new at this

omee
omee Member Posts: 8
edited March 2014 in Colorectal Cancer #1
Hello everyone. My husband (62 years)who has never been sick in his life and had a physical every year faithfully, and never had any signs of cancer was just diagnosed with stage 4 colon cancer that has spread to his liver. This all came about back in Sept and he was operated on in Oct. and had his decending colon removed. Now he is in his 6th chemo treatment and I had a really bad scare last time. He ended up in bed and not wanting to eat, had diahrea for 11 days. Hes getting oxaliplatin, avastin and 5-fu pump and some kind of vitamin can't remember the name. There have been times I can't handle this and other times I do just fine. I feel he doesn't want me to help him and then at times he won't let me out of sight. Is this all normal? The Dr. who operated on him told us (our kids and myself not him) that this is a 6mo to 18 months survival and then the oncologist told us that he has a 50-50 chance of living longer than 2 years. Is there anyone else out there who is a survivor longer than two years and what are some helpful tips for me to help him on his down days. He has made peace with God on this and doesn't feel sorry for himself and we all have PMA positive mental attitude. So you would think I wouldn't have these feelings but I do. Thanks for listening. By the way I did have a long talk with his oncologist today and she gave me her phone number to call her when he gets this way again because she doesn't want him going down like this. So at least I have that now. Before he kept all the info to himself and wouldn't share. So now he knows I will get after him if he doesn't do what the Dr. says. LOL.

Comments

  • JADot
    JADot Member Posts: 709 Member
    Omee:

    When I had my down days what got me through was the loving around-the-clock support from my husband. He held my hands and told me how much he loved me and how we would beat this thing one way or another. After a while I really started to believe in it. I usually had the toughest time when I am in bed along, being miserable by myself. So I'd say spend as much time with your husband as possible. Did you know that depression alone can weaken one's immune system, the very thing that your husband needs to heal, recover, live and thrive? So do any loving or silly thing to cheer him up. You have to make him believe that you and him can beat this thing and prove the doctors wrong.

    Take the treatments but don't believe in the 18-months nonsense from the doctors. They should be ashamed of themselves for saying things like this. Shouldn't they be lifting the will to heal in their patients instead? This just really makes me angry. OK, big deep healing breath of fresh air :)

    To answer your question - has anyone survived stage IV colon cancer - Yes, most definitely. There are many stage IV survivors on this site. I am sure they will chime in soon.

    I just got Patrick Quillin's book "Beating Cancer with Nutrition". In it, there are lots of stories of people who lived and thrived in spite of the poor prognosis handed to them by their doctors. Those cases are so inspirational. This leads to my next points - it's nutrition, nutrition, nutrition. The stronger your husband is, the better chance his body will have to fight the cancer. Not wanting to eat and having diahrea is a bad combination. Please please please get the book and use nutrition to bolster your husband's immune system so he has the ammo he needs to fight the disease and survive the treatment. I wish I can tell you more, but I am only in Chapter 2. May survivors on this site swear by the nutritional cure and many have succeeded. Please please give it a shot if you haven't already. It's a whole new world to explore and a whole lot of inspirational stories to share with your husband on his down day and up days!

    I am new to colon cancer - a whole three weeks now. I remind myself everyday what I learned from the veterans on this site - never ever lose faith, never ever give up the fight, miracles happen everyday and our amazing body can heal itself given the right nutrition.

    Sorry I am so long winded - I am just all fired up by Quillin's book.

    Best of luck to you!

    JADot
  • CAMaura
    CAMaura Member Posts: 719 Member
    Hi Omee - I cannot imagine how hard it is to watch a loved one going through chemo. Everything is new for the recipient...and then new again for the caregiver. You sound like a wondeful person and wife; I think it is just hard to understand how hard all of this is for your husband. A new disease, a flip-turn in his life, and then crap upon crap in terms of dealing with the hard-go of chemo. He is probably used to being in control of his life and his actions.....and now he is upside down and backwards.
    The life of a caregiver is really hard, so please give yourself a break. I am sure that your are doing your best, and please take a little time for you to refuel. A lunch out or shopping...or just a post to vent. Things will improve for you....just by reaching out.
    All the best to you and I hope you keep in touch - Maura
  • goldfinch
    goldfinch Member Posts: 735
    omee,
    take advantage of that onc's phone # and call her when he is experiencing those severe side effects. There are things she can order or suggest that may improve how he feels. Or she may decide that the dosage needs to be reduced. Anyway, call her.
    Offer your husband your support, as you have been and hang in there.
    There are lots of stage 4 survivors here. I hope to be one myself some day. Diagnosed stage 3 July 2003, then stage 4 dec 2004. I plan to be around for a while.
    Mary
  • terril
    terril Member Posts: 296
    Hi Omee!!
    My prayers are with you and your husband. There are so many people on this board who will give you support. Attitude is everything when fighting this disease!!!
  • scouty
    scouty Member Posts: 1,965 Member
    Omee,

    I was told 2 years ago in April that I only had 2 years to live also. I was stage IV with mets to my liver and 1 lung and surgery was not an option at the time. I was stunned of coursed and did what the doc told me (the same chemo that your husband is doing) for 8 months. At first, the chemo was pretty good at shrinking the tumors but then it leveled off. In the meantime, I starting reading and listening to 2bhealed (Emily) on this site about nutrition and supplements. I found a local naturopathic doctor and got the nerve to stop chemo and try the alternative route. That was Novemeber of 2004. I started juicing, completely changed my diet and lifestyle. I just had surgery to reverse my colostomy bag and am now in remission!!!!!!!! My oncologists do not know what to say other then keep up doing what you are doing.

    That all being said, IGNORE the damn numbers. Doctors love them for some stupid reason. God does not believe in stats and you shouldn't either. Help your husband take control of his situation. Read the book JADot is recommending (it was the one that got me started).........

    Remember that God gave us all a phenomenial body, treat it special and it will reward you. Treat it like **** and it will not.

    Lisa P.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Hi Omee,
    I was diagnosed almost 2 years ago at age 46 with stage IV colon cancer. In Sept 04, I had surgery to remeove 60% of my liver and part of my colon. I had a similar chemo to that of your husband's but I didn't have diahrea, I had more constipation issues. I always go for chemo myself (it's boring) even though my wife would go with me no problem. I like to have her there when I get test results. I guess there is nothing that isn't normal, not is there a certain way that we all must behave. It's unique to each person. You sound like you're doing all of the right things to me. As far as the Onc giving a time frame, that's irresponsible in my book. I would never ask that nor would they tell me anything if I did ask. They don't know. It's hard to keep a positive attitude all of the time but your mind can do wonders with the healing process. I also started juicing (not hard core) but I notice an improvement already after just 3 weeks. One other thing I found out is to stay off the internet and all of the statistics that are out there, it's old data and not terribly accurate in my opinion and only caused me more stress. Hope this helps somewhat.
    Positive thoughts and prayers to you and your husband
    -Phil
  • omee
    omee Member Posts: 8
    JADot said:

    Omee:

    When I had my down days what got me through was the loving around-the-clock support from my husband. He held my hands and told me how much he loved me and how we would beat this thing one way or another. After a while I really started to believe in it. I usually had the toughest time when I am in bed along, being miserable by myself. So I'd say spend as much time with your husband as possible. Did you know that depression alone can weaken one's immune system, the very thing that your husband needs to heal, recover, live and thrive? So do any loving or silly thing to cheer him up. You have to make him believe that you and him can beat this thing and prove the doctors wrong.

    Take the treatments but don't believe in the 18-months nonsense from the doctors. They should be ashamed of themselves for saying things like this. Shouldn't they be lifting the will to heal in their patients instead? This just really makes me angry. OK, big deep healing breath of fresh air :)

    To answer your question - has anyone survived stage IV colon cancer - Yes, most definitely. There are many stage IV survivors on this site. I am sure they will chime in soon.

    I just got Patrick Quillin's book "Beating Cancer with Nutrition". In it, there are lots of stories of people who lived and thrived in spite of the poor prognosis handed to them by their doctors. Those cases are so inspirational. This leads to my next points - it's nutrition, nutrition, nutrition. The stronger your husband is, the better chance his body will have to fight the cancer. Not wanting to eat and having diahrea is a bad combination. Please please please get the book and use nutrition to bolster your husband's immune system so he has the ammo he needs to fight the disease and survive the treatment. I wish I can tell you more, but I am only in Chapter 2. May survivors on this site swear by the nutritional cure and many have succeeded. Please please give it a shot if you haven't already. It's a whole new world to explore and a whole lot of inspirational stories to share with your husband on his down day and up days!

    I am new to colon cancer - a whole three weeks now. I remind myself everyday what I learned from the veterans on this site - never ever lose faith, never ever give up the fight, miracles happen everyday and our amazing body can heal itself given the right nutrition.

    Sorry I am so long winded - I am just all fired up by Quillin's book.

    Best of luck to you!

    JADot

    Thank you so much for the info. I'm going out today to workout and there is a book store right in the mall so I'll look for that book. My daughter tried to get him to take a chinese herb called astragalus root to help build his immune system but he asked the oncologist if he could take it and she checked with the pharmacist and he said NO not with the chemo but after hes done with the treatments he can take it. We looked up all the info on this herb and it states that it is good for cancer patients. He will do what ever the Dr. tells him so I have to end up telling the Dr.'s that he won't listen to me so they will get on his case for me. I have read alot on different sites about how important nutrition is, so I try to make all the healthy food for him, if and when he feels like eating. I'll let everyone know at the end of the month how his cat scan came out. I really feel good about it.
  • omee
    omee Member Posts: 8
    CAMaura said:

    Hi Omee - I cannot imagine how hard it is to watch a loved one going through chemo. Everything is new for the recipient...and then new again for the caregiver. You sound like a wondeful person and wife; I think it is just hard to understand how hard all of this is for your husband. A new disease, a flip-turn in his life, and then crap upon crap in terms of dealing with the hard-go of chemo. He is probably used to being in control of his life and his actions.....and now he is upside down and backwards.
    The life of a caregiver is really hard, so please give yourself a break. I am sure that your are doing your best, and please take a little time for you to refuel. A lunch out or shopping...or just a post to vent. Things will improve for you....just by reaching out.
    All the best to you and I hope you keep in touch - Maura

    Boy you picked up on the being in control of his life and every thing. I married him 43 years ago when we were only 19yrs and the one thing most of my friends never understood is how I could live with someone who has to be in control. Well, I did and will continue but the tables have turned and I"M IN CONTROL NOW and he will ahve to get used to that. LOL. When he gets on his soap box about what he thinks being in control is I tease him and say just remember who is taking care of you. Boy he changes really fast. All in all I sometimes feel angry about all this because there was one thing I didn't tell everyone. He was forced into an early retirement at age 59 (this turned out to be agood thing) and we had a 5 bedroom beautiful new home. Then when we turned 62 we sold the house bought a 40' winnwbago motorhome and were ready to travel all around the USA hitting all the national parks and visiting lighthouses. In Sept we went to Oregon and saw all the light houses there but at the end of the month when I was going to go on a cattle drive he got so sick I had to rush him to ER. Thats when everything started the first of Oct. and that has ended our dream of traveling but hopfully just a side tract. I love my motorhome and don't miss the big house to clean but it is close quarters when we are both indoors with two dogs, cat and a chinchilla. So I have decided its not selfish of me to want to get out once in a while. I work out three times a week and try to get a movie in once in awhile. We always did this together but he just have the energy to do this with me. I felt guilty at first but everyone I talk to says take care of YOU. Thanks for the support.
  • omee
    omee Member Posts: 8
    scouty said:

    Omee,

    I was told 2 years ago in April that I only had 2 years to live also. I was stage IV with mets to my liver and 1 lung and surgery was not an option at the time. I was stunned of coursed and did what the doc told me (the same chemo that your husband is doing) for 8 months. At first, the chemo was pretty good at shrinking the tumors but then it leveled off. In the meantime, I starting reading and listening to 2bhealed (Emily) on this site about nutrition and supplements. I found a local naturopathic doctor and got the nerve to stop chemo and try the alternative route. That was Novemeber of 2004. I started juicing, completely changed my diet and lifestyle. I just had surgery to reverse my colostomy bag and am now in remission!!!!!!!! My oncologists do not know what to say other then keep up doing what you are doing.

    That all being said, IGNORE the damn numbers. Doctors love them for some stupid reason. God does not believe in stats and you shouldn't either. Help your husband take control of his situation. Read the book JADot is recommending (it was the one that got me started).........

    Remember that God gave us all a phenomenial body, treat it special and it will reward you. Treat it like **** and it will not.

    Lisa P.

    Well maybe after he gets to the point of hating the chemo he may listen to others about doing alternative methods, but at this point he won't budge and is in love with his oncolgist and will do what ever she tells him. Actually she is very good and sympathetic and I don't think she would have told him the numbers thing if he hadn't asked her. She loves his PMA and feels he will make it if he listens to his body and to his wife (lol) I'm glad I have this site to vent. My youngest daughter gave it to me.
  • omee
    omee Member Posts: 8
    PhillieG said:

    Hi Omee,
    I was diagnosed almost 2 years ago at age 46 with stage IV colon cancer. In Sept 04, I had surgery to remeove 60% of my liver and part of my colon. I had a similar chemo to that of your husband's but I didn't have diahrea, I had more constipation issues. I always go for chemo myself (it's boring) even though my wife would go with me no problem. I like to have her there when I get test results. I guess there is nothing that isn't normal, not is there a certain way that we all must behave. It's unique to each person. You sound like you're doing all of the right things to me. As far as the Onc giving a time frame, that's irresponsible in my book. I would never ask that nor would they tell me anything if I did ask. They don't know. It's hard to keep a positive attitude all of the time but your mind can do wonders with the healing process. I also started juicing (not hard core) but I notice an improvement already after just 3 weeks. One other thing I found out is to stay off the internet and all of the statistics that are out there, it's old data and not terribly accurate in my opinion and only caused me more stress. Hope this helps somewhat.
    Positive thoughts and prayers to you and your husband
    -Phil

    Thank you. I guess the Dr. didn't want to lie to us since we asked, but we have learned Only GOD has control of our life and we will accept what ever he wants us to do. Right now we feel he is using my husband as a spoksman to help others get their colonoscopy at a timly fashion. The sigmoid doesn't find anything except maybe hemroids. My husband has told so many of his older friends and they have all gone and got theirs done. Even our children have gotten theirs done. I'm still waiting to get the referal for mine. I have to work it in between his chemo and his down days so he can drive me there.
  • JADot
    JADot Member Posts: 709 Member
    omee said:

    Thank you so much for the info. I'm going out today to workout and there is a book store right in the mall so I'll look for that book. My daughter tried to get him to take a chinese herb called astragalus root to help build his immune system but he asked the oncologist if he could take it and she checked with the pharmacist and he said NO not with the chemo but after hes done with the treatments he can take it. We looked up all the info on this herb and it states that it is good for cancer patients. He will do what ever the Dr. tells him so I have to end up telling the Dr.'s that he won't listen to me so they will get on his case for me. I have read alot on different sites about how important nutrition is, so I try to make all the healthy food for him, if and when he feels like eating. I'll let everyone know at the end of the month how his cat scan came out. I really feel good about it.

    Hi Omee:

    I forgot the greatest stage IV comeback story - Lance Armstrong! He recovered from stage IV testicular cancer and become the greatest athlete in the world by winning 7 consecutive Tour de France. Lance is the living proof that our will to heal and live is stronger than cancer! I read Lance's book twice, most recently after I've been diagnosed with cancer. You can get a whole bunch more inspirational recover stories from the Lance Armstrong Foundation at www.livestrong.org.

    Before you take any herbs, check them out on this web site from the Sloan-Kettering Cancer Center, one of the mots respected organization.

    http://www.mskcc.org/mskcc/html/11571.cfm?RecordID=421&tab=HC.

    My Mom is a geneticist in China and she has a lot of students in cancer research all over the world. Consistently they tell me "build up your immune system, it's your best weapon against cancer".

    The immuno boosters they recommended are:
    1. Mushroom extracts, Maitake/cordeceps/ganoderma
    2. Brocolli sprouts

    You can read all about the mushrooms on the Sloan Kettering site. You can read about the broccoli at http://www.sproutpeople.com/seed/brassicas.html.

    The Patrick Quillin books has an audio CD in the back for cancer patients who are too weak to read. Please ask your husband to listen to it. You two are a team, he has to become a believer before he will get well.

    Good luck to you and your husband! Live strong!

    Cheers,
    JADot
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    omee said:

    Thank you. I guess the Dr. didn't want to lie to us since we asked, but we have learned Only GOD has control of our life and we will accept what ever he wants us to do. Right now we feel he is using my husband as a spoksman to help others get their colonoscopy at a timly fashion. The sigmoid doesn't find anything except maybe hemroids. My husband has told so many of his older friends and they have all gone and got theirs done. Even our children have gotten theirs done. I'm still waiting to get the referal for mine. I have to work it in between his chemo and his down days so he can drive me there.

    Omee,
    He could have said he didn't know and that wouldn't be lying either, but enough of that, it's in God's hands and your Husband's will to keep going. After I was diagnosed, many of my friends got their **** in for a colonoscopy. Hopefully it helped to spare some of them from this.
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    PhillieG said:

    Omee,
    He could have said he didn't know and that wouldn't be lying either, but enough of that, it's in God's hands and your Husband's will to keep going. After I was diagnosed, many of my friends got their **** in for a colonoscopy. Hopefully it helped to spare some of them from this.

    Hi Omee and welcome from OZ. I am what you can call a stage 2, very fortunate, gratefull and humbled survivor now NED(no evidence disease).As a stage 2 my prognosis was good(I only found that out after a complicated surgery) but when first dx'd I can tell you that my world fell to pieces and my emotions changed radically...who wouldn't being told one has cancer...one's world falls apart!All of your hubbies emotions are pretty normal and it is a matter of keeping an open mind to these changes and trying to make concessions...I am not saying wrap him up in cotton wool...just make concessions and tell yourself that NOTHING associated with this disease, it's treatments etc. could have been prepared for.
    I am not ashamed to admit that my attitude, my emotions all made for some very exagerated mood swings......hell...I was told I had cancer! I would imagine it almost impossible for anyone to remain calm. Of course the surgery, associated complications then 6 months of chemo exacerbated my whole mindset too. Nights were the worst, as was the times my dear Jen went off to work. You Omee are in a unique position, albiet a difficult one, to witness the devastating way this can effect a patients emotional state, all while trying to be what I call an "angel"...a carer------probably the toughest journey!
    You are a loving person, I can tell because you have the courage to come here to get the best info you can for your hubby. Realise that no matter what happens all the emotions, the fear, the anger, the pent-up held back emotions he holds are a part of the frustrations and uncertanties.....NEVER an attack on you by him because he, as I did, does not know how to deal with all this crap.
    Jen and I loved, cried and argued together(mostly my fault the argueing!). Dealing with this is a mutual fight....the secret for you is learning "when and how to react to his emotions"....that is the very difficult part.
    As I said...I am humbly fortunate to be in remission....but the road was so very hard emotionally.
    Our very best from "down under", huggs, Ross and Jen
  • debcanmcg
    debcanmcg Member Posts: 32
    Hello omee: I too am a caregiver for a stg4 Colonrectal spouce. MY husband was diag in 5/04 with mets to liver, lungs and bones. He's still here and still doing chemo. Every three weeks he goes into the hospital for 48 horrible hours and I'm right there by his side. This is now a routine that will be a part of our lives just like going to work. He has an ostomy, which I take care of, he no longer is able to work , but I can and do and it is hard on us both but I hope in the long run it will be worth it just to have him here for a long as possible. Take a deep breath and remind yourself why your there. When my husband gets mad I just walk out of the room and remind myself how he must feel. Chemo is HELL and he is living it. I'm there to wipe his sweat and love him as I have for the past 30+ years. Sorry if this keep going on but this is Our Life now.