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How much did your doctors get you ready for post-surgery life

hardtoswallow
hardtoswallow CSN Member Posts: 6 Member
in Esophageal Cancer #1

Hi All,

I'm an 8-year post esophagectomy squamous cell survivor. I am very grateful for being a survivor but also very frustrated by what doctors did NOT tell me life would be like after surgery. So I am wondering if this was just my experience or if others have had similar experiences and what they did not tell you about.

For example, my surgeon told me I'd be sleeping on a wedge for a while but his PA told me after he left the room that the wedge would be permanent. Also told I could eat anything I wanted but it would just be smaller portions. So not true! No mention of the possibility of gastroparesis or other motility issues which for me have been chronic. And zero mention about what having a truncal vagotomy would do to my nervous system.

Lots of topics here to delve into and I'd love to connect with others who chronically live with the aftermath and how you deal with it so we could share strategies.

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Comments

  • Barryclevine
    Barryclevine CSN Member Posts: 5 Member
    #2

    I'm 3 years after surgery and I'm still learning how to deal with all kinds of my new life after Esophageal Cancer. I agree, the doctors don't tell you a lot about what life will be like after surgery. Sleeping, eating, working and things like travel are all different. I am learning to be patient with myself but its not easy changing life in my 60's. I wish you all good healing over the coming months and years to come.

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  • Trista334
    Trista334 CSN Member Posts: 1 *
    #3

    my sister is almost 3 weeks out of surgery. She had almost all if her esophagus removed and her stomach brought up and attached it to what was left of her esophagus. We have been home from the hospital for 2 days. She is experiencing diarrhea really bad and reflux tonight. Do you have any recommendations. Her surgeon has her on a soft food diet but no other restrictions as far as food and drinks go. They have not told us anything she can’t or shouldn’t eat.

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  • Barryclevine
    Barryclevine CSN Member Posts: 5 Member
    #4

    patience! She is weeks after surgery, it takes time. I had the same surgery and I’m still learning what and how to eat after 3 years. Small amounts of food 5 to 6 times a day is ideal. Please continue to hydrate, that’s not gonna be easy but necessary. Sleep with her head elevated, that’s critical and must get used to. Her body is adjusting and it will take a lot of time. Here is my email, I’m happy to help if I can. Barryclevine@yahoo.com. Wishing you all good healing and a lot of patience.

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  • RobertDucat
    RobertDucat CSN Member Posts: 4 Member
    #5

    I am 8 weeks post neck dissection surgery to remove a tongue based tumor. I have a tracheotomy and a feeding tube. I can not eat or drink anything. Everything I try to swallow goes into my lungs. I want to eat food so bad!! When were you others able to swallow after surgery!

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  • RobertDucat
    RobertDucat CSN Member Posts: 4 Member
    #6

    I feel like my doctors didn’t prepare me even a little bit before I left the hospital. I was in the hospital for 22 days following the surgery. And when I was discharged, it felt like “ok get out. You are someone else’s problem now”.

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  • hardtoswallow
    hardtoswallow CSN Member Posts: 6 Member
    #7
    https://csn.cancer.org/discussion/comment/1726553#Comment_1726553

    Hi Robert,

    I had an esophagectomy for esophageal cancer so can't do comparison between what you are experiencing and what I experienced. I had a feeding tube for 3 months and then was slowly moved onto liquids and then soft foods. Took a lot of time for my body to get used to the "new normal."

    Have you checked out the head, neck and throat cancer group here and also on MayoConnect and SmartPatients? You might get better advice in these groups from people who have actually experienced your specific situation.

    I am truly sorry to hear what you are going through. Sounds horrible and I hope you get some kind of relief.

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  • hardtoswallow
    hardtoswallow CSN Member Posts: 6 Member
    #8
    https://csn.cancer.org/discussion/comment/1726513#Comment_1726513

    Barry gave you excellent advice and I will also reinforce the patience message. This is a BIG deal surgery. It took me a long time to get used to my body after the surgery. The diarrhea could be from dumping. Food goes in quickly and comes out the same way. Maybe softer textures? Less quantity, chew, chew, chew and then chew again until it's basically liquid before she swallows. So many nerves and muscles get cut and stomach gets moved up it takes the body a long time to get acclimated.

    Also sleeping elevated is really important. As far as reflux your sister's doctor will probably put her on PPI which most esophagectomy patients stay on forever.

    Biggest message of all: hang in there! it will get better and she will adjust and this will become part of her routine like everything else. Sending your sister very positive vibes.

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