stage4

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tina dasilva
tina dasilva Member Posts: 641
edited March 2014 in Caregivers #1
im a caregiver for my husdband who has stage4 liver colon cancer i dont know how to do all of this and is there any caregiver out there that knows of anyone who has won with this satge of cancer .

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  • AnnaLeigh
    AnnaLeigh Member Posts: 187 Member
    #2
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    Minute by minute - day by day
    Tina,

    So sorry to hear about your husband's diagnosis and we know what a shock all of this can be. Try going to the colorectal (includes colon cancer) discussion boards. You will find many Stage IV survivors there who share their stories and willingly share their advice about treatments.

    Taking all of this one day at a time will help you cope especially at first when there is so much to do and so much to learn about with medications and treatments. There are even days when I break every thing down in hours. If I can get through this hour - then I can get through the next hour - and so on.

    There are many caring and wise people here to help you along the way. We treat each other like a family and want to help in any way we can. Post your questions or concerns and find the support you need. There is always someone here willing to listen.
  • zinniemay
    zinniemay Member Posts: 522
    #3
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    Stage 4
    My husbans has stage 4 larynx cancer. Everyday they find something new or drugs to help. So anything is possible. Take one day at a time, hard to do but it keeps you sane. Each day you will learn more . Check out the Colon cancer board . Don't wrroy about venting or anything just ask questions. Each day you will be surpised at all these people on here who are walking the same road that can guild you and help you.
    There are so many people on here that will help answer your questions and help calm you when you are afraid. Just great place wish we did not have to be here! But glad we have a place to go.
    Jennie
  • tina dasilva
    tina dasilva Member Posts: 641
    #4
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    zinniemay said:

    Stage 4
    My husbans has stage 4 larynx cancer. Everyday they find something new or drugs to help. So anything is possible. Take one day at a time, hard to do but it keeps you sane. Each day you will learn more . Check out the Colon cancer board . Don't wrroy about venting or anything just ask questions. Each day you will be surpised at all these people on here who are walking the same road that can guild you and help you.
    There are so many people on here that will help answer your questions and help calm you when you are afraid. Just great place wish we did not have to be here! But glad we have a place to go.
    Jennie

    thank you guys so much im
    thank you guys so much im just all over the place .and idont know what to think at times .he just got his 4th chemo and last night he was so mean and very rude as if i gave the cancer to him .and i always take it is that the right thing to do
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #5
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    tina dasilva said:

    thank you guys so much im
    thank you guys so much im just all over the place .and idont know what to think at times .he just got his 4th chemo and last night he was so mean and very rude as if i gave the cancer to him .and i always take it is that the right thing to do

    Living with Cancer
    There are many people on the colon cancer board who are living with cancer. More treatments are coming out and even stage 4 can be beat. In the meantime take each day or even each minute one at a time. None of us knows what the future will bring. I know that none of this is easy. I am sure that you are thinking ahead and scared of what that future might be. Your greatest fear is a future without your husband. Don't let that fear rule your life. Live in the now. When he is having a good day celebrate that day. Do the best you can on the bad days. That is all you can do. Do what you think is right. If taking the rude remarks works for you, fine. If you are just storing up resentment, tell him it's ok to be mad at cancer, but that you don't deserve his anger. What you do and say really depends on how your marriage works. Only you can answer that question.

    I am living my greatest fear. I lost my husband in October of last year. It is hard, but we do survive. My husband fought stage 4 colon cancer for six years. I don't tell you that to scare you, but to let you know that I do understand a little of what you are going through. Doug lived longer than anyone expected. He chose to fight and buy as much time as possible. During those six years we made many wonderful memories. He also had many bad days. Granted, he left before I would have liked, but there is never enough time. We grew closer than ever during those last six years. We laughed together and cried together. We tried to live each day as if it was the last. My husband had a great sense of humor and used to tell people, "It's a good day. I woke up." My thoughts are with you. This is a difficult journey, but we live in a time when modern medicine is accomplishing great things. I wish you and your husband many happy years. Fay
  • tina dasilva
    tina dasilva Member Posts: 641
    #6
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    grandmafay said:

    Living with Cancer
    There are many people on the colon cancer board who are living with cancer. More treatments are coming out and even stage 4 can be beat. In the meantime take each day or even each minute one at a time. None of us knows what the future will bring. I know that none of this is easy. I am sure that you are thinking ahead and scared of what that future might be. Your greatest fear is a future without your husband. Don't let that fear rule your life. Live in the now. When he is having a good day celebrate that day. Do the best you can on the bad days. That is all you can do. Do what you think is right. If taking the rude remarks works for you, fine. If you are just storing up resentment, tell him it's ok to be mad at cancer, but that you don't deserve his anger. What you do and say really depends on how your marriage works. Only you can answer that question.

    I am living my greatest fear. I lost my husband in October of last year. It is hard, but we do survive. My husband fought stage 4 colon cancer for six years. I don't tell you that to scare you, but to let you know that I do understand a little of what you are going through. Doug lived longer than anyone expected. He chose to fight and buy as much time as possible. During those six years we made many wonderful memories. He also had many bad days. Granted, he left before I would have liked, but there is never enough time. We grew closer than ever during those last six years. We laughed together and cried together. We tried to live each day as if it was the last. My husband had a great sense of humor and used to tell people, "It's a good day. I woke up." My thoughts are with you. This is a difficult journey, but we live in a time when modern medicine is accomplishing great things. I wish you and your husband many happy years. Fay

    thank you so much Fay its so
    thank you so much Fay its so hard for me i feel so alone .and i dont say anything to him when is is like that because of the cancer his family is telling me not to say anything so i dont stess him out but im trying so hard to be strong
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #7
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    tina dasilva said:

    thank you so much Fay its so
    thank you so much Fay its so hard for me i feel so alone .and i dont say anything to him when is is like that because of the cancer his family is telling me not to say anything so i dont stess him out but im trying so hard to be strong

    Strong
    I got so tired of people telling me to be strong and stay positive. After my husband's first recurrence we decided to accept that we were just buying time. It made it easier for us. Some people thought that wasn't being positive. For us it was positive and my husband decided that he was going to buy as much time as possible. I was very lucky that my husband and I could talk openly. I have always been the family worrier so he knew I was worried and scared. We talked about it. I also had the support of our two sons which was wonderful. You don't have to deal with this on your own. Find out about any cancer support group in your area. Our group was really helpful. Check with the American Cancer Society or your oncologist. Come here whenever you need support or want to vent. There are some great people here who understand what you are going through. Fay
  • tina dasilva
    tina dasilva Member Posts: 641
    #8
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    grandmafay said:

    Strong
    I got so tired of people telling me to be strong and stay positive. After my husband's first recurrence we decided to accept that we were just buying time. It made it easier for us. Some people thought that wasn't being positive. For us it was positive and my husband decided that he was going to buy as much time as possible. I was very lucky that my husband and I could talk openly. I have always been the family worrier so he knew I was worried and scared. We talked about it. I also had the support of our two sons which was wonderful. You don't have to deal with this on your own. Find out about any cancer support group in your area. Our group was really helpful. Check with the American Cancer Society or your oncologist. Come here whenever you need support or want to vent. There are some great people here who understand what you are going through. Fay

    thank you hun for you kind
    thank you hun for you kind words it makes me feel better and stronger and im so very sorry to hear about your husband my heart goes out to you
  • KinzieK
    KinzieK Member Posts: 7
    #9
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    tina dasilva said:

    thank you hun for you kind
    thank you hun for you kind words it makes me feel better and stronger and im so very sorry to hear about your husband my heart goes out to you

    How to Cope
    It's overwhelming and hard when everyone else tells you what you should do for your loved one and how you should be handling things. Their comments will become maddening. You need to check your own blood pressure regularly. Your local pharmacy should have blood pressure cuffs at a reasonable price. If you need something for anxiety, stress, sleep, don't be afraid to talk to your Dr. Ask about vitamin supplements because you're bound to miss meals, not intentionally, but it will happen. Support groups. Online if you can't be away. Massages.
    If you can, try a big binder or accordian style folder to keep his records. I did that with my dad (he was diagnosed w/stage IV pancreatic cancer 06/25) and for me having it broken down as follows help: Personal medical history (listing current medications and doses cuz Dr's will always ask for that), copies of Operative reports, CT's/MRI reports, prescription med instructions that come with the meds from the pharmacy, a printed calander like from Outlook where you can write down times he took meds and dates of appointments (just having it on a calander on a wall is good, but I find I need it WITH me at appointments to avoid overlapping appointments), statements from insurance.
    I know it sounds like a lot, but I've found that this helps appointments go smoother and if you have someone who can help you manage the folder that would be great.
    I got the crash course in folder management when I had breast cancer back in '05.
    Cancer blows, period.
    Take care and know that we are all here for you.
  • tina dasilva
    tina dasilva Member Posts: 641
    #10
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    KinzieK said:

    How to Cope
    It's overwhelming and hard when everyone else tells you what you should do for your loved one and how you should be handling things. Their comments will become maddening. You need to check your own blood pressure regularly. Your local pharmacy should have blood pressure cuffs at a reasonable price. If you need something for anxiety, stress, sleep, don't be afraid to talk to your Dr. Ask about vitamin supplements because you're bound to miss meals, not intentionally, but it will happen. Support groups. Online if you can't be away. Massages.
    If you can, try a big binder or accordian style folder to keep his records. I did that with my dad (he was diagnosed w/stage IV pancreatic cancer 06/25) and for me having it broken down as follows help: Personal medical history (listing current medications and doses cuz Dr's will always ask for that), copies of Operative reports, CT's/MRI reports, prescription med instructions that come with the meds from the pharmacy, a printed calander like from Outlook where you can write down times he took meds and dates of appointments (just having it on a calander on a wall is good, but I find I need it WITH me at appointments to avoid overlapping appointments), statements from insurance.
    I know it sounds like a lot, but I've found that this helps appointments go smoother and if you have someone who can help you manage the folder that would be great.
    I got the crash course in folder management when I had breast cancer back in '05.
    Cancer blows, period.
    Take care and know that we are all here for you.

    im so sorry to hear about
    im so sorry to hear about your self and about your dad i will give it a try i hope the best for you and your family
  • geotina
    geotina Member Posts: 2,111 Member
    #11
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    Hi Tina
    Sorry for the late respose. Can Stage IV colon cancer be cured, in my opinion, not really. That being said can you have an excellent quality of life and live a long time with it, absolutely. My George is proof of that. At diagnosis, 18 months ago, he was diagnosed Stage IV with mets to the liver and lungs. His metastasis was a lot and the mets to the liver and lungs were large. I considered him advanced Stage IV. Where is he today, he is at work. The chemo drugs worked wonders and they can do the same for your hubby also. Just take one step at a time. Take the good news as it comes and worry about any bad news when it does come.

    As far as him being a little mean and angry, George was also, and I would ask him if that was him or the cancer talking. If he is on Folfox, then he is also getting a steroid Decadron. The steroid is the problem and there is not much you can do. The bad mood should pass a day or two after infusion. That being said, he is entitled, in my opinion, to get his bad mood days. He has cancer, his cancer has spread and he is scared. Maybe not so much scared of the cancer but what it brings, fear of dying, fear of leaving you and family alone, fear of finances, fear of pain, well you get what I'm saying I hope.

    When I said George has an excellent quality of life I truly mean it. In the past several months we have taken a few trips. Now some of it is work related but still, we went to San Antonio, Texas, Scottsdale, Arizona and Las Vegas a few weeks ago and a few week long trips to the Mid-Michigan area. We are in Michigan so going out west is a big deal. If he goes on business I tag along and then we spend a few days sightseeing and relaxing. Stage IV is not a death sentence. Is it bad news, of course, but now can be treated quite successfully as a chronic disease so try to look at it that way.


    Take care - Tina (geotina from the Colorectal Board)
  • cancersupport1
    cancersupport1 Member Posts: 11
    #12
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    Stage 4
    Hi Tina,

    My husband has Stage IV esophogeal cancer. My husband gets angry also.. especially after his Chemo treatment. The treatment makes him sick and depressed. I get angry too .. why us.
    It's hard for him to understand that he may have the disease, but he's not the only with cancer.

    I was advised to go to a support group which I did. The group was for cancer patients and their caregivers and family members. I was one of the only 2 caregivers that attended. The rest were cancer patients. Believe it or not, this small group really helped for my first time. I hope the next time there will be more caregivers.

    It 's a great support to talk to others who are in the "same boat" as you. Take care of yourself so you can take care of your husband. Take time for YOU.

    You and your husband are on my thoughts and prayers.
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #13
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    tina dasilva said:

    im so sorry to hear about
    im so sorry to hear about your self and about your dad i will give it a try i hope the best for you and your family

    Welcome
    Hello Tina and your husband and welcome to our caregivers family! I am also a "Tina", you will find there are quite a few of us here. I am Tina in Va. I was a caregiver for my dad. He passed away at 71 in March from esophageal cancer with mets to the liver. This is one long, hard, bumpy, rollercoaster ride. Be prepared for many ups and downs. Your husband is young, that is to his advantage. I agree with geotina, This cancer may not be curable, but it is treatable and your husband can live a good life with it. You have to consider his quality of life. Quality outweighs quanity. He will have many ups and downs. He will have many bad days, and many good days. He has to be willing to fight. He has to have a positive mind set. He has to have a strong faith. This is not easy in any way, shape, or form. And you as his main caregiver need to have the same qualities. Express all of your thoughts and feelings. Do not play the quiet, silent treatment, I can ignore you too game. It does not do you any good. I had my parents start a journal together. It was hard for both of them to communicate their true feelings to each other. It was easier for them to write them all down. My parents grew closer to each other emotionally my dad's last year, then they they had in 50 years of marriage! Journal all of your thoughts and feelings, write down all the questions for the drs, write down the answers, write down all of his tests, results, and treatments. And most of all love each other, and pray pray pray. We are here for you, all you have to do is ask. Most of us here have the "been there", "done that" experience. As far as his anger goes...that is normal. He is angry at the cancer, angry at his pain, he is scared to death and does not know how to tell you. A side effect of the steroid can cause the mood swings as well. He is yelling at you because you are the only one there. This exact same thing happened to my parents. Communication is key. Love together, laugh together, cry together. We will be thinking of you both and praying. Please keep in touch.
    Tina in Va
  • jenene
    jenene Member Posts: 40
    #14
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    Also stage 4 caregiver
    I just found out this week that my husband, age 37 has stage IV stomach cancer with mets to the liver. They tell me he is inoperable. But I have hope. We have a 3 and 1/2 year old daughter. This has been a rollercoaster ride for me this last week. You go from a perfect family life and new career to an absolute nightmare. At first I was devasted, but now I somehow have hope. They tell me he is incurable but somehow I do not believe. Maybe I am being naive, but I really feel deep down inside that he will make it through this. He just has to. I know that we are in for a long haal. They are putting a port in next week and starting the cocktail of 3 drugs on him. My only hope is that chemo works well for him. I cannot lose him, I will not let it happen. This is such a surreal feeling, especially for him. Healthy one minute and then the next having some doctors telling you you are dying and there is nothing to do to help you. Good luck to everyone! I will keep you posted.

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