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Can someone make me understand

tina dasilva
tina dasilva Member Posts: 641
edited March 2014 in Colorectal Cancer #1
Today Jorge is acting very down and i'm not understanding it at all. Yesterday we got some awesome news that his CEA count was at 11 when i told him the news about it he wasn't happy about it well he wasn't acting like he was .Last night i was thinking that he was acting like that because he was having a hard time having a bowel movement he gets that everytime he has chemo.Then today when he got up he was the same as yesterday feeling down. Maybe it was to much news for him to take in .Can anyone understand what he's thinking and feeling and give me any idea's what to do for him i'm lost here i have drop everything to take care of him maybe i'm doing something wrong.
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Comments

  • Nana b
    Nana b Member Posts: 3,030
    It's a tough ride!
    It could be many things, white cell blood count could be down, he is sluggish because he is unable to go to the bathroom (try suppositories). But as his caregiver, I would just give him space and love. This is all very mind boggling. My saddest moments were when I thought of my family, and the weekend after chemo. I just didn't feel right and felt like I was in a fog. Food didn't taste good, drink didn't taste good. b Just an overall blah...... And he could be digesting the news and not want to rave about it because after all there's another CEA test in a couple weeks. It can be anything.

    Hugs to you!!
  • Sundanceh
    Sundanceh Member Posts: 4,392
    He May Not Even Know Himself...
    Tina

    It's alot to wrap one's mind around when you are getting started out on this...most men are not good at "externalizing" their feelings. What he is thinking or feeling, he may not be sharing, because he does not want to burden you, or he simply just does not how to go about this yet.

    The cancer ride is alot like a rollercoast ride, with many highs and lows, and at any given time of the day.

    Sometimes, one just has to "ride it out" and let one's feelings and emotions wash over them and then they will pass - and you move forward.

    He could be thinking about his own mortality - he might be thinking about what this is doing to you - he may be thinking about the worst case scenario and leaving you behind.

    And combined with feeling crummy from treatments...well, you get the idea.

    I'm well into my 6th year now, so I see things much differently than I did when starting out. It's all so scary and new - new terminology, procedures, treatments, and surgeries...it's a world all its own.

    I don't think you are doing anything wrong at all - as a CareGiver, you are along for the ride as well, and your feelings are in this as well. Right now, your focus is on him and trying to make everything "better." Sometimes, this will work and other times it might not...again, sometimes we just have to let it go....this might happen to you as well, with all the energy you are devoting, remember to take a moment or two, here and there, to take care of Tina...by doing that you can continue to care for Jorge.

    Remember, that this is a marathon and not a sprint - there are no quick fixes and no right or wrong answers, or ways to do things.

    I would say, just support him and be there for him - if he stays down for too long, we don't want that - we don't want him to slip into a depressive state. Being down for a day or two here and there, or even having a mini pity party, is part of the normal feelings we all experience. But if they begin to stretch into weeks or beyond, then perhaps some medication to pull him out and/or therapy.

    I went through the first 5-years of my journey by myself - it was extremely difficult, but I persevered. And then, I found this board and knew that I could apply what I had learned and experienced to help other people going through this - people just like you and Jorge.

    Support could be a good thing - you might tell him some stories from the board about people overcoming odds and doing quite well...(if he's open to that). And perhaps one day, he might consider joining the board so he could read on his own and/or express his thoughts.

    Right now, it's all real early for Jorge (you too). When you first start out, you are more in a "reactive mode." As time goes by, you change as people and will become more informed and begin to take a more "pro-active" approach to your situation. But TIME will take care of this.

    For now, just take it in small bites and try not to get overwhelmed.

    -Craig
  • angelsbaby
    angelsbaby Member Posts: 1,165
    Nana b said:

    It's a tough ride!
    It could be many things, white cell blood count could be down, he is sluggish because he is unable to go to the bathroom (try suppositories). But as his caregiver, I would just give him space and love. This is all very mind boggling. My saddest moments were when I thought of my family, and the weekend after chemo. I just didn't feel right and felt like I was in a fog. Food didn't taste good, drink didn't taste good. b Just an overall blah...... And he could be digesting the news and not want to rave about it because after all there's another CEA test in a couple weeks. It can be anything.

    Hugs to you!!

    My husband
    Was the same when he was on chemo. not happy, almost sad at times,but he hated doing the chemo and he hated the nausia he had. after about 4days he would pep up alittle. I know that the cancer and chemo was so hard for my husband who was never sick or in a hospital a day in his life and all of a sudden he has a very bad desease and it just went on and on with tests you know what i mean I just gave him his space and cry outside or away from him because i could feel him anguish Be strong and my thoughts and prayers are for you and your honey

    take care
    michelle
  • angelsbaby
    angelsbaby Member Posts: 1,165
    Nana b said:

    It's a tough ride!
    It could be many things, white cell blood count could be down, he is sluggish because he is unable to go to the bathroom (try suppositories). But as his caregiver, I would just give him space and love. This is all very mind boggling. My saddest moments were when I thought of my family, and the weekend after chemo. I just didn't feel right and felt like I was in a fog. Food didn't taste good, drink didn't taste good. b Just an overall blah...... And he could be digesting the news and not want to rave about it because after all there's another CEA test in a couple weeks. It can be anything.

    Hugs to you!!

    DOULBLE POST SORRY
    Was the same when he was on chemo. not happy, almost sad at times,but he hated doing the chemo and he hated the nausia he had. after about 4days he would pep up alittle. I know that the cancer and chemo was so hard for my husband who was never sick or in a hospital a day in his life and all of a sudden he has a very bad desease and it just went on and on with tests you know what i mean I just gave him his space and cry outside or away from him because i could feel him anguish Be strong and my thoughts and prayers are for you and your honey

    take care

    michelle

    SORRY DOUBLE POST
  • This comment has been removed by the Moderator
  • AnneCan
    AnneCan Member Posts: 3,673
    Tina
    First of all, I don't think you are doing anything wrong. This is like a wild rollercoaster ride we are on. Sometimes the drugs we are taking can bring us up or down, as well as the fatigue we experience while undergoing chemo or radiation. Good news like you two received is great, + personally I think it is important to celebrate. Whenever we get good news my husband + I open up a small bottle of champagne. We are saving all the empty bottles - they are on top of our china cabinet + are a reminder to me of good news we have received. That being said, I find later I ask myself "what's next", "what if?". Sometimes I myself don't even know why I am feeling so up + down. Don't doubt yourself; it sounds like you are there for him every step of the way, including being here. I am guessing tomorrow will be a little brighter. Make sure you do some nice things for yourself, too.
  • Kerry S
    Kerry S Member Posts: 606
    Chemo sucks
    Tina,
    You really only need to understand one basic thing. Chemo sucks period.
    Just give him your love.
    Kerry
  • CherylHutch
    CherylHutch Member Posts: 1,375
    You are doing just fine!
    Hi Tina,

    Just jumping in here to add my .02 to the conversation. I'm sorry, I haven't found your original messages so I'm not totally aware of your and Jorge's situation, but I'm assuming from what is said here and the responses that Jorge has been fairly recently diagnosed with cancer, has gone through treatments/surgery(?), etc. and is still relatively new to this journey. Everyone in this forum is on the journey... and since the journey is unique to everyone, we all are at different stages on our own journeys. But there are lots of similarities, which is what brings us all together on this forum. And might I add, that whether you are the one with cancer or the caregiver, both are on the journey. Yes, one can say "Oh, but the one with cancer has it worst... us caregivers are there to support and care for them but we don't have it half as bad as someone WITH cancer". Wrong answer! The caregiver has it every bit as trying, scary, confusing, frustrating and all those other things that the person with cancer has.

    When one is first diagnosed, everyone's world turns upside down, and then settles on fear, terror, and OMG!! The terror is, of course, because we've all heard the stories where someone is diagnosed and no sooner is told they have cancer and they are dead within months. Or those who put up a long battle with cancer and died 3-5 years later. For most of us, neither is acceptable prognosis'... we want to hear that we are going to live long lives and we are in an absolute panic to find out if this is possible and if so, how? We don't tend to hear a lot of stories of folk who have gone on to live healthy, long lives because... well, those people are literally out there living long, healthy lives and have put their cancer scare behind them. Good for them... but it would be nice if they'd all come back once a month to remind us that there are lots of folk who have beaten the odds :)

    So now... is what Jorge going through right now normal?? Totally!! It's not just about today, or something that was said/not said today... it is an accumulation of everything that is going on in his life and how his world was thrown upside down. He's still having to adapt to that and it doesn't happen overnight. Heck, I was diagnosed back in December 2006 and the terror was so strong, I could taste it. Of course, with the advance of time and all the treatments, doctors' appts, scans, etc., my mind sort of became number so I wasn't living in a constant state of panic... but even now, almost 4 years later, I am doing really, really well, but I still have my moments when I think, "What is going to become of me?? Am I still going to be alive next year?" and when I dwell on that, it can get me down.

    So instead, I have learned the happy place for me is to be in denial. I can live my life, taking whatever meds I need, and just enjoying life and what I have chosen to do in my retirement ... life is good! As long as I stay in denial, I have no fears/depressions/sad moments. It's only when I have to force myself back into reality... like when I have to go for a CT scan, or an oncologist appt., or blood work. That's when I'm reminded exactly what's going on in my life and I'm actually on this journey.

    I'm not suggesting that denial is the best route for everyone because there are those who would get into it so deep they would refuse treatments/appts/blood work because as far as they are concerned, everything is fine. But if one can live their life where cancer is not allowed to rule their lives, yet still get the treatments and checks that are needed... it's sort of the best of both worlds.

    But until Jorge finds that "comfortable" point, it is totally normal for him to have highs and lows. And guess what? You aren't immune to them! You, too, are going to have highs and lows! And anger/frustration/confusion. The worst part is you are going to feel guilty when you feel any of these things... but that is what you are going to have to fight, because you are NOT to ever feel guilty for any feelings you have. It is normal (and healthy) to get angry! Cancer sucks... and it makes everyone angry, even the doctors and researchers who spend their careers trying to tame the beast. So if everyone is angry at cancer, why should you feel guilty for getting angry, or frustrated, or confused?

    But, like Craig said... keep an eye on how long Jorge is feeling depressed and down. If it's more than a couple of days, then it would be a good idea to go see his doctor. The chemo and any/all related medications can play havoc with one's chemical balance and if that gets off, even by just a little bit, it can cause mood swings, depression, feelings of helplessness, etc. and with the right anti-depressant, it can straighten that all up so that life is worth living again :)

    There is absolutely NOTHING WRONG with asking for help. We have the technology and the medication to fix a lot of problems so why not take advantage of that rather than suffer? That goes for both the patient and the caregiver! Don't be brave... ask for help when it's needed, and you both will feel so much better for it.

    Cheryl
  • Buzzard
    Buzzard Member Posts: 3,043

    You are doing just fine!
    Hi Tina,

    Just jumping in here to add my .02 to the conversation. I'm sorry, I haven't found your original messages so I'm not totally aware of your and Jorge's situation, but I'm assuming from what is said here and the responses that Jorge has been fairly recently diagnosed with cancer, has gone through treatments/surgery(?), etc. and is still relatively new to this journey. Everyone in this forum is on the journey... and since the journey is unique to everyone, we all are at different stages on our own journeys. But there are lots of similarities, which is what brings us all together on this forum. And might I add, that whether you are the one with cancer or the caregiver, both are on the journey. Yes, one can say "Oh, but the one with cancer has it worst... us caregivers are there to support and care for them but we don't have it half as bad as someone WITH cancer". Wrong answer! The caregiver has it every bit as trying, scary, confusing, frustrating and all those other things that the person with cancer has.

    When one is first diagnosed, everyone's world turns upside down, and then settles on fear, terror, and OMG!! The terror is, of course, because we've all heard the stories where someone is diagnosed and no sooner is told they have cancer and they are dead within months. Or those who put up a long battle with cancer and died 3-5 years later. For most of us, neither is acceptable prognosis'... we want to hear that we are going to live long lives and we are in an absolute panic to find out if this is possible and if so, how? We don't tend to hear a lot of stories of folk who have gone on to live healthy, long lives because... well, those people are literally out there living long, healthy lives and have put their cancer scare behind them. Good for them... but it would be nice if they'd all come back once a month to remind us that there are lots of folk who have beaten the odds :)

    So now... is what Jorge going through right now normal?? Totally!! It's not just about today, or something that was said/not said today... it is an accumulation of everything that is going on in his life and how his world was thrown upside down. He's still having to adapt to that and it doesn't happen overnight. Heck, I was diagnosed back in December 2006 and the terror was so strong, I could taste it. Of course, with the advance of time and all the treatments, doctors' appts, scans, etc., my mind sort of became number so I wasn't living in a constant state of panic... but even now, almost 4 years later, I am doing really, really well, but I still have my moments when I think, "What is going to become of me?? Am I still going to be alive next year?" and when I dwell on that, it can get me down.

    So instead, I have learned the happy place for me is to be in denial. I can live my life, taking whatever meds I need, and just enjoying life and what I have chosen to do in my retirement ... life is good! As long as I stay in denial, I have no fears/depressions/sad moments. It's only when I have to force myself back into reality... like when I have to go for a CT scan, or an oncologist appt., or blood work. That's when I'm reminded exactly what's going on in my life and I'm actually on this journey.

    I'm not suggesting that denial is the best route for everyone because there are those who would get into it so deep they would refuse treatments/appts/blood work because as far as they are concerned, everything is fine. But if one can live their life where cancer is not allowed to rule their lives, yet still get the treatments and checks that are needed... it's sort of the best of both worlds.

    But until Jorge finds that "comfortable" point, it is totally normal for him to have highs and lows. And guess what? You aren't immune to them! You, too, are going to have highs and lows! And anger/frustration/confusion. The worst part is you are going to feel guilty when you feel any of these things... but that is what you are going to have to fight, because you are NOT to ever feel guilty for any feelings you have. It is normal (and healthy) to get angry! Cancer sucks... and it makes everyone angry, even the doctors and researchers who spend their careers trying to tame the beast. So if everyone is angry at cancer, why should you feel guilty for getting angry, or frustrated, or confused?

    But, like Craig said... keep an eye on how long Jorge is feeling depressed and down. If it's more than a couple of days, then it would be a good idea to go see his doctor. The chemo and any/all related medications can play havoc with one's chemical balance and if that gets off, even by just a little bit, it can cause mood swings, depression, feelings of helplessness, etc. and with the right anti-depressant, it can straighten that all up so that life is worth living again :)

    There is absolutely NOTHING WRONG with asking for help. We have the technology and the medication to fix a lot of problems so why not take advantage of that rather than suffer? That goes for both the patient and the caregiver! Don't be brave... ask for help when it's needed, and you both will feel so much better for it.

    Cheryl

    Tina and Jorge
    As a caregiver Tina you are doing really well...To simply be there is a Godsend for any cancer patient. It may be that he is simply going through the stages of mental grieving, and he may not want to share that with you in hopes that it only worries him.....That is love for you from him...What is needed is for you to let him know that all of his feelings are your feelings and to be open about how he feels actually helps you as well. It allows the both of you to share problems and aids in working through them, it also gives you the caregiver the advantage of how maybe to be with him as far as taking care of what he needs from you , and mostly it is encouragement. He needs to know that you will be ok no matter what. That was the hardest thing for me, to realize that my family would be ok no matter what happened to me. Then the fleeting and lingering thoughts of maybe not making it, oh so painful and so depressing in itself. He may lash out in anger, or cry like a baby, all of which are actions caused by the diseases , not the person. Just simply tell him that no matter what happens you will be there to make sure that only the best things will evolve out of this and that you are there when he needs you even if only to vent. You are doing a wonderful job for him, caregivers never know what to do next, we simply just need to be there........Love to you both......Clift
  • Lori-S
    Lori-S Member Posts: 1,277
    Tina, Tina, Tina
    It sounds to me like you are doing a GREAT job. Don't worry or put too much stress on yourself about how you are doing. I can tell just by your posts that you love and care for Jorge with all your heart.

    Remember that he's probably feeling crappy with the chemo. And, I don't know about everyone but, for me, I just hate to see the look in the eyes of my loved ones because it makes me feel bad that they are going through all of this because of me. Also, if there are good things that happen there is a part of me that seems to just be waiting for the other shoe to drop. Thanks cancer, that was never a part of personality before. Maybe he is a little afraid to be happy because of something like that too. Like they say, it's a rollercoaster, only it's not a 2 minute ride!

    Maybe he just feels like crap. There's something about having cancer inside you that you just can't explain to anyone when it's first happening. You could ask him if he wants to talk about how he's feeling and if he's not open to that, then give him a little space. When he figures it out or is ready, he might share it. I personally need a lot of space simply because I feel so guilty about what others are going through with my illness. We patients do worry so much about our caregivers.

    You just keep on being there for him. I'm sending you both prayers and happy wishes.
  • just4Brooks
    just4Brooks Member Posts: 980
    It's a hell of a ride
    He'll be okay.. the whole cancer trip gets to be too much sometimes (even the good news). Give him some time to let things soak in.

    Brooks
  • tina dasilva
    tina dasilva Member Posts: 641
    Nana b said:

    It's a tough ride!
    It could be many things, white cell blood count could be down, he is sluggish because he is unable to go to the bathroom (try suppositories). But as his caregiver, I would just give him space and love. This is all very mind boggling. My saddest moments were when I thought of my family, and the weekend after chemo. I just didn't feel right and felt like I was in a fog. Food didn't taste good, drink didn't taste good. b Just an overall blah...... And he could be digesting the news and not want to rave about it because after all there's another CEA test in a couple weeks. It can be anything.

    Hugs to you!!

    Nana
    Thank you Nana so much for your support i hate seeing him down like that i always think if he's down for to long the cancer will grow .i try so hard to keep him up but i think your right about giving him space i will try to do that. Thank you Tina
  • tina dasilva
    tina dasilva Member Posts: 641

    My husband
    Was the same when he was on chemo. not happy, almost sad at times,but he hated doing the chemo and he hated the nausia he had. after about 4days he would pep up alittle. I know that the cancer and chemo was so hard for my husband who was never sick or in a hospital a day in his life and all of a sudden he has a very bad desease and it just went on and on with tests you know what i mean I just gave him his space and cry outside or away from him because i could feel him anguish Be strong and my thoughts and prayers are for you and your honey

    take care
    michelle

    Michelle
    Thank you Michelle i do the samething as you did when im alone i cry and if im not alone and i need to cry i go outside i dont let anyone in my home see me cry i need to be strong for Jorge and my kids and keep everything together. Thank you Tina
  • tina dasilva
    tina dasilva Member Posts: 641
    Sundanceh said:

    He May Not Even Know Himself...
    Tina

    It's alot to wrap one's mind around when you are getting started out on this...most men are not good at "externalizing" their feelings. What he is thinking or feeling, he may not be sharing, because he does not want to burden you, or he simply just does not how to go about this yet.

    The cancer ride is alot like a rollercoast ride, with many highs and lows, and at any given time of the day.

    Sometimes, one just has to "ride it out" and let one's feelings and emotions wash over them and then they will pass - and you move forward.

    He could be thinking about his own mortality - he might be thinking about what this is doing to you - he may be thinking about the worst case scenario and leaving you behind.

    And combined with feeling crummy from treatments...well, you get the idea.

    I'm well into my 6th year now, so I see things much differently than I did when starting out. It's all so scary and new - new terminology, procedures, treatments, and surgeries...it's a world all its own.

    I don't think you are doing anything wrong at all - as a CareGiver, you are along for the ride as well, and your feelings are in this as well. Right now, your focus is on him and trying to make everything "better." Sometimes, this will work and other times it might not...again, sometimes we just have to let it go....this might happen to you as well, with all the energy you are devoting, remember to take a moment or two, here and there, to take care of Tina...by doing that you can continue to care for Jorge.

    Remember, that this is a marathon and not a sprint - there are no quick fixes and no right or wrong answers, or ways to do things.

    I would say, just support him and be there for him - if he stays down for too long, we don't want that - we don't want him to slip into a depressive state. Being down for a day or two here and there, or even having a mini pity party, is part of the normal feelings we all experience. But if they begin to stretch into weeks or beyond, then perhaps some medication to pull him out and/or therapy.

    I went through the first 5-years of my journey by myself - it was extremely difficult, but I persevered. And then, I found this board and knew that I could apply what I had learned and experienced to help other people going through this - people just like you and Jorge.

    Support could be a good thing - you might tell him some stories from the board about people overcoming odds and doing quite well...(if he's open to that). And perhaps one day, he might consider joining the board so he could read on his own and/or express his thoughts.

    Right now, it's all real early for Jorge (you too). When you first start out, you are more in a "reactive mode." As time goes by, you change as people and will become more informed and begin to take a more "pro-active" approach to your situation. But TIME will take care of this.

    For now, just take it in small bites and try not to get overwhelmed.

    -Craig

    Craig
    WOW overwhelmed that's saying it nicely all i want is for him to be happy and i know one he will be .Thank you tina
  • tina dasilva
    tina dasilva Member Posts: 641
    unknown said:

    This comment has been removed by the Moderator

    Kathy
    Kathy Jorge's CEA was at 54 and now it's at 11 and a week before we were told the tumor in his liver got 1cm smaller so the news of the cea count wow happy right maybe im just hoping to much to soon . i would like to thank you for your support Tina
  • tina dasilva
    tina dasilva Member Posts: 641
    AnneCan said:

    Tina
    First of all, I don't think you are doing anything wrong. This is like a wild rollercoaster ride we are on. Sometimes the drugs we are taking can bring us up or down, as well as the fatigue we experience while undergoing chemo or radiation. Good news like you two received is great, + personally I think it is important to celebrate. Whenever we get good news my husband + I open up a small bottle of champagne. We are saving all the empty bottles - they are on top of our china cabinet + are a reminder to me of good news we have received. That being said, I find later I ask myself "what's next", "what if?". Sometimes I myself don't even know why I am feeling so up + down. Don't doubt yourself; it sounds like you are there for him every step of the way, including being here. I am guessing tomorrow will be a little brighter. Make sure you do some nice things for yourself, too.

    Anne
    Anne hun your the best and your also right about the rollercoaster ride man i hate those rides .I'm sure your right that tomorrow will be better Thank you so much lots of love Tina
  • tina dasilva
    tina dasilva Member Posts: 641
    Kerry S said:

    Chemo sucks
    Tina,
    You really only need to understand one basic thing. Chemo sucks period.
    Just give him your love.
    Kerry

    Kerry
    You are so right
    kerry chemo sucks and yes i will give him all my love Thank you Tina
  • tina dasilva
    tina dasilva Member Posts: 641

    You are doing just fine!
    Hi Tina,

    Just jumping in here to add my .02 to the conversation. I'm sorry, I haven't found your original messages so I'm not totally aware of your and Jorge's situation, but I'm assuming from what is said here and the responses that Jorge has been fairly recently diagnosed with cancer, has gone through treatments/surgery(?), etc. and is still relatively new to this journey. Everyone in this forum is on the journey... and since the journey is unique to everyone, we all are at different stages on our own journeys. But there are lots of similarities, which is what brings us all together on this forum. And might I add, that whether you are the one with cancer or the caregiver, both are on the journey. Yes, one can say "Oh, but the one with cancer has it worst... us caregivers are there to support and care for them but we don't have it half as bad as someone WITH cancer". Wrong answer! The caregiver has it every bit as trying, scary, confusing, frustrating and all those other things that the person with cancer has.

    When one is first diagnosed, everyone's world turns upside down, and then settles on fear, terror, and OMG!! The terror is, of course, because we've all heard the stories where someone is diagnosed and no sooner is told they have cancer and they are dead within months. Or those who put up a long battle with cancer and died 3-5 years later. For most of us, neither is acceptable prognosis'... we want to hear that we are going to live long lives and we are in an absolute panic to find out if this is possible and if so, how? We don't tend to hear a lot of stories of folk who have gone on to live healthy, long lives because... well, those people are literally out there living long, healthy lives and have put their cancer scare behind them. Good for them... but it would be nice if they'd all come back once a month to remind us that there are lots of folk who have beaten the odds :)

    So now... is what Jorge going through right now normal?? Totally!! It's not just about today, or something that was said/not said today... it is an accumulation of everything that is going on in his life and how his world was thrown upside down. He's still having to adapt to that and it doesn't happen overnight. Heck, I was diagnosed back in December 2006 and the terror was so strong, I could taste it. Of course, with the advance of time and all the treatments, doctors' appts, scans, etc., my mind sort of became number so I wasn't living in a constant state of panic... but even now, almost 4 years later, I am doing really, really well, but I still have my moments when I think, "What is going to become of me?? Am I still going to be alive next year?" and when I dwell on that, it can get me down.

    So instead, I have learned the happy place for me is to be in denial. I can live my life, taking whatever meds I need, and just enjoying life and what I have chosen to do in my retirement ... life is good! As long as I stay in denial, I have no fears/depressions/sad moments. It's only when I have to force myself back into reality... like when I have to go for a CT scan, or an oncologist appt., or blood work. That's when I'm reminded exactly what's going on in my life and I'm actually on this journey.

    I'm not suggesting that denial is the best route for everyone because there are those who would get into it so deep they would refuse treatments/appts/blood work because as far as they are concerned, everything is fine. But if one can live their life where cancer is not allowed to rule their lives, yet still get the treatments and checks that are needed... it's sort of the best of both worlds.

    But until Jorge finds that "comfortable" point, it is totally normal for him to have highs and lows. And guess what? You aren't immune to them! You, too, are going to have highs and lows! And anger/frustration/confusion. The worst part is you are going to feel guilty when you feel any of these things... but that is what you are going to have to fight, because you are NOT to ever feel guilty for any feelings you have. It is normal (and healthy) to get angry! Cancer sucks... and it makes everyone angry, even the doctors and researchers who spend their careers trying to tame the beast. So if everyone is angry at cancer, why should you feel guilty for getting angry, or frustrated, or confused?

    But, like Craig said... keep an eye on how long Jorge is feeling depressed and down. If it's more than a couple of days, then it would be a good idea to go see his doctor. The chemo and any/all related medications can play havoc with one's chemical balance and if that gets off, even by just a little bit, it can cause mood swings, depression, feelings of helplessness, etc. and with the right anti-depressant, it can straighten that all up so that life is worth living again :)

    There is absolutely NOTHING WRONG with asking for help. We have the technology and the medication to fix a lot of problems so why not take advantage of that rather than suffer? That goes for both the patient and the caregiver! Don't be brave... ask for help when it's needed, and you both will feel so much better for it.

    Cheryl

    Cheryl
    Cheryl to you a little about Jorge on june of this year he was told he had stage 4 colon liver cancer now last week he was told that the tumor in his liver got smaller by 1cm this week he got told his cea is down to 11 from 54 .thank you so much for your support Tina
  • tina dasilva
    tina dasilva Member Posts: 641
    Lori-S said:

    Tina, Tina, Tina
    It sounds to me like you are doing a GREAT job. Don't worry or put too much stress on yourself about how you are doing. I can tell just by your posts that you love and care for Jorge with all your heart.

    Remember that he's probably feeling crappy with the chemo. And, I don't know about everyone but, for me, I just hate to see the look in the eyes of my loved ones because it makes me feel bad that they are going through all of this because of me. Also, if there are good things that happen there is a part of me that seems to just be waiting for the other shoe to drop. Thanks cancer, that was never a part of personality before. Maybe he is a little afraid to be happy because of something like that too. Like they say, it's a rollercoaster, only it's not a 2 minute ride!

    Maybe he just feels like crap. There's something about having cancer inside you that you just can't explain to anyone when it's first happening. You could ask him if he wants to talk about how he's feeling and if he's not open to that, then give him a little space. When he figures it out or is ready, he might share it. I personally need a lot of space simply because I feel so guilty about what others are going through with my illness. We patients do worry so much about our caregivers.

    You just keep on being there for him. I'm sending you both prayers and happy wishes.

    Lori
    Lori you are so right about Jorge is the love of my life he has all of my heart and yes i know he's feeling crappy that's why i'm trying so hard to make him feel better and show him how much i love him. Thank you for your support Tina
  • Lovekitties
    Lovekitties Member Posts: 3,364
    The emotional side of a
    The emotional side of a cancer diagnosis is as difficult as the physical and hits the care givers particularly hard. Don't worry that you are doing anything wrong. It is obvious from your posts that you deeply care for Jorge.

    As you both go through this process it is important that you communicate about everything. It is ok for him to know your concerns and for you to know his. In talking about it and laying the plan out together, you will both begin to feel you have more control. Getting him to talk about how he is feeling after chemo will help you to understand how to proceed.

    None of us, patient or caregiver, wants to upset the other by showing strong emotions. I don't know if that is right or wrong. It all depends on the moment I guess. Men see their roll in the relationship as taking care of everyone else, not having to be taken care of. You just need to help him understand that it is a partnership, helping each other through this.

    It is hard for the patient to remember that progress against this disease is made in small steps. Perhaps Jorge was thinking his CEA should have been 0 instead of just being lower.

    You mentioned before that you had gotten Jorge to sit and read some of the posts here with you. Please encourage him to do that more often. Everyone here wants to help you both in any way we can to deal with the ups and the downs.

    Hugs,

    Marie who loves kitties