Update

hwt
hwt Member Posts: 2,328 Member
edited October 2014 in Head and Neck Cancer #1

I had surgery 09/19 a pectoral flap. Titanium was removed and fibula placed in 2012 saved. Follow up showed fistula still present. Suggested g tube and nothing by mouth and hyperbsrics. felt it would heal but months not weeks. came back to STL to get tube. Unable to tolerate jevoty. Hospitalized again. Doing ok now on Ensure Plus but was sent from hospital to skilled nursing center due to malnutriTigon and dehydration. BP was 70 over 38 at one point. BP ok now and I have gained five pounds back. I will likely be here a few more days. The ENT here in STL feels the fistula will not heal and that the bone from 2012 needs to come out. He thinks hyperbarics at this time would be a waste of my time. Finally getting ice chips bit that is it by mouth. Difficulty getting energy back. See ENT Tuesday. Quality of life issues right now with no food or water, little energy, speech issues, and sadness. Praying for improvement.

Comments

  • KTeacher
    KTeacher Member Posts: 1,103
    So sorry

    Thank you for posting the update but so sorry for what is happening.  HBOT didn't seem to help me with the fissure in my mouth, hopefully it helped with blood supply and veins.  I've had a crown pop off next to the opening and the wisdom tooth is just hanging by a thread.  I have an appt. at the end of the month.  Have you had to be on PEG feeding before?  I never had to.  Hope skilled nursing will be able to get you back on your feet.  Please let us know what the doctor says on Tuesday.

  • katenorwood
    katenorwood Member Posts: 1,912
    thinking of you

    hwt,

    Darn it, when it rains it pours.  Take your time, and get your strength back.  I'm so sorry to hear of all you're enduring.  Only warmest thoughts and positives sent your direction !  Hugs sent !  Katie

  • hwt
    hwt Member Posts: 2,328 Member
    KTeacher said:

    So sorry

    Thank you for posting the update but so sorry for what is happening.  HBOT didn't seem to help me with the fissure in my mouth, hopefully it helped with blood supply and veins.  I've had a crown pop off next to the opening and the wisdom tooth is just hanging by a thread.  I have an appt. at the end of the month.  Have you had to be on PEG feeding before?  I never had to.  Hope skilled nursing will be able to get you back on your feet.  Please let us know what the doctor says on Tuesday.

    Yes

    Had a g tube in 2012 til finished first rads and Cisplatin. I was encouraged to eat and drink with it then. I am freaking out this time because they said nothing by mouth but then relented to ice chips. I know I could eat and get some down and lose some thru the fistula But they want my mouth kept as dry as possible to assist in healing. One doc says will heal with lots of time, other says it,s not going to happen without intervention. Who to believe? As weak as I am, I couldn't do surgery right now anyway. 

  • Kritter
    Kritter Member Posts: 147
    Hugs to you !

    Praying you will get through this. If they are against you taking ice chips you might ask for a very damp sterile wash cloth to suck on and wet your lips. I had to do that with a surgery once and it did help me. Sending you lots and lots of Prayers and Hugs!  Kritter

  • wmc
    wmc Member Posts: 1,804
    So sorry to hear HWT

    You have been through so much. Thoughts and payers.......and good MOJO too.

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    train full of good mojo

    Candi,

    So sorry about what is happening, I feel for you.

    My wish for you is comfort and to keep moving forward (be it carefully).

    Matt

  • Sending you good wishes for

    Sending you good wishes for speedy improvements xxx We are stronger than we think we are xxx

  • phrannie51
    phrannie51 Member Posts: 4,716
    Brave Candi!

    Decided to mull this over a bit before I answered.  One Dr. says it will heal with time, one Dr. says intervention is needed.....You keep doing your Ensure Plus, keep gaining some strength, getting all the sleep you need....and make a decision down the road when you feel better.  The fistula problem doesn't need to be decided on tomorrow or the end of the week. 

    I'm praying for you.........and keeping you tucked in my pocket.....

    p

  • Hondo
    Hondo Member Posts: 6,636 Member
    Sorry to hear the news

    But don’t give up, keep positive and keep your focus, you are still alive and anything is possible. Remember I was told back in 2006 I only had 6 months to a year, well I am still here and still working full time. Keep positive, keep your focus, and as for me I keep my Faith in Gods hands

    Praying for you

    Tim Hondo

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member

    Brave Candi!

    Decided to mull this over a bit before I answered.  One Dr. says it will heal with time, one Dr. says intervention is needed.....You keep doing your Ensure Plus, keep gaining some strength, getting all the sleep you need....and make a decision down the road when you feel better.  The fistula problem doesn't need to be decided on tomorrow or the end of the week. 

    I'm praying for you.........and keeping you tucked in my pocket.....

    p

    completely agree with this

    Just focus your attention on what you can do, not what you cannot do.  I've had a G tube for 9 months now.  Not a chance of ever getting it out.  I can't talk, can't eat, and I am fighting a losing battle on keeping my weight up, the chemo just makes me too sick for too many days a month.   But I'm doing pretty good despite all this.  Jevity is a problem for me too.  It is much harder to tolerate than the other liquids i have used, which means nausea and vomiting till I'm pretty tired of nausea and vomiting.    Keep the faith, and just do the things you can.  You will feel better.

     

     

    pat

  • hwt
    hwt Member Posts: 2,328 Member
    Hondo said:

    Sorry to hear the news

    But don’t give up, keep positive and keep your focus, you are still alive and anything is possible. Remember I was told back in 2006 I only had 6 months to a year, well I am still here and still working full time. Keep positive, keep your focus, and as for me I keep my Faith in Gods hands

    Praying for you

    Tim Hondo

    When I needed it most

    can't tell you how much your posts mean to me today. I saw the STL ENT and he scheduled everything 2nd week of Nov. Actually he scheduled next week and I said no. No harm in seeing what a couple more weeks bring. Still in rehab center. My sister and doctor feel I could benefit from antidepressants. I want to try to shake these bad feelings on my own first. I lost an additional 30 pounds since April and did gain 5 back this week. Thank you all for the encouragement and for reminding me to be positive for what I can do. May God bless each of you

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    hwt said:

    When I needed it most

    can't tell you how much your posts mean to me today. I saw the STL ENT and he scheduled everything 2nd week of Nov. Actually he scheduled next week and I said no. No harm in seeing what a couple more weeks bring. Still in rehab center. My sister and doctor feel I could benefit from antidepressants. I want to try to shake these bad feelings on my own first. I lost an additional 30 pounds since April and did gain 5 back this week. Thank you all for the encouragement and for reminding me to be positive for what I can do. May God bless each of you

    You are

    simply amazing!  Prayers for you constantly!  Thank you for being so kind, upbeat and an encouragement to so many.  You'll never know how much you helped me! 

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    hwt said:

    Yes

    Had a g tube in 2012 til finished first rads and Cisplatin. I was encouraged to eat and drink with it then. I am freaking out this time because they said nothing by mouth but then relented to ice chips. I know I could eat and get some down and lose some thru the fistula But they want my mouth kept as dry as possible to assist in healing. One doc says will heal with lots of time, other says it,s not going to happen without intervention. Who to believe? As weak as I am, I couldn't do surgery right now anyway. 

    candi, i'm so sorry you are

    candi, i'm so sorry you are again going though so much.  I also could NOT take the jevity, it made me puke my guts up.  had to go to ensure.  as for the fistula, i also had one and was forbidden to eat or drink anything for 6 months.  at one point the docs even surgically put a special tube down my throat to redirect my spit from going down my throat and through the fistula because it couldn't heal due to that.  well, it still didn't heal and after 6 months they had to do surgery to close it and do a skin graph as my neck skin was too weak to sew due to previous rads.  several months after that surgery i was allowed to eat and drink.  we had to do a swallow test first tho to ensure the fistula was closed and what i swallowed wasn't going out the fistula.  today i am doing fine.  it has been 2 years since the surgery to fix the fistula.  i am also eating everything i want.  i hope the one doc is right and that it heals on its own and that you are able to eat very soon.  keeping you in my thoughts and prayers, Candi.

    God bless you,

    dj

  • jim and i
    jim and i Member Posts: 1,788 Member
    So sorry to hear this. I am

    So sorry to hear this. I am praying for you to improve quickly and your quality of life to improve.

    Debbie

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    hwt said:

    When I needed it most

    can't tell you how much your posts mean to me today. I saw the STL ENT and he scheduled everything 2nd week of Nov. Actually he scheduled next week and I said no. No harm in seeing what a couple more weeks bring. Still in rehab center. My sister and doctor feel I could benefit from antidepressants. I want to try to shake these bad feelings on my own first. I lost an additional 30 pounds since April and did gain 5 back this week. Thank you all for the encouragement and for reminding me to be positive for what I can do. May God bless each of you

    candi, you have shown so much

    candi, you have shown so much strength and such a positive attitude that you are simply amazing.  you are always in my thoughts and prayers.  i hope you are able to get the bad feelings under control but if you need meds to help, there is NO shame in that.  do what you have to so you can feel better.  please always know that we are here for you, friend.

    God bless you,

    dj