John Recovery Update 19 days post -op

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Ericalynn
Ericalynn Member Posts: 200
in Esophageal Cancer #1
OK this is where we are today. One dose of Imodium and a script for Zofran cleared up the diarrhea and helped with nausea. The Home Health agency delivered the pump & supplies to start the tube feedings on Tuesday. John did look much better Tuesday morning. John did eat a little bit yesterday (not much) but it was something. The chest tube wound is still draining , hopefully getting the infection out of there with the help of antibiotic. Today John is having extreme pain along his right scapula ( shoulder blade) he had this muscle pain, spasms & knots in the hospital. I thought that had cleared up but now today he is in extreme pain again. He is getting upset/depressed that he is not seeing progress in his recovery. He sees one-step forward two steps back. I am trying to encourage him that I see improvement but I am not dealing ( physically) with the pain and discomfort.
Not sure what else I can do to help/support him.
Erica

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  • Laura23
    Laura23 Member Posts: 81
    #2
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    Sorry to hear
    It is hard for our guys to be patient with themselves. But try to get him to remember all that he has been through even before surgery. His body has taken a beating! Even if he sailed through chemo and radiation, it is still difficult for the body to recover from everything in such a short amount of time. Also, the older we get, the slower we heal. It's not like we are 20 anymore!

    I would be all over the doctors trying to get better pain relief. I'm not sure if the shoulder pain is normal or not. Luis doesn't have any but that doesn't mean anything. Maybe a muscle relaxant on top of the pain meds would help.

    We are praying for you and hoping that things improve. Remember, just one day at a time.

    Laura
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #3
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    Welcome
    Hi Erica and John
    Welcome to our family. I was a caregiver for my dad. He passed from EC with mets to the liver in March 2010. Thank you for some good news. I am sorry he is suffering with the shoulder blade pain. All pain is manageable, you just have to find the right amount and kind of pain med. I would suggest you find someone at the hospital to talk to. There must be counselors there that can help explain what you are going through. The best thing you can do for John Erica, is to be there for him. Tell him how proud of him you are, tell him how much you love him daily. Listen to him. Let him lean on you. If his depression continues, he can seek counseling and get on an anti depressant. Hope this helps. Lean on us anytime!
    Keep in touch.
    Tina in Va
  • jim2011
    jim2011 Member Posts: 115
    #4
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    Baby steps
    I had the surgery in April and went through all the issues that your husband has/is going through. What helped me was the goal of the one step forward.
    Ambien to sleep with a wedge to raise my head and upper body and another smaller wedge under my knees so that I was get set in the bed and able to use the feeding tube.
    I knew it was going to be 6-8 weeks after surgery to feel any better at all so I concentrated on small goals like getting up and washing myself at first, then I added a few sips of tea (eventually full blown coffee)and a really light breakfast. One egg scrambled or maybe some canned peaches. Having holes in your body is part of the program. I personally hated the feeding tube which always seemed to leak and hurt so I worked hard to get that thing out of me. That was a goal. Watching Star Trek Voyager seasons 1-5 was a series of small things that I did.
    Doing chores was not possible but I found that I could walk out to get the mail. Then I got on the lawn tractor and rode around and even mowed the grass. Did a bit of gardening...you get the idea. Over time those little steps forward added up to what seemed like miles of progress. You can do it too.
    Jim
  • TerryV
    TerryV Member Posts: 887
    #5
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    Everyone has the right idea
    One step at a time, Erica. I understand John's impatience. It isn't like he hasn't dealt with this long enough. But as I remind Nick, we were 4 months from diagnosis to surgery, with a lot in between. The body takes some knocks in that. and Laura is also right, we aren't 20 any more ;)

    We are right here with you. Kick, scream and shout any time!

    Terry
  • chemosmoker
    chemosmoker Member Posts: 501
    #6
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    PAIN MANAGEMENT IS #1 I THINK...
    Erica,
    I would get that pain under control! That, to me, would be 75% of the battle, and possibly makes EVERYTHING else that much worse. Just imagine (I know it's a crappy analogy but still...) a BAD toothache and also trying to deal with work, life, etc. We have all been there, and it makes everything that much more intolerable. You get the idea.

    If his pain is managed properly (and DON'T beat YOURSELF up for this ever, this is the DOCTORS job) he will be a LOT better off I believe. I hope this helps.

    I cannot offer much else, except tell him that I AM praying for him and we are SO proud of him for having the courage to walk through this surgery and be doing SO well, from where I sit.

    God bless and I hope it ALL improves a little day by day-and it WILL!

    Love to you both,
    -Eric
  • birdiequeen
    birdiequeen Member Posts: 319
    #7
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    Erica,

    Did they put John on Reglan? My husband did not do well on that medication. He had terrible anxiety and suicidal thoughts. I did some research and found these are not uncommon side effects. We got him on a different medication (from Canada) and he is doing much better.
  • TerryV
    TerryV Member Posts: 887
    #8
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    birdiequeen said:

    Erica,

    Did they put John on Reglan? My husband did not do well on that medication. He had terrible anxiety and suicidal thoughts. I did some research and found these are not uncommon side effects. We got him on a different medication (from Canada) and he is doing much better.

    Reglan did the same to my sister, Birdiequeen. She found driving very difficult - she was too anxious about things. A short trip became a huge obstacle.

    Once off Reglan, she's fine again. She was prescribed Reglan to help with a stomach that empties too slowly....

    Terry
  • birdiequeen
    birdiequeen Member Posts: 319
    #9
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    TerryV said:

    Reglan did the same to my sister, Birdiequeen. She found driving very difficult - she was too anxious about things. A short trip became a huge obstacle.

    Once off Reglan, she's fine again. She was prescribed Reglan to help with a stomach that empties too slowly....

    Terry

    Yes, Raglan can be very
    Yes, Raglan can be very debilitating. From what I understand it is prescribed often after surgery to help the stomach act more like an esophagus. If any of you that are recovering from surgery are taking this drug and feeling low, please please tell your doctor and get the other med. If you need the name let me know. Act fast because some of the blogs on this medication say the side effects did not go away after stopping the medication. My husband came out of that very dark place and I cannot imagine if he had not.

    Terry, I'm glad your sister is fine again too.
  • JimboC
    JimboC Member Posts: 264
    #10
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    chemosmoker said:

    PAIN MANAGEMENT IS #1 I THINK...
    Erica,
    I would get that pain under control! That, to me, would be 75% of the battle, and possibly makes EVERYTHING else that much worse. Just imagine (I know it's a crappy analogy but still...) a BAD toothache and also trying to deal with work, life, etc. We have all been there, and it makes everything that much more intolerable. You get the idea.

    If his pain is managed properly (and DON'T beat YOURSELF up for this ever, this is the DOCTORS job) he will be a LOT better off I believe. I hope this helps.

    I cannot offer much else, except tell him that I AM praying for him and we are SO proud of him for having the courage to walk through this surgery and be doing SO well, from where I sit.

    God bless and I hope it ALL improves a little day by day-and it WILL!

    Love to you both,
    -Eric

    I agree with Eric, first and
    I agree with Eric, first and foremost, pain management. Pain is one of those things that when it gets wound up, it's hard to get back under control. Looking back, when I was in pain post-op, the whole world just wasn't right. My body was so tense but when I would take my meds, I could feel everything relaxing. I was a bad patient. I was afraid to take the pain meds for a while because I thought I would get addicted. My recovery went so much better once I allowed my pain to be managed.

    As someone said, we've been through so much by the time we get to surgery, our bodies are tired. Surgery alone is rough but throw in chemo and radiation leading up to it and wow. I had barely started feeling better from the chemo when they wisked me off to the OR.

    All my best!
  • jss2011
    jss2011 Member Posts: 132
    #11
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    birdiequeen said:

    Yes, Raglan can be very
    Yes, Raglan can be very debilitating. From what I understand it is prescribed often after surgery to help the stomach act more like an esophagus. If any of you that are recovering from surgery are taking this drug and feeling low, please please tell your doctor and get the other med. If you need the name let me know. Act fast because some of the blogs on this medication say the side effects did not go away after stopping the medication. My husband came out of that very dark place and I cannot imagine if he had not.

    Terry, I'm glad your sister is fine again too.

    Hi Erica
    I'm sorry John is having all this pain and feeling so down. It's difficult for us to see our loved ones suffering and we really can't do much but be there. It will get better.
    Remind me in a few months that I said this cause it will be me in your shoes.
    We are all here for you both.

    Hugs,
    Julie

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