When does the black cloud start to lift

dcsecs
dcsecs Member Posts: 5
edited March 2014 in Head and Neck Cancer #1
I have been reading the message board since July of 2008 when my husband was first diagnosed with SCC lVa, base of tongue. He had 3 rounds of induction chemo and 35 radiation treatments. His last radiation treatment was in 12/08. He had a neck dissection with no sign of cancer in nodes, just scar tissue. That was in February. He has had a PET scan and a number of CT scans and all have come back NED. He saw the head and neck surgeon today and was told everything looks great and made his appointment for his 1 year post treatment visit. Looking back at what I have written it all sounds pretty good, doesn't it? My question is: Why can't we get out from under the black cloud that is hanging over us? I feel like we live from appointment to appointment, from scan to scan, and always waiting for the other shoe to drop. I know we should be happy that he is cancer free. We feel blessed, we feel relieved, but never happy. I think we are both afraid to let our guard down, just in case something shows up. Aside from the after effects of treatment (no taste, no saliva, neuropathy) he is healthy. He never lost the ability to swallow. Does anyone have any words of wisdom about this? Does it just take more time? Is there some secret to dealing with the loss of your life before cancer. It seems like for us there are two places in time, before cancer and after cancer. I wish no one had to go through this but it is helpful to read all the posts and know there are others who understand.
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Comments

  • delnative
    delnative Member Posts: 450
    My cousin's thoughts
    I guess I'm fortunate that my black cloud blew away pretty quickly. I think that coincided with the phone call from my lead doctor before I began treatment that my tonsil cancer (Stage III) was caused by HPV and my chances thus were much better than if it had been caused by something else. I've been upbeat ever since; I'm now 13 months out of treatment and will have a PET scan next month. Honestly, I'm not worried about it.
    However, your story reminded me of something my dear cousin mentioned to me in an e-mail when I told her I had been diagnosed with cancer. She's a breast cancer survivor. Her mother survived it, but my cousin's younger sister, who also was very dear to me, died from it.
    My surviving cousin told me that her experience with cancer was very much like a sentence that never ended with a period. All there was was another comma. It sounds to me like you're waiting for the period, and getting nothing but commas.
    I saved my cousin's e-mail, because much of what she told me was so powerful and life-affirming that I believe it helped me get through my treatment. What follows is an excerpt from her e-mail. I hope you find it helpful.

    --Jim in Delaware

    She wrote:
    "I thought I had been in pretty good emotional shape going into the
    surgery, but hearing this news -- alone in my hospital bed -- was a real
    shock. I remember lying awake for many hours, worried, scared that the
    tumor, which started out too small to feel, was so aggressive that it
    had already invaded many lymph nodes. Then I was overcome with the
    presence of an all-powerful God. Really quite Old-Testament in the
    awesome aspect of the power. And I was told that nothing, certainly not
    cancer, could stand in the face of this power. Cancer disintegrates in
    the face of such power. What I was left with was the call to faith: "all
    shall be well, and all shall be well, and all manner of things shall be
    well." I was left with the word that I needed to leave my healing to our
    Lord, and that my job was to be about my Father's business -- loving and
    serving."
  • ratface
    ratface Member Posts: 1,337 Member
    delnative said:

    My cousin's thoughts
    I guess I'm fortunate that my black cloud blew away pretty quickly. I think that coincided with the phone call from my lead doctor before I began treatment that my tonsil cancer (Stage III) was caused by HPV and my chances thus were much better than if it had been caused by something else. I've been upbeat ever since; I'm now 13 months out of treatment and will have a PET scan next month. Honestly, I'm not worried about it.
    However, your story reminded me of something my dear cousin mentioned to me in an e-mail when I told her I had been diagnosed with cancer. She's a breast cancer survivor. Her mother survived it, but my cousin's younger sister, who also was very dear to me, died from it.
    My surviving cousin told me that her experience with cancer was very much like a sentence that never ended with a period. All there was was another comma. It sounds to me like you're waiting for the period, and getting nothing but commas.
    I saved my cousin's e-mail, because much of what she told me was so powerful and life-affirming that I believe it helped me get through my treatment. What follows is an excerpt from her e-mail. I hope you find it helpful.

    --Jim in Delaware

    She wrote:
    "I thought I had been in pretty good emotional shape going into the
    surgery, but hearing this news -- alone in my hospital bed -- was a real
    shock. I remember lying awake for many hours, worried, scared that the
    tumor, which started out too small to feel, was so aggressive that it
    had already invaded many lymph nodes. Then I was overcome with the
    presence of an all-powerful God. Really quite Old-Testament in the
    awesome aspect of the power. And I was told that nothing, certainly not
    cancer, could stand in the face of this power. Cancer disintegrates in
    the face of such power. What I was left with was the call to faith: "all
    shall be well, and all shall be well, and all manner of things shall be
    well." I was left with the word that I needed to leave my healing to our
    Lord, and that my job was to be about my Father's business -- loving and
    serving."

    A key question?
    I am still in treatment so not qualified to answer this. I think you ask a very key question which I ponder from time to time. I wonder if I can ever find peace in my life again? It will be interesting to see what some of the old salts around here respond as this is a major philosophical question. Hoping to learn from this thread.
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    ratface said:

    A key question?
    I am still in treatment so not qualified to answer this. I think you ask a very key question which I ponder from time to time. I wonder if I can ever find peace in my life again? It will be interesting to see what some of the old salts around here respond as this is a major philosophical question. Hoping to learn from this thread.

    "All we are saying is give peace a chance"
    Define peace and you will find peace. Really. If you truly take it upon yourself to go on that expedition to discover what peace is for you, you will find peace.

    Cancer has little to do with it, in that regard.

    But I do not think that this is what you are asking, RF, even though the answers are probably not so different.

    I like to say, as you must know by now, that cancer is predisposed biologically to take something from us, physically, maybe even our very lives. But it is not designed to take away our mental faculties, our emotions, our inner strengths. Those traits we use to wrestle with the news and with the treatments and with the consequences of the treatments, and it is really up to us not to let cancer have more than biology has entitled it to have.

    Some folks let cancer destroy their lives, destroy their marriages, destroy their careers. This is understandable, really. Some folks defy cancer to the point that they grow from it, become stronger, more assertive people than they were before, as if the cancer altered their egos in a positive way (although it didn't: that was always there, I believe, if untapped).

    Some people defy cancer simply to the point that they go on with their lives and quit worrying about it. Or so it seems.

    As for happiness specifically, I know that some folks take on new meaning from their survival. They recognize the reality of their mortality and, like butterflies emerging from cocoons, they become beautiful and articulate individuals involved in the betterment of their personal lives, their communities and the world.

    Some, like me, find personal fulfillment, at least in part, by becoming involved with sites like this, where I can share my own experiences and feel useful to some extent.

    Regrettably, some folks also plunge into darkness from which they never recover completely if at all.

    Peace is something, RF, that you discover for yourself. Cancer, it seems, can be an impetus for it, but, really, it is all about you and how you decide to live with it and beyond it.

    My thoughts.

    Take care,

    Joe
  • JGE
    JGE Member Posts: 51

    "All we are saying is give peace a chance"
    Define peace and you will find peace. Really. If you truly take it upon yourself to go on that expedition to discover what peace is for you, you will find peace.

    Cancer has little to do with it, in that regard.

    But I do not think that this is what you are asking, RF, even though the answers are probably not so different.

    I like to say, as you must know by now, that cancer is predisposed biologically to take something from us, physically, maybe even our very lives. But it is not designed to take away our mental faculties, our emotions, our inner strengths. Those traits we use to wrestle with the news and with the treatments and with the consequences of the treatments, and it is really up to us not to let cancer have more than biology has entitled it to have.

    Some folks let cancer destroy their lives, destroy their marriages, destroy their careers. This is understandable, really. Some folks defy cancer to the point that they grow from it, become stronger, more assertive people than they were before, as if the cancer altered their egos in a positive way (although it didn't: that was always there, I believe, if untapped).

    Some people defy cancer simply to the point that they go on with their lives and quit worrying about it. Or so it seems.

    As for happiness specifically, I know that some folks take on new meaning from their survival. They recognize the reality of their mortality and, like butterflies emerging from cocoons, they become beautiful and articulate individuals involved in the betterment of their personal lives, their communities and the world.

    Some, like me, find personal fulfillment, at least in part, by becoming involved with sites like this, where I can share my own experiences and feel useful to some extent.

    Regrettably, some folks also plunge into darkness from which they never recover completely if at all.

    Peace is something, RF, that you discover for yourself. Cancer, it seems, can be an impetus for it, but, really, it is all about you and how you decide to live with it and beyond it.

    My thoughts.

    Take care,

    Joe

    BC = Before Cancer
    I long for the naïve way I lived prior to cancer. The assumption of a long life. No (real) fear of death.

    You never get that back

    Every time you start adding up the "costs", start counting your blessings INSTEAD!
  • SASH
    SASH Member Posts: 421 Member
    JGE said:

    BC = Before Cancer
    I long for the naïve way I lived prior to cancer. The assumption of a long life. No (real) fear of death.

    You never get that back

    Every time you start adding up the "costs", start counting your blessings INSTEAD!

    a bit of humor
    After it rains
  • fishingirl
    fishingirl Member Posts: 188

    "All we are saying is give peace a chance"
    Define peace and you will find peace. Really. If you truly take it upon yourself to go on that expedition to discover what peace is for you, you will find peace.

    Cancer has little to do with it, in that regard.

    But I do not think that this is what you are asking, RF, even though the answers are probably not so different.

    I like to say, as you must know by now, that cancer is predisposed biologically to take something from us, physically, maybe even our very lives. But it is not designed to take away our mental faculties, our emotions, our inner strengths. Those traits we use to wrestle with the news and with the treatments and with the consequences of the treatments, and it is really up to us not to let cancer have more than biology has entitled it to have.

    Some folks let cancer destroy their lives, destroy their marriages, destroy their careers. This is understandable, really. Some folks defy cancer to the point that they grow from it, become stronger, more assertive people than they were before, as if the cancer altered their egos in a positive way (although it didn't: that was always there, I believe, if untapped).

    Some people defy cancer simply to the point that they go on with their lives and quit worrying about it. Or so it seems.

    As for happiness specifically, I know that some folks take on new meaning from their survival. They recognize the reality of their mortality and, like butterflies emerging from cocoons, they become beautiful and articulate individuals involved in the betterment of their personal lives, their communities and the world.

    Some, like me, find personal fulfillment, at least in part, by becoming involved with sites like this, where I can share my own experiences and feel useful to some extent.

    Regrettably, some folks also plunge into darkness from which they never recover completely if at all.

    Peace is something, RF, that you discover for yourself. Cancer, it seems, can be an impetus for it, but, really, it is all about you and how you decide to live with it and beyond it.

    My thoughts.

    Take care,

    Joe

    Soccerfreaks....I still just
    Soccerfreaks....I still just can't believe what a wonderful person you seem to be:) I still have faith in truly beautiful people. Kind, yet imformative. I am not trying to stroke your ego either lol!!! But you know what so funny...everytime i see your picture, you remind me of Vanilla Ice. That rap singer for quite a while ago. lol!!!

    Fishingirl (Cindy)
  • fishingirl
    fishingirl Member Posts: 188

    "All we are saying is give peace a chance"
    Define peace and you will find peace. Really. If you truly take it upon yourself to go on that expedition to discover what peace is for you, you will find peace.

    Cancer has little to do with it, in that regard.

    But I do not think that this is what you are asking, RF, even though the answers are probably not so different.

    I like to say, as you must know by now, that cancer is predisposed biologically to take something from us, physically, maybe even our very lives. But it is not designed to take away our mental faculties, our emotions, our inner strengths. Those traits we use to wrestle with the news and with the treatments and with the consequences of the treatments, and it is really up to us not to let cancer have more than biology has entitled it to have.

    Some folks let cancer destroy their lives, destroy their marriages, destroy their careers. This is understandable, really. Some folks defy cancer to the point that they grow from it, become stronger, more assertive people than they were before, as if the cancer altered their egos in a positive way (although it didn't: that was always there, I believe, if untapped).

    Some people defy cancer simply to the point that they go on with their lives and quit worrying about it. Or so it seems.

    As for happiness specifically, I know that some folks take on new meaning from their survival. They recognize the reality of their mortality and, like butterflies emerging from cocoons, they become beautiful and articulate individuals involved in the betterment of their personal lives, their communities and the world.

    Some, like me, find personal fulfillment, at least in part, by becoming involved with sites like this, where I can share my own experiences and feel useful to some extent.

    Regrettably, some folks also plunge into darkness from which they never recover completely if at all.

    Peace is something, RF, that you discover for yourself. Cancer, it seems, can be an impetus for it, but, really, it is all about you and how you decide to live with it and beyond it.

    My thoughts.

    Take care,

    Joe

    Soccerfreaks....I still just
    Soccerfreaks....I still just can't believe what a wonderful person you seem to be:) I still have faith in truly beautiful people. Kind, yet imformative. I am not trying to stroke your ego either lol!!! But you know what so funny...everytime i see your picture, you remind me of Vanilla Ice. That rap singer for quite a while ago. lol!!!

    Fishingirl (Cindy)
  • fishingirl
    fishingirl Member Posts: 188

    "All we are saying is give peace a chance"
    Define peace and you will find peace. Really. If you truly take it upon yourself to go on that expedition to discover what peace is for you, you will find peace.

    Cancer has little to do with it, in that regard.

    But I do not think that this is what you are asking, RF, even though the answers are probably not so different.

    I like to say, as you must know by now, that cancer is predisposed biologically to take something from us, physically, maybe even our very lives. But it is not designed to take away our mental faculties, our emotions, our inner strengths. Those traits we use to wrestle with the news and with the treatments and with the consequences of the treatments, and it is really up to us not to let cancer have more than biology has entitled it to have.

    Some folks let cancer destroy their lives, destroy their marriages, destroy their careers. This is understandable, really. Some folks defy cancer to the point that they grow from it, become stronger, more assertive people than they were before, as if the cancer altered their egos in a positive way (although it didn't: that was always there, I believe, if untapped).

    Some people defy cancer simply to the point that they go on with their lives and quit worrying about it. Or so it seems.

    As for happiness specifically, I know that some folks take on new meaning from their survival. They recognize the reality of their mortality and, like butterflies emerging from cocoons, they become beautiful and articulate individuals involved in the betterment of their personal lives, their communities and the world.

    Some, like me, find personal fulfillment, at least in part, by becoming involved with sites like this, where I can share my own experiences and feel useful to some extent.

    Regrettably, some folks also plunge into darkness from which they never recover completely if at all.

    Peace is something, RF, that you discover for yourself. Cancer, it seems, can be an impetus for it, but, really, it is all about you and how you decide to live with it and beyond it.

    My thoughts.

    Take care,

    Joe

    Soccerfreaks....I still just
    Soccerfreaks....I still just can't believe what a wonderful person you seem to be:) I still have faith in truly beautiful people. Kind, yet imformative. I am not trying to stroke your ego either lol!!! But you know what so funny...everytime i see your picture, you remind me of Vanilla Ice. That rap singer for quite a while ago. lol!!!

    Fishingirl (Cindy)
  • SASH
    SASH Member Posts: 421 Member

    Soccerfreaks....I still just
    Soccerfreaks....I still just can't believe what a wonderful person you seem to be:) I still have faith in truly beautiful people. Kind, yet imformative. I am not trying to stroke your ego either lol!!! But you know what so funny...everytime i see your picture, you remind me of Vanilla Ice. That rap singer for quite a while ago. lol!!!

    Fishingirl (Cindy)

    Freaks, Soccer that is
    And I'm Soccer's inspiration. I force him to tell people that. LOL
  • Scambuster
    Scambuster Member Posts: 973
    Lifting the Cloud
    Hi Dsecs and fellow survivors,

    I am 7 weeks out of treatment and have had a bumpy road and can also relate to the "Black Cloud' Syndrome. I am still searching for answers but have found some valuable things you may wish to consider to help you remove the cloud.

    I recently downloaded Lance Armstrong's book titled 'It's Not About The Bike'. I would highly recommend you either download (via torrent bit) or just buy the book. It's a fascinating and inspiring story of survival and a remarkable comeback where he has used his cancer to reinvigorate his life.

    The second recommendation I make is to get the book by Louise Haye "You can heal your life'. I read this years ago and it helped me in many many ways. I will buy another copy tomorrow and start the exercises she uses. It sounds like you are reinforcing the 'Black Cloud syndrome' with your patterns of thinking and speaking. I detect that from your message.

    You can also download the film by the same name where they have lots of inspirational speakers giving advice on exactly why you are where you are and how you can change that. It relates a lot about affirming (doing +ve Affirmations) and learning the correct techniques to change your patterns of thinking and speaking to open up to the good things and allowing them into your life.

    I think the change in behaviour patterns will definitely help you a lot. Just look at people who have survived and have a wonderful attitude while others suffer in fear. You will understand the differnce if you read her book and watch the movie (Also and easy download via vuze.com torrent bit) If you follow this path, make sure you really understand how to work with Positive Affirmations as they are very powerful and they definitely work so you have a way out if you so choose.

    Another possible path is to see a psychiatrist as many Cancer survivors go undiagnosed with 'Depression'. I was in terrible shape 2 weeks out from treatment and was readmitted to hospital. The doctors freaked out and called in a psychiatrist, they changed the medications around and I was turned around in a few days and now sleep well and feel in far better shape so that could be a smart avenue to try as it could help you get through this phase if that is the case as depression comes in all shapes and sizes and as I said often goes undiagnosed.

    Good luck with this. I hope the cloud lifts and you can get back to a 'normal life' and enjoy things more like your pre cancer days.

    REgds
    Craig in China
  • cwcad
    cwcad Member Posts: 117

    Lifting the Cloud
    Hi Dsecs and fellow survivors,

    I am 7 weeks out of treatment and have had a bumpy road and can also relate to the "Black Cloud' Syndrome. I am still searching for answers but have found some valuable things you may wish to consider to help you remove the cloud.

    I recently downloaded Lance Armstrong's book titled 'It's Not About The Bike'. I would highly recommend you either download (via torrent bit) or just buy the book. It's a fascinating and inspiring story of survival and a remarkable comeback where he has used his cancer to reinvigorate his life.

    The second recommendation I make is to get the book by Louise Haye "You can heal your life'. I read this years ago and it helped me in many many ways. I will buy another copy tomorrow and start the exercises she uses. It sounds like you are reinforcing the 'Black Cloud syndrome' with your patterns of thinking and speaking. I detect that from your message.

    You can also download the film by the same name where they have lots of inspirational speakers giving advice on exactly why you are where you are and how you can change that. It relates a lot about affirming (doing +ve Affirmations) and learning the correct techniques to change your patterns of thinking and speaking to open up to the good things and allowing them into your life.

    I think the change in behaviour patterns will definitely help you a lot. Just look at people who have survived and have a wonderful attitude while others suffer in fear. You will understand the differnce if you read her book and watch the movie (Also and easy download via vuze.com torrent bit) If you follow this path, make sure you really understand how to work with Positive Affirmations as they are very powerful and they definitely work so you have a way out if you so choose.

    Another possible path is to see a psychiatrist as many Cancer survivors go undiagnosed with 'Depression'. I was in terrible shape 2 weeks out from treatment and was readmitted to hospital. The doctors freaked out and called in a psychiatrist, they changed the medications around and I was turned around in a few days and now sleep well and feel in far better shape so that could be a smart avenue to try as it could help you get through this phase if that is the case as depression comes in all shapes and sizes and as I said often goes undiagnosed.

    Good luck with this. I hope the cloud lifts and you can get back to a 'normal life' and enjoy things more like your pre cancer days.

    REgds
    Craig in China

    Seek help
    Hey I am a base of the tongue cancer survivor. Stage 4. did all of the treatments of chemo and radiation. In February of 2010 it will be three years since diagnosis. It wasn't until I started reading on this forum that I really came to admit that I am depressed. For the longest time all I did was wait to get better. Waited and waited. In fact I am still waiting to get better.

    Writing on the forum threads at least got me to thinking about getting help from a psychologist. My GP has me lined up with his cohort starting in December. I will attend. Not that I am crazy but because I am depressed. Fighting to stay alive from the treatments of cancer left me unable to cope with life's situations. It seems the harder I try to get back to normal the more it tells me that I am not normal. I am a cancer survivor. That is my new normal. the best word that I have heard in a long time. It explains,at least for me, that I need to get to work on getting used to the new me. The old me is not coming back. What you see is what you get. Up until recently I did not like what I was seeing in the mirror. Who was this man in the mirror? Nearly a third of my body gone from weight loss. Strength was all but non existant. There were times that I was so weak that I often found it difficult to keep my head upright when sitting in a chair. Fatigue that caused me to believe that I was lazy and not doing what was needed. I am glad that Lance Armstrong's word in a book were and are inspiring to other cancer patients but for me hearing and seeing this super man fight and over come his cancer actually kept me in emotional turmoil. Why is it that he can get over his treatment and thrive? In fact he became a world class competitor. I, on the other hand, think it is an accomplishment to stay awake during the day light hours. To be able to sit and to be able to hold my head erect and not have it feel as if it is work.

    The old healthy guy in me would never admit that he was weak, afraid or tired. The new me is all of those. Don't like it at all. Just what I can do about it remains to be seen. I told my son and wife three years ago that I would do what ever it takes to stay alive and beat my cancer. I guess that means I need to get some mental work done. I am depressed. Everyone says it is common. Getting over being depressed may be my biggest hurdle to date. I do not want to go to a doctor that will ask me how I feel. I hate stupid questions. I feel alive,grateful, and terrible. I want to know how to deal with those feelings.

    My wife says that I need to get over these feelings. she is correct. There are a lot of things that I need to do. I am going to seek mental help on this one. The treatments left me cancer free. But the person left after the treatments is not the same and I need help to accept the new normal me.

    Please don't wait to seek help as I did. Depression can hold one's recovery back. I feel, when I look back on the last two years, that depression certainly has held me back on the road to recovery.
  • dcsecs
    dcsecs Member Posts: 5
    cwcad said:

    Seek help
    Hey I am a base of the tongue cancer survivor. Stage 4. did all of the treatments of chemo and radiation. In February of 2010 it will be three years since diagnosis. It wasn't until I started reading on this forum that I really came to admit that I am depressed. For the longest time all I did was wait to get better. Waited and waited. In fact I am still waiting to get better.

    Writing on the forum threads at least got me to thinking about getting help from a psychologist. My GP has me lined up with his cohort starting in December. I will attend. Not that I am crazy but because I am depressed. Fighting to stay alive from the treatments of cancer left me unable to cope with life's situations. It seems the harder I try to get back to normal the more it tells me that I am not normal. I am a cancer survivor. That is my new normal. the best word that I have heard in a long time. It explains,at least for me, that I need to get to work on getting used to the new me. The old me is not coming back. What you see is what you get. Up until recently I did not like what I was seeing in the mirror. Who was this man in the mirror? Nearly a third of my body gone from weight loss. Strength was all but non existant. There were times that I was so weak that I often found it difficult to keep my head upright when sitting in a chair. Fatigue that caused me to believe that I was lazy and not doing what was needed. I am glad that Lance Armstrong's word in a book were and are inspiring to other cancer patients but for me hearing and seeing this super man fight and over come his cancer actually kept me in emotional turmoil. Why is it that he can get over his treatment and thrive? In fact he became a world class competitor. I, on the other hand, think it is an accomplishment to stay awake during the day light hours. To be able to sit and to be able to hold my head erect and not have it feel as if it is work.

    The old healthy guy in me would never admit that he was weak, afraid or tired. The new me is all of those. Don't like it at all. Just what I can do about it remains to be seen. I told my son and wife three years ago that I would do what ever it takes to stay alive and beat my cancer. I guess that means I need to get some mental work done. I am depressed. Everyone says it is common. Getting over being depressed may be my biggest hurdle to date. I do not want to go to a doctor that will ask me how I feel. I hate stupid questions. I feel alive,grateful, and terrible. I want to know how to deal with those feelings.

    My wife says that I need to get over these feelings. she is correct. There are a lot of things that I need to do. I am going to seek mental help on this one. The treatments left me cancer free. But the person left after the treatments is not the same and I need help to accept the new normal me.

    Please don't wait to seek help as I did. Depression can hold one's recovery back. I feel, when I look back on the last two years, that depression certainly has held me back on the road to recovery.

    lots to think about
    cwcad, encouraging to hear you are almost three years from diagnosis. Congrats. Thanks for your advice. I think you hit the nail on the head. I do think my husband is dealing with some depression. I don't know how you could go through this and not have some degree of it. We both could use some professional advice on how to accept the changes. We have had the conversation about accepting the "new normal" many times. I don't think he has grieved for his old self yet and without doing that I don't know how he can accept his new self. Do you have taste and salivary problems? Eating has become very mechanical for him and it has become a chore. I have read posts on here where people have had some salivary function or taste return many months or even years after treatment so we still have hope.

    Sitting here in my living room, watching it snow, a beautiful Christmas tree lighting up the room, soft Christmas music playing, I realize how blessed we are. In so many ways, but mostly because even though he is different than before his treatment, he is still with us and our family is together. Thanks again for your advice and I hope you and your family have a peaceful holiday season and that 2010 is a healthy (mind &body) and happy year.
  • SASH
    SASH Member Posts: 421 Member
    dcsecs said:

    lots to think about
    cwcad, encouraging to hear you are almost three years from diagnosis. Congrats. Thanks for your advice. I think you hit the nail on the head. I do think my husband is dealing with some depression. I don't know how you could go through this and not have some degree of it. We both could use some professional advice on how to accept the changes. We have had the conversation about accepting the "new normal" many times. I don't think he has grieved for his old self yet and without doing that I don't know how he can accept his new self. Do you have taste and salivary problems? Eating has become very mechanical for him and it has become a chore. I have read posts on here where people have had some salivary function or taste return many months or even years after treatment so we still have hope.

    Sitting here in my living room, watching it snow, a beautiful Christmas tree lighting up the room, soft Christmas music playing, I realize how blessed we are. In so many ways, but mostly because even though he is different than before his treatment, he is still with us and our family is together. Thanks again for your advice and I hope you and your family have a peaceful holiday season and that 2010 is a healthy (mind &body) and happy year.

    Salivary Function
    Mine started to come back somewhat just recently from rads. I still carry a bottle of water with me, but find I don't have to drink as often. I also can sleep longer without having to get a sip during the night.

    It isn't perfect but it is getting better. This is after almost 10 years post radiation. In my opinion this is a small price to pay for being alive.
  • fishingirl
    fishingirl Member Posts: 188
    Starts to lift
    For me it starts to lift when you accompliced something one day. Like if you felt just a tiny bit of progress. Like got to lessen your pain pills, swallowed a bit better etc.

    Cindy
  • lyolan1
    lyolan1 Member Posts: 95
    Black Cloud
    Hello dcsec, It sounds like things are going well for you and your husband. I read Jims post from his sister, I am not a Bible person or religious, but those words were unbelieveably powerful. All shall be well, and all shall be well, and all things shall be well. You must accept your good news for what it is, Good News. I was also active in a program called Adult Children of Alcoholics in AA. One of first and basic building blocks of being happy and healthy was trying to live your life "one day at a time". Esentially, it means that worrying about circumstances that are beyond your control that may or may not happen only ruins the day that is going on today. Accept that for today, all is well. Abraham Lincoln also said,"Most people are as happy as they want to be". Have a good holiday and be grateful for the good news and kiss the black cloud good bye. Alex.
  • lyolan1
    lyolan1 Member Posts: 95
    Black Cloud
    Hello dcecs, I did not mean to be condescending in my prior post. As is always the case, everyone is different and everyone chooses their own path. If your "Black Cloud" is a more serious case of depression, professional help is probably the way to go. I have had a tough 5 yrs myself. I feel that I have been lucky, and probably am too simplistic in my approach. A:ex.
  • cwcad
    cwcad Member Posts: 117
    dcsecs said:

    lots to think about
    cwcad, encouraging to hear you are almost three years from diagnosis. Congrats. Thanks for your advice. I think you hit the nail on the head. I do think my husband is dealing with some depression. I don't know how you could go through this and not have some degree of it. We both could use some professional advice on how to accept the changes. We have had the conversation about accepting the "new normal" many times. I don't think he has grieved for his old self yet and without doing that I don't know how he can accept his new self. Do you have taste and salivary problems? Eating has become very mechanical for him and it has become a chore. I have read posts on here where people have had some salivary function or taste return many months or even years after treatment so we still have hope.

    Sitting here in my living room, watching it snow, a beautiful Christmas tree lighting up the room, soft Christmas music playing, I realize how blessed we are. In so many ways, but mostly because even though he is different than before his treatment, he is still with us and our family is together. Thanks again for your advice and I hope you and your family have a peaceful holiday season and that 2010 is a healthy (mind &body) and happy year.

    Eating gets better
    I will be getting a pet ct scan in January of 2010 for my three year check up. I look forward to seeing the results.

    Taste is pretty good for me. I have false teeth so taste does not mean so much to me unless it can be eaten without my teeth. Something that I have been doing more and more of late. White ground pepper is my favorite seasoning. It is not so much the immediate taste but the lingering effect that it has.

    One remnant of the treatments has been my throat closing involuntarily when swallowing liguids. It stymies my ability to breath until I become fully relaxed. The first few times that it happened I really thought that I was going to die from lack of air. Luckily my wife talked me through the first few times that it happened. Telling me to relax. Not to be so tense and make it easy to breathe. Good thing that I trusted her because it is hard to relax when you don't know if you will get another breath. Now I tend to be more relaxed when it happens and it stops quicker now than at first.

    Loss of physical energy has been a bane for me as well. I tend to think now that it is because of my depression that it has lingered so long. I am working on getting some therapy to work (although belatedly) on my bouts with depression.
  • thegirlfriend
    thegirlfriend Member Posts: 142
    lyolan1 said:

    Black Cloud
    Hello dcecs, I did not mean to be condescending in my prior post. As is always the case, everyone is different and everyone chooses their own path. If your "Black Cloud" is a more serious case of depression, professional help is probably the way to go. I have had a tough 5 yrs myself. I feel that I have been lucky, and probably am too simplistic in my approach. A:ex.

    ok i need a new pep talk and advice.
    since there is so much posted everywhere with similiar answers, i thought i would just ask one more time instead of looking thru so many pages.
    Ok, today makes 6 weeks since my boyfriend finished his treatment of 6 weeks of radiation and chemo once a week. We knew once he was done, he would go back home (alone, as I live 8 hours away)and would continue to "cook" for the next 3-4 weeks at least. Is it common that he still be in pain (the soft pallet) still lots of mucous, very fatigued, still only feeding 3x a day (had to get the tube 2 weeks after treatment ended, kept losing weight)naseous as well.
    Today was such a rotten day, as he could barely even get out of bed. Just to the bathroom, dont even know if he ate since he was so nauseous. Is this common or normal? Its really messing with his mind alot as he knew he had to give some time as you all told me. But its now been as long out of treatment as the actual treatment, and he still feels so awful.
    only change was that his GP found a throat infection from a culture so he should now be finishing the antibiotics. He goes to all cancer related drs on Tues. I know he will tell them everything, but pls tell me this can be common. I dont want to think that there is something else wrong.

    please, words of wisdom and comfort for us both?
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member

    Soccerfreaks....I still just
    Soccerfreaks....I still just can't believe what a wonderful person you seem to be:) I still have faith in truly beautiful people. Kind, yet imformative. I am not trying to stroke your ego either lol!!! But you know what so funny...everytime i see your picture, you remind me of Vanilla Ice. That rap singer for quite a while ago. lol!!!

    Fishingirl (Cindy)

    Vanilla Ice?
    Vanilla Ice? Vanilla Ice?

    Now I'M depressed!

    Hope and humor!

    Take care,

    Joe
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    dcsecs said:

    lots to think about
    cwcad, encouraging to hear you are almost three years from diagnosis. Congrats. Thanks for your advice. I think you hit the nail on the head. I do think my husband is dealing with some depression. I don't know how you could go through this and not have some degree of it. We both could use some professional advice on how to accept the changes. We have had the conversation about accepting the "new normal" many times. I don't think he has grieved for his old self yet and without doing that I don't know how he can accept his new self. Do you have taste and salivary problems? Eating has become very mechanical for him and it has become a chore. I have read posts on here where people have had some salivary function or taste return many months or even years after treatment so we still have hope.

    Sitting here in my living room, watching it snow, a beautiful Christmas tree lighting up the room, soft Christmas music playing, I realize how blessed we are. In so many ways, but mostly because even though he is different than before his treatment, he is still with us and our family is together. Thanks again for your advice and I hope you and your family have a peaceful holiday season and that 2010 is a healthy (mind &body) and happy year.

    a good start!
    Acknowledgment is a great start, dcsecs! Hopefully hub is with you in this regard, with respect to seeking some professional assistance. Typically, us men are reticent to seek such help for reasons both cultural and genetic, I am fairly sure.

    I was particularly intrigued by your comment regarding grieving for 'his old self'. I have much respect for someone who can recognize that from outside of the actual experience and suspect you are a woman of sensitivity and intellect.

    This is not meant as self-promotion (I have nothing to gain from it) but I wrote something while still in the hospital recovering from surgery (and still on excellent drugs) that I posted here that may speak to what your husband is experiencing with respect to that 'old self' grieving. I am largely self-critical to a fault, but still enjoy reading this from time to time, although it has its faults.

    It is called Part of My Soul, and the link (which, again, is in this very site) is http://csn.cancer.org/node/160283. Not sure if you can get there from here :), but it is on my Expressions pages as well.

    In any event, if hub or you find encouragement from lengthy success stories, the humble SASH is a nearly 10 year survivor of Head/Neck cancer, and I am now beyond four years, although I have had a bump along the way (no pun intended) that SASH avoided.

    There are many, many, examples of folks herein who have and are surviving and living life large.

    Best wishes to hub and to all of his loved ones.

    Take care,

    Joe