Swollen Epiglottis, when does this heal, its been 9 weeks ???

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Robyn64
Robyn64 Member Posts: 124
edited October 2014 in Head and Neck Cancer #1

Hi there,

 

I was getting my throat checked with a camera down the nose almost 2 weeks ago now. Was told that everything was fine and throat was healing well but my epiglottis is still swollen. Im assuming this is what gives me the feeling of something stuck in my throat ?

It has now been about 9 weeks since my treatment finished and Im reallly soooo tired of this sort throat and feeling of something stuck there , sometimes to the point of choking.

Could there be something wrong with my epiglottis ?

My mouth still hasnt healed from the thrush  after all these weeks, using difflam , a new medicine I have been given that is not even on the market in Oz yet but its in the UK , not sure if its in USA ? Its called Caphosol. I have been handed this medicine , free of charge , as much as I need , so the hospital can try and get it in , so they are using me to try and promote it. This is just taking way too long now , I am sooooo tired of it all. Mouth not healing , epiglottis swollen and my hearing is reallllllly bad and currently being checked.

I have started to eat more , I have no problem swallowing but am still limited. I am now adamant I want the peg out during next drs visit, cant stand it anymore.

I took a really bad fall a week ago. 2.30 am I got up to go to the bathroom and I fainted, hit my head first on coner of vanity , then head first on the floor. I waited 2 .5 hrs befoe we  took off to emergency at hospital at 5 am. Husband thought he had stopped the bleeding. Drs used a special glue to fix 4 cm gash at back of head. They checked my bloods and said I hadnt been eating enough. Im now force feeding myself as I still have no appetite eithe , 9 weeks on. Please when does it get better ?????

Im really tired and starting to cry more.

Robyn

 

Comments

  • jackflash22
    jackflash22 Member Posts: 524 Member
    #2
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    Choking feeling

    it could be the thrush that's causing the "something" in you throat, it can be quite thick and goes down your throat, I had a similar problem with really thick jelly like moucous it sticks behind my epiglottis makes it swollen. when I can get rid of it,it feels normal till the next time. I don't get mucous all the time like when you first finish rads but what I do get is the trapped jelly mucous. Have you tried gargling. 

  • Robyn64
    Robyn64 Member Posts: 124
    #3
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    jackflash22 said:

    Choking feeling

    it could be the thrush that's causing the "something" in you throat, it can be quite thick and goes down your throat, I had a similar problem with really thick jelly like moucous it sticks behind my epiglottis makes it swollen. when I can get rid of it,it feels normal till the next time. I don't get mucous all the time like when you first finish rads but what I do get is the trapped jelly mucous. Have you tried gargling. 

    thanks

    Hi there, 

    I do gargle quite a bit using the caphosol and difflam. 2 days ago I also bought the double strength difflam in a spray to use whilst Im out. 

    Not sure what else to do. Can thrush take this long to heal. Just soooo over it. My mouth doesnt seem like my old mouth, just different with this thrush. I dont have problems swallowing food though but must smaller than what I usex to eat, cant quite eat certain things properly yet like hot chips, cant eat anything containing tomato at all because of the acid content in tomato. 

    Is it normal to have thrush on tongue and possibly part way down tongue for so long ??

    Thanks,

    Robyn

  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
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    Patience is the mode....

    to get you through the healing part of all this.  At barely 2 months out, you're still a "baby" in the getting better part of this disease.  I know it feels like forever, but healing takes longer....a LOT longer than the treatment did. 

    Chances are, they'll make you hold onto your tube till you start gaining weight.....If you have a pair of heavy work boots, wear them to your next appointment.  That's what I did, and it was the only way I managed to get the go ahead to remove the tube (that's right...I cheated!! Surprised).  It is a PITA after treatment, and I sure understand your being tired of it.

    Hang in there.....things really are going to get better!!  Look back two months ago....are things a bit better now?  The same thing will happen when you look back at 4 months out....you'll look to October and say..."hell yeah, I'm better than I was two months ago."

    p 

  • hwt
    hwt Member Posts: 2,328 Member
    #5
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    phrannie51 said:

    Patience is the mode....

    to get you through the healing part of all this.  At barely 2 months out, you're still a "baby" in the getting better part of this disease.  I know it feels like forever, but healing takes longer....a LOT longer than the treatment did. 

    Chances are, they'll make you hold onto your tube till you start gaining weight.....If you have a pair of heavy work boots, wear them to your next appointment.  That's what I did, and it was the only way I managed to get the go ahead to remove the tube (that's right...I cheated!! Surprised).  It is a PITA after treatment, and I sure understand your being tired of it.

    Hang in there.....things really are going to get better!!  Look back two months ago....are things a bit better now?  The same thing will happen when you look back at 4 months out....you'll look to October and say..."hell yeah, I'm better than I was two months ago."

    p 

    Caphosol

    I fIrst had Caphosol in the US back in 2012.  Had horrific sores on my lips during chemo and rads. I was told it was extremely expensive but my insurance did cover. Cant say with any certainty if it kept it from getting worse or not but it was not a cure all. Encourage you not to give up the feeding tube too soon. I was insistent so know how you feel But malnutrition and dehydrarion are nothing you want too deal with. hope you will rethink.

    Good luck

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #6
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    better soon

    Robyn,

    Hang in there, it does get better.  Remember to stay well hydrated and get plenty of nourishment, you have to keep working with your body, even when you do not feel like it.

    I heard of one guy who got caught with weights in pockets, trying to get his PEG out early.  Sounds like P51 with boots might do the trick.

    Moving slowly forward  on H&N time.

    Matt

  • Robyn64
    Robyn64 Member Posts: 124
    #7
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    Thanks everyone

    After reading comments , I might have to rethink getting tube out , am worried about losing more weight. I have just weighed myself and I seem to have lost a tad more, trying so hard not to.

    But havent used the tube in the last 4 days or so other than flushing it. I might have to resort to 1 bottle a day again to ty and get more nourishment.

    Reading comments and looking back 2 months ago, I am certainly so much better than 2 months ago , yes it is a very slow process, I just hope I dont faint anymore and injure myself again, nearly fainted again yesterday, lucky there was a chair to grab and sit. I really have to get this eating in check. But with thrush  in mouth, makes it a little uncomfortable  although my actual swallowing seems to be quite fine.

    Thank you all for your comments , does make me feel better. Cant wait for my throat and mouth to heal, I will have a big party for me , myself and I :-)

    Robyn

  • yensid683
    yensid683 Member Posts: 349
    #8
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    Fainting

    I too had a fainting issue during recovery, some 5 weeks after rads ended I got up to use the bathroom at around 2 in the morning as well.  I remember getting off of the bed but the next cognitive memory was as my nose crunched into the floor.  Stupendous bloody nose!

    I had an emergency visit with my oncologist who found that if I got up quickly my BP would drop, but a blood test showed me to be dehydrated.  I was told to add a couple of liters of water through my tube, and it did make a difference.

    I can sympathize with the feeling of something in your throat gagging you.  I had it for almost 3 months post rads and it was due more from the thick mucus rather than the epiglottis.  I let my doctors know and was told to keep hydrated, keep using the tube and things would get better.  they do.

    I got rid of my tube once I started taking all my calories by mouth, my weight didn't really move up all that much but I kept a chart of what I was eating.  I was over 3000 calories a day and still just holding weight.  healing takes a lot of calories evidently.  I pushed to have it out as well and it took the chart to make the point.

    Peggy and I parted ways some 5 months after she and I 'met'. 

    Hang in there, it gets better.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #9
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    Robyn64 said:

    Thanks everyone

    After reading comments , I might have to rethink getting tube out , am worried about losing more weight. I have just weighed myself and I seem to have lost a tad more, trying so hard not to.

    But havent used the tube in the last 4 days or so other than flushing it. I might have to resort to 1 bottle a day again to ty and get more nourishment.

    Reading comments and looking back 2 months ago, I am certainly so much better than 2 months ago , yes it is a very slow process, I just hope I dont faint anymore and injure myself again, nearly fainted again yesterday, lucky there was a chair to grab and sit. I really have to get this eating in check. But with thrush  in mouth, makes it a little uncomfortable  although my actual swallowing seems to be quite fine.

    Thank you all for your comments , does make me feel better. Cant wait for my throat and mouth to heal, I will have a big party for me , myself and I :-)

    Robyn

    robyn, keeping the tube a

    robyn, keeping the tube a little longer may not be a bad idea.  you really should if you are still losing weight.  as for healing, you MUST be patient.  it takes months for most to get to feeling half way decent again.  the recovery does take longer than tx so please try to look for improvements in monthly increments and not days or weeks.  you will get there it will just take time.  your body has been through a lot and it is going to take a lot for it to fully recover.  hang in there, you're on the right path.

    God bless you,

    dj

  • Gabba3t
    Gabba3t Member Posts: 1
    #10
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    It gets better
    I cheated to get my tube out, I had to in order to feel normal again. Steel toed boots and I would carry my pistol in a holster under my shirt (it worked). Boost/Ensure (usually the cheap store brand meal supplement) and Mashed potatoes and gravy were all I could eat for nearly the first 6 months and it took nearly a year to start gaining weight back, 2 years to have most of my taste back. I am at 2 1/2 years out and I am just now able to eat mildly spicy food without issue. It will get better, just takes alot of time. I still keep those drinks around for breakfast, my jaw is usually pretty tight in the am and that help get the day started, sometimes for lunch too. Swallowing can still be an issue, make sure to take small bites and chew really well when you are able too.

    The hard part is over, it only gets better.

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