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Stage IV’s advice, not medical but mental.

Forums General Melanoma Community Stage IV’s advice, not medical but mental.

  • Post
    emilypen
    Participant

    Hi All,

    My husband is Stage IV, but is on a trial that seems to be working… his next CT scan is this coming week. I can tell it's helping, his pain is less, and his energy is up.

    But he's on a new drug combo that really has no statistics yet… it's a shot in the semi-dark, so it's hard for both of us to look forward since we don't know how long it will work or even if he is a partial or full responder.

    Hi All,

    My husband is Stage IV, but is on a trial that seems to be working… his next CT scan is this coming week. I can tell it's helping, his pain is less, and his energy is up.

    But he's on a new drug combo that really has no statistics yet… it's a shot in the semi-dark, so it's hard for both of us to look forward since we don't know how long it will work or even if he is a partial or full responder.

    So my question to all of you is, how do you keep your spirits up? how do you keep looking to the future and planning a future with your loved ones?

    How do you stay positive, and agressive? Even if a treatment doesn't work?

    We're both positive people but the last few months have been incredibly tough and even now I'm fighting tears as I write this.

    Any advice would help. Especially since on Friday we'll know if this drug combo is working or not.

     

    thank you,

    Emily

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  • Replies
      Pat from Ohio
      Participant

      Emily.  As a caregiver, I have walked in your shoes.  You can continue to support your husband, be there for him in every sense of the word.  As for his part, some people find antidepressants helpful, some turn to their religious advisor, some seek professional counseling.  Every one seems to have to find their own way out of the depths  Some find taking an active role in persuing research, options and various treatments a help.  Some find this board to be a life saver.  Do any of these sound like your husband?  The other part is your well being. Be sure to give yourself permission to grieve, pamper yourself with whatever works for you.  The part of caregiver is heartbreaking and difficult.  Stay strong.  I know how tough it is.   

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      Pat from Ohio
      Participant

      Emily.  As a caregiver, I have walked in your shoes.  You can continue to support your husband, be there for him in every sense of the word.  As for his part, some people find antidepressants helpful, some turn to their religious advisor, some seek professional counseling.  Every one seems to have to find their own way out of the depths  Some find taking an active role in persuing research, options and various treatments a help.  Some find this board to be a life saver.  Do any of these sound like your husband?  The other part is your well being. Be sure to give yourself permission to grieve, pamper yourself with whatever works for you.  The part of caregiver is heartbreaking and difficult.  Stay strong.  I know how tough it is.   

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      Lori C
      Participant

      I know exactly what you are asking.  I will be honest:  A big part of my ability to stay positive for Will was just to absolutely ignore the "statistics" and "likelihood" comments that feel overwhelming.  The truth was, no one knows who will respond or how long anyone would live; it is all a guess and as an individual , we never know where we will fall in that spectrum.  I could not "be realistic" and do what I needed to do for Will, the person I was caregiver for.  I HAD to stay optimistic.

      This board has been very helpful because people here are such fighters and so encouraging.   I took "you may fail if you try but if you don't try, you will certainly fail" as a kind of motto, and just simply did not allow myself to "prepare" for bad news or failure.  I didn't see any point.  I knew that if things did not go as I'd hoped – and they didn't, though it was quite sudden – there would be plenty of time for that.  I *had* to stay hopeful and positive for Will, and if doing so meant that I was going to be considered "overly optimistic" or in denial, so be it.  Hope is precious – there is no reason to give it up until you absolutely have to. 

      That would be my advice.  If you or the person you are caring for is alive, assume they will be tomorrow and go from there.  You may get bad news.  Grieve over it, get scared, sad and angry, and then say, okay, that sucked and I'm going forward now and continuing this fight. 

      Because Will chose to continue treatment when I am sure other people might (quite reasonably) have decided against it, I did not have to deal with the hospice issue until the last 8 hours of his life.  I am told that there is much support for those who choose to use that route when no other good options exist.  For Will, it was not something he wanted – much of his life was defined as a fighter and he chose to continue fighting (not sure if I would have done it his way  myselfl but it was *his* choice to make).   Every day he was alive I believed he could survive this disease and although I had many dark moments, I don't regret keeping that attitude because it was a far better place to be than immersed in fears and what – ifs.  Everyone has to figure out what combination works for them – but I had to really eliminate the negative people from my life to get through this in a mentally healthy way.

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      Lori C
      Participant

      I know exactly what you are asking.  I will be honest:  A big part of my ability to stay positive for Will was just to absolutely ignore the "statistics" and "likelihood" comments that feel overwhelming.  The truth was, no one knows who will respond or how long anyone would live; it is all a guess and as an individual , we never know where we will fall in that spectrum.  I could not "be realistic" and do what I needed to do for Will, the person I was caregiver for.  I HAD to stay optimistic.

      This board has been very helpful because people here are such fighters and so encouraging.   I took "you may fail if you try but if you don't try, you will certainly fail" as a kind of motto, and just simply did not allow myself to "prepare" for bad news or failure.  I didn't see any point.  I knew that if things did not go as I'd hoped – and they didn't, though it was quite sudden – there would be plenty of time for that.  I *had* to stay hopeful and positive for Will, and if doing so meant that I was going to be considered "overly optimistic" or in denial, so be it.  Hope is precious – there is no reason to give it up until you absolutely have to. 

      That would be my advice.  If you or the person you are caring for is alive, assume they will be tomorrow and go from there.  You may get bad news.  Grieve over it, get scared, sad and angry, and then say, okay, that sucked and I'm going forward now and continuing this fight. 

      Because Will chose to continue treatment when I am sure other people might (quite reasonably) have decided against it, I did not have to deal with the hospice issue until the last 8 hours of his life.  I am told that there is much support for those who choose to use that route when no other good options exist.  For Will, it was not something he wanted – much of his life was defined as a fighter and he chose to continue fighting (not sure if I would have done it his way  myselfl but it was *his* choice to make).   Every day he was alive I believed he could survive this disease and although I had many dark moments, I don't regret keeping that attitude because it was a far better place to be than immersed in fears and what – ifs.  Everyone has to figure out what combination works for them – but I had to really eliminate the negative people from my life to get through this in a mentally healthy way.

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        JuleFL
        Participant

        Well said, Lori. 

        Jule

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        JuleFL
        Participant

        Well said, Lori. 

        Jule

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        bill58
        Participant

        Good advice Lori,

        There will be bad news (God, dont I know it). I get scared, angry, cry, despair and then try to move on with planning the next phase of treatment, whatever that might be.  Some will have positive outcomes, some might no turn out so well and we have to move on to something else.  Dont be afraid to show your emotions during this difficult time.  We can't keep everything bottled up inside and need to talk about it with our loved ones to make sure we are making good decisions for the future.

        This board is a help with all of the wonderful people who have already walked in our shoes and have experienced the same frustrations with treatments that we have or are about to have.

        I have been talking to my pastors at church and that has been of some help.  I know there are various books out there to help cope with the rough ride, but I have not checked into any of them yet, although as my situation deteriorates I am going to need more strength than I currently have.

        Happy Halloween to everyone.  Time to think about something else for a few hours and enjoy those around us.

        Bill

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        bill58
        Participant

        Good advice Lori,

        There will be bad news (God, dont I know it). I get scared, angry, cry, despair and then try to move on with planning the next phase of treatment, whatever that might be.  Some will have positive outcomes, some might no turn out so well and we have to move on to something else.  Dont be afraid to show your emotions during this difficult time.  We can't keep everything bottled up inside and need to talk about it with our loved ones to make sure we are making good decisions for the future.

        This board is a help with all of the wonderful people who have already walked in our shoes and have experienced the same frustrations with treatments that we have or are about to have.

        I have been talking to my pastors at church and that has been of some help.  I know there are various books out there to help cope with the rough ride, but I have not checked into any of them yet, although as my situation deteriorates I am going to need more strength than I currently have.

        Happy Halloween to everyone.  Time to think about something else for a few hours and enjoy those around us.

        Bill

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      Jerry from Cape Cod
      Participant

      Hi Emily,

      I keep positive by seeking out positive people.  I refuse to let myself become a victim.  I've made it a point to learn everything about the disease and current treatments that I can. My wife and I live each day knowing that there are no guarantees about tomorrow. 

      I gather my strength from the people around me including other patients and caregivers. I have friends all over the world and we are bound by one fight.  I feel honored to be benefiting from the trials participated in by others before me.  Most of them have passed, but there is hope for the future because of their sacrifices.

      I've lost my godfather to melanoma and my father to stomach cancer both with no treatment possible.  Both lived the time they had with love, good humor and a relentless sprit that I feel I must honor. 

      I don't want others feeling sorry for me.  I don't want them feeling strange when I'm around.  Yes, I wear a bracelet that says "F*CK CANCER" and that is my attitude.  I'm not being caviler and I will do everything in my power to live the best life I can for as long as I can.  I'll go kicking and fighting.

      I don't want to be anyone's hero, because my hero's are those that made it possible for me to live this extra time and the only thing that's miraculous about my story is that I was put in the right place at the right time with the right doctors.  I give them all the credit. 

      I've lived way past the expiration date that was given me almost two years ago and right now I'm happy to say that I don't have one. 

      Being around this forum helps, even with the bad news that has been steady recently. 

      I guess each day gets a tiny bit easier thanks to my great family, good friends, good doctors.

      Jerry from Cape Cod

       

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      Jerry from Cape Cod
      Participant

      Hi Emily,

      I keep positive by seeking out positive people.  I refuse to let myself become a victim.  I've made it a point to learn everything about the disease and current treatments that I can. My wife and I live each day knowing that there are no guarantees about tomorrow. 

      I gather my strength from the people around me including other patients and caregivers. I have friends all over the world and we are bound by one fight.  I feel honored to be benefiting from the trials participated in by others before me.  Most of them have passed, but there is hope for the future because of their sacrifices.

      I've lost my godfather to melanoma and my father to stomach cancer both with no treatment possible.  Both lived the time they had with love, good humor and a relentless sprit that I feel I must honor. 

      I don't want others feeling sorry for me.  I don't want them feeling strange when I'm around.  Yes, I wear a bracelet that says "F*CK CANCER" and that is my attitude.  I'm not being caviler and I will do everything in my power to live the best life I can for as long as I can.  I'll go kicking and fighting.

      I don't want to be anyone's hero, because my hero's are those that made it possible for me to live this extra time and the only thing that's miraculous about my story is that I was put in the right place at the right time with the right doctors.  I give them all the credit. 

      I've lived way past the expiration date that was given me almost two years ago and right now I'm happy to say that I don't have one. 

      Being around this forum helps, even with the bad news that has been steady recently. 

      I guess each day gets a tiny bit easier thanks to my great family, good friends, good doctors.

      Jerry from Cape Cod

       

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        Laurie from maine
        Participant

        Hi,

        Faith and hope can carry you far.  Hope is a very strong word to hold on to with cancer.  I liked to think when looking at statistics that someone has to be the positive part of the percentages why not you?  I think that people should allow themselves their moments/days of just being sad, life has changed for both of you, allow that emotion, but dont let it consume you.    Cancer shows us all – life is precious – try to enjoy each day and the people around you.   I am glad you have found this site, there are a lot of people here who understand and can help.  take care.

        laurie from maine stage 3

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        Laurie from maine
        Participant

        Hi,

        Faith and hope can carry you far.  Hope is a very strong word to hold on to with cancer.  I liked to think when looking at statistics that someone has to be the positive part of the percentages why not you?  I think that people should allow themselves their moments/days of just being sad, life has changed for both of you, allow that emotion, but dont let it consume you.    Cancer shows us all – life is precious – try to enjoy each day and the people around you.   I am glad you have found this site, there are a lot of people here who understand and can help.  take care.

        laurie from maine stage 3

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      Dear Emily,

      I can relate completely.  If it wasn't for my faith in God and this wonderful little book that I found two weeks ago I would be going crazy wth the daily thought of wondering when  the bomb will drop.  I am lucky to be responding to the Roche braf inhibitor.  I have had two scans since June showing shrinking tumors and my next scan is Nov. 8.  Even though I rejoice everyday for the extended time I have been given I still have the fearful toughts, daily.  Planning for the furture alwayshas  the "big" question in it.  Will I be here? 

      But, God is with me and He knows the plan.  When I trust that ALL is in His hands, that He knows what is ahead AND that He has everything  taken care of, I am able to move forward with peace and joy.  I actually relax and live my life.  it is wonderful!  

      I am not good at expressing myself very well on this board but I can feel your concern and worry.  Please know that you are not alone.  There are so many of us here that know exactly what you are feeling.  Being albe to express your thoughts and fears is vital to carrying on with your daily life.  It's OK to acknowledge all of your emotions; give them to God and then move forward with planning your life.  God has your back. 

       The book is titled When God and Cancer Meet by Lynn Eib.  

      Peace and love,

      Shelly in Switzerland

       

       

       

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      Dear Emily,

      I can relate completely.  If it wasn't for my faith in God and this wonderful little book that I found two weeks ago I would be going crazy wth the daily thought of wondering when  the bomb will drop.  I am lucky to be responding to the Roche braf inhibitor.  I have had two scans since June showing shrinking tumors and my next scan is Nov. 8.  Even though I rejoice everyday for the extended time I have been given I still have the fearful toughts, daily.  Planning for the furture alwayshas  the "big" question in it.  Will I be here? 

      But, God is with me and He knows the plan.  When I trust that ALL is in His hands, that He knows what is ahead AND that He has everything  taken care of, I am able to move forward with peace and joy.  I actually relax and live my life.  it is wonderful!  

      I am not good at expressing myself very well on this board but I can feel your concern and worry.  Please know that you are not alone.  There are so many of us here that know exactly what you are feeling.  Being albe to express your thoughts and fears is vital to carrying on with your daily life.  It's OK to acknowledge all of your emotions; give them to God and then move forward with planning your life.  God has your back. 

       The book is titled When God and Cancer Meet by Lynn Eib.  

      Peace and love,

      Shelly in Switzerland

       

       

       

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      Charlie S
      Participant

      Dear Emily:

      I have been Stage IV since 1996 and have had seven recurrences; nine years prior to that I was Stage III and my coping skills have evolved over now 23 years.  Just as there is no one answer for a treatment approach to melanoma, there is no one set of skills to deal with the other than physical aspects of this disease.

      For me it was and is a combination of things.  One is the logical approach of specifically how to deal with a physical disease with a scientific approach that appeals to me intellectually….that is to say I learned to make medical decisions that appealed to me in a logical, best option informed, with a clear understanding of the risks and balanced with the possible rewards.  Intellectually, when I made those decisions, I knew I had made a good decision, and never regretted that decision.

      Another reasoned approach was that none of us are getting out of here alive.  I don't mean that to sound cavalier, but merely an acceptance of mortality.  The question became therefor to me was not how or if, but of when and what could I do about it.

      Another, was not to deny I am hosting a potentially deadly and life ending disease and to accept that as my lot in life.  Not to give up and die mind you, but only to accept that melanoma was in a race with my essence to win or lose and my choice was to win…………..while accepting it may only be in the short term, but it WOULD be on my terms.

      Another was to realize that quite possibly the more I give, the more I would receive.  Money and things really don't matter if my life is at stake.  What matters is what I can offer to another….not for self but for others..

      Some of that probably was self reflective, some was an instinct to survive, some was a re-evaluation of my self worth, some was learning from others and how much others matter.

      And yes, some of was my pluckiness to just proclaim to melanoma that it can kiss my skinny little ass and for it to give ime its' best shot.  And I assure you it has.  It has taken a lover from my arms, killed my friends and seen countless others suffer, some would overcome and some would not.

      No matter how much one fights, some may lose and some may win with this disease.  But make your best decision, don't look back, question always, but don't question your decisions, move forward and do the best you can..

      Yes, it involves decisions, belief and a will to live……and a constant questioning of all of that……..all of which comes with cancer territory.

       

      Hang in the fight, never give up hope.

       

      Charlie S

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      Charlie S
      Participant

      Dear Emily:

      I have been Stage IV since 1996 and have had seven recurrences; nine years prior to that I was Stage III and my coping skills have evolved over now 23 years.  Just as there is no one answer for a treatment approach to melanoma, there is no one set of skills to deal with the other than physical aspects of this disease.

      For me it was and is a combination of things.  One is the logical approach of specifically how to deal with a physical disease with a scientific approach that appeals to me intellectually….that is to say I learned to make medical decisions that appealed to me in a logical, best option informed, with a clear understanding of the risks and balanced with the possible rewards.  Intellectually, when I made those decisions, I knew I had made a good decision, and never regretted that decision.

      Another reasoned approach was that none of us are getting out of here alive.  I don't mean that to sound cavalier, but merely an acceptance of mortality.  The question became therefor to me was not how or if, but of when and what could I do about it.

      Another, was not to deny I am hosting a potentially deadly and life ending disease and to accept that as my lot in life.  Not to give up and die mind you, but only to accept that melanoma was in a race with my essence to win or lose and my choice was to win…………..while accepting it may only be in the short term, but it WOULD be on my terms.

      Another was to realize that quite possibly the more I give, the more I would receive.  Money and things really don't matter if my life is at stake.  What matters is what I can offer to another….not for self but for others..

      Some of that probably was self reflective, some was an instinct to survive, some was a re-evaluation of my self worth, some was learning from others and how much others matter.

      And yes, some of was my pluckiness to just proclaim to melanoma that it can kiss my skinny little ass and for it to give ime its' best shot.  And I assure you it has.  It has taken a lover from my arms, killed my friends and seen countless others suffer, some would overcome and some would not.

      No matter how much one fights, some may lose and some may win with this disease.  But make your best decision, don't look back, question always, but don't question your decisions, move forward and do the best you can..

      Yes, it involves decisions, belief and a will to live……and a constant questioning of all of that……..all of which comes with cancer territory.

       

      Hang in the fight, never give up hope.

       

      Charlie S

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      Amy Busby
      Participant

      Hi Emily!  I was dx stage 3 in 2003 and after 6 years NED,  mel. returned with a vengence.  I have been battling hard since the summer of 2009.  I've been there and done that with just about everything out there.

      Long ago I had the pleasure of becoming friends with Charlie S.  His advice to you was spot on & I learned so much from him in terms of both my physical battle and my mental one. 

      In many ways I had a much easier time mentally with stage 4 than with stage 3.  The fear of the unknown was almost unbearable / paralyzing.  Active combat at least gave me goals!  For me coming to terms that at some point melanoma would kill me was almost freeing in many ways.  I have always said "melanoma will probably kill me, but not today!"

      I have a very strong Christian faith.  I can not emphaise enough how much peace / comfort / strength this has given me.  I am sure anyone's religious beliefs can help them in the same way.  Having a community of fellow believers, particularly fellow mel. warriors, has been a tremendous source of encouragement.

      Is it hard to build a support system, knowing many of them may croak?  Sure.  When it happens it is devestating because you're losing a friend, but it's doublely hard because you're left feeling "that could be us" and also a bit of "oh thank goodness that wasn't us."  But it's absolutely worth it to make those connections.  There are many patients & caregivers here who have been in ya'll shoes.  There are success stories.  Some still here for many years!

      I still focus on the short term.  Long term for me is a few months ahead.  And that's okay.  I still talk about our retirement dreams with my husband.  Even if we both know deep down that after making it this far I'm on the successful end of the curve.  And at 39 the odds I'll get 20, 25, or 30 more years are slim.  The fact is with it in my brain we'll be lucky to get another year.  But I've always been one to sneer at averages – I've always been was above average!  : )

      I'd encourage you to seek counseling – it doesn't even have to be a formal thing, maybe just a spiritual mentor, of another caregiver that can indentify / listen.

      I hope the treatment works well for your husband.  I tell my kids it's like playing whack-a-mole.  whack-a-mel!  It is always a battle.  Smash it down and it pops up somewhere else.  You can't always look at only NED as a success.  Sometimes merely stable is a terrific success. 

      Best of luck,

      Amy Busby

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      Amy Busby
      Participant

      Hi Emily!  I was dx stage 3 in 2003 and after 6 years NED,  mel. returned with a vengence.  I have been battling hard since the summer of 2009.  I've been there and done that with just about everything out there.

      Long ago I had the pleasure of becoming friends with Charlie S.  His advice to you was spot on & I learned so much from him in terms of both my physical battle and my mental one. 

      In many ways I had a much easier time mentally with stage 4 than with stage 3.  The fear of the unknown was almost unbearable / paralyzing.  Active combat at least gave me goals!  For me coming to terms that at some point melanoma would kill me was almost freeing in many ways.  I have always said "melanoma will probably kill me, but not today!"

      I have a very strong Christian faith.  I can not emphaise enough how much peace / comfort / strength this has given me.  I am sure anyone's religious beliefs can help them in the same way.  Having a community of fellow believers, particularly fellow mel. warriors, has been a tremendous source of encouragement.

      Is it hard to build a support system, knowing many of them may croak?  Sure.  When it happens it is devestating because you're losing a friend, but it's doublely hard because you're left feeling "that could be us" and also a bit of "oh thank goodness that wasn't us."  But it's absolutely worth it to make those connections.  There are many patients & caregivers here who have been in ya'll shoes.  There are success stories.  Some still here for many years!

      I still focus on the short term.  Long term for me is a few months ahead.  And that's okay.  I still talk about our retirement dreams with my husband.  Even if we both know deep down that after making it this far I'm on the successful end of the curve.  And at 39 the odds I'll get 20, 25, or 30 more years are slim.  The fact is with it in my brain we'll be lucky to get another year.  But I've always been one to sneer at averages – I've always been was above average!  : )

      I'd encourage you to seek counseling – it doesn't even have to be a formal thing, maybe just a spiritual mentor, of another caregiver that can indentify / listen.

      I hope the treatment works well for your husband.  I tell my kids it's like playing whack-a-mole.  whack-a-mel!  It is always a battle.  Smash it down and it pops up somewhere else.  You can't always look at only NED as a success.  Sometimes merely stable is a terrific success. 

      Best of luck,

      Amy Busby

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      Amy Busby
      Participant

      Hi Emily!  I was dx stage 3 in 2003 and after 6 years NED,  mel. returned with a vengence.  I have been battling hard since the summer of 2009.  I've been there and done that with just about everything out there.

      Long ago I had the pleasure of becoming friends with Charlie S.  His advice to you was spot on & I learned so much from him in terms of both my physical battle and my mental one. 

      In many ways I had a much easier time mentally with stage 4 than with stage 3.  The fear of the unknown was almost unbearable / paralyzing.  Active combat at least gave me goals!  For me coming to terms that at some point melanoma would kill me was almost freeing in many ways.  I have always said "melanoma will probably kill me, but not today!"

      I have a very strong Christian faith.  I can not emphaise enough how much peace / comfort / strength this has given me.  I am sure anyone's religious beliefs can help them in the same way.  Having a community of fellow believers, particularly fellow mel. warriors, has been a tremendous source of encouragement.

      Is it hard to build a support system, knowing many of them may croak?  Sure.  When it happens it is devestating because you're losing a friend, but it's doublely hard because you're left feeling "that could be us" and also a bit of "oh thank goodness that wasn't us."  But it's absolutely worth it to make those connections.  There are many patients & caregivers here who have been in ya'll shoes.  There are success stories.  Some still here for many years!

      I still focus on the short term.  Long term for me is a few months ahead.  And that's okay.  I still talk about our retirement dreams with my husband.  Even if we both know deep down that after making it this far I'm on the successful end of the curve.  And at 39 the odds I'll get 20, 25, or 30 more years are slim.  The fact is with it in my brain we'll be lucky to get another year.  But I've always been one to sneer at averages – I've always been was above average!  : )

      I'd encourage you to seek counseling – it doesn't even have to be a formal thing, maybe just a spiritual mentor, of another caregiver that can indentify / listen.

      I hope the treatment works well for your husband.  I tell my kids it's like playing whack-a-mole.  whack-a-mel!  It is always a battle.  Smash it down and it pops up somewhere else.  You can't always look at only NED as a success.  Sometimes merely stable is a terrific success. 

      Best of luck,

      Amy Busby

      Loading spinner
      Amy Busby
      Participant

      Hi Emily!  I was dx stage 3 in 2003 and after 6 years NED,  mel. returned with a vengence.  I have been battling hard since the summer of 2009.  I've been there and done that with just about everything out there.

      Long ago I had the pleasure of becoming friends with Charlie S.  His advice to you was spot on & I learned so much from him in terms of both my physical battle and my mental one. 

      In many ways I had a much easier time mentally with stage 4 than with stage 3.  The fear of the unknown was almost unbearable / paralyzing.  Active combat at least gave me goals!  For me coming to terms that at some point melanoma would kill me was almost freeing in many ways.  I have always said "melanoma will probably kill me, but not today!"

      I have a very strong Christian faith.  I can not emphaise enough how much peace / comfort / strength this has given me.  I am sure anyone's religious beliefs can help them in the same way.  Having a community of fellow believers, particularly fellow mel. warriors, has been a tremendous source of encouragement.

      Is it hard to build a support system, knowing many of them may croak?  Sure.  When it happens it is devestating because you're losing a friend, but it's doublely hard because you're left feeling "that could be us" and also a bit of "oh thank goodness that wasn't us."  But it's absolutely worth it to make those connections.  There are many patients & caregivers here who have been in ya'll shoes.  There are success stories.  Some still here for many years!

      I still focus on the short term.  Long term for me is a few months ahead.  And that's okay.  I still talk about our retirement dreams with my husband.  Even if we both know deep down that after making it this far I'm on the successful end of the curve.  And at 39 the odds I'll get 20, 25, or 30 more years are slim.  The fact is with it in my brain we'll be lucky to get another year.  But I've always been one to sneer at averages – I've always been was above average!  : )

      I'd encourage you to seek counseling – it doesn't even have to be a formal thing, maybe just a spiritual mentor, of another caregiver that can indentify / listen.

      I hope the treatment works well for your husband.  I tell my kids it's like playing whack-a-mole.  whack-a-mel!  It is always a battle.  Smash it down and it pops up somewhere else.  You can't always look at only NED as a success.  Sometimes merely stable is a terrific success. 

      Best of luck,

      Amy Busby

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