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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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It’s so wonderful to hear positive Responses here! This gives hope to so many. Thank you for your post and continue with a fulfilling and happy life!
THANK YOU SO MUCH for sharing this!!!! What an incredible life and journey!!! And how strong both of you are!!!! I bow my head and stand in awe!!!! THANK YOU and may you life your lives to the fullest for many, many, many more years!!!!!!!! Biggest hug to both of you
I am so happy for you and your husband. You have faced tremendous challenges with unyielding courage and perseverance. I'm only two years into my journey, but continue to have good days and bad; mostly good. Your message is uplifting and full of hope. Thanks for sharing and wishing you continued success. Enjoy Barcelona! P.S. there's no way he did this without you!
15 month survivor here and 86. To clarify, do you place the riser cups under the feet of the bed? So many hotel beds now have a solid base. I sleep in a hospital bed at home (paid for by Medicare), so I'm accustomed to setting the angle anywhere I want it. Then, in a hotel, I'm reduced to trying to duplicate it with pillows. I wish you would provide more detail...
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2 ReactionsGod Bless You for sharing your story- I REALLY needed to hear this. 🙏
@earle
so good to hear, I know everyone is different, I got a para conduit hernia but am 7 yyears out and went from 108 to 111 so far not going to have operation for the hernia, I burp a lot, walk exercise but I don't swim or hike or travel, what do you do with the risers, I use a mattress that is over my mattress and 7 inches higher at the head and sleep on two or more pillows, can't imagine lifting a hotel bed to fit over the risers, esspecially a king as I am with my partner of 31 years but now he travels without me, How does that work? I'm so happy for you, I am going to be 82 in December and am on a lot of omeprazole and pepsid and fear my life is shortened by these medicines, I am 99 % vegan -my lunch is pureed, I can eat oatmeal bananas, kiwi and sour dough bread and nut butters, but I cannot eat much real food except 2 ounces of chicken, cannot imagine traveling and have added b12, d3 and e and now iron every other day as my ferritin was going down, Any comments you could make would be so so appreciated!!!!!!!!! Naomi
@naoshapiro1 Naomi, I'm not clear on what you mean by "risers." Do you mean rails? Those come with the bed but are purely optional. Mine are sitting in a closet. The bed lowers down much lower to the floor than a standard bed, which is handy, if you're on the short side, which I am. These beds come with three functions - head lift, knee/foot lift, and overall height. Medicare will pay for the first two to be electric. The third, overall, will be with a hand crank, unless you pay a bit extra. I did, but wish I didn't, because the bed just stays at its lowest height. It's mainly for situations where you're receiving treatment and I'm not. Point is, there's no lifting or climbing to be done.
On sleeping separately, my wife and I hate it. (Last Sunday was our 40th anniversary.) It was made medically-necessary, first by her back surgery and then my own problems. It places us 161' apart at night, which is undesirable but it's necessary. I hate to hear of your diet. I've been there. My tumor was circumferential and far enough progressed that they couldn't even get a wire down for a decent EUS. I've had four dilations and will have more for the residual scar tissue, but I eat what I want, barring mammalian products - all red meat, etc. (alpha-gal syndrome from tick bites.) Good luck! Hope I've cleared up some misimpressions about the beds...
@earle your wife mentioned that when you go to a hotel, you use your risers to raise the top half of the van. I have no idea what she meant. I sleep on a mattress that goes over my mattress and is half the width of our king size bed, so I'm sleeping higher than my partner which I don't like, but that has to be if I went to a hotel I would either have to take a special special pillow with me or just sleep on many many pillows too complex for me thank you thank you for answering and everybody's different so one day maybe I'll be brave and try different food and see if I can chew it to the point that it won't give me reflux at night with gastroparesis and a para conduit hernia I think I'm pretty fragile at this point
That was someone else. My wife doesn't post here and we don't use risers. I just make do as best I can with pillows. I have the slant topper you mention but never found it helpful. I haven't needed it since Medicare provided the hospital bed...