Hi, I am new here.

itsallgood2
itsallgood2 Member Posts: 7
edited March 2014 in Caregivers #1
Hello. I am new to this site, but I am reaching out as a caregiver because my husband has cancer. We have been married 12 years and our life has been wonderful.
My husband was diagnosed in Oct 2007 with ocular melanoma with spread to the liver/spleen/brain. He has been going through radiation and chemo treatments ever since. Every day is a new thing either it gets better or it doesn't. My husbands cancer has spread very aggressively the past few months. In December 2008 they told my husband he has 6-12 months to live. This has really ticked me off because I feel they have stolen the hope from him and from our family. My husband now just thinks about that and he is not living his life. He is going on short term disability with work and I feel he is giving up. We have a 6 1/2 year old daughter who loves her daddy dearly. Where do I go from here? What do I do for him? I don't know what to say or how to help him. Some days I feel like I need to give him tough love because he can't just give up. Other days I get so tired of fighting. I want our lives to be normal again in some sense, I am just tired of the every day struggle with this disease. Any suggestions out there?

Comments

  • MR_SAD
    MR_SAD Member Posts: 91
    Hello
    Itsallgood2
    I wish I could tell you that everything will be fine, but I can't. You are on a very hard Journey now and We have all have had to endure a great deal. Every day you and your husband have together is precious. As a care Giver you are going to feel all the Pain that he is dealing with, Some days he will try you to your limits. Just stop take a deep breath and know his anger and frustration is not at you but this terrible thing called Cancer. It will be tough on both of you. Know there are people on this site that have been in your shoes and will be here for your Support. My Wife was given 6 months in aug 08, She passed away Dec. 27TH at 2:00 pm. We went through the Treatments that they will be giving your Husband. The Radiation was not too bad, will make him real tired. My wife had surgery on her Brain, If I had to do over I would never have let them do that. The Radiation treatments did the best. IT help her quality of Life a great deal and gave us what time she had left to be together. I Was her care giver 24/7 for the last 12 weeks of her life and was with her all the way to the end. Every day will be hard, Try not to dwell on the negative and look for the positive. Never give up hope. We had hope all the way to the end. All you need to tell him is that you love him and you will be there for him. He is going through the most difficult thing anyone could go thru. My prayers are with you. Try and keep him as active has he can be, go for a drive, take a walk, Its best if you dont think too much about the future, Just live one day at a time, one moment to the next. When I thougt too much about what was ahead I got very depressed. Try and take care of your own needs. you will need every ounce of strength that you have for this fight. I was married 25 years to the love of my life, My best friend the mother of our two boys. You need to be strong for all three of you. IF I can help in any way I will. If you just need to vent and you will this is the place. If it wasn't for the friends I have on this site I would not have been able to make it thru. They can answer your questions or just be there to listen. On tuesday nights at 7:00 pm Eastern time there is a chat Room (#2) for Care givers here on this site. You will have a lot of things come up in the comming months, There are a lot of people here that will help.
    MR_SAD
  • hunpot
    hunpot Member Posts: 90 Member
    be strong
    It is the most drastic thing a dctr can tell us how long we have to live. But NEVER give up hope, Doctors are wrong all the time and you will find here on this site by others to prove that fact. I think them as dctrs they have to tell us the worst. you tell your husband if he is still going throught radiation and chemo there is still hope and not to give up. Once all treatment stops then you know its time not to long from that point on. I wish you both well and courage and strength to get through this most difficult time. His feelings will change and he will need his strength as well as yours. Le thim take disability and enjoy his time with you and daughter and gain strength and radiation and chemo take a toll on them as a fighter. Who knows he may return to work sometimeits not the end yet.
    I lost my mom in August 08. I know some and most feelings you have. I say this alot on here, I dont know what I would do if i lost my husband. I as a mother of small children 5, 8, 14, 18 can only image your thoughts. When i was losing mom me being 36 yrs old she was 58 I couldnt understand why she was leaving me, but i was only 9 when i lost my grampa, I was 11 when i lost my dad, 32 when i lost my uncle and gramma, and 36 when i lost my mom my best friend.

    Dont try to think about the worst yet keep your faith, hope and dreams, make the most of your days know and continue to make memories take lots and lots and lots of pictures or videos now while you have the chance. Tell him you are here for him and will help him, love and support him, let him know its not the end and you want and need him. Take care of yourself because that is what he would want from you he wants to know and will be happier knowing that you are strong and will be okay. Your time now is the most important to make the best of of what you have. Me being young once know that time heels all. I hope your daughter and yourslef dont have to endure a loss but your daughter being young hopefully will be sad but in time will be okay we so young seem to sometime forget the worst and remember the good. Stay strong, positive and continue to fight some days are easy others are hard but in reality its the same for all. I beleive we all gain strength, courage , support and knowledge from all we have to endure as a survivor,fighter and caregiver of this horrible word called CANCER. Continue to love each other just the same as yesterday yet more tomorrow. Best wishes and may god watch over you !!
  • itsallgood2
    itsallgood2 Member Posts: 7
    hunpot said:

    be strong
    It is the most drastic thing a dctr can tell us how long we have to live. But NEVER give up hope, Doctors are wrong all the time and you will find here on this site by others to prove that fact. I think them as dctrs they have to tell us the worst. you tell your husband if he is still going throught radiation and chemo there is still hope and not to give up. Once all treatment stops then you know its time not to long from that point on. I wish you both well and courage and strength to get through this most difficult time. His feelings will change and he will need his strength as well as yours. Le thim take disability and enjoy his time with you and daughter and gain strength and radiation and chemo take a toll on them as a fighter. Who knows he may return to work sometimeits not the end yet.
    I lost my mom in August 08. I know some and most feelings you have. I say this alot on here, I dont know what I would do if i lost my husband. I as a mother of small children 5, 8, 14, 18 can only image your thoughts. When i was losing mom me being 36 yrs old she was 58 I couldnt understand why she was leaving me, but i was only 9 when i lost my grampa, I was 11 when i lost my dad, 32 when i lost my uncle and gramma, and 36 when i lost my mom my best friend.

    Dont try to think about the worst yet keep your faith, hope and dreams, make the most of your days know and continue to make memories take lots and lots and lots of pictures or videos now while you have the chance. Tell him you are here for him and will help him, love and support him, let him know its not the end and you want and need him. Take care of yourself because that is what he would want from you he wants to know and will be happier knowing that you are strong and will be okay. Your time now is the most important to make the best of of what you have. Me being young once know that time heels all. I hope your daughter and yourslef dont have to endure a loss but your daughter being young hopefully will be sad but in time will be okay we so young seem to sometime forget the worst and remember the good. Stay strong, positive and continue to fight some days are easy others are hard but in reality its the same for all. I beleive we all gain strength, courage , support and knowledge from all we have to endure as a survivor,fighter and caregiver of this horrible word called CANCER. Continue to love each other just the same as yesterday yet more tomorrow. Best wishes and may god watch over you !!

    Thank you
    Thank you Mr._Sad and hunpot. It was a delight to wake up this morning and check my e-mail and know that there are people out there that care and want to help. Like I said, every day is a struggle for me, but you both have given me knew hope today. Sometimes I get so down, I think that this is only happening to me, but in fact there are millions of people going through the same thing. One thing I didn't mention that I deal with daily is that my husband and I lost our 1 year old son 2 1/2 years ago. He died suddenly taking his afternoon nap and he died from and very rare undetected heart condition. That was the worst day of my life and it continues to rob me of my happiness in times like this. I have told my husband as hard as it will be, I know I will be o.k. because we have survived the greatest loss, our son's death, but I worry about my daughter losing a daddy and a brother within a few years of each other. I struggle with why this is happening to us again, I just don't understand it. I have huge faith and belief that God is there with me and he is suffering these same feelings, I just can't wrap my heart around Jack's diagnosis.
    My husband finished up radiation on the brain in December. Did you feel that either your mom or wife was very short and snappy after treatment? Or is this just the disease creating his moodiness?
    Thank you again.
  • terato
    terato Member Posts: 375
    Never lose hope!
    Itsallgood,

    When I was diagnosed with a particularly aggressive form of testicular cancer in 1980, I thought my chances were slim, especially when it had metastasized to the lymph nodes on the inside of my spinal column and had to be removed through the front. This was BEFORE I had to undergo a two-year protocol with cisplatin, bleomycin, and vinblastin! On April 18, 2009, I will celebrate my 27th cancer-free year!

    Since the conclusion of my treatment, I buried my only sibling and both our parents.

    BTW, two of my specialists were diagnosed and treated for cancer, my oncologist for male cancers (Hodgkins disease) and my reconstructive surgeon (pancreatic cancer) and both are still practicing!

    Love, Hope, Courage, and Fortitude!

    Rick
  • hunpot
    hunpot Member Posts: 90 Member

    Thank you
    Thank you Mr._Sad and hunpot. It was a delight to wake up this morning and check my e-mail and know that there are people out there that care and want to help. Like I said, every day is a struggle for me, but you both have given me knew hope today. Sometimes I get so down, I think that this is only happening to me, but in fact there are millions of people going through the same thing. One thing I didn't mention that I deal with daily is that my husband and I lost our 1 year old son 2 1/2 years ago. He died suddenly taking his afternoon nap and he died from and very rare undetected heart condition. That was the worst day of my life and it continues to rob me of my happiness in times like this. I have told my husband as hard as it will be, I know I will be o.k. because we have survived the greatest loss, our son's death, but I worry about my daughter losing a daddy and a brother within a few years of each other. I struggle with why this is happening to us again, I just don't understand it. I have huge faith and belief that God is there with me and he is suffering these same feelings, I just can't wrap my heart around Jack's diagnosis.
    My husband finished up radiation on the brain in December. Did you feel that either your mom or wife was very short and snappy after treatment? Or is this just the disease creating his moodiness?
    Thank you again.

    hope
    all your emotions and feelings are normal. Some days are good others are bad before, during and after treatments, surgeries and outcomes. God throws us for loops throughout life sometimes i wonder why he tests us as humans. But they say he doesnt give us more then we can handle. Why does this happen to anyone? Its a question everyone asks but never gets and answer. God has given me more then i could handle and im still surviving and going on with this thing called life somehow. :)
    The worst most horrible thing that could happen to anyone is the loss of a child--Oh my heart aches for what you have had to endure in such sort time, but you have a wonderful daughter and loving husband im sure great friends, family and support groups, church etc.. and somehow you have managed to go on and make the most of what you have left. Contine to be strong, brave and remember your not alone we are here for you.
    Your husbands reaction snappy, anger, sadness is all so normal. I remember mom being so sad when they told her less then 6 months she always wanted to know what she had left but then again she didnt. She would be sad but she tried to hold it in in front of us her children she would break down to her best friend and she grew close with the hospice nurse and would tell them her fears. She learned to except what was happening and she got to do things she hadnt done, me and my sister took her on a cruise she had never been before she had the time if her life ill never forget that. She also tried to take care of things for us for when and if she didnt make it. She wrote letters to her loved ones and left them behind. I know some on here will say they made videos.
    Just be there for your husband try to comfort him and just let him know that their is always hope, be there to listen hold, talk love and support, maybe if he reads some stories on here of the survivors he may change some outlook he has and now their is such thing as miracles and doctors can be wrong. His moodiness is all normal he is going through so much in his head as a male figure probably thinking "who will take care of you and his daughter" its a males egos to do that for his family, he may be sad that he may be taken away to early from his family, but remind him if its god choice for him to go he has a plan and probably the plan would be for him to be with your son again. Its the hardest thing we have to tell our loved ones but somehow we manage to say it is okay to go even though its the worst thing for us. Im sure in time he will be okay just remind yourself its all that goes with the disease and feelings are normal.
    IS he still in chemo now that radiation is done?
    Try and have a good day.
    tracy
  • dukeskid
    dukeskid Member Posts: 24
    terato said:

    Never lose hope!
    Itsallgood,

    When I was diagnosed with a particularly aggressive form of testicular cancer in 1980, I thought my chances were slim, especially when it had metastasized to the lymph nodes on the inside of my spinal column and had to be removed through the front. This was BEFORE I had to undergo a two-year protocol with cisplatin, bleomycin, and vinblastin! On April 18, 2009, I will celebrate my 27th cancer-free year!

    Since the conclusion of my treatment, I buried my only sibling and both our parents.

    BTW, two of my specialists were diagnosed and treated for cancer, my oncologist for male cancers (Hodgkins disease) and my reconstructive surgeon (pancreatic cancer) and both are still practicing!

    Love, Hope, Courage, and Fortitude!

    Rick

    To its all good...
    First let me say, I am sorry for the loss of your child. As hard as it was to watch my Dad deal with cancer for 14 years and then be one of his caretakers near the end, I actually said to myself, at least he is not a child. My uncle died of cancer at age 16. His family never recovered, and I hope you do - some day if not already.

    There is power in numbers. It seems like just yesterday that Mr. Sad was asking for help, and now he is giving it to you. The thing is - you cannot understand what cancer is until you are there. My assistant's father died of cancer (in 3 months) and I was irritated by her forgetfulness during the time. I had NO idea what she was going through. My dad had cancer for years - no big deal I thought. Then came the last 18 months. It was brutal. Thankfully, my assistant stuck with me. I thought I knew what she was going through, but I really didn't - not until my Dad was very near the end.

    I echo all those that say - Fight until you cannot fight no more.

    But as a caregiver, let me give you my two cents - and that is what it may be worth:

    I cannot give you advice on how to handle what you have on your plate right now. As others have said, spend every day - day by day. I was lucky in that I could go part-time for 4 months to help out, but if you cannot, you can't. The thing to avoid is guilt and regrets. Both are just not for caregivers - I had them both, until I realized I had neither. You won't have guilt and regret either, but it may take some time. Be easy on yourself. Trust me. You think you will have survivor's guilt and regrets - but please - in the moment, today - let it go. I wish I had. I would have enjoyed my time with Dad better. You do what you can - let the rest of it go. Really.

    The proof in the pudding? Mr. Sad lost his wife just days ago. He is now helping others. You will get through this and want to help other as it will help you heal.

    Best Wishes,

    Duke's kid
  • hollyberry
    hollyberry Member Posts: 173
    dukeskid said:

    To its all good...
    First let me say, I am sorry for the loss of your child. As hard as it was to watch my Dad deal with cancer for 14 years and then be one of his caretakers near the end, I actually said to myself, at least he is not a child. My uncle died of cancer at age 16. His family never recovered, and I hope you do - some day if not already.

    There is power in numbers. It seems like just yesterday that Mr. Sad was asking for help, and now he is giving it to you. The thing is - you cannot understand what cancer is until you are there. My assistant's father died of cancer (in 3 months) and I was irritated by her forgetfulness during the time. I had NO idea what she was going through. My dad had cancer for years - no big deal I thought. Then came the last 18 months. It was brutal. Thankfully, my assistant stuck with me. I thought I knew what she was going through, but I really didn't - not until my Dad was very near the end.

    I echo all those that say - Fight until you cannot fight no more.

    But as a caregiver, let me give you my two cents - and that is what it may be worth:

    I cannot give you advice on how to handle what you have on your plate right now. As others have said, spend every day - day by day. I was lucky in that I could go part-time for 4 months to help out, but if you cannot, you can't. The thing to avoid is guilt and regrets. Both are just not for caregivers - I had them both, until I realized I had neither. You won't have guilt and regret either, but it may take some time. Be easy on yourself. Trust me. You think you will have survivor's guilt and regrets - but please - in the moment, today - let it go. I wish I had. I would have enjoyed my time with Dad better. You do what you can - let the rest of it go. Really.

    The proof in the pudding? Mr. Sad lost his wife just days ago. He is now helping others. You will get through this and want to help other as it will help you heal.

    Best Wishes,

    Duke's kid

    You're in my prayers
    I am so sorry for the loss of your son; there is no love like that of a mother for her children and I am so sorry for your pain.
    I was diagnosed with mucosal melanoma in Dec. of '06 and have had 4 surgeries and 2 rounds of chemo. I am in the same unenviable position as your husband. There are so many feelings that both of you will go through; try not to let your husbands anxieties and frustrations affect you, if you can. He is worried about you and your daughter and not being able to support you or be there for you; I felt the same way about my husband and 3 children.It does get better; you'll both need time to work your way through the emotions and come to terms with your situation.
    I don't have much time left myself,so I try not to waste it on negative feelings. I want to enjoy my family before God calls me home. Be patient and talk to all of us when you need to. It will help you to unload all of your feelings.
    God bless you both and your little girl, too.
    With so much love,
    Hollyberry
  • itsallgood2
    itsallgood2 Member Posts: 7
    wow
    Thanks again for all the remarkable words of support. Today is a good day and I have read the messages each of you have left for me. Truly inspiring and words that I am going to try to live by. It is a challenge every day, but I don't want to live whatever remainder of time that my husband has left in such a negative attitude. I will have these good days and I will have those bad days, I know that. I will continue to post and read words of encouragement from each and everyone of you.
  • fl03
    fl03 Member Posts: 4
    HUSBAND WITH STAGE IV MELANOMA, GONE TO BRAIN ETC
    HI, I AM ALSO NEW TO THIS SITE, SO THANKFUL TO BE ABLE TO READ ABOUT SOMEONE ELSE'S STRUGGLE, AND HOPE THAT WE CAN ALL HELP EACH OTHER, UNLESS SOMEONE HAS WALKED THIS JOURNEY THEY CANNOT UNDERSTAND. MY HUSBAND'S CANCER RETURNED AFTER 8YRS AND SINCE A YEAR AGO WHEN HE FIRST DISCOVERED THE LUMP IN GROIN IT HAS BEEN AN ADVENTURE. WE ARE IN FL, ALL THE FAMILY IS IN MICHIGAN 4 GROWN CHILDREN, 13 GRANDCHILDREN, 3 GREAT ONES, SO IT IS SO HARD, THEY COME DOWN AT VARIOUS TIMES, BUT ALL WORKS, HAVE SO MUCH IN THERE OWN LIVES TO TAKE CARE OF. I HAVE A WONDERFUL SUPPORT GROUP WITH OUR CHURCH, AND OUR BROTHER IN LAW AND WIFE LIVE 2 STREETS OVER, BUT NO ONE CAN BE THERE ALL THE TIME. WE ENTERED THE HOSPICE PROGRAM IN AUG 08, BUT RECENTLY ABOUT 3 WEEKS AGO, HE BECAME VERY CONFUSED,OUT BURST ETC, PUT HIM ON HALTOL, SLEEPING ALL DAY AND ALL NIGHT, BECOMING RESTLESS, WHAT A JOURNEY, I AM PRAYING FOR EVERYONE ON HERE, AND THANK THE LORD HE DOES GIVE US GRACE, AND MERCY WHICH IS NEW EVERY MORNING FL03