35 yr. old husband diagnosed with stomach cancer 2/2009.
Comments
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I comment that trying to eat
I comment that trying to eat again in my opinion is the hardest part of recovery. Because it is approached with so much optimism and is anything but pleasant. As your dietician/medical staff should have suggested stay away with anything that is remotely sugary. This includes fruit juices and popsicles for awhile. I had a tiny amount of grape juice on my first day of eating and had dumping syndrome (which I'm sure you're familiar with now) for 18 hrs straight.
Stay away from gassy vegetables like Brocolli or cabbage. As they'll cause discomfort. I was 31 when I was diagnosed back in July of 07, but even after all my treatments I find eggs to be the best thing for me to this day. I like mine over medium or scrambled. I eat one or two every morning. They are a protein which takes more time to digest, but they are light so they don't sit heavily in the digestive system either. It is what works best for me to start my day.
I became lactose intolerant after my surgery as well. Though it took some time for me to develop that aversion. It wasn't until I started eating that I had the problem. The formula they had me on was dairy in nature so it was an odd twist/change to my lifestyle.
Sadly it is a great big LONG experiment to find out what can be tolerated and what not. And if something causes problems now doesn't mean it will cause problems a few months down the road.
I hope you husband keeps progressing in his recovery. And it is wonderful that you support him. The best thing is to know that we have support going through recovery and a spouse or loved one that can help us through that gives us reason to go on.
As a side note to you as a caregiver, you husband may at times be harsh or irritable with you which I would not expect to be voluntary. Between the chemo, steriods and other medications they pump into us I know my time during chemo I was unpleasant to be around and EXTREMELY irritable. The steriod I took for nausea made me hostile, and the fact I had problems sleeping compounded the fact. Made even worse by Ativan to help with nausea which is also an anti-anxiety drug. So my system was all over the place.
Another thing I can suggest is having to eat 7 to 8 times a day (every 2 hrs or less) variety is good,but we may not have a particular taste for anything. I know my wife feels bad not knowing what to cook for me,but I don't know what I want most of the time either. Eating is a chore, not an enjoyable event anymore.
Anyhow, I've rambled enough I wish you and your husband best of luck. The people here are very supportive and wish anyone striving to work through this the best. Things may not always look bright, but we can always keep moving forward.0 -
Same boat
My husband who is 38 yrs old was diagnosed in Jan 2009. He has been on chemo since then. We meet with the surgical oncologist Friday to set a date for surgery. We were told he would have to have a full gastrectomy. I would guess John Hopkins should have a wealth of resources for you. The oncology dept should have a dietician to help you plan his meals. From my reading it seems the body goes into somewhat of a shock once the stomach is gone. If you scroll thru some of the postings on this board you will see that people have had various issues after surgery from bloating, cramps, pain, diarhea, etc. But if you keep reading you will see that it does seem to get better. As the other poster said, a lot of it is trial and error. You will have to try different things/foods until you find something that works.0 -
FULL GASTRECTOMYTomissimo said:I comment that trying to eat
I comment that trying to eat again in my opinion is the hardest part of recovery. Because it is approached with so much optimism and is anything but pleasant. As your dietician/medical staff should have suggested stay away with anything that is remotely sugary. This includes fruit juices and popsicles for awhile. I had a tiny amount of grape juice on my first day of eating and had dumping syndrome (which I'm sure you're familiar with now) for 18 hrs straight.
Stay away from gassy vegetables like Brocolli or cabbage. As they'll cause discomfort. I was 31 when I was diagnosed back in July of 07, but even after all my treatments I find eggs to be the best thing for me to this day. I like mine over medium or scrambled. I eat one or two every morning. They are a protein which takes more time to digest, but they are light so they don't sit heavily in the digestive system either. It is what works best for me to start my day.
I became lactose intolerant after my surgery as well. Though it took some time for me to develop that aversion. It wasn't until I started eating that I had the problem. The formula they had me on was dairy in nature so it was an odd twist/change to my lifestyle.
Sadly it is a great big LONG experiment to find out what can be tolerated and what not. And if something causes problems now doesn't mean it will cause problems a few months down the road.
I hope you husband keeps progressing in his recovery. And it is wonderful that you support him. The best thing is to know that we have support going through recovery and a spouse or loved one that can help us through that gives us reason to go on.
As a side note to you as a caregiver, you husband may at times be harsh or irritable with you which I would not expect to be voluntary. Between the chemo, steriods and other medications they pump into us I know my time during chemo I was unpleasant to be around and EXTREMELY irritable. The steriod I took for nausea made me hostile, and the fact I had problems sleeping compounded the fact. Made even worse by Ativan to help with nausea which is also an anti-anxiety drug. So my system was all over the place.
Another thing I can suggest is having to eat 7 to 8 times a day (every 2 hrs or less) variety is good,but we may not have a particular taste for anything. I know my wife feels bad not knowing what to cook for me,but I don't know what I want most of the time either. Eating is a chore, not an enjoyable event anymore.
Anyhow, I've rambled enough I wish you and your husband best of luck. The people here are very supportive and wish anyone striving to work through this the best. Things may not always look bright, but we can always keep moving forward.
I started to read your reply, however....had to stop because my husband decided to have one of my 4 yr. olds "Incredible Hulk" popsicles and had DUMPING SYNDROME!! I've just decided that sweets are not allowed in this home. This is not the first time. You are so right about the sugar.
His GI Specialist called in a prescription to help with gas. Would you happen to know anything about this pill and painful bowel movements?
We keep hearing eggs are good. This is the 2nd time we hear of it today. The nurse @ the oncology office suggest scramble eggs with a very small noodle. (sorry, i forgot the name of the noodle) lol. We have to try it. We think he's lactose intolerance and was told to buy an over the counter drug called lactoce 3000. Haven't been able to find it.
By the way, we were @ the oncologist today because he was dehydrated. They pumped him with fluids and feels a lot better. He will return tomorrow for more fluids. You mentioned Ativan. My husband takes 2 pills every night. It relaxes him and sleeps all night. Did it affect you?
It's so hard when you have a full gastrectomy. Prior to chemo, your trying to get adjusted to this new way of "eating" but then comes chemo and makes it so much harder to adjust!
Thanks so much for the "caregiver" advise. I find myself taking it personal at times when he doesn't like what I worked so hard to make and hope it satisfys him, but when he puts a face of discuss I sometimes can't help but to take it personal. But I now know I can't do that anymore. Your words were very encouraging!!!0 -
SAME BOATTonia11 said:Same boat
My husband who is 38 yrs old was diagnosed in Jan 2009. He has been on chemo since then. We meet with the surgical oncologist Friday to set a date for surgery. We were told he would have to have a full gastrectomy. I would guess John Hopkins should have a wealth of resources for you. The oncology dept should have a dietician to help you plan his meals. From my reading it seems the body goes into somewhat of a shock once the stomach is gone. If you scroll thru some of the postings on this board you will see that people have had various issues after surgery from bloating, cramps, pain, diarhea, etc. But if you keep reading you will see that it does seem to get better. As the other poster said, a lot of it is trial and error. You will have to try different things/foods until you find something that works.
Sorry to hear about your hubby! Sounds like he's having chemo prior to surgery. John Hopkins was great and a Dietician came in and sat with us well over an hour. However, it's a "hit or miss" kind of thing. They tell you to eat healthy, but when you have a full gastrectomy, you don't know what this new digestive system is going to want or reject. Yes, you read right, your system is in a state of shock after surgery. We learn that during the surgery itself, they feel or massage the entire intestines searching for any tumors etc. The intestines are protected or "sealed" with some type of thin membrane that keeps them together. Once they go in, that "seal" has been broken. That is a shocker!!! They then put you back together again and the adjusting begins. Your husband will be very soar, but he has to understand why. Let him know, that everything inside is simply putting itself back in place and it takes some time for the soreness to go away. My husband recovered from the "soreness" and was more mobile about 4 wks from surgery. He must be physically and emotionally ready for this. You being the caregiver, ,ust hold him up and always look at him with POSITIVE EYES!!!! He's counting on you!!! My prayers are with you and your family!! Keep strong!!!0 -
I did not take any pills foridyllic2004 said:FULL GASTRECTOMY
I started to read your reply, however....had to stop because my husband decided to have one of my 4 yr. olds "Incredible Hulk" popsicles and had DUMPING SYNDROME!! I've just decided that sweets are not allowed in this home. This is not the first time. You are so right about the sugar.
His GI Specialist called in a prescription to help with gas. Would you happen to know anything about this pill and painful bowel movements?
We keep hearing eggs are good. This is the 2nd time we hear of it today. The nurse @ the oncology office suggest scramble eggs with a very small noodle. (sorry, i forgot the name of the noodle) lol. We have to try it. We think he's lactose intolerance and was told to buy an over the counter drug called lactoce 3000. Haven't been able to find it.
By the way, we were @ the oncologist today because he was dehydrated. They pumped him with fluids and feels a lot better. He will return tomorrow for more fluids. You mentioned Ativan. My husband takes 2 pills every night. It relaxes him and sleeps all night. Did it affect you?
It's so hard when you have a full gastrectomy. Prior to chemo, your trying to get adjusted to this new way of "eating" but then comes chemo and makes it so much harder to adjust!
Thanks so much for the "caregiver" advise. I find myself taking it personal at times when he doesn't like what I worked so hard to make and hope it satisfys him, but when he puts a face of discuss I sometimes can't help but to take it personal. But I now know I can't do that anymore. Your words were very encouraging!!!
I did not take any pills for gas related bloating or discomfort, so I am afraid I can't offer any input on that.
Eggs work based upon experience obviously, but when it was explained to me how the digestive system work, Proteins are a good food to eat because they take a while for the system to absorb. So they travel through the system slower then other foods. Eggs work good because they are not as tough nor need to be chewed as much as traditional meats, btw Turkey is hard for me to eat due to its dryness and Beef/Turkey were listed to me as meats to avoid (ground is ok supposedly). Side note to that I eat steak and other red meats fine, but turkey I still shy away from.
I had my first week of chemo the about 2 days after I started eating. So during that period you are supposedly weaning off the J-Tube (what I had) as you start to increase your eating. However, I was so irritated and things were bothering me so much I pretty much stopped both my formula intake and food intake for that week. I don't advise that for your husband, but I was tired of feeling miserable at that point.
I needed fluids a few times after the surgery as well, so that is not abnormal in your husband's case. Or at least not alone anyhow. Some other experiences I had was with just my method of eating again.
Drinking for example, at first I could only 'chug' things very quickly in order to get a good amount of fluids down. Which I learned was not the way to go, because often times it was drinking faster then it was going through the pouch they created causing choking. I find now that I pretty much have to sip everything and look with envy at my wife as she downs a very large glass of water in about 10 seconds.
Another thing the dietician might have mentioned that seems to help me is to stick with warm foods/liquids. I have a much easier time drinking Tea's or coffee or similar warm items. Even refrigerated foods/drinks can cause me great discomfort to this day. Of course during the weaning period you should shy away from caffeine too, as it supposedly causes heartburn.
I drank herbal teas and some nurses said it was ok, and others said I shouldn't drink it. Since it was the only thing I enjoyed and didn't make me sick I drank it. Hence my advice is your husband should go with what his body feels works for him.
I don't remember the exact effects of the Ativan. Just why I was taking it. The good/sad thing for your husband is that in retrospect much of this part of his life will be forgotten. I still remember the surgery and recovery time frames. But I unfortunately do not remember my daughter's first birthday at all. Or my wife's grandmother's funeral that happened 3 months after surgery.
Hope things get better for your husband and I will always try to answer any questions I can and I always wish you and anyone having to deal with this or any cancer the best.0 -
If you don't mind me asking, how much did you husband weigh before all of this? My husband was about 185lbs before his diagnosis. Now he's at 150lbs. I know he's going to lose even more after surgery. And I keep trying to prepare him for that. He's been so blessed so far because he handled the chemo pretty good and is feeling better now than he was before chemo. I think that's going to change once he has his surgery.idyllic2004 said:SAME BOAT
Sorry to hear about your hubby! Sounds like he's having chemo prior to surgery. John Hopkins was great and a Dietician came in and sat with us well over an hour. However, it's a "hit or miss" kind of thing. They tell you to eat healthy, but when you have a full gastrectomy, you don't know what this new digestive system is going to want or reject. Yes, you read right, your system is in a state of shock after surgery. We learn that during the surgery itself, they feel or massage the entire intestines searching for any tumors etc. The intestines are protected or "sealed" with some type of thin membrane that keeps them together. Once they go in, that "seal" has been broken. That is a shocker!!! They then put you back together again and the adjusting begins. Your husband will be very soar, but he has to understand why. Let him know, that everything inside is simply putting itself back in place and it takes some time for the soreness to go away. My husband recovered from the "soreness" and was more mobile about 4 wks from surgery. He must be physically and emotionally ready for this. You being the caregiver, ,ust hold him up and always look at him with POSITIVE EYES!!!! He's counting on you!!! My prayers are with you and your family!! Keep strong!!!0 -
WEIGHT LOSSTonia11 said:If you don't mind me asking, how much did you husband weigh before all of this? My husband was about 185lbs before his diagnosis. Now he's at 150lbs. I know he's going to lose even more after surgery. And I keep trying to prepare him for that. He's been so blessed so far because he handled the chemo pretty good and is feeling better now than he was before chemo. I think that's going to change once he has his surgery.
IN JAN. 2009, HE WEIGHT IN @ 222 LBS. JUST YESTERDAY HE WEIGHED IN @ 158 LBS. BUT THIS IS ALL NORMAL. WEIGHT LOSS IS TO BE EXPECTED. VERY HAPPY TO HEAR CHEMO WENT GOOD FOR HIM. WAS THERE A DATE SCHEDULED FOR SURGERY? HOPE HE CONTINUES TO STAY STRONG!!! FEEL FREE TO KEEP THE QUESTIONS COMING. I'M SURE AFTER SURGERY, YOU WILL HAVE TONS ON THEM. ALWAYS MORE THAN HAPPY TO HELP!!!0 -
No dateidyllic2004 said:WEIGHT LOSS
IN JAN. 2009, HE WEIGHT IN @ 222 LBS. JUST YESTERDAY HE WEIGHED IN @ 158 LBS. BUT THIS IS ALL NORMAL. WEIGHT LOSS IS TO BE EXPECTED. VERY HAPPY TO HEAR CHEMO WENT GOOD FOR HIM. WAS THERE A DATE SCHEDULED FOR SURGERY? HOPE HE CONTINUES TO STAY STRONG!!! FEEL FREE TO KEEP THE QUESTIONS COMING. I'M SURE AFTER SURGERY, YOU WILL HAVE TONS ON THEM. ALWAYS MORE THAN HAPPY TO HELP!!!
No date yet for surgery. My husband didn't have a CT on Friday. There was a mixup and somehow no one read his chart to see that he is allergic to contrast dye. So now he has a steroid and his CT is scheduled for Tuesday.0 -
SURGERY DATETonia11 said:No date
No date yet for surgery. My husband didn't have a CT on Friday. There was a mixup and somehow no one read his chart to see that he is allergic to contrast dye. So now he has a steroid and his CT is scheduled for Tuesday.
IF IT'S OK WITH YOU, PLEASE KEEP ME POSTED ON THE SURGERY DATE. WOULD BE MORE THAN HAPPY TO HELP YOU OUT WITH ANY QUESTIONS YOU MAY HAVE. ESPECIALLY SUPPORT. THAT'S WHAT YOU WILL NEED. I CAME ACROSS A YOUNG COUPLE IN THEIR 30'S A FEW TOWNS AWAY FROM MINE WITH THE SAME SITUATION. HER HUSBAND HAD A FULL GASTRECTOMY IN JANUARY OF THIS YR. HE'S 34 YRS. OLD. HER AND I TEXT MESSAGE EVERYDAY AND ASK LOTS OF QUESTIONS. IT'S A GREAT HELP TO BE ABLE TO TALK TO SOMEONE THAT'S GOING THROUGH THE SAME AS YOU. KEEP IN TOUCH AND REMEMBER,,,,POSITIVE EYES WHEN YOU LOOK AT HIM!0 -
Sure thing. I will definitely have questions.idyllic2004 said:SURGERY DATE
IF IT'S OK WITH YOU, PLEASE KEEP ME POSTED ON THE SURGERY DATE. WOULD BE MORE THAN HAPPY TO HELP YOU OUT WITH ANY QUESTIONS YOU MAY HAVE. ESPECIALLY SUPPORT. THAT'S WHAT YOU WILL NEED. I CAME ACROSS A YOUNG COUPLE IN THEIR 30'S A FEW TOWNS AWAY FROM MINE WITH THE SAME SITUATION. HER HUSBAND HAD A FULL GASTRECTOMY IN JANUARY OF THIS YR. HE'S 34 YRS. OLD. HER AND I TEXT MESSAGE EVERYDAY AND ASK LOTS OF QUESTIONS. IT'S A GREAT HELP TO BE ABLE TO TALK TO SOMEONE THAT'S GOING THROUGH THE SAME AS YOU. KEEP IN TOUCH AND REMEMBER,,,,POSITIVE EYES WHEN YOU LOOK AT HIM!0 -
Your emailidyllic2004 said:SURGERY DATE
IF IT'S OK WITH YOU, PLEASE KEEP ME POSTED ON THE SURGERY DATE. WOULD BE MORE THAN HAPPY TO HELP YOU OUT WITH ANY QUESTIONS YOU MAY HAVE. ESPECIALLY SUPPORT. THAT'S WHAT YOU WILL NEED. I CAME ACROSS A YOUNG COUPLE IN THEIR 30'S A FEW TOWNS AWAY FROM MINE WITH THE SAME SITUATION. HER HUSBAND HAD A FULL GASTRECTOMY IN JANUARY OF THIS YR. HE'S 34 YRS. OLD. HER AND I TEXT MESSAGE EVERYDAY AND ASK LOTS OF QUESTIONS. IT'S A GREAT HELP TO BE ABLE TO TALK TO SOMEONE THAT'S GOING THROUGH THE SAME AS YOU. KEEP IN TOUCH AND REMEMBER,,,,POSITIVE EYES WHEN YOU LOOK AT HIM!
Idyllic2004, my email address is tjnelson@bellsouth.net. Shoot me a line when you get chance. I'd like to take you up on the Q&A session. :-)))0 -
Tonia11 said:
Your email
Idyllic2004, my email address is tjnelson@bellsouth.net. Shoot me a line when you get chance. I'd like to take you up on the Q&A session. :-)))
HAVEN'T BEEN ON FOR A FEW DAYS. HUBBYS BEEN ENERGIZED AND HE'S BEEN OUT AND ABOUT. WE ARE SELF EMPLOYED AND HE'S BEEN VERY FORTUNATE AND WAS ABLE TO WORK ALL WEEK. NOT PHYSICAL WORK, BUT QUOTING. HELPS TO TAKE HIS MIND OFF HIS SITUTATION. I WILL SHOOT YOU AN EMAIL TONIGHT.0 -
foods to avoid
chicken is not good even purrated, cook meats in crockpot. makes meats juicey and goes down easier. does he have a feeding tube in the stomach? if so make sure and tell the dr if he has trouble with nausea and doesnt gain weight. there is also iv infusion tpn feedings also until he can handle solids. my husband was able to do beef and porks better then any. compazine helps with nausea. scrambled eggs or even fried eggs where good . he also did alot of soups.
basicly let him eat what he wants in small portion , like someone that had gastric bypass surgery. he just needs to eat smaller meals more often. you will just have to use trial and erros with different foods. zofran is good also for the nausea . greasey foods didnt do well with him.
hope this helps0 -
FOOD TO AVOIDSKYLAIK said:foods to avoid
chicken is not good even purrated, cook meats in crockpot. makes meats juicey and goes down easier. does he have a feeding tube in the stomach? if so make sure and tell the dr if he has trouble with nausea and doesnt gain weight. there is also iv infusion tpn feedings also until he can handle solids. my husband was able to do beef and porks better then any. compazine helps with nausea. scrambled eggs or even fried eggs where good . he also did alot of soups.
basicly let him eat what he wants in small portion , like someone that had gastric bypass surgery. he just needs to eat smaller meals more often. you will just have to use trial and erros with different foods. zofran is good also for the nausea . greasey foods didnt do well with him.
hope this helps
SORRY FOR REPLYING SO LATE. HAVEN'T BEEN ON IN A WHILE. I WILL DEFINATELTY RUN THIS BY MY HUBBY. NO, HE DOES NOT HAVE A FEEDING TUBE. BEEF HAS BEEN PRETTY GOOD TO HIM. HE HASNT HAD PORK. I THINK HE'S AFRAID TO TRY IT. I AGREE W/THE TRIAL AND ERROR. THE DR. JUST SUDGESTED THE ZOFRAN THIS WEEK. WE'LL BE TRYING IT. LET YOU KNOW HOW IT GOES. THIS IS IS WEEK OFF THE CHEMO. SO FAR SO GOOD. OTHER THAN THE LOOSING WEIGHT. BUT, THATS PART OF THE PACKAGE. THANKS FOR YOUR HELPFUL HINTS!!!!0 -
GATORAIDEstomach said:I know its hard to get enough liquids down.
My husband find that Gateraide and Ginger Ale go down well. Plan water just sits there. Gateraide helps with dehidration and anything ginger helps with neusia.
HE'S TRIED THE GATORAIDE BUT NOT THE GINGER ALE. DID YOUR HUSBAND HAVE A FULL GASTRECTOMY? WE WERE TOLD TO STAY AWAY FROM GINGER ALE. THANKS FOR THE GINGER TIP. HOPE THINGS ARE GOOD WITH YOUR HUSBAND.0
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