I am new here....Feeling helpless and hopeless

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Comments

  • chrisk06 said:

    I don't thnk that is
    I don't thnk that is available here. Haen't checked, but I heard it somewhere during all of this

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  • Betty in Vegas
    Betty in Vegas Member Posts: 290 Member
    chrisk06 said:

    Prayer
    Betty every night I sit in my rooom and beg God to help him, to help him find his inner strength to beat this monster and so far nothing. I am not saying I am giving up, cause I'm not, I just question if he really hears me? I know that sounds stupid.

    He hears you
    And he's crying with you. However, he won't force your husband to get in the game. He isn't that type of God, he leaves us our free will to come to HIM. But I know he will give him thoughts and situations to turn him to healing. I know that.

    I will pray for you, and I want you to know, that you are not alone. You ask William, he will tell you, that the Lord is listening and he will not leave you or forsake you.

    There is nothing like a praying wife to make change in the world.


    Betty

    ps...I got the SS info on the ACOR EC list...from someone who used to work for SS. It's supposedly an automatic approval once you are diagnosed with EC. It does take time though.
  • chrisk06
    chrisk06 Member Posts: 110
    unknown said:

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    Sherri
    I'ts not that he can't eat solids, he can eat steak if he wants, he just has no appetite. They have him on antidepressents, because they think he's depressed. He never leaves the house, doesn't talk to his friends, rips my head off for asking him if he wants to eat, showers maybe once a week (he'd kill me if he knew i told someone that) I know those are all signs of depression. But there are other things, even if he eats a small amount, his stomach cramps, he spits out this foamy stuff. I just don't know
  • chrisk06
    chrisk06 Member Posts: 110
    TimKD said:

    How long to gain weight
    I think it took almost a year before I started to gain weight again, a year after the surgery. I had chemo, radiation, and then surgery in that order. I developed a leak at the incision site and developed an infection which almost killed me. I now have a deformed back because of this, a large deep scare under my shoulder blade. I traveled back east to see my daughter in college in October and had the surgery the previous November. I was weak but I managed. Did he have any complications that could be contributing to his malaise? He won the battle, the worst is over, all he needs to do is work on getting his strength back and feeling healthy again which will come in time. Its a long process. How much does he eat in a typical day?

    HOw long to gain weight
    He had everything that could go wrong go wrong throuth all of this. His port caused a blood clot in his neck, the first round of chemo (cisplatin & 5FU) put him in the hospital for 3 days, during surgery his lung wasn't strong enough for the deflation to let the other lung work so they could operate. They had to inflate and deflate the lung continually over a period of 2 hrs. He was in the hospital for 3 days for dehydration and malnutrition. It's been a whirlwind. If he east 2 cups of food a day, I would be impressed
  • JaneE2366
    JaneE2366 Member Posts: 289 Member
    chrisk06 said:

    Sherri
    I'ts not that he can't eat solids, he can eat steak if he wants, he just has no appetite. They have him on antidepressents, because they think he's depressed. He never leaves the house, doesn't talk to his friends, rips my head off for asking him if he wants to eat, showers maybe once a week (he'd kill me if he knew i told someone that) I know those are all signs of depression. But there are other things, even if he eats a small amount, his stomach cramps, he spits out this foamy stuff. I just don't know

    anti depressants
    Sounds like the anti-depressant is not working. Talk to his dr about changing to a different once. They all are not the same and I have heard that sometimes it takes trying a few before you get the right one for you.
    Praying for you and your husband.
    Jane
  • chrisk06
    chrisk06 Member Posts: 110
    JaneE2366 said:

    anti depressants
    Sounds like the anti-depressant is not working. Talk to his dr about changing to a different once. They all are not the same and I have heard that sometimes it takes trying a few before you get the right one for you.
    Praying for you and your husband.
    Jane

    Anti depressents
    He is on his 2nd one so we are trying. Thank you for the prayers
  • chrisk06 said:

    Anti depressents
    He is on his 2nd one so we are trying. Thank you for the prayers

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  • chrisk06
    chrisk06 Member Posts: 110
    unknown said:

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    Tried everything
    Sheri,

    I've called the doc. I talked to the suregeon, and his primary care dr. They have done CT's that come back clean. His blood work is good. As far as the feeding tube, he used it faithfully for 2 0r 3 weeks, then it was maybe 2 or 3 times a week, then decrease more. He finally stopped using it all together. At that time he seemed to be doing ok 154 pounds, eating, getting out doing things, we even went to Sturgis SD for bike week with 13 people. We trailered his bike out and when we got there he rode, he ate, he seemed good. We got home and started to go downhill slowly, then with in the last 1 1/2 months it has gotten horrible. His friends talk to him all the time about that he needs to eat. He sees how he looks and he hates it, he says he wants to get better, but it just isn't happening He told me last night after he weighed himself he was 125. He is 6 ft. tall!
  • chrisk06 said:

    Tried everything
    Sheri,

    I've called the doc. I talked to the suregeon, and his primary care dr. They have done CT's that come back clean. His blood work is good. As far as the feeding tube, he used it faithfully for 2 0r 3 weeks, then it was maybe 2 or 3 times a week, then decrease more. He finally stopped using it all together. At that time he seemed to be doing ok 154 pounds, eating, getting out doing things, we even went to Sturgis SD for bike week with 13 people. We trailered his bike out and when we got there he rode, he ate, he seemed good. We got home and started to go downhill slowly, then with in the last 1 1/2 months it has gotten horrible. His friends talk to him all the time about that he needs to eat. He sees how he looks and he hates it, he says he wants to get better, but it just isn't happening He told me last night after he weighed himself he was 125. He is 6 ft. tall!

    This comment has been removed by the Moderator
  • K_ann1015
    K_ann1015 Member Posts: 500
    chrisk06 said:

    Tried everything
    Sheri,

    I've called the doc. I talked to the suregeon, and his primary care dr. They have done CT's that come back clean. His blood work is good. As far as the feeding tube, he used it faithfully for 2 0r 3 weeks, then it was maybe 2 or 3 times a week, then decrease more. He finally stopped using it all together. At that time he seemed to be doing ok 154 pounds, eating, getting out doing things, we even went to Sturgis SD for bike week with 13 people. We trailered his bike out and when we got there he rode, he ate, he seemed good. We got home and started to go downhill slowly, then with in the last 1 1/2 months it has gotten horrible. His friends talk to him all the time about that he needs to eat. He sees how he looks and he hates it, he says he wants to get better, but it just isn't happening He told me last night after he weighed himself he was 125. He is 6 ft. tall!

    don't give up---he is lucky to have you!
    I agree with Sherri---something else must be wrong...

    maybe you can enlist a good friend (or two) and convince him to go to another location for second opinion. Somehow HOPE needs to be re-introduced into the equation! If I was at that weight-height ratio --I don't think I could function or accomplish anything!!! I think 6-7 ensures/day would maintain his weight---, but he has to gain---only a dietitian can tell for sure. Take a deep breathe and realize that you are right, he needs help---but it is tricky. He is lucky to have someone like you that cares. (remember to care for yourself too....)

    Also--even though you don't feel like you are getting answers---keep saying a prayer---even if it is simple like "God, please help us" or "please help me/us know what to do"...eventually, you will get answers---be patient.
    here is one prayer that is in a little booklet that went with a prayer blanket we gave my dad:

    PRAYER WHEN WORRIED

    Dear Lord,
    I am worried and full of fear
    Anxiety and apprehension fill my mind.
    I tried to reassure myself that that there is nothing to worry about, but such reassurances do not seem to help.
    I want to rest myself confidently upon your loving care and guidance.
    But I have been too nervous even to rest.
    Touch me Lord with your Peace, to know that you are God and that I need not fear.
    Amen

    your CSN friends are always here...we will all do what we can, and pray for more wisdom, guidance, peace and comfort....
    Kim
  • viking796
    viking796 Member Posts: 4
    weight
    I go to GNC and buy cans of WEIGHT GAINER 2200 GOLD. and MEGA MEN MAXIMUM NUTRITION VITAMIN AND MINERAL SUPPLEMENTS. Both are in powder form. I make a shake with them and add a banana and frozen fruit. That is all that is keeping me nourished and it has stopped rapid wieght loss. I am down from 212 to 135 but I don't feel weak. Go to GNC WEBSITE AND READ ABOUT IT.

    GOOD LUCK, LARRY (viking)
  • dlhigh90
    dlhigh90 Member Posts: 7
    helpless
    I am still in my chemo and rad. phase and have gone from 210-167 I do not have a feeding tube but I can eat soups, oatmeal,rice and gravy etc. also I drink 3 cans of insure a day.I know i will get a feeding tube after surgery.I do have two power ports so if I loose to much waight they can feed me some through it. You may want to ask your Doc. about a port.when I was loosing rapidly my Dr. gave me a week of steriods and i gained three pounds.If you have kids or grand kids get them to fix him a plate of what you know he will try.I have a hard time not eating even if I don't want to when my grand daughters say we fixed this just for you Grandpa.I eat some.hope this helps.
  • aunti_m
    aunti_m Member Posts: 41
    Feeling helpless
    Hi, my husband was dx in May 2009 with Stage iv EC. He underwent 6 rounds of chemo, his last was Oct. 5. He too has become very depressed won't eat, lost 16 lbs in one week (VERY SCARY), he was on several different anti-depressants which havn't worked. Several different appetite stimulants. He also can swallow fine, just can't eat, he says it tastes terrible and spits out the food. He will drink one Ensure a day and maybe a half a banana. He is withering away in front of me and I can't force him to eat. He has to want to eat. He has to want to fight. As much as I want to fight this disease for him, I CAN'T! But I will be here for him, I will love him show him there is much to fight for. You can't make your husband fight but you can give him something to fight for. I've told my husband I won't ask him if he wants something to eat anymore, he'll have to tell me if he wants something. We are still working on different appetite stimulants hoping to find the ONE! I will be praying for you and your husband.