much good news on our journey thus far. But please don't judge most melanoma by my husband's… his is much more aggressive than most.

                                  And, do you know what? Even facing what we have, my husband is the bravest man I know. He gets up each day with a good attitude and continues to fight. He amazes me!

                                  While it's a shame you have to be here at all, we're happy to have you as part of our group.

                                  Michelle, wife of Don, Stage IV

                                Rendergirl
                                Participant

                                  It's not just this site… I also have people friended on Facebook that have Melanoma and I follow some online journals of people going through it, too. So I'll hear about it regardless of whether I come here or not. Maybe it's not a good idea to suround myself with so many people that have it, but at the time I needed support, and I wanted to support others, too. Some days it just gets me down, as I'm sure it does everyone.

                                  Personally I think xanax works really well….lol.

                                  Rendergirl
                                  Participant

                                    It's not just this site… I also have people friended on Facebook that have Melanoma and I follow some online journals of people going through it, too. So I'll hear about it regardless of whether I come here or not. Maybe it's not a good idea to suround myself with so many people that have it, but at the time I needed support, and I wanted to support others, too. Some days it just gets me down, as I'm sure it does everyone.

                                    Personally I think xanax works really well….lol.

                                    Kim K
                                    Participant

                                      A huge part to remember is that you are still a "newbie" so to speak.  It takes TIME for the fear to amazingly lessen.  It really really does get better.

                                      8 years ago I was initially diagnosed as 2A, NED with neg SNB etc.  It still took over a year to not have the fear bubble up on an almost daily basis.  I would almost have a panic attack every time I drove past the exit on the interstate to my onc's office.

                                      Somewhere along the line these things helped:

                                      1.  I came here on an almost daily basis for info, but to vent with my new found friends that "got it", they knew mel and have walked the path before me.  I trusted that it really got better.

                                      2.  I would do my mental gymnastics while working out on an elliptical machine and lifting weights.  Eventually I got too tired to think any more.  The natural endorphins and losing weight (and in turn getting a somewhat hot body) were very positive for me.  (I need to get back to it since I let things slide – life happened LOL)

                                      3.  On occasion I would partake of the alcohol.  Worked great but the hangover was a B***.  It was my mini pity party.

                                      4.  I got divorced, went through IVF multiple times, was given the chance to start a new life with my girls, went back to school part-time, met new people, and before you know it, mel was nicely tucked back into it's hidey hole.

                                      8 years later an x-ray for other reasons diagnosed my lung tumor.

                                      Coming here and staying current empowered me to deal with this new attack on my body.  Once I got over the OMG, who is going to raise my girls etc.  I got busy with treatment.  Fortunately after surgery and IL-2 (23 bags total) I am and have been NED for a year.  Deep down I actually have inner peace because I truly don't think it will ever come back again.

                                      This Sh** will mess with your head.  Do whatever you can (in a non-destructive way), whatever works to get through it.

                                      Trust me, it really does get better – I mean the coping part.  Amazingly I know people who are able to get on with life, even if the new normal is just having no more progression, or not being in pain.

                                      In order for this process to occur it takes time – lots of it…..  Support groups, travel, etc. are other methods used as well.  It is also normal for that fear to come back on occasion.  Don't worry, your mind will catch up with the coping, eventually.  I promise.  Eventhough I have lost many friends, I still come because my life is fuller having known them, and to allow them to live on in our fond memories.  They are just in a different place now.  BTW – a few of us are also here and are setting the survival curve tail.

                                      Been there, done that, got the T-shirt and all the scars to prove it.  Now I need to feed the chickens.  (Oh yeah, nothing like giving chickens a cockroach and watching them fight over it to get your mind off of things.  Its a hoot, really!)

                                      Cyber hugs,

                                      Kim

                                        Vermont_Donna
                                        Participant

                                          Good morning!

                                          There have been all really good responses to your post about freaking out. I have been on this site for 5 years, when I was newly diagnosed. For me, this site educates me about the language of cancer care (WLE, SNB, LND, etc and the treatments, etc), and I learn so much from peoples individual stories and questions, etc. Coming here has made me a "better" melanoma patient, in that I have more knowledge (not everything applies to me of what I read here, obviously, but good to know info is here, some taken with a "grain of salt" as not everything is factual or is a treatment that is going to work). For me knowledge is power, and I bring that in the back of my mind to my appointments, and it has really enhanced my cancer care……since I am familiar with treatments and the language used I can communicate with all of my team of oncological providers better. So a definite plus there.

                                          Next this board is a place where connections happen and people keep coming back to post so you do "follow" people's journeys, and we see all kinds of outcomes. Some are very sad indeed. Some are very hopeful. Just like the blogs you follow and the facebook pages and the people you know face to face or the neighbor down the street. It is human compassion to feel what we feel and the range of emotions can be varied and strong (anger, fear, sadness, etc). Its what makes us people. Hearing about anyones journey with cancer or any serious medical or mental condition can be difficult. What makes this particularly poignant is that you are experiencing having a serious medical problem yourself…and even though you are NED the worry and fear are there. Thats so normal and to be expected, just not desired. But it keeps us on our toes, and keeps us aware and diligent. So re-phrase and re-think and give emotions time to settle down…..and if somehow you dont feel settled, seek counseling with a trained social worker or other type of counselor, who works with cancer patients..it may be a good thing to have an objective caring person to vent to and process feelings so they dont hold you back from LIVING!! People do develop depression and anxiety when faced with a serious medical illness, in themselves or a love one.

                                          Have HOPE and be grateful for every day is a gift!

                                          Vermont_Donna, stage 3a, now NED due to Yervoy

                                          (also a licensed clinical social worker)

                                          Vermont_Donna
                                          Participant

                                            Good morning!

                                            There have been all really good responses to your post about freaking out. I have been on this site for 5 years, when I was newly diagnosed. For me, this site educates me about the language of cancer care (WLE, SNB, LND, etc and the treatments, etc), and I learn so much from peoples individual stories and questions, etc. Coming here has made me a "better" melanoma patient, in that I have more knowledge (not everything applies to me of what I read here, obviously, but good to know info is here, some taken with a "grain of salt" as not everything is factual or is a treatment that is going to work). For me knowledge is power, and I bring that in the back of my mind to my appointments, and it has really enhanced my cancer care……since I am familiar with treatments and the language used I can communicate with all of my team of oncological providers better. So a definite plus there.

                                            Next this board is a place where connections happen and people keep coming back to post so you do "follow" people's journeys, and we see all kinds of outcomes. Some are very sad indeed. Some are very hopeful. Just like the blogs you follow and the facebook pages and the people you know face to face or the neighbor down the street. It is human compassion to feel what we feel and the range of emotions can be varied and strong (anger, fear, sadness, etc). Its what makes us people. Hearing about anyones journey with cancer or any serious medical or mental condition can be difficult. What makes this particularly poignant is that you are experiencing having a serious medical problem yourself…and even though you are NED the worry and fear are there. Thats so normal and to be expected, just not desired. But it keeps us on our toes, and keeps us aware and diligent. So re-phrase and re-think and give emotions time to settle down…..and if somehow you dont feel settled, seek counseling with a trained social worker or other type of counselor, who works with cancer patients..it may be a good thing to have an objective caring person to vent to and process feelings so they dont hold you back from LIVING!! People do develop depression and anxiety when faced with a serious medical illness, in themselves or a love one.

                                            Have HOPE and be grateful for every day is a gift!

                                            Vermont_Donna, stage 3a, now NED due to Yervoy

                                            (also a licensed clinical social worker)

                                          Kim K
                                          Participant

                                            A huge part to remember is that you are still a "newbie" so to speak.  It takes TIME for the fear to amazingly lessen.  It really really does get better.

                                            8 years ago I was initially diagnosed as 2A, NED with neg SNB etc.  It still took over a year to not have the fear bubble up on an almost daily basis.  I would almost have a panic attack every time I drove past the exit on the interstate to my onc's office.

                                            Somewhere along the line these things helped:

                                            1.  I came here on an almost daily basis for info, but to vent with my new found friends that "got it", they knew mel and have walked the path before me.  I trusted that it really got better.

                                            2.  I would do my mental gymnastics while working out on an elliptical machine and lifting weights.  Eventually I got too tired to think any more.  The natural endorphins and losing weight (and in turn getting a somewhat hot body) were very positive for me.  (I need to get back to it since I let things slide – life happened LOL)

                                            3.  On occasion I would partake of the alcohol.  Worked great but the hangover was a B***.  It was my mini pity party.

                                            4.  I got divorced, went through IVF multiple times, was given the chance to start a new life with my girls, went back to school part-time, met new people, and before you know it, mel was nicely tucked back into it's hidey hole.

                                            8 years later an x-ray for other reasons diagnosed my lung tumor.

                                            Coming here and staying current empowered me to deal with this new attack on my body.  Once I got over the OMG, who is going to raise my girls etc.  I got busy with treatment.  Fortunately after surgery and IL-2 (23 bags total) I am and have been NED for a year.  Deep down I actually have inner peace because I truly don't think it will ever come back again.

                                            This Sh** will mess with your head.  Do whatever you can (in a non-destructive way), whatever works to get through it.

                                            Trust me, it really does get better – I mean the coping part.  Amazingly I know people who are able to get on with life, even if the new normal is just having no more progression, or not being in pain.

                                            In order for this process to occur it takes time – lots of it…..  Support groups, travel, etc. are other methods used as well.  It is also normal for that fear to come back on occasion.  Don't worry, your mind will catch up with the coping, eventually.  I promise.  Eventhough I have lost many friends, I still come because my life is fuller having known them, and to allow them to live on in our fond memories.  They are just in a different place now.  BTW – a few of us are also here and are setting the survival curve tail.

                                            Been there, done that, got the T-shirt and all the scars to prove it.  Now I need to feed the chickens.  (Oh yeah, nothing like giving chickens a cockroach and watching them fight over it to get your mind off of things.  Its a hoot, really!)

                                            Cyber hugs,

                                            Kim

                                            Lori C
                                            Participant

                                              It's a balance, like everyone has said.  I'm a former caregiver and our story did not turn out happily in terms of a long term durable response but the journey was made far better by my finding this board.  There were times when sad news overwhelmed and scared me but I personally found that it also helped – I knew, of course, that this was a serious and life threatening illness.  Some people who seemed to do everything right did not survive long and others, for no clear reason, did.  There was both an unfairness to that and a relief – there are things you can control and things you can't, and all you can do is the best you can and remember that nothing is guaranteed.

                                              There are specific topics to encourage – Charlie S has a stage IV "still alive" thread that is great.  Every melanoma story here is in one way a victory, though, because – at least I've found – amazing inspiration in those who, despite their disease progressing, continue to be alive every moment, enjoy their lives and those they care about, and don't let melanoma define who they are even when it's actively screwing with their health. 

                                              Lori

                                              Lori C
                                              Participant

                                                It's a balance, like everyone has said.  I'm a former caregiver and our story did not turn out happily in terms of a long term durable response but the journey was made far better by my finding this board.  There were times when sad news overwhelmed and scared me but I personally found that it also helped – I knew, of course, that this was a serious and life threatening illness.  Some people who seemed to do everything right did not survive long and others, for no clear reason, did.  There was both an unfairness to that and a relief – there are things you can control and things you can't, and all you can do is the best you can and remember that nothing is guaranteed.

                                                There are specific topics to encourage – Charlie S has a stage IV "still alive" thread that is great.  Every melanoma story here is in one way a victory, though, because – at least I've found – amazing inspiration in those who, despite their disease progressing, continue to be alive every moment, enjoy their lives and those they care about, and don't let melanoma define who they are even when it's actively screwing with their health. 

                                                Lori

                                                Laurie from maine
                                                Participant

                                                  hi,

                                                  I think everyone comes on here first for information and support and that is what is wonderful about this board.  Then people either choose to stay or leave this site.  For me personally, I try to come on at least weekly to see how people are doing, offer encouragement and support like I was given during my time,  and try to keep up on what responses people are having with the any trials etc.  I so appreciate the true melanoma warriors like Amy who kept us all informed as she went thru the trials and we were able to hear the highs and lows of it, I felt like by sharing she allowed us to be in the battle with her.   

                                                  I find that since I am one of the lucky ones to be currently NED, stage 3c, i come on also to help those that maybe  who have questions that I can help with, ques about doctors in my area and any side effects from surgery, radiation, interferon which are the things I have been thru.  I feel it is like passing the torch and now that I am ok my turn to help those who are in the thick of it.  I do feel if those of us who are currently NED leave then who will be there to support those in their battles?  But I understand that there are times that this board seems full of all sad news and can be overwhelmingly hard, that is why I think it is great when people send quick notes about positive news to keep us all encouraged.    

                                                  that said you are fairly new so maybe you do need to step away if it is depressing you too much.  I hope eventually cancer will move tothe back of your brain and like all the others said – we have all probably learned each day is a gift. 

                                                  Take care.

                                                  laurie from maine

                                                  Laurie from maine
                                                  Participant

                                                    hi,

                                                    I think everyone comes on here first for information and support and that is what is wonderful about this board.  Then people either choose to stay or leave this site.  For me personally, I try to come on at least weekly to see how people are doing, offer encouragement and support like I was given during my time,  and try to keep up on what responses people are having with the any trials etc.  I so appreciate the true melanoma warriors like Amy who kept us all informed as she went thru the trials and we were able to hear the highs and lows of it, I felt like by sharing she allowed us to be in the battle with her.   

                                                    I find that since I am one of the lucky ones to be currently NED, stage 3c, i come on also to help those that maybe  who have questions that I can help with, ques about doctors in my area and any side effects from surgery, radiation, interferon which are the things I have been thru.  I feel it is like passing the torch and now that I am ok my turn to help those who are in the thick of it.  I do feel if those of us who are currently NED leave then who will be there to support those in their battles?  But I understand that there are times that this board seems full of all sad news and can be overwhelmingly hard, that is why I think it is great when people send quick notes about positive news to keep us all encouraged.    

                                                    that said you are fairly new so maybe you do need to step away if it is depressing you too much.  I hope eventually cancer will move tothe back of your brain and like all the others said – we have all probably learned each day is a gift. 

                                                    Take care.

                                                    laurie from maine

                                                    lovingwifedeb
                                                    Participant
                                                      I lost my husband to this disease on May 27th, our story is a love story : redesign08.blogspot.com

                                                      Sure, the journey of melanoma tore my heart in two but I will spend the rest of my life telling others of it’s life altering changes.

                                                      I came back here here today to see “friends” I’ve made along my husband’s journey, to see how they are doing, to stay connected. In honor of my husband’s memory those of you who are fighting… Please live your lives as he did, fully, with love for family and never giving up.

                                                      Deb
                                                      lovingwife to Bob

                                                        boot2aboot
                                                        Participant

                                                          My fourth angel gave this piece of wisdom…take one day at a time…it is simple but effective…meditation and exercise helps me…so do funny movies…. i think post op surgery biologically makes one depressed…it is hormonal shift…i am feeling this very much now…there is no easy answer…but if you take each day as a gift it makes your life feel…inspired…

                                                          boot2aboot
                                                          Participant

                                                            My fourth angel gave this piece of wisdom…take one day at a time…it is simple but effective…meditation and exercise helps me…so do funny movies…. i think post op surgery biologically makes one depressed…it is hormonal shift…i am feeling this very much now…there is no easy answer…but if you take each day as a gift it makes your life feel…inspired…

                                                          lovingwifedeb
                                                          Participant
                                                            I lost my husband to this disease on May 27th, our story is a love story : redesign08.blogspot.com

                                                            Sure, the journey of melanoma tore my heart in two but I will spend the rest of my life telling others of it’s life altering changes.

                                                            I came back here here today to see “friends” I’ve made along my husband’s journey, to see how they are doing, to stay connected. In honor of my husband’s memory those of you who are fighting… Please live your lives as he did, fully, with love for family and never giving up.

                                                            Deb
                                                            lovingwife to Bob

                                                            Charlie S
                                                            Participant

                                                              This will at first blush sound harsh to you, but please here me out because what follows is not some philosophical discussion,rather, it is based on first hand experience.

                                                              Your mother and sister, no matter how well intentioned, do not have melanoma………….you do; they can't carry the disease for you, they cannot substitute their own life for you, they cannot do the surgery for you nor can they do any treatment for you.

                                                              Yes, they can walk with you, escort you, support you, encourage you, have hope for you but as family and caregivers, they can NOT replace your experience nor truly know the challenges within you.  Only you can, and you alone.  They can't take the pain from you for you.,,,,,,,and that is the single most challenge for family and caregivers……………….to understand and accept they can't do that for you; and therein is their feeling of helplessness and they just want to do SOMETHING.

                                                              But, at the root of it, they can't and that is their cross to bear,,,,,,,,,,,not theirs.

                                                              It has been YOUR body that a knife was stuck into, not theirs.  It is YOUR life and essence  that is threatened….not theirs.

                                                              It is YOU and you alone that have and will give consent to surgery and /or treatment.  Not them.

                                                              Nobody else is just like you and that includes your health.  Yes, others may be similar, but you are your own, unique self, and as such it is your chance in life and therefor your choices.

                                                              Cancer is an ugly affair and one cannot hide from it when it in your body.  We seek information and knowledge not only for the comfort of knowing we are not alone, but to gain confidence, through shared knowledge, to be a better advocate for yourself, but further, use this knowledge to control and take charge of our health in what is otherwise a seemingly uncontrollable situation.

                                                              If the stark knowledge and reading of the day to day melanoma fights scare you or become too much here, well, just step away and when you come here, take what you want and leave the rest.

                                                              It's okay to move on from here, and it is easy to understand the pull that brings us all back…………….but if it is too much, and that is what you have decided is best, then just step away and get about living your life.  It's okay.

                                                              If you are afraid to leave here because you sense this is the only place people understand you, and you fear that safe place, that is okay too, ,,,,,,,,,,,,,,,but again, just take what you want or need and leave the rest.

                                                              Just as your mom and sis can not carry melanoma for you, nobody here expects you to carry it for them either.; nor should you.

                                                              I've been around here over ten years and been in peoples homes and they mine.  Seen them in the hospital and they me and even had the love of my life whom I met here die in my arms, so I really do know how hard it can be.

                                                              It makes no sense to me why a young child, mother, sister, daughter, husband or father should die instead of me, but have accepted it is just not for me to know,,,,,,,,,,,,,,,,but what I DO know is that the best I can do is share  life with them while we are here, right now.

                                                              In other words LIVE while we can because there are no re-runs here' it's what we make of  it, so either spend your life fretting about dying or live life.  Again, that will be your choice.

                                                               

                                                              Charlie S

                                                               

                                                                boot2aboot
                                                                Participant

                                                                  Charlie,

                                                                  that was so eloquently put!

                                                                  boots

                                                                  boot2aboot
                                                                  Participant

                                                                    Charlie,

                                                                    that was so eloquently put!

                                                                    boots

                                                                  Charlie S
                                                                  Participant

                                                                    This will at first blush sound harsh to you, but please here me out because what follows is not some philosophical discussion,rather, it is based on first hand experience.

                                                                    Your mother and sister, no matter how well intentioned, do not have melanoma………….you do; they can't carry the disease for you, they cannot substitute their own life for you, they cannot do the surgery for you nor can they do any treatment for you.

                                                                    Yes, they can walk with you, escort you, support you, encourage you, have hope for you but as family and caregivers, they can NOT replace your experience nor truly know the challenges within you.  Only you can, and you alone.  They can't take the pain from you for you.,,,,,,,and that is the single most challenge for family and caregivers……………….to understand and accept they can't do that for you; and therein is their feeling of helplessness and they just want to do SOMETHING.

                                                                    But, at the root of it, they can't and that is their cross to bear,,,,,,,,,,,not theirs.

                                                                    It has been YOUR body that a knife was stuck into, not theirs.  It is YOUR life and essence  that is threatened….not theirs.

                                                                    It is YOU and you alone that have and will give consent to surgery and /or treatment.  Not them.

                                                                    Nobody else is just like you and that includes your health.  Yes, others may be similar, but you are your own, unique self, and as such it is your chance in life and therefor your choices.

                                                                    Cancer is an ugly affair and one cannot hide from it when it in your body.  We seek information and knowledge not only for the comfort of knowing we are not alone, but to gain confidence, through shared knowledge, to be a better advocate for yourself, but further, use this knowledge to control and take charge of our health in what is otherwise a seemingly uncontrollable situation.

                                                                    If the stark knowledge and reading of the day to day melanoma fights scare you or become too much here, well, just step away and when you come here, take what you want and leave the rest.

                                                                    It's okay to move on from here, and it is easy to understand the pull that brings us all back…………….but if it is too much, and that is what you have decided is best, then just step away and get about living your life.  It's okay.

                                                                    If you are afraid to leave here because you sense this is the only place people understand you, and you fear that safe place, that is okay too, ,,,,,,,,,,,,,,,but again, just take what you want or need and leave the rest.

                                                                    Just as your mom and sis can not carry melanoma for you, nobody here expects you to carry it for them either.; nor should you.

                                                                    I've been around here over ten years and been in peoples homes and they mine.  Seen them in the hospital and they me and even had the love of my life whom I met here die in my arms, so I really do know how hard it can be.

                                                                    It makes no sense to me why a young child, mother, sister, daughter, husband or father should die instead of me, but have accepted it is just not for me to know,,,,,,,,,,,,,,,,but what I DO know is that the best I can do is share  life with them while we are here, right now.

                                                                    In other words LIVE while we can because there are no re-runs here' it's what we make of  it, so either spend your life fretting about dying or live life.  Again, that will be your choice.

                                                                     

                                                                    Charlie S

                                                                     

                                                                    Rendergirl
                                                                    Participant

                                                                      Wow, everyone… thank you. What an amazing response. Charlie, I think you summed it up best of all… take what you need from this site. You're right. I will take the joy and happiness in life, living every day, and be greatful for it. I will offer support to others when I'm feeling strong, and when I'm not feeling strong, I will reach out here for support or somewhere else, if coming here just depresses me. But you ALL are SO right… no one else really understands. They just don't. I didn't want to be a part of this club, but I have to say what an amazing club it is. And I thank you all, and I hope I can give back some support to others in the future.

                                                                      Something I failed to mention was that I already have depression and have been battling it for 15 yrs or so now. So sometimes I wonder, is it the depression or the melanoma making me sad? But regardless…. life is a rock…so let's roll.

                                                                      Love to all.

                                                                        nicoli
                                                                        Participant

                                                                          I've also had depression (most of my life). Not on an antidepressant right now because I haven't found one helpful enough to put up with side-effects.

                                                                          Please know that some cancer treatments can cause or increase depression.

                                                                          I think just being aware of that has helped me and my family members to deal with this cancer/depression thing.

                                                                          Nicki, Stage 3b, scalp

                                                                          nicoli
                                                                          Participant

                                                                            I've also had depression (most of my life). Not on an antidepressant right now because I haven't found one helpful enough to put up with side-effects.

                                                                            Please know that some cancer treatments can cause or increase depression.

                                                                            I think just being aware of that has helped me and my family members to deal with this cancer/depression thing.

                                                                            Nicki, Stage 3b, scalp

                                                                          Rendergirl
                                                                          Participant

                                                                            Wow, everyone… thank you. What an amazing response. Charlie, I think you summed it up best of all… take what you need from this site. You're right. I will take the joy and happiness in life, living every day, and be greatful for it. I will offer support to others when I'm feeling strong, and when I'm not feeling strong, I will reach out here for support or somewhere else, if coming here just depresses me. But you ALL are SO right… no one else really understands. They just don't. I didn't want to be a part of this club, but I have to say what an amazing club it is. And I thank you all, and I hope I can give back some support to others in the future.

                                                                            Something I failed to mention was that I already have depression and have been battling it for 15 yrs or so now. So sometimes I wonder, is it the depression or the melanoma making me sad? But regardless…. life is a rock…so let's roll.

                                                                            Love to all.

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                                                                        The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

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