I'm starting to feel angry!

sharynann
sharynann Member Posts: 28
edited March 2014 in Colorectal Cancer #1
Dad (my FIL) was told a week ago that his cancer has spread to his liver and stomach. The doctor didn't want to dump everything on him at once. Meaning he was told it spread but he wasn't told that is was "incurable" and that he may only have a couple of months to a year to live. Well, it's starting to make me mad. Today my husband talked with the chemo therapist about which type of treatment they were going to try on him. They decided 5-fu and Oxaliplatin. What bugs me is the chemo therapist said to my husband "this won't cure him, it will only give him a little more time." These kinds of statements make me mad! Why do they keep telling us it is hopeless. I mean bascially without saying the exact word "hopeless" that is what they are telling us. I'd like to hear what others think about how the doctors and therapists look at the glass have empty instead of half full. And we are supposed to "stay positive"? How can we if they keep telling us it's "incurable"? Am I wrong to be so angry?

Comments

  • pattieb
    pattieb Member Posts: 168
    I understand how you feel,my dr is pretty good about everything he has been up front with me at all times and also tells me that is the way he does things. I know its hard to try and be postive but you have to try you can never tell things might change, you have to decide what is better the quality or quanity of life come into the chat room and maybe they might be able to help you in regards to your anger they are a great bunch of people with all kinds of cancers they are surviors and caregivers with all stages of cancer. good luck and my prayers are with you and your family.
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
    Hi Sharynann,
    You have every right to be as ticked off as you want. First of all, none of you asked for this to happen. Secondly, tact is something the apparently do not teach in medical school. Granted, you want the "truth," but there are different ways to present it. Having been a patient fortunate enough to have very good doctors as far as bedside manner, I really feel the need to do something to make other physicians learn that presentation is everything.

    I know everyone keeps telling you to stay positive, take each day as it comes, and all those great cheerleading cliches, but it's true. If you start to slowly throw in the towel, it will be easier to let this whole thing slip through your fingers.

    There are no guarantees for anybody. So don't hold back on your emotions, and don't hold back on the hope.

    Hope I helped,
    Stacy
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    Sharynann,

    If the chemo won't cure him why not research other ways that may. It is worth a try. Look in to the Gerson Institute, Dr. Kelley, Dr. Day, (www.drday.com), www.cancerdecisions.com, www.hacres.com, Dr. Gonzales.....there are SO may others out there who have had success when all others told folks they were "terminal". I will send you a book that a woman I know wrote about her son. If you want to email me you address I will send you her books....one being the testimony and one being the How-To.

    I lost my sister to intestinal cancer 11 years ago. I know the pain of watching the hope be yanked out from under the patient. When her cancer had spread all the oncologists could give her was chemo. They knew jack-diddley about nutrition and put her on ensure which is sugar. Hello? Cancer feeds on sugar.
    When I walked in to the chemo clinic the patients were walking around eating DONUTS! When I saw that I knew I couldn't trust the oncologist to my cancer. Why would they feed folks fighting cancer with the very food it feeds on??? So I took that as my clue....they were clueless about CURING cancer but they knew how to TREAT cancer. There is a huge difference. Was I mad? You bet! I felt betrayed by the very establishment that was supposed to know how to cure what I had.

    Your FIL is fortunate to have you as his daughter. I will keep you all in my prayers.

    peace, emily
  • spongebob
    spongebob Member Posts: 2,565 Member
    Ahoy, Sharynann -

    First let me say what a wonderful daughter-in-law you are for caring so much about our father-in-law and wanting to help him in any way you can.

    Secondly let me just echo the sentiments of my friends here. If you chance to look back on some of the previous discussion threads here you will see that "odds-making" and "terminal diagnosis" are a bit of a pet peeve with us. We simply don't believe in them. We're not saying your physician shouldn't be honest with you, we are saying that (a) they cannot fathom the "odds" and (b) they cannot factor in the "attitude effect".

    My mother, after having survived uterine, bladder and colon cancer (guess you could say my family is a bit predisposed to cancer, eh?) was informed that a bone scan had revealed a significant lesion on one of her bones (as your cancer pals will tell you this is never a good thing). Over the subsequent 6 weeks they watched it and planned for a biopsy. The day before the biopsy they did a scan to see excatly where to go in to take the sample - it was still there, but smaller. The day of the procedure they did another scan to see where to put the needle and the lesion was gone. Completely. Kaput. They did another scan to be sure it was gone and it was.

    Miracles can happen - there are many testimonials out there. I don't really want to wax too religious on you here, but I want to tell you what I believe: God will not throw anything at us that we cannot handle - in one way or another. I believe that cancer survivors, by and large, don't wallow in the "why me?" complex because they get it - that they are chosen because they're tough. That they will be sick, because it's part of a bigger plan, but there's a reason for them to be sick and they're the one who got sick because they are strong enough in body and/or spirit to handle the trial.

    It's OK to be angry - now channel that anger into a positive flow of energy and go out and do good for other people and your father-in-law. That may be part of that Plan I spoke of...

    Keeping you and your family in my thoughts and prayers.

    - SpongeBob
  • Hi! I know exactly how you feel, even though my husband is fortunate enough to have both an oncologist and surgeon who have given him nothing but good prognosis and support. But both these wonderful men are quick to point out that they are only human, can do so much, and the rest is in God's hands. As put so well by others already, many doctors just deal in statistics and forget that each person is an individual and at best, who's to say your FIL can't fall into the small group of statistics that do make it. That's what we all aim for and while none of us are naive enough to believe it will happen every time, it CAN and DOES happen. You keep holding on to that thought, convey that thought to your FIL and husband, as hard as it can be sometimes. The more your FIL feels those kind of vibes, the more he will go along with them. Pain, anger, and frustration are all part of this disease and it's okay to experience them. Once out, there are no more barriers to block the fight that is about to begin or to interfer with or drain the positive attitude that is so desperately needed. There are no guarantees for any of us and each day, in its own right, is a struggle but with many rewards along the way. Let your anger out....God knows I did and still experience moments of it every single day, and then get on with helping your FIL fight this disease. When the doctors don't provide encouragement, just keep thinking of all those TRUE stories where individuals have "stumped" the medical community. All things are possible. God Bless.

    Monika
  • sharynann
    sharynann Member Posts: 28
    pattieb said:

    I understand how you feel,my dr is pretty good about everything he has been up front with me at all times and also tells me that is the way he does things. I know its hard to try and be postive but you have to try you can never tell things might change, you have to decide what is better the quality or quanity of life come into the chat room and maybe they might be able to help you in regards to your anger they are a great bunch of people with all kinds of cancers they are surviors and caregivers with all stages of cancer. good luck and my prayers are with you and your family.

    Well, I'm not really an angry person. It just aggravates me that they imply that it is a hopeless case. "Any thing done now will only prolong his life". As if they have some inside information from God. I truly believe that God has the last word and if he decides to take Dad home sooner than we'd like, then so be it but in the mean time I refuse to listen to this "it's incurable" business. Thanks for listening to me vent.
  • sharynann
    sharynann Member Posts: 28

    Hi Sharynann,
    You have every right to be as ticked off as you want. First of all, none of you asked for this to happen. Secondly, tact is something the apparently do not teach in medical school. Granted, you want the "truth," but there are different ways to present it. Having been a patient fortunate enough to have very good doctors as far as bedside manner, I really feel the need to do something to make other physicians learn that presentation is everything.

    I know everyone keeps telling you to stay positive, take each day as it comes, and all those great cheerleading cliches, but it's true. If you start to slowly throw in the towel, it will be easier to let this whole thing slip through your fingers.

    There are no guarantees for anybody. So don't hold back on your emotions, and don't hold back on the hope.

    Hope I helped,
    Stacy

    Don't get me wrong about his doctor. He seems very caring and compassionate about "Dad" but I guess he is looking at it statistically. I think I would feel better if they just said "It might be incurable." but to say it is "incurable" bugs me because it's as if they have him in his grave already. I guess you could say that me being "ticked off" is a good thing. It's made me get on this PC just about everyday and research everything I possibly can. You and the others here have helped more than you know, Stacy. Thanks! Sharyn
  • sharynann
    sharynann Member Posts: 28
    2bhealed said:

    Sharynann,

    If the chemo won't cure him why not research other ways that may. It is worth a try. Look in to the Gerson Institute, Dr. Kelley, Dr. Day, (www.drday.com), www.cancerdecisions.com, www.hacres.com, Dr. Gonzales.....there are SO may others out there who have had success when all others told folks they were "terminal". I will send you a book that a woman I know wrote about her son. If you want to email me you address I will send you her books....one being the testimony and one being the How-To.

    I lost my sister to intestinal cancer 11 years ago. I know the pain of watching the hope be yanked out from under the patient. When her cancer had spread all the oncologists could give her was chemo. They knew jack-diddley about nutrition and put her on ensure which is sugar. Hello? Cancer feeds on sugar.
    When I walked in to the chemo clinic the patients were walking around eating DONUTS! When I saw that I knew I couldn't trust the oncologist to my cancer. Why would they feed folks fighting cancer with the very food it feeds on??? So I took that as my clue....they were clueless about CURING cancer but they knew how to TREAT cancer. There is a huge difference. Was I mad? You bet! I felt betrayed by the very establishment that was supposed to know how to cure what I had.

    Your FIL is fortunate to have you as his daughter. I will keep you all in my prayers.

    peace, emily

    Emily, Thanks for the encouragement. I'm going to check out those sites. I'm up for reading everything I can. He is still in the hospital and on IVs and NG tube, so he isn't eating anything right now. I've read that about the sugar! Can't remember where but I honestly didn't know that before. I told my SIL that we have to talk to Mom about not letting him have much in the way of sugar. I know from a dieting standpoint that there is no good reason for sugar to be in our diets anyway. Can I ask you what your situation is? Are you currently in remission from your cancer? Was it stage IV with mets.? It helps so much to hear the success stories. Thanks again, Sharyn
  • sharynann
    sharynann Member Posts: 28
    spongebob said:

    Ahoy, Sharynann -

    First let me say what a wonderful daughter-in-law you are for caring so much about our father-in-law and wanting to help him in any way you can.

    Secondly let me just echo the sentiments of my friends here. If you chance to look back on some of the previous discussion threads here you will see that "odds-making" and "terminal diagnosis" are a bit of a pet peeve with us. We simply don't believe in them. We're not saying your physician shouldn't be honest with you, we are saying that (a) they cannot fathom the "odds" and (b) they cannot factor in the "attitude effect".

    My mother, after having survived uterine, bladder and colon cancer (guess you could say my family is a bit predisposed to cancer, eh?) was informed that a bone scan had revealed a significant lesion on one of her bones (as your cancer pals will tell you this is never a good thing). Over the subsequent 6 weeks they watched it and planned for a biopsy. The day before the biopsy they did a scan to see excatly where to go in to take the sample - it was still there, but smaller. The day of the procedure they did another scan to see where to put the needle and the lesion was gone. Completely. Kaput. They did another scan to be sure it was gone and it was.

    Miracles can happen - there are many testimonials out there. I don't really want to wax too religious on you here, but I want to tell you what I believe: God will not throw anything at us that we cannot handle - in one way or another. I believe that cancer survivors, by and large, don't wallow in the "why me?" complex because they get it - that they are chosen because they're tough. That they will be sick, because it's part of a bigger plan, but there's a reason for them to be sick and they're the one who got sick because they are strong enough in body and/or spirit to handle the trial.

    It's OK to be angry - now channel that anger into a positive flow of energy and go out and do good for other people and your father-in-law. That may be part of that Plan I spoke of...

    Keeping you and your family in my thoughts and prayers.

    - SpongeBob

    Thanks Spongebob! Your name cracks me up! My FIL is such a good man. He is loved and cared for so much and it makes it so hard for us to see him sick. But we don't let him see how sad we are. We leave the room if we need to "let it out" but for the most part we are very upbeat around him. I hope this helps him. My MIL is having a hard time dealing with it and we don't know how to handle this. She has to practically force herself to go to the hosp. to see him. Is this a normal way for a spouse to react? She doesn't seem to want any part of the medical decisions. We know she loves and cares about him. I just think it is too hard for her to face what he is going through. At the same time, we feel she needs to be there more than she is to help support him in this fight. Can you give me some insight on this? We are trying not to judge her. I know everyone handles things differently. Thanks for reminding me that God is in control here. I'm a christian and truly believe as you do. That he won't give us or Dad more than we can handle. Thanks for the support! Sharyn
  • sharynann
    sharynann Member Posts: 28
    unknown said:

    Hi! I know exactly how you feel, even though my husband is fortunate enough to have both an oncologist and surgeon who have given him nothing but good prognosis and support. But both these wonderful men are quick to point out that they are only human, can do so much, and the rest is in God's hands. As put so well by others already, many doctors just deal in statistics and forget that each person is an individual and at best, who's to say your FIL can't fall into the small group of statistics that do make it. That's what we all aim for and while none of us are naive enough to believe it will happen every time, it CAN and DOES happen. You keep holding on to that thought, convey that thought to your FIL and husband, as hard as it can be sometimes. The more your FIL feels those kind of vibes, the more he will go along with them. Pain, anger, and frustration are all part of this disease and it's okay to experience them. Once out, there are no more barriers to block the fight that is about to begin or to interfer with or drain the positive attitude that is so desperately needed. There are no guarantees for any of us and each day, in its own right, is a struggle but with many rewards along the way. Let your anger out....God knows I did and still experience moments of it every single day, and then get on with helping your FIL fight this disease. When the doctors don't provide encouragement, just keep thinking of all those TRUE stories where individuals have "stumped" the medical community. All things are possible. God Bless.

    Monika

    Thanks Monika! I take great comfort in all those stories that I read and hear about people who have stumped the doctors. I hope and pray my FIL and your husband as well as others here can tell their stories about surviving what was supposed to be an "incurable" disease. Thanks for the support. You hang in there and I will too! Sharyn
  • spongebob
    spongebob Member Posts: 2,565 Member
    sharynann said:

    Thanks Spongebob! Your name cracks me up! My FIL is such a good man. He is loved and cared for so much and it makes it so hard for us to see him sick. But we don't let him see how sad we are. We leave the room if we need to "let it out" but for the most part we are very upbeat around him. I hope this helps him. My MIL is having a hard time dealing with it and we don't know how to handle this. She has to practically force herself to go to the hosp. to see him. Is this a normal way for a spouse to react? She doesn't seem to want any part of the medical decisions. We know she loves and cares about him. I just think it is too hard for her to face what he is going through. At the same time, we feel she needs to be there more than she is to help support him in this fight. Can you give me some insight on this? We are trying not to judge her. I know everyone handles things differently. Thanks for reminding me that God is in control here. I'm a christian and truly believe as you do. That he won't give us or Dad more than we can handle. Thanks for the support! Sharyn

    Sharynann -

    I'm afraid I can't give you much insight into the whole spousal support thing. The extent of my spousal interaction when I got sick was to have my divorce papers served on me at the hospital the day after my surgery. Don't judge your MIL too harshly (not that you are), as you note, everyone handles things differently. She may well be in shock still or perhaps denial. These are all normal phases in the grief process. It's best to give her some time to work through it, with your support, and help her any way you can. She should work through it, though, and not get stuck in a rut. Give her some time, but not forever!

    Best regards,

    - SpongeBob
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    sharynann said:

    Thanks Monika! I take great comfort in all those stories that I read and hear about people who have stumped the doctors. I hope and pray my FIL and your husband as well as others here can tell their stories about surviving what was supposed to be an "incurable" disease. Thanks for the support. You hang in there and I will too! Sharyn

    Sharynann,

    I did not have Stage IV with mets...I was Stage III lymph pos. I had a good margin and succeessful resection. My sister's was in her small intestine and adhered to the main artery that feed the sm intestine so it was a tricky deal. They "did what they could" and sent her home telling her she could live a lifetime in five years. She died 4 years later...5 months after she gave birth to her daughter. Pretty wild eh? She knew she was "terminal" but she went ahead and had a beautiful healthy baby.

    The guy at www.hacres.com healed his colon cancer through diet. I am not sure what stage he had though.

    I have been declared cancer free for the past two years. I live each day with "For today I am cancer free". I do not use the term remission.

    You will find many believers on this network. Many are lifting your FIL up in prayer. You let him know that folks all over are praying for him (and hoping he'll join our semi-colon club).

    peace, emily

    "'But I will restore you to health and heal your wounds,' declares the Lord"
    Jeremiah 30:17
  • snowflakes20
    snowflakes20 Member Posts: 3
    Hey i know exactly how you feel. In May 2002 my dad was diagnosed with lung cancer... and it had spread to his bones and liver. In June the doctors told us that it was incurable and that they would only do treatment in order to help with his pain. I know it makes you angry to hear that they won't be able to cure him but it is often true. I am a junior scientist myself (although I work with the environment) and I understand the doctors and they have to be totally honest with you. They can't tell you that he is going to live if they are pretty sure that he won't. I am really sorry for your situation but you just need to be strong and be there for him. My dad passed away in November 2002 and I will always remember the extra time I spent with him.
  • sharynann
    sharynann Member Posts: 28

    Hey i know exactly how you feel. In May 2002 my dad was diagnosed with lung cancer... and it had spread to his bones and liver. In June the doctors told us that it was incurable and that they would only do treatment in order to help with his pain. I know it makes you angry to hear that they won't be able to cure him but it is often true. I am a junior scientist myself (although I work with the environment) and I understand the doctors and they have to be totally honest with you. They can't tell you that he is going to live if they are pretty sure that he won't. I am really sorry for your situation but you just need to be strong and be there for him. My dad passed away in November 2002 and I will always remember the extra time I spent with him.

    I understand what you are saying and I do know that the doctors have to just "tell it as they see it" but I guess I'm just hoping he is one of those cases that end up proving the doctors wrong. We are however being realistic to the possibility that it might not be the case but I also have to hang on to the fact that there is always hope. My brother in law made the perfect comment the other day. "It aint over till it's over!" Thanks for your reply. Sharyn
  • sharynann
    sharynann Member Posts: 28
    spongebob said:

    Sharynann -

    I'm afraid I can't give you much insight into the whole spousal support thing. The extent of my spousal interaction when I got sick was to have my divorce papers served on me at the hospital the day after my surgery. Don't judge your MIL too harshly (not that you are), as you note, everyone handles things differently. She may well be in shock still or perhaps denial. These are all normal phases in the grief process. It's best to give her some time to work through it, with your support, and help her any way you can. She should work through it, though, and not get stuck in a rut. Give her some time, but not forever!

    Best regards,

    - SpongeBob

    What a shame that you had to go through that! I guess it goes to show that some people don't take their wedding vows too seriously. My MIL is starting to come around now that he is home. She told me the other day that she is trying so hard not to treat him as if he is an invalid. It's not her nature to hover over him and if she does, she's afraid he will give up. We are trying to understand that. We are finding out more and more, that no one really knows how to act. I guess there is only one thing that is the most important. To make him feel that he is not alone in this fight. Thanks for all of your insight! Sharyn