41yr old husband just home from surgery, need help

Post surgery
Hello Ronnnie69, When I read your post I knew exactly where you were at this point in time. I think our first 2 weeks home were the hardest. I didn't know we could have home health care come in. Do you have any help? It is very overwhelming if you are trying to do it all yourself.

As for comfort, he slept in a recliner for about a month, and I have heard many other mention doing the same.We now have an adjustable bed and love having it. Your insurnace should cover a hospital bed due to his need to sleep elevated. You just need to get a prescription from your dr for one. At the touch of a button you can change position and get more comfortable.

We didn't have any eating issues as his dr's philosophy was no food, or drink for 30 days so we just had the feeding tube to deal with. Sleeping meds have the opposite effect on my husband, could any of your husband's meds be causing him not to sleep? I would certainly talk to his dr to see what is going on so he can rest and heal. Linda

tips!
My husband had some luck keeping carnation instant breakfast mix down that first two weeks out of the hospital. I made it with whey protein, sugar free ice cream and frozen fruit and milk. 8 oz was about 700 calories. He is also 6’2” and in his 40’s with T1N0M0. We did rent a hospital bed for several months but he now sleeps with several pillows, which he prefers over the styrofome wedge we bought. He stayed on pain meds for about a month and also took, and still takes, Finagrin for nausea when needed. We have also had to have dilations to open up the connection between his stomach and throat. The scar tends to shrink and makes swallowing difficult. They go in and stretch that with a balloon type thing. Hope this helps.

Hi,Welcome to our site.
I
Hi,Welcome to our site.
I had a very difficult time with food for a long time. I had no appetite and everything tasted bad. Drink protein drinks such as Ensure, or boost. I would sip a little at a time. Eat several meals a day. I would manage a couple of tablespoons at a time. Mashed potatoes,green peas, and other vegetables. Oatmeal is also good. Experiment with different foods . The carnation shake with the different things in it is exellent.
It took me a long time before my stomach felt right after eating. I would gag a lot but I've never been able to throw up since surgery.

I didn't have trouble sleeping, so I can't comment on that. He will have to sleep elevated from now on to keep down acid reflux.This is a permanent condition. I sleep on a wedge with a pillow on top. This works for me.

I'm sure you will be hearing from others about the chemo. In most of our experience chemo is needed after surgery for stage 1. We've known too many that has had it come back as stage iv when they did not have chemo. I'll let some of our more knowledgeble talk to you about this.

I had some depression. After going through a major surgery, it would be hard not to. If we were active, it's hard to be patient for healing. As soon as I could, I started to a gym and did strength training. This helped me physically and mentally.

I had surgery three years ago for stage 111, and today I can do anything I did before. There are a lot of life changing things to learn to live with, but we do adjust. I can't eat the big meals I did before, but food is good and I can enjoy eating more often.

Come here as often as you want. There will probably be a lot of questions, that someone will be able to help you with.

I will add you and your husband to my prayer list,
Sandra

Ronnie69 said:

follow up
hello birdiqueen,

My husband had problems getting his food down without drinking quite a bit of water. First he had to wash down bites of chicken, sandwiches etc. then he even needed water to wash down soft eggs. So after 6 months of this getting worse and me making comments I regret like "maybe you should chew well instead of inhaling your food" I made him see his general practitioner. He referred him and he had a endoscopy with biopsy Feb. 17th. We were called in and told a day later that there was a tumor at the bottom of his esohagus, just above the stomach valve which was adenocarcinoma and he also had Barretts esophagus up higher etc. The doctor was just as surprised as we were---only 41 and symtoms not so common to EC. Never smoked, doesn't drink, didn't have any reflux he was aware of etc.

We sought advice of some different doctors, had a cat scan, then a pet scan and 2 days later an EUS for staging. We started the trek daily to different Boston hospitals of opinions.

Phew....and here I am talking to you on CSN, I am lucky to have you and all who help people like me, I only hope I can do the same for someone in the future.

74 lbs, wow. did your docs prepare you and your husband for the amount of weight that would be lost? They told mine maybe 25lbs, he has done this already and we just got home. did your husband sip the gatorade right away? or did it take time to be able to do this? does he exercise? My husband is an ex athlete and was very active(ran 3 miles a day on treadmill and lifted weights to keep a strong core) before this procedure. Sorry for all the questions--it's just that your husbands age and stage of EC are similar to my husbands. He is going through his dark days it seems now and it is only day 11 post surgery, I'm sure there are many to come. A few people mentioned him taking something for anxiety--he absolutely refuses and the suggestion makes him angry, did yours? Did your doctors use the words "cancer free" after his surgery, being that it didn't go anywhere outside the localized tumor like ours? Do you know any prognosis regarding stage one, no chemo/radiaton, no cancer found elsewhere etc. My husband has never once been online to research this or EC for that matter. Sorry, just venting and getting tired. God bless you both and good night.

Hope your husband is having a better day
Hello Ronnie69,
Don’t regret your comments about chewing, the important thing is he did get to a doctor that got him scoped and the cancer was found early. Your general practitioner did the right thing. You and your husband also did the right thing by having the surgery. Regardless of which method of surgery, it had to be removed.
In answer to some of your questions, yes our docs did prepare us for the weight loss but my husband needed to lose the weight. He is still 20 lbs heaver than when I meet him. He too had the adenocarcinoma and Barrett’s due to reflux he had had since high school. Yes, my husband was eating pretty well in the hospital and when we got home he ate fine for several days than his anastomosis (connection in the neck) started to shrink and made swallowing more difficult for him. He had one week that getting him to take in 500 calories a day was difficult. Then we found out about the stretching of the anastomosis, which helped quite a bit. He also says the lotion phenergan dx helped a great deal. He would rub that on his wrist about an hour before eating and it would help with nausea so he could keep food down.
I think I’ve gotten off on a tangent. I will try to answer your other questions too. No, my husband did not exercise and he still does very little. Other than the “new plumbing” and getting tiered in the afternoon, he feels about the same. He did take something for anxiety twice but didn’t feel it helped. I think it did help a little but he did not want to take that type of medication. Again his anxiety was caused by the Reglan, once we changed that medication he was fine. Yes, the doctor used the words “cancer free” and “cured” after his surgery. I have since done some research on “reoccurrence after curative surgery” not particularly a positive search. But, our husbands are younger than the average age of someone with EC and it was found at an earlier stage than most also. I have read survival rates as high as 70% for stage one with surgery being the only treatment. That was from a site that did not give any data on where they were getting the stats from. I think for the US the most reliable stats are found on the National Cancer Institute web site. Granted the data is a bit dated. They are scheduled to release 2008 data on April 15th. You can break it down by state on their web site.
Hope this helps! Feel free to ask any questions, it is a long process but things do get better.