My new path

longtermsurvivor
longtermsurvivor Member Posts: 1,842 Member
edited March 2014 in Head and Neck Cancer #1

So after almost two years of follow up from my last cancer, I have a recurrance.  Its not curable, being right in the path of two previous radiation therapies, so I'm now officially on the palliation path.    As before, my cancers tend to be fast growing ones, so I went from totally without symptoms, to some real problems in a hurry.  I got a feeding tube about a month ago, and have had a whole host of problems with it, including have the bulb migrate into the small intestine and obstruct me.  What a royal pain.  My healthcare for these cancers has been over a distance of 350 miles, so I'm trying to get the tricky stuff done and transfer the remainder back home.  This is just proving pretty hard to do under my current circumstances.  I can't speak any longer, thank god for my patient wife to translate for me.    I head back to St Louis early tomorrow to hopefully get the feeding tube problems finally completely fixed, get my power port back in, and get my second chemotherapy.   If all this is successful, maybe we can quit driving up and down the interstate.

I have always enjoyed my participation in the board, and will continue from time to time as I am able.    I appreciate all the positive thoughts.

 

Pat

 

 

«13

Comments

  • lornal
    lornal Member Posts: 428
    #2
    Pat, so sorry to hear about

    Pat, so sorry to hear about this recurrance.  My prayers are with you and your family.  Have a safe drive, and hopefully you need to make that long drive much longer.

    I made the decision to not have radiation at this time.  My margins are clear (but close) and there is a 50% overlap from the radiation field from 2007.  A lot of risk with that, and I already have problems just from the surgery site where the prior radiation is.

    Are you going to be at St. Johns (oh, I mean Mercy)?

    Lorna

  • KB56
    KB56 Member Posts: 318 Member
    #3
    A new path

    pat, I'm so sorry to hear about the recurrence.  I have truly learned from your posts and always appreciated your opinion when I read through the board.   Hopefully you get the tube issues quickly sorted out and not have to worry about that any more.   

     

    i know it would be nice to be able to deal with this from home.  Hopefully you can get treatment transferred back home as soon as possible.  sending you every positive vibe and thought that I possibly can.   Good luck as you continue the fight.

     

    Keith 

  • Guzzle
    Guzzle Member Posts: 710
    #4
    lornal said:

    Pat, so sorry to hear about

    Pat, so sorry to hear about this recurrance.  My prayers are with you and your family.  Have a safe drive, and hopefully you need to make that long drive much longer.

    I made the decision to not have radiation at this time.  My margins are clear (but close) and there is a 50% overlap from the radiation field from 2007.  A lot of risk with that, and I already have problems just from the surgery site where the prior radiation is.

    Are you going to be at St. Johns (oh, I mean Mercy)?

    Lorna

    So sorry to hear this Pat.

    So sorry to hear this Pat. God bless you and yours mate. Your message meant a lot to me.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
    Well $%#&*(....

    Pat....I'm sorry to the core to hear this news.  I'm praying that you can get all the complicated stuff taken care of, and be able to stick close to home for further treatments.....I can't imagine the pain caused by the bulb of the feeding tube taking a trip to the small intestine....holy c**p!. 

    For the record, I have not only enjoyed your participation on this board, but count on you to translate the medicalese....and am glad you will continue as you can. 

    You've never been in my pocket, have you?  Well, I'm tucking you in there as I type....You have been an important part of my life the last two years....more than you know.....

    p

  • denistd
    denistd Member Posts: 597
    #6
    phrannie51 said:

    Well $%#&*(....

    Pat....I'm sorry to the core to hear this news.  I'm praying that you can get all the complicated stuff taken care of, and be able to stick close to home for further treatments.....I can't imagine the pain caused by the bulb of the feeding tube taking a trip to the small intestine....holy c**p!. 

    For the record, I have not only enjoyed your participation on this board, but count on you to translate the medicalese....and am glad you will continue as you can. 

    You've never been in my pocket, have you?  Well, I'm tucking you in there as I type....You have been an important part of my life the last two years....more than you know.....

    p

    Disturbed

    I am terribly disturbed to hear this Pat, God bless you and your wife. Denis

  • Ingrid K
    Ingrid K Member Posts: 813
    #7
    denistd said:

    Disturbed

    I am terribly disturbed to hear this Pat, God bless you and your wife. Denis

    not news we want to hear

    DAMN EFFING CANCER

    sad to hear this news Pat. 

    We still have to believe in miracles and continue to fight the good fight.

    Sending prayers your way.

     

     

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #8
    So sorry

    Pat, I am so sorry to hear this news.  You have been missed but Skiffin said that he had heard from you.  I truly appreciate the time that you have given us to clear up information that we just didn't quite get.  I guess that you have checked, but is my favorite, Cyberknife available for you?  I know that the drives take a toll on us.  Hopefully you will be able to stick closer to home soon.

  • Grandmax4
    Grandmax4 Member Posts: 723
    #9
    Oh No

    this news just makes me so sad..I have been wondering lately where you've been. I want you to know, your knowledge and wisdom, kindness and willingness to help anyone that needs it, has touched my heart. You are loved and appriciated by your fellow CSN, I say this in all honesty..you have been an inspiration to me

    Doctors have been wrong many times and I pray a miracle touches you

     

  • jim and i
    jim and i Member Posts: 1,788 Member
    #10
    Oh man this sucks. I still

    Oh man this sucks. I still believe in miracles though so praying you recieve one. Hope all goes well with feeding tube repair and chemo so you can move treatment closer to home. Keep us posted as you can and B;essings to you and your wife.

    Debbie

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #11
    pat, there are never any

    pat, there are never any "right" words when we get news like this.  i'm just sick over this and in disbelief.  damn cancer is never done!!  i'm so sorry you and your wife have to face this terrible disease again.  doctors don't know when the end is really here, only God does, so i'm going to pray for a miracle for you and your wife.  you have been awesome to everyone on this site and we look forward to you posting whenever you feel up to it.  we will all always keep you and your family in our thoughts and prayers.

    God bless you, Pat!

    dj

  • PJ47
    PJ47 Member Posts: 376
    #12
    Hi Pat

    I have been thinking about you and wondering why we had not heard from you, so now I know.  So sorry you have had another recurrance and have had so much trouble with your feeding tube.  Please keep writing when you are able and know you are treasured by many on this site.

     

    PJ

  • michdjp
    michdjp Member Posts: 220
    #13
    Pat,
    im so sorry to hear of

    Pat,

    im so sorry to hear of your troubles. I will keep you in my prayers. Stay strong.

    all my best,

    michelle

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #14
    Thoughts...

    Thoughts, prayers and memories your way....

    Hopefully they can maintain and control the bad stuff, and it'll give you a long time ahead with your wife and family..

    Prayers,

    John

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #15
    Path

    Pat,

    I am sorry to hear your report; it was a punch in the stomach.

    My first PEG would bring tears to my eyes it hurt so much.  I hope you get all your issues taken care of and reduce your drive time.

    Like the others, I have always loved your clarity of your answers and opinions. Numerous times you have helped to calm my nerves.

    I have enjoyed our talks about your hikes and often wished I could share (a short) one with you.  Your determination to get out and about and Skiffin’s fishing is a wake-up call to get out there and do something.

    Be good my friend,

    Matt

  • corleone
    corleone Member Posts: 312 Member
    #16
    I am deeply saddened to hear that.

    I always appreciated your posts, always to the point and very knowledgeable. Hope you’ll keep posting, as long as you can.

    I also noticed a few other people posting here are going through hard times. I feel kind of discouraged by this. We are always told to think positive and keep hope, but at times it’s incredibly difficult. 

    Sorry I can’t add anything to what others have already said; I am not really good with this.

     

  • donfoo
    donfoo Member Posts: 1,773 Member
    #17
    so sorry to hear

    Hey Pat,

    I am very sorry to hear the news of recurrence and the decision down a palliative path. Hopefully, you do get things in order so your treatment can be done close to home. Take care and please drop a note now and then. Thanks, Don

  • wmc
    wmc Member Posts: 1,804
    #18
    I'm so sorry to hear about the recurrence

    I'm so sorry to hear about the recurrence Pat. Thoughts and prayers are with you.

    Bill

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #19
    Stupid cancer

    So sorry to hear the news.  I know all about the inoperable and not curable.  For us it has been over a year but my husband is still here and it has been a good year and better yet since it has been a year.   All I can say is do what you want to do and when you get tired relax. 

    Prayers for you and your family.  I am not that much of a religious person but I have always said that no one knows but the man upstairs what outcomes will be.

    Wishing you peace and comfort -- Sharon

  • katenorwood
    katenorwood Member Posts: 1,912
    #20
    Hey Pat

    As with the others this comes as a blow to our whole community.  It is important to get your doctoring closer to home.  I pray this happens as soon as possible for you.  The drive is insane when you have to travel that distance, I know from experience.  Palliative care sounds so final in my head.  But we can and do have some very good days with the crappy ones.  I will be keeping you and your wife in my thoughts and prayers Pat.  Hugs sent !  Katie    

  • Duggie88
    Duggie88 Member Posts: 760 Member
    #21
    Pat

    I am rarely at a loss for words, but news such as ths leaves me speechless. We all stand with you with encouragement to fight like hell.

    Thoughts and Prayers

          Jeff

Discussion Boards