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

chrisk06's picture
chrisk06
Posts: 114
Joined: Nov 2009

My husband was diagnosed in February 2009 with stage 3 EC (T3N1M0). He has gone thru radiation and chemo and had surgery in May. He weighed 217 pinds in February and now weighs 130 pounds. According to a CT, they say the cancer is gone. But, my husband is not getting better. He is still losing weight and has no apptetite. They say he is depressed, but the depression meds aren't working. His stomach cramps all the time. He is so weak due to not eating. I feel like I am fighting a losing battle. Will this ever get better? When? His father and brother both died of this cnacer, and I am afraid I am going to lose him too.

mumphy's picture
mumphy
Posts: 486
Joined: Jun 2009

Hi,
Maybe you should discuss with the Dr. about giving him a feeding tube just to help him gain
weight and the slowly ween him off along with eating by mouth.

It's worth a try!

Kath

chrisk06's picture
chrisk06
Posts: 114
Joined: Nov 2009

He had a feeding tube when he got out of the hospital in April. It was removed in July. At that time he seemed to be doing ok. Since August he has just done downhill. In August he weighed about 150, now we are at 130. It is just very frustrating and I don't know what to do. They say he may be depressed, but I think it is more than that. Maybe I am reading too much into things. I just don't know how to help him

TimKD
Posts: 4
Joined: Nov 2009

Hello, I am so sorry that your husband is not feeling better. Do they have him on a feeding tube? I had stage 3 and went through the radiation, chemo, and surgery too. I went from 220lbs. down to 140lbs but was on a feeding tube. I got stronger after I started eating normally again. As simple as it sounds, your husband needs to get positive. I was told a positive attitude makes all the difference in getting better. Is there anything that will cheer him up? A visit from an old lost friend, anything like this?

chrisk06's picture
chrisk06
Posts: 114
Joined: Nov 2009

The feeding tube came out in July. I've tried everything to get him to change his attitude. I have had his friends talk to him and visit. I don't know how to help him. I tell him he needs to think more positive, he just looks at me and says...you have no idea, I am the one with the cancer. Well they say the cancer is gone and he knows this. I just don't get it. They have him on an anitdepressent that doesn't seem to work. How long did it take you to get better? To start gaining weight? He had surgery in May

Betty in Vegas's picture
Betty in Vegas
Posts: 311
Joined: Jul 2009

i don't know where he got his care, but I know our facility has counseling available. If you don't have it there, get it elsewhere.

It sounds psychological to me...and I wouldn't be surprised! He has watched EC take two people he cares about. He assumes then that it is a foregone conclusion that he is next. That is a deep enough issue to get some counseling for.

It is a tough journey, and sometimes, you need help with it!

chrisk06's picture
chrisk06
Posts: 114
Joined: Nov 2009

Betty,

I wish it were as easy as that. My husband wouldn't go to counseling if you held a gun to his head. And right now he might as well be. I am watching him get weaker everyday. I just don't know how to help him.

Chris

TimKD
Posts: 4
Joined: Nov 2009

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?

chrisk06's picture
chrisk06
Posts: 114
Joined: Nov 2009

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

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

Don't feel hopeless yet, even though your husband is telling you that you are not the one with CANCER, well i have to say maybe not officially with CANCER, but you do own a part of it, you was there for surgery, you helped him bath, you made sure he was clean, you took care of him, so you are part of Cancer, I was with my husband from the time he was diagnosed through surgery, home, and i still care for him periodocally. My husband had surgery in July and he also has lost weight of 80 lbs which is fine now down to 224. Why won't he eat? is the food getting stuck? or he just doesn't want to eat? My husband goes through that also but I always have pudding jello, soft things for him to eat, and whatever he feels like he can eat. You don't say how old your husband is.

I have to say at one time I was ready to give up, but this site kept me going, I hope this has helped please let me know if you need anything, as my husband had the open full esophojectomy with feeding tube and all.

Thanks
Lori aka MOE

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

Don't feel hopeless yet, even though your husband is telling you that you are not the one with CANCER, well i have to say maybe not officially with CANCER, but you do own a part of it, you was there for surgery, you helped him bath, you made sure he was clean, you took care of him, so you are part of Cancer, I was with my husband from the time he was diagnosed through surgery, home, and i still care for him periodocally. My husband had surgery in July and he also has lost weight of 80 lbs which is fine now down to 224. Why won't he eat? is the food getting stuck? or he just doesn't want to eat? My husband goes through that also but I always have pudding jello, soft things for him to eat, and whatever he feels like he can eat. You don't say how old your husband is.

I have to say at one time I was ready to give up, but this site kept me going, I hope this has helped please let me know if you need anything, as my husband had the open full esophojectomy with feeding tube and all.

Thanks
Lori aka MOE

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

Don't feel hopeless yet, even though your husband is telling you that you are not the one with CANCER, well i have to say maybe not officially with CANCER, but you do own a part of it, you was there for surgery, you helped him bath, you made sure he was clean, you took care of him, so you are part of Cancer, I was with my husband from the time he was diagnosed through surgery, home, and i still care for him periodocally. My husband had surgery in July and he also has lost weight of 80 lbs which is fine now down to 224. Why won't he eat? is the food getting stuck? or he just doesn't want to eat? My husband goes through that also but I always have pudding jello, soft things for him to eat, and whatever he feels like he can eat. You don't say how old your husband is.

I have to say at one time I was ready to give up, but this site kept me going, I hope this has helped please let me know if you need anything, as my husband had the open full esophojectomy with feeding tube and all.

Thanks
Lori aka MOE

chrisk06's picture
chrisk06
Posts: 114
Joined: Nov 2009

MOE, Thnak you for responding. He is 57 years old. The food isn't getting stuck, he just has no appetite. Now the Dr. wants to do a scope, but our insurance through his work ended in October. I just don't see any inmprovements since his suregery. I hope this response doesn't seem to be all over the place, but that is kinda how my mind is working lately. I don't remember what the other post said or who said it, but maybe it is psychological. I just don't know. All I know is that everyday I watch my husband waste away and it is killing me inside. I keep things for him to eat that he likes, but he only picks at them. You've heard "eats like a bird" well that is him. If he eats a peice of toast in the morning and a few bites of soup in the afternoon i am lucky. Sometimes after he eats, he spits out this foamy stuff. I just don't know how to help him anymore. I feel like he fights me alot. He had just abut everything that could go wrong go wrong....port caused blood clot in neck, 1st round of chemo (cisplatin & 5FU)put him in the hospital for 3 days. During surgery his lung wasn't strong enough to do the work for both so they would inflate for 3 min deflate for 2 to let the surgeon work. They did this for 2 hours. He was in ICU for 7 days...it's just been one thing after another. He hates his doctors, he thinks they lied to him just to get his insurance money. I think the Dr. just gave him best case scenerio and never told him about all of the after effects. His Dr. is the best in our area, so I doubt the Dr. lied. I just don't know what to do

JaneE2366's picture
JaneE2366
Posts: 332
Joined: Jul 2009

You must convince him to FIGHT....if not for himself...than for you!!! My husband is also 57 and believe me, 9 months ago, I would have bet you that he would never take an anti-depressant or go to a support group. Well he does both now.....I pushed and pushed...
When he came home from his first round of chemo, he too was eating like a bird.....but that did gradually improve as he felt better.
I know how difficult it is.....being a caretaker stinks....I wish every day it was me instead of him that had gotten ill. You never know if you are doing the right thing.
Hang in there....I pray it will get better and stay strong.
Jane

Betty in Vegas's picture
Betty in Vegas
Posts: 311
Joined: Jul 2009

But pray. At this point, your husband has to WANT to get better. He isn't listening to you, so you have to go to someone over his head. Call on God. The Lord hears the cries of wives, and he knows your heart. He can change things when nothing else can.

May I also suggest that if he got surgery, that unless something was found in a pet scan, there really is nothing there to be making him feel this way so far out. If he needs to have a scope done, then go down, get him on social security (he gets on automatically for EC) and then apply for medicare for him. It will cover his treatment from there.

After surgery, a person has to want to get better. They need to have the will to move forward and believe that they can heal.

Therefore, I think prayer...and hide yourself in Psalm 55. I love that Psalm. It says in there that the Lord holds all our tears in his bottle...he knows our concerns and our sadness...and he holds us through it all.

I'll be praying for you,
Betty

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

Everyone has told me Jeff will get his social security we applied just last week, how do you know this? Please advise me? Anything how do i search for this info. I need your help.

Thanks
Lori

sallen2001
Posts: 3
Joined: Jul 2009

I have been visiting this site since June '09. Husband diagnosed in June 09. We applied for is SS disability , took paperwork I had to SS office and she said EC was pushed thru quickly, was approved in 2 weeks, so keep watching the mail. There is a 6 month wait from time diagnosed, so we are to received 1st check in December. My husband is 61, so no medicare, still on medical insurance from his job because he had long term disability, but that will end in Dec. and then will have to look at Cobra. But I did find on the web someting about Federal government helping with Cobra premiums. I still have to research it more. It was something about aid of 65% of your Cobra premiums. I think you have 60 days to do this in, so you might check that out also.

chrisk06's picture
chrisk06
Posts: 114
Joined: Nov 2009

I applied for my husband a few wekks ago and of now I have heard nothing. I had also read that if the tumor is removed, that Social Security considers the person "cured". I am not sure if the after effects that he is going through now will be the deciding factor. I will keep you posted with our progress

chrisk06's picture
chrisk06
Posts: 114
Joined: Nov 2009

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.

Betty in Vegas's picture
Betty in Vegas
Posts: 311
Joined: Jul 2009

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.

sallen2001
Posts: 3
Joined: Jul 2009

Have he tried Megace Oral? My husband had no appetite, several weeks of not eating, vast weight lost, finally got the doc to do something and he prescribe this. It is an appetite enchancer. Jim finally feels hungry now, so he will eat and has maintain weight for 2 months, even gained a few pounds. After losing 5-8 pounds a week, this was a blessing or what we call another God Thing.

TimKD
Posts: 4
Joined: Nov 2009

Medical Pot would increase his appetite as well.

chrisk06's picture
chrisk06
Posts: 114
Joined: Nov 2009

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

chrisk06's picture
chrisk06
Posts: 114
Joined: Nov 2009

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

JaneE2366's picture
JaneE2366
Posts: 332
Joined: Jul 2009

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's picture
chrisk06
Posts: 114
Joined: Nov 2009

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

chrisk06's picture
chrisk06
Posts: 114
Joined: Nov 2009

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!

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

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
Posts: 4
Joined: Nov 2009

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
Posts: 7
Joined: Nov 2009

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's picture
aunti_m
Posts: 42
Joined: Oct 2009

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.

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