Recently diagnosed, surgery coming up.

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  • Unknown
    Unknown
    #22
    sideways said:

    update...
    Howdy all :)

    I had my surgery, 11 days in the hospital, and have now been home for a few days. I know it's a long road for recovery, but for a guy who's never really been sick...this sucks...LOL. We'll get through it, hopefully without any major complications! Thanks again for all the support and well wishes!

    Greg

    This comment has been removed by the Moderator
  • K_ann1015
    K_ann1015 Member Posts: 500
    #23
    sideways said:

    Great stuff Paul!
    Thanks for the great info Paul! Like you say, I know I'm going to really have to be patient with this transition. Patience hasn't been one of my life long strong suits...LOL. Like you mention though, and what I need to keep telling myself is....

    1. If I push it....I'll really hate the consequences

    2. If I give it time, things will eventually get dialed in.

    As far as the pathology report they said the lymphnodes (22) were all negative. I believe the terminology they were using was "T1-N0" ??

    Great News Greg!
    HI Greg,

    I just had to say HI & Congrats on doing so well so far. I like your attitude!. It really will help your recovery.

    My dad was one that walked a lot of laps after surgery & was in good shape before his surgery. I think it really helps get your heart pumping, muscles moving and oxygen to the whole body, needed for healing, pain control & regaining your strength. But, you are right---you'll have to be careful to not "push it too far".

    I, too am curious if you are a firefighter---my dad was a volunteer for 50 plus years. When he recovered & felt up to it after surgery, he returned to the dept light duty and drove the Tanker Truck. I think everyone has heard my stories of him before--so I won't repeat.
    But hang in there Greg!
    Kim
  • sideways
    sideways Member Posts: 24 Member
    #24
    K_ann1015 said:

    Great News Greg!
    HI Greg,

    I just had to say HI & Congrats on doing so well so far. I like your attitude!. It really will help your recovery.

    My dad was one that walked a lot of laps after surgery & was in good shape before his surgery. I think it really helps get your heart pumping, muscles moving and oxygen to the whole body, needed for healing, pain control & regaining your strength. But, you are right---you'll have to be careful to not "push it too far".

    I, too am curious if you are a firefighter---my dad was a volunteer for 50 plus years. When he recovered & felt up to it after surgery, he returned to the dept light duty and drove the Tanker Truck. I think everyone has heard my stories of him before--so I won't repeat.
    But hang in there Greg!
    Kim

    Yes.. it's one of our Fire rigs :)
    I'm a Process Operator/Fire Truck Captain at a southern California oil refinery. Been at it for 23 years now. I admire your Dad for sure! I'm trying to walk as much as possible, also trying to get the "Hang" of the portable backpack/pump. The sooner that becomes second nature, the more I'll be able too do.

    So far the only issue is what my Doc calls a "Lazy stomach" The valve on the bottom of my stomach doesn't want to dialate enough. We are doing eurythrimiacin (sp) in the J tube every 6 hours to try to help it out. If that doesn't work, it will be an endoscope to go down and dialate it. I start my first liquids tomorrow, limited to a paltry 250ml a day because of the lazy stomach. Hopefully it kicks itself in the nutt and gets moving ...LOL.
  • sideways
    sideways Member Posts: 24 Member
    #25
    unknown said:

    This comment has been removed by the Moderator

    Update....
    Hiya all :) Had good news from my oncologist on Wednesday, as of right now he says I warrant observation and no Chemo or radiation! WOOHOO! He has staged me at stage 1A, T1-N0. Recovery is chugging along, the only setback I'm having at the moment is issues with swallowing. My throat is really tight, and most soft foods are very uncomfortable to swallow. My Surgeons nurse says it's fairly common to have scarring from the surgery that can cause this problem. She says they'll need to dialate and stretch it out to make it easier to swallow. She also says this can take multiple times to fix :(

    All in all, this means I'll probably be on the J tube a bit longer, I was supposed to get off it in 2 weeks. In the grand scheme of things, I have to just stay positive and roll with this issue. Has anyone else had this issue???

    Greg
  • ShellyAS
    ShellyAS Member Posts: 24
    #26
    sideways said:

    Update....
    Hiya all :) Had good news from my oncologist on Wednesday, as of right now he says I warrant observation and no Chemo or radiation! WOOHOO! He has staged me at stage 1A, T1-N0. Recovery is chugging along, the only setback I'm having at the moment is issues with swallowing. My throat is really tight, and most soft foods are very uncomfortable to swallow. My Surgeons nurse says it's fairly common to have scarring from the surgery that can cause this problem. She says they'll need to dialate and stretch it out to make it easier to swallow. She also says this can take multiple times to fix :(

    All in all, this means I'll probably be on the J tube a bit longer, I was supposed to get off it in 2 weeks. In the grand scheme of things, I have to just stay positive and roll with this issue. Has anyone else had this issue???

    Greg

    Swallowing
    My husband still has issues with swallowing. He had his throat dilated 2 times since his surgery at the end of June. His Dr. also suggested seeing a speech pathologist which they will teach him how to swallow. He said he will still need the dilations and could be needed every other week for a period of time. One of the nurses at the hospital told us another Dr. taught his patient how to dilate herself at home and sent her home with the tool. Amazing!

    Glad to hear you are doing well.
  • sandy1943
    sandy1943 Member Posts: 824
    #27
    sideways said:

    Update....
    Hiya all :) Had good news from my oncologist on Wednesday, as of right now he says I warrant observation and no Chemo or radiation! WOOHOO! He has staged me at stage 1A, T1-N0. Recovery is chugging along, the only setback I'm having at the moment is issues with swallowing. My throat is really tight, and most soft foods are very uncomfortable to swallow. My Surgeons nurse says it's fairly common to have scarring from the surgery that can cause this problem. She says they'll need to dialate and stretch it out to make it easier to swallow. She also says this can take multiple times to fix :(

    All in all, this means I'll probably be on the J tube a bit longer, I was supposed to get off it in 2 weeks. In the grand scheme of things, I have to just stay positive and roll with this issue. Has anyone else had this issue???

    Greg

    Hi, Greg, Glad you're doing
    Hi, Greg, Glad you're doing well. I have had four diations in four years. The last was better that previous, so I am not getting another unless needed. I have learned to concetrate when I eat--remembering to take small bites, and chew, chew, chew.
    Three weeks ago,, three bites into eating and I realized I was in trouble. My food was blocking competely. Three hours later I went to the emergency room.This would happen on a sat. night.They gave me something to relax my esphagus and four hours later it worked. They thought they were going to have to put me to sleep, and remove it. Since then I have been fine, so I'm still not going for the dilation.
    Hope you can get some releaf soon, Sandra
  • sideways
    sideways Member Posts: 24 Member
    #28
    sandy1943 said:

    Hi, Greg, Glad you're doing
    Hi, Greg, Glad you're doing well. I have had four diations in four years. The last was better that previous, so I am not getting another unless needed. I have learned to concetrate when I eat--remembering to take small bites, and chew, chew, chew.
    Three weeks ago,, three bites into eating and I realized I was in trouble. My food was blocking competely. Three hours later I went to the emergency room.This would happen on a sat. night.They gave me something to relax my esphagus and four hours later it worked. They thought they were going to have to put me to sleep, and remove it. Since then I have been fine, so I'm still not going for the dilation.
    Hope you can get some releaf soon, Sandra

    hmmm....
    Shelly, I can't even fathom sticking something down my throat that far to self dialate...UGH!!! Sandra, I've been mindfully chewing about 3 times more than I normally would, some things just seem to stick. I'm eating very little, the most in a good sitting would be 4oz total. I'm sorry you had to go to the ER!! What a horrible feeling that must have been.

    I guess my confusion is...if it's scar tissue from the breathing tube during the surgery, why not remove the scar/excess tissue??

    Greg
  • NLMCEM
    NLMCEM Member Posts: 50
    #29
    sideways said:

    hmmm....
    Shelly, I can't even fathom sticking something down my throat that far to self dialate...UGH!!! Sandra, I've been mindfully chewing about 3 times more than I normally would, some things just seem to stick. I'm eating very little, the most in a good sitting would be 4oz total. I'm sorry you had to go to the ER!! What a horrible feeling that must have been.

    I guess my confusion is...if it's scar tissue from the breathing tube during the surgery, why not remove the scar/excess tissue??

    Greg

    My husband still eats very little
    My husband still eats very little at a time and is always hungry. He had stretching every month for 4 months, then went every 2 weeks and back to every 3 months. That was since Dec 2010. The ones done at 2 weeks did not stretch as far hoping to not tear as much and cause even more scar tissue. His last was finally in March 2012 and even though he has some trouble it isn't to the point he needs to be stretched again as of yet.

    I read you chew your food more, do you also try to take smaller bites at a time? That is my husbands biggest trouble. He wants to use his BIG spoon and he just would not listen to me about taking smaller bites no matter how well he thinks he chews it, I think too much at once is just as bad as not chewing well. When he had his last test the nurse asking him questions also mentioned what not to eat and to take smaller bites as has many in the past. He seems to finally be trying and is doing some what better. Although he gags on his own saliva often, that drives him crazy.

    Can you drink ensure or milkshakes with added fruit and yogurt? That may help you. My husband is unable to drink even the vanilla flavor ones so this has been another problem for him. They burn his throat as many other items do still to this day. So how he is maintaining his weight is a miracle. He went from 195 per-surgery to 140 post-surgery and now is a steady 155.

    Not sure but I believe removing scar tissue would only be done as a last resort as trying to remove it in the long run could make it even worse. And that would be another major surgery. The scar tissue is probably not from the breathing tube but more from where your stomach was pulled up and connected with what ever is left of your esophagus. That can lead to a shelf like formation as you heal and why the stretching is done.

    Take it a day at a time. My husband feels much better then he had even though he is on disability now because he gets weak very fast and still has pain in his belly everyday. He walked out of the hospital after surgery but ended up in a wheel chair for a month because he was so weak. Don't over do but do what you can. Everyone is different and my husband was Stage 3 now Stage 4 which may be why he is having it so rough and not improving as well as some. But he is enjoying life, we visit with family far and near and he is fixing our home up, enjoying his good days! He has a wonderful attitude even when he has bad days.

    Don't lay down after eating and try not to eat close to bed time. My husband still sleeps on his recliner most nights straight up. When he does get to sleep in bed that is elevated and with 4 huge pillows he feels in heaven :)

    It does take time so keep your chin up and know we all wish you the best!
    EC Fighter Caregiver,
    Carolyn

    Paul is a wonderful help so try to read his post and check out the links he provides.
  • sideways
    sideways Member Posts: 24 Member
    #30
    NLMCEM said:

    My husband still eats very little
    My husband still eats very little at a time and is always hungry. He had stretching every month for 4 months, then went every 2 weeks and back to every 3 months. That was since Dec 2010. The ones done at 2 weeks did not stretch as far hoping to not tear as much and cause even more scar tissue. His last was finally in March 2012 and even though he has some trouble it isn't to the point he needs to be stretched again as of yet.

    I read you chew your food more, do you also try to take smaller bites at a time? That is my husbands biggest trouble. He wants to use his BIG spoon and he just would not listen to me about taking smaller bites no matter how well he thinks he chews it, I think too much at once is just as bad as not chewing well. When he had his last test the nurse asking him questions also mentioned what not to eat and to take smaller bites as has many in the past. He seems to finally be trying and is doing some what better. Although he gags on his own saliva often, that drives him crazy.

    Can you drink ensure or milkshakes with added fruit and yogurt? That may help you. My husband is unable to drink even the vanilla flavor ones so this has been another problem for him. They burn his throat as many other items do still to this day. So how he is maintaining his weight is a miracle. He went from 195 per-surgery to 140 post-surgery and now is a steady 155.

    Not sure but I believe removing scar tissue would only be done as a last resort as trying to remove it in the long run could make it even worse. And that would be another major surgery. The scar tissue is probably not from the breathing tube but more from where your stomach was pulled up and connected with what ever is left of your esophagus. That can lead to a shelf like formation as you heal and why the stretching is done.

    Take it a day at a time. My husband feels much better then he had even though he is on disability now because he gets weak very fast and still has pain in his belly everyday. He walked out of the hospital after surgery but ended up in a wheel chair for a month because he was so weak. Don't over do but do what you can. Everyone is different and my husband was Stage 3 now Stage 4 which may be why he is having it so rough and not improving as well as some. But he is enjoying life, we visit with family far and near and he is fixing our home up, enjoying his good days! He has a wonderful attitude even when he has bad days.

    Don't lay down after eating and try not to eat close to bed time. My husband still sleeps on his recliner most nights straight up. When he does get to sleep in bed that is elevated and with 4 huge pillows he feels in heaven :)

    It does take time so keep your chin up and know we all wish you the best!
    EC Fighter Caregiver,
    Carolyn

    Paul is a wonderful help so try to read his post and check out the links he provides.

    Litte bites...
    Thanks for the information Carolyn! I do take small bites and chew a lot. Last night I took my 3 oral meds, the biggest, my dexilant capsule was no problem, the smallest, my probiotic which is the size of a birth control pill is still seemingly stuck this morning :(. The first question I asked my surgeon was where the new esophogeal attachment point was. Unless he's confused it is quite a bit south of where I swallow according to him. I have an appointment with him on Thursday, which really sucks because this is not getting better. Add to that, then I'll have to wait for another week for the endoscope :(

    Greg

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