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Living life after treatment and surgery for Esophageal Cancer.
In December of 2020 I was diagnosed with stage 3 Esophageal Cancer. After chemo and radiation in February and March of 2021, I had surgery to remove the cancer in May of 2021. For me the surgery and recovery were probably the toughest part of the process. Not to say the chemo and radiation were easy, they were not but the changes the surgical part of treatments have changed my life from here on. Life after I got home from the hospital at first would not have been possible without a lot of help. Little things you take for granted such as showering or even walking about your home couldn't be accomplished without help. Those things got easier over time but it was a challenge. Getting use to having to sleep at a 30° angle because laying flat means anything in you new redesigned stomach comes up while you sleep(very uncomfortable and dangerous for your lungs). With the new design of your stomach food is also a bit of a challenge. They give you a list of foods you will probably be able to eat and a list of foods you probably should stay away from. With me I found after time that you have to try different foods and your body tells you quickly if you can or can not eat that again. You will also find portions you can tolerate will be much less than you were use to. This means you eat many more times per day. In the end it has been worth it for me because I have been cancer free on my 6 month scans so far . Another scan in a month which will be 2 years since surgery, I pray they continue to show me cancer free. If anyone has any questions on my journey so far please reach out. I have a friend who mentored me in my journey which helped tremendously for me. As I have said and believe since my journey started we are all" STRONGER TOGETHER "
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Congratulations you seem to be doing so well. My surgery is pending till the first chemo round is over. I would love some helpful tips and truths post surgery that helped your recovery. Sleeping situation best dietary advice worst and best of recovery. Thanks
Zoom call in 45 minutes... 9am Eastern.
Gary
Sorry I’m on the west coast.
Hello, Scott here post surgery is different for all of us. So first I had ivory Lewis surgery that’s robotic surgery. Two surgeons 9 hr surgery I was in ICU 1 day 8 days in hospital altogether. Recovery for me was pretty good first couple days sore hardest part chest tube coming out my right side. Because they deflated my right lung to do surgery. So chest tube is to make sure lung clears out fluid. Next is to get up and walk helps with clearing out lungs also then breathing exercises the more you do the faster the recovery. Put the work in it’s worth it. 7 days later I had my swallow test to make sure no leaks. A ok that day I also got my chest tube out great day. Two days later I went home. So I was on a soft food diet for a couple weeks. Worked my way up to other foods. It’s been 8 months post surgery. I can eat most foods pretty well. Biggest thing is still small meals more often I get full fast. Take walks everyday also work out. About sleeping I don’t have acid reflux personally I don’t have to sleep at a 30 degree angle. Some of us do some use wedge pillows. I do recommend not eating 2 hours before bed. At least that works for me. All through this my attitude was I got this also my support team was awesome. That includes my oncologist my surgeons and nurses they were awesome. And of course my family my wife and sons and my brother and sisters and in-laws everyone was great. Hopefully you have a great support system also. If you have any other questions feel free to ask ok. Wishing you the best!! Scott
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1 ReactionCongratulations Scott and thank you for the positive outlook. Much appreciated.
Thx Scott. Good for you. Keep it up. My guy has the colon used and was doing well till 2 months out. Short story, he probably needs dilation or a stent...has a stricture at the distal connection. At least we know this should help get him back on track.
Meg
I live in Southern California... I make all Zoom calls to help my fellow patients and caregivers. But I'm returning from Athens tomorrow... so I'll miss Wednesday's call. Be back Sunday... 6am on Zoom.
Gary
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1 ReactionHi there
I had my surgery one month ago eating is a real challenge if I eat too much I bring it up your right in that you have to eat what you’re body can accept I keep trying different things. I have to go back to my oncologist as there’s some remedial cancer not the news I hoped
@wklapp I was diagnosed stage four esophageal cancer in November 2019. My chemo and radiation started in January and ended in March. I then had the Ivor Lewis surgery April 30 of 2020. I will admit my surgeon did tell me that it would be the worst thing that I ever had to go through in my life. She did not lie.
I guess the best advice I can give you is to expect the worst and hope for the best. I had absolutely no problems with chemo and radiation like they told me I probably would. I hoped surgery would be the same. I was wrong. I spent 13 days in the hospital as quarantine for Covid was just beginning. I was dropped off by family and the only contact I had was by phone or tablet.
When I finally did make it home, the pain was almost unbearable. They had me taking four Tylenol. Three hours later taking four ibuprofen and repeat for almost 2 months. On top of this I was taking either morphine or oxycodone every six hours. If your doctor put you on a schedule like this, follow it. Do not think you’re feeling OK maybe I’ll wait because it will be too late. I asked the people helping me document every time they gave me anything.
And then there’s eating. One would think that after not having any solid foods for almost 2 months, and nothing but clear liquids for a month food would be at the top of my list. It was not everything had to be totally fat-free, which means even my Ritz crackers did not taste good.
Finally get all of the tubes taken out except for the feeding tube and I can have a regular diet as I can tolerate it. I’m thinking to myself. Perfect finally. Wrong again. Don’t get me wrong. I could eat anything I wanted, but in the beginning, I would take like four bites, and my nose would start running. My mouth would start watering. Not sure if I was going to be sick. Nope just my body telling me to stop . Am I a good listener I wasn’t in the beginning, but I quickly learned the consequences. Luckily, the only thing coming back up from my mouth were tasteless Air bubbles tiny, tiny air bubbles. It didn’t take me long to realize what dumping was. When it comes to this, I was a fast learner.
The only advice I have is take things slowly. Every day is an accomplishment and things will get easier. Not better but easier.
Best of luck
Lori
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1 Reaction@doglover888