Help for friend struggling after esophagectomy

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Help for friend struggling after esophagectomy

by RacheleC on Tue Dec 17, 2013 02:28 PM

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My good friend was diagnosed in September with stage 3 EC. After chemo/radiation/surgery - he is showing no evidence of cancer. But he's struggling. I am afraid he is becoming depressed. Life after esophagectomy is proving to be a really difficult thing. It has been less than a month since surgery though, and so I know things will get better, but I think it's hard for him to believe that right now. I know he is uncomfortable, has no appetite, can't eat much, is nauseas after eating, cant sleep well...all of the things I am sure are normal for this point in his recovery.

Can all of you who have been there - please offer some advice, ideas, encouragement - that I can pass along to him? He is 66 years old and has so much life left to live - but I am afraid he is becoming discouraged. Thank you for any help you can provide.

       

RE: Help for friend struggling after esophagectomy

by Aoife on Tue Dec 17, 2013 09:09 PM

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He is only just post surgery.  I was just out of intensive care at that stage and i was only 32 when I had the surgery.  He needs to allow himself time.  It will get a lot better, he will be able to eat more with time. 

RE: Help for friend struggling after esophagectomy

by cherrydog on Tue Dec 17, 2013 11:27 PM

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Boy he sure sounds like me, except I am a year older. A month out of surgery I was still sipping juice and "eating" puddings but everytime I tried to eat real food I would get sick and very tired. Seemed as though each "feeding" had to be followed by a nap. I had no appetite either and still don't 4 months now after surgery. The volume of food has increased but I still eat 6 "meals" and still somewhat nauseaus but nothing I can't handle. I have been told that we all react to this surgery different so there is NO set pattern to recovery. We ALL have to feel our way through this and over time we do recover. It has taken more out of me than I first imagined and I am just learning this now as my body and mind heal. I do believe there is a period of depression but I didn't face it until the 3rd month. It is very important to have someone to talk to and also let nature take its course. You will heal but it will be months and months  and you must realise that at our age we will NEVER be what we once were. We have to accept that we are headed for a new and different life and one that we will enjoy. I have been on the treadmill everyday, cutting the lawn and as I feel stronger I will try more and more things again. I have been told that a year out I won't believe how much better we will feel because the effects from chemo and radiation will be gone!!! I can hardly wait and a couple of months from now you will be wanting the same things I do. It is tough and your are passing through the worst part right now but it will get better. Just remember there is NO room being discouraged. If you the least bit of will to live you have it beat. Myself and others like us, will be here for you. All the best

RE: Help for friend struggling after esophagectomy

by SBurgess on Wed Dec 18, 2013 01:46 AM

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I had my surgery in March 2013, (56 years old) for myself as your friend I guess my best advise is to allow him to be sick for a while. Even to this day I still have all the things your friend states. I lost 80+ lbs, nausea, sleeping at an angle etc.

Take Zofran for nausea, Megestrol Acetate for my appetite, still mostly on a liquid diet.

But coming up on 9 months, still a slow road but each day gets better. Your friend has been through alot, to me the surgrey was the easy part..the slow road to recovery..has been the real battle. I had to learn take small steps..

Know that it will get better...

Good Luck..

Steve

 

   

RE: Help for friend struggling after esophagectomy

by steveb50 on Thu Dec 19, 2013 11:29 AM

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My husband is two years out. We were told it would be a very difficult journey, but worth the effort. We kept this in mind during the first few months. He tried to eat regular food right from the start except in very small amounts. He would walk up and down the driveway many times a day. I had to encourage him to eat and exercise. He had no apetite but new he had to eat to survive. Every day our focus was on symptom management. It was very important to get off narcotic pain meds after the first month.They were impeding his recovery.   Although he did use a small dose of ativan to help him sleep, but stopped that in year two.  This blog was very helpful for support and for symptom management. He had to return to work 6 weeks after surgery. We were watching a commercial for potato chips last night and he remembered that after his surgery he wondered if he would ever eat a chip again. He eats everything now except dairy. We attempted to boost his calories after the surgery using very rich shakes and he developed a lactose intolerance. I would not suggest you employ this strategy. We kept a daily food journal to track calories, protein and iron intake. Vit. C helps heal as well. Peanut butter, bananas and eggs with cheese were always on the menu. Also, soups with meat, beans and veggies are helpful to maximize calories and nutrition. He couldn't eat and drink at the same time, so we had a schedule where he ate every 2.5 hours and would drink at the 1.5 hour after eating. The potassium in the banana helps prevent dehydration which also impedes recovery. We always keep in mind that his surgeon changed millions of years of evolution by removing the esophagus, and we are slowly trying to get back to as close to the old normal as possible. My husband had numerous stays at the local hospital after the surgery to combat diarrhea and dehydration. I finally had success controlling diarhhea using a small amount of metamucil with a 1/4 c of water. Well you get the picture, you encounter many problems during recovery, but he has your support to help with the challenges during his recovery. Finally, take a moment everyday to acknowledge some gratitude, it helps.

RE: Help for friend struggling after esophagectomy

by Dlynn1210 on Thu Dec 19, 2013 12:31 PM

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Hi Rachele

I didn't have time to read through all of the posts and usually don't respond to anyone with a diffrent type of cancer as I don't have personal experience with it to give informative answers.  I had tonsil cancer which is classified as a head and neck cancer the same as EC. 

The one thing I want to mention that many people don't think about is the week you have your last chemo treatment - you KNOW that is as bad as the side effects get; however, radiation is an entirely different monster.  I refer to it as the gift that keeps on giving.  You continue to cook for a period of 4-8 weeks AFTER your last radiation treatment with the side effects continuing to get worse by the day.  The good news is that one day it WILL be as bad as it gets and you realize that there is light at the end of the tunnel.  Your friend will not suddenly one day begin to feel better like someone getting over the flu.  His body just took a severe beating and it takes a long while to begin to feel somewhat normal.  Chemo does a tremendous job of killing cancer cells but it is not selective which means it kills out everything in its path - good and bad cells. 

I am six years post treatment and while I have a few minor after effects, I am alive and doing very well.  I appreciate life so much more now than I used to - I actually took life and my health for granted before my diagnosis.  I was 60 years old when I was diagnosed and just celebrated my 67th birthday last week.

Diana       

RE: Help for friend struggling after esophagectomy

by Shereeclint on Thu Dec 19, 2013 05:49 PM

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On Dec 19, 2013 12:31 PM Dlynn1210 wrote:

Hi Rachele

I didn't have time to read through all of the posts and usually don't respond to anyone with a diffrent type of cancer as I don't have personal experience with it to give informative answers.  I had tonsil cancer which is classified as a head and neck cancer the same as EC. 

The one thing I want to mention that many people don't think about is the week you have your last chemo treatment - you KNOW that is as bad as the side effects get; however, radiation is an entirely different monster.  I refer to it as the gift that keeps on giving.  You continue to cook for a period of 4-8 weeks AFTER your last radiation treatment with the side effects continuing to get worse by the day.  The good news is that one day it WILL be as bad as it gets and you realize that there is light at the end of the tunnel.  Your friend will not suddenly one day begin to feel better like someone getting over the flu.  His body just took a severe beating and it takes a long while to begin to feel somewhat normal.  Chemo does a tremendous job of killing cancer cells but it is not selective which means it kills out everything in its path - good and bad cells. 

I am six years post treatment and while I have a few minor after effects, I am alive and doing very well.  I appreciate life so much more now than I used to - I actually took life and my health for granted before my diagnosis.  I was 60 years old when I was diagnosed and just celebrated my 67th birthday last week.

Diana       

Congratulations on your recent birthday

RE: Help for friend struggling after esophagectomy

by Boogie40 on Fri Dec 20, 2013 04:28 AM

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I am 9 weeks past the esophagectomy...I am  73 years old.. Never have I been so afraid of anything in my life as I was when I was diagnosed the 30th of July...I have GOD to THANK for taking me through all of this.. They took a lot out on the 28th of Oct and said surgery was the cure...I understand how this all changes everything ....I hadn't had heartburn & indigestion since my last pregnancy 45 years ago.. I could eat whatever I wanted & when I wanted.. I slept most my life laying flat with no pillow.. all this has changed..Have to sit up & sleep.. I also have night sweats every night.. Hot flashes were only a few when I went through the change 23 years ago....Now every night and Doc said when your brain is asleep so long for surgery and comes back if we've disturbed something like hormones or something the brain can trigger it.....

I am having to learn a lot.. body is weak and takes one day at a time to get up and move about as much as possible..Learning how to eat so different ..I am still on the j-tube , but am cutting back as I eat more..am aiming to be off it soon in the New Year is my goal...My Doctor is great support..but tells me it is up to me.. SO I PRAY A LOT FOR GOD'S HELP...I know HE gives me the strength to do this.. I Pray your Friend will be able to see & know it can get better.. They have meds for the nauseas after eating.. I like to try some plain foods & some fruits or pudding also alternating bites and have not had the nausea after eating.. My Doc also said I could use liquid tums ... & it helps.. I do the mint flavor.. 

I figure GOD is not done with me yet and I have more "LIFE TO LIVE ALSO"!!!

God Bless you for being such a Good friend..God Bless him too and may you Both have a Blessed Christmas & a Happy New Year!!!

Inez

RE: Help for friend struggling after esophagectomy

by Dlynn1210 on Sat Dec 21, 2013 01:11 AM

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On Dec 19, 2013 5:49 PM Shereeclint wrote:

On Dec 19, 2013 12:31 PM Dlynn1210 wrote:

Hi Rachele

I didn't have time to read through all of the posts and usually don't respond to anyone with a diffrent type of cancer as I don't have personal experience with it to give informative answers.  I had tonsil cancer which is classified as a head and neck cancer the same as EC. 

The one thing I want to mention that many people don't think about is the week you have your last chemo treatment - you KNOW that is as bad as the side effects get; however, radiation is an entirely different monster.  I refer to it as the gift that keeps on giving.  You continue to cook for a period of 4-8 weeks AFTER your last radiation treatment with the side effects continuing to get worse by the day.  The good news is that one day it WILL be as bad as it gets and you realize that there is light at the end of the tunnel.  Your friend will not suddenly one day begin to feel better like someone getting over the flu.  His body just took a severe beating and it takes a long while to begin to feel somewhat normal.  Chemo does a tremendous job of killing cancer cells but it is not selective which means it kills out everything in its path - good and bad cells. 

I am six years post treatment and while I have a few minor after effects, I am alive and doing very well.  I appreciate life so much more now than I used to - I actually took life and my health for granted before my diagnosis.  I was 60 years old when I was diagnosed and just celebrated my 67th birthday last week.

Diana       

Congratulations on your recent birthday

Thank you Clint! 

RE: Help for friend struggling after esophagectomy

by Dlynn1210 on Sat Dec 21, 2013 01:14 AM

Quote | Reply

On Dec 20, 2013 4:28 AM Boogie40 wrote:

I am 9 weeks past the esophagectomy...I am  73 years old.. Never have I been so afraid of anything in my life as I was when I was diagnosed the 30th of July...I have GOD to THANK for taking me through all of this.. They took a lot out on the 28th of Oct and said surgery was the cure...I understand how this all changes everything ....I hadn't had heartburn & indigestion since my last pregnancy 45 years ago.. I could eat whatever I wanted & when I wanted.. I slept most my life laying flat with no pillow.. all this has changed..Have to sit up & sleep.. I also have night sweats every night.. Hot flashes were only a few when I went through the change 23 years ago....Now every night and Doc said when your brain is asleep so long for surgery and comes back if we've disturbed something like hormones or something the brain can trigger it.....

I am having to learn a lot.. body is weak and takes one day at a time to get up and move about as much as possible..Learning how to eat so different ..I am still on the j-tube , but am cutting back as I eat more..am aiming to be off it soon in the New Year is my goal...My Doctor is great support..but tells me it is up to me.. SO I PRAY A LOT FOR GOD'S HELP...I know HE gives me the strength to do this.. I Pray your Friend will be able to see & know it can get better.. They have meds for the nauseas after eating.. I like to try some plain foods & some fruits or pudding also alternating bites and have not had the nausea after eating.. My Doc also said I could use liquid tums ... & it helps.. I do the mint flavor.. 

I figure GOD is not done with me yet and I have more "LIFE TO LIVE ALSO"!!!

God Bless you for being such a Good friend..God Bless him too and may you Both have a Blessed Christmas & a Happy New Year!!!

Inez

Inez

I had tonsil cancer and I, like you, know that God isn't done with me yet and I definitely have more life to live.  God has given me extra time here and I'm trying to make the most of that time. 

Diana

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