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30 year survivor
I accidentally came across this esophageal cancer aftercare group and wanted to share a little about my husband’s experience, because I hope it may give someone encouragement. I used Chat GPT to help write this.
My husband had stage 2 esophageal cancer in 1996—over 30 years ago. In the beginning, he experienced many of the same challenges I’m reading about here. He lost a tremendous amount of weight, had to learn to eat differently, and gradually figured out what foods worked best for him. He especially liked soft foods such as oatmeal and learned to eat slowly and carefully.
After treatment, he started walking every day and slowly became stronger. At the time of his surgery, he weighed about 200 pounds. He eventually dropped to 140 pounds, but over time his weight came back up and has been remarkably stable around 160 pounds for many years.
He also learned that some of the changes from surgery are things you simply adapt to. He still eats slowly, and he sleeps with his head elevated rather than lying flat. When we travel, we bring little risers that we call our “riser cups,” and he uses a chair beside the bed so he can sit more upright. We have packed those things in suitcases all over the world!
But the important thing I want to share is this: life can go on.
My husband is now 84 years old. He has traveled extensively, including climbing for two days toward Mount Everest in Nepal. He has also gone through open-heart surgery and other health challenges along the way, but he has continued to live a very full and active life.
We’re still traveling, and this year we’re taking a cruise to Barcelona from Michigan.
I know everyone’s journey with esophageal cancer is different, and I’m certainly not suggesting that everyone will have the same experience. But when my husband was diagnosed more than 30 years ago, I don’t think we could have imagined all the life that was still ahead of us.
So for anyone who is struggling right now: keep going. Learn what works for you, give yourself time to get stronger, and remember that life after esophageal cancer can still be a very, very long and wonderful journey.
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@earle thank you I share a king size bed with my partner so the topper is half of the king size bed so that's what I've been sleeping on on my back. We wouldn't have room in the bedroom unless we got rid of the king size bed and got a single for him and then a hospital bed for me, but we still wouldn't have room. I thought that your wife said when you travel you put the hotel van on risers but maybe I got it wrong. Thank you for posting.
Someone said that, no either of us. IDK how they do it. Most hotel beds now are solid all around down to the floor, to keep items from rolling under and to simplify cleaning. Even if you could lift one, it would be massive and very heavy and would have to be lifted several inches to help...
On Thursday, August 27, 2026 at 07:01:11 AM CDT, Mayo Clinic Connect wrote:
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@earle thank you I share a king size bed with my partner so the topper is half of the king size bed so that's what I've been sleeping on on my back. We wouldn't have room in the bedroom unless we got rid of the king size bed and got a single for him and then a hospital bed for me, but we still wouldn't have room. I thought that your wife said when you travel you put the hotel van on risers but maybe I got it wrong. Thank you for posting.
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@naoshapiro1
I can’t say enough on how much of a game changer this was for improving my comfort and sleeping. When traveling I roll it up and take it with me. Avana super slant full bed wedge. 1/2 a queen size mattress Amazon $199
@brianpj12 I already use it on my king. Size bed is half the size of my king size bed, but I don't believe that you take it with you when you go to a hotel but if you do, I mean, I know I can roll it up and take it with me. I just didn't know anybody else would and I put a sheet on mine and I still sleep on two pillows and put two very very flat pillows underneath it and then I put a pillow underneath my leg so I won't have back pain wow I didn't know anybody else would take it with them to a hotel, Naomi
Hi Naomi,
I place two belts on my bed under it lengthwise.
Then roll it up as tight as possible. Then tie it with my old belts. The longer the belts, the easier it is.
I also have a bag that zips with handles to transport it.
(Because it’s considered a “medical device” it’s not considered a bag at the airport)
The full bed wedge allows me to sleep on my side!
I also put a pillow under the wedge at the head of the bed.
Brian
@brianpj12 thank you so much i told my partner if we ever go on a day and day night trip to the beach we could do this, i cannot sleep on my side as if my head rolls down i will hav e reflux, my neck has been bothering me for a while i just started pt which will begin in sept for my neck. I eat such a wierd diet with pureed foods at lunch including crushed hemp hearts, and nuts and carrots bok choy fennel and einkorn that unless I took my food with me i am afraid i would be sick, i'm 7 years posst esophagectomy and still not brave enough to try real foods except for banana, oatmeal, kiwi and sour dough bread. The rest are ground. I have so many food intolerances and ibs and make kidney stones so I'm on a low salt low oxalate diet and take calcium citrate powder with each meal except when I take an iron pill for my low ferritin, because the calcium would keep the iron from absorbing, just too many things to juggle, luckily my partner is loving and accepting and will go on his second yearly trip without me, but with road scholar a great group.
@brianpj12 Although I have one, I rely on the hospital bed provided by Medicare instead. However, I certainly can see where it would be helpful in hotels. Once you get it rolled, do you check it as a bag? There certainly wouldn't be room in the plane's cabin. If you check it, do you have a protective cover for it? I've watched my bag sit outside in driving rain, waiting to be loaded as cargo. Under those circumstances, the foam, unprotected, would seem to turn into a gigantic, unusable, wet sponge...
Hi Earle,
I also have an adjustable bed but I prefer this full bed wedge because it allows be to sleep on my side and by morning I’ve often moved to my stomach. When traveling I place the wedge in a large water proof bag to protect it from getting anything on it. My wife purchased the bag on Amazon, when we check our bags at the airport she always mentions that it’s a medical device for me and they don’t include it in our bag count.
I never leave home without it.
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1 Reaction@brianpj12 I actually sleep on my side in the hospital bed by adjusting it. Stomach is out for me because of spinal problems. As I said, I prefer the hospital bed at home, but I can certainly see a use for the wedge topper when traveling...