major set back/ anyone relate

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dennis318
dennis318 Member Posts: 349 Member
edited March 2014 in Head and Neck Cancer #1
After a fairly decent 4th, I started to feel a little poorly starting Saturday, by Tuesday, I was feeling very light headed, and having a hard time breathing, I recently had my trach removed from Stage 4 throat cancer, and have been fightig with this for over a year now, 3 rd time of going in an clearing things up, well the left side larnx quit totally and the antiobiodtics and the hyperberic chamber treatments haven't work, I suffer as told by thr Doctors a over radiation burn to my voice box, larnyx etc.....and we can't seem to get it healed, I had to have the trach replaced, and lsten to a bunch of doctors trample threw the room at the hospital i was at, and ask me questions all day and all night, so for the 3rd time I am home trying to recoup from major spitting on towels to blowing my nose and gagging all night one more time, I wish we could figure out how, why, and the cause for all this, we are holding to hope, I have vocal chords, but have had others approach to install windows and curtains and a CD changer in my throat, might as well throw it in, so 3 more weeks till the doctor sees me again, for another ride down the nose and throat and well it looks a little better, and see you again in 3 weeks, there has to other stories pretty close to mine, i have 5 doctors, supposedly top notch, next!!!I'm tired of Cancer...If I wouldn't had done what i did Tuesday, and listen to my boss, i would be down the street at local father and sons funeral home, they told me i would have suffocated to death, Why Can't some one fix me????Dennis, are there any medical solutions where a cave in the front of yout throat is needed, why would you put another hole in there in the first place, i have a mouth and a nose, and one throat?

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  • staceya
    staceya Member Posts: 720
    #2
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    I'm sorry to hear about all
    I'm sorry to hear about all that. Is your trach bak in the same place, or in a new location? Is there a facility near you that specializes in trachs?

    Take care
    Stacey
  • Hal61
    Hal61 Member Posts: 655
    #3
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    Hold on to hope
    Dennis, your year has been very tough, and though I haven't been tested at the level you have, I can understand your frustrations. My hopes and prayers for your continued resolve, and for your situation to improve.
    Hal
  • Irishgypsie
    Irishgypsie Member Posts: 333
    #4
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    Hal61 said:

    Hold on to hope
    Dennis, your year has been very tough, and though I haven't been tested at the level you have, I can understand your frustrations. My hopes and prayers for your continued resolve, and for your situation to improve.
    Hal

    I'm praying for you!
    Dennis, I'm not sure why you are having such a set back? I'm a little confused about What the doctors have said of your difficulties? Is it that your throat isn't healing because of constant hacking? I'm so sorry bud, it's so frustrating you read some people breezing through this and others having such a rough go. It kind of makes you wonder about these doctors and what they really know about this horrible disease! I'm praying for you bro!

    Charles
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #5
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    Damn, Dennis, I am very,
    Damn, Dennis, I am very, very sorry to hear this. I don't understand why the docs can't find the problem. It is just unbelievable!!! One thing I see here tho is that you are a lot tougher and stronger than when you started. I know that doesn't comfort you right now but maybe it will help you get thru this set back. I am still prayers for you Dennis, and I will continue to do that. I hope you have a decent day today and an even better one tomorrow. Hang in there.
    God bless you, Dennis,
    debbie
  • dennis318
    dennis318 Member Posts: 349 Member
    #6
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    debbiejeanne said:

    Damn, Dennis, I am very,
    Damn, Dennis, I am very, very sorry to hear this. I don't understand why the docs can't find the problem. It is just unbelievable!!! One thing I see here tho is that you are a lot tougher and stronger than when you started. I know that doesn't comfort you right now but maybe it will help you get thru this set back. I am still prayers for you Dennis, and I will continue to do that. I hope you have a decent day today and an even better one tomorrow. Hang in there.
    God bless you, Dennis,
    debbie

    Thanks Guys
    No this was a freak of nature thing i guess they would say....the left side of the larynx went dead, like someone unplugged it, so when it viberates, it lays there, well the first doctor thought it was sinus, nose and throat, missed it 5 times, sent me to Nashville, to a clinic for the Music Stars...sorry No Achy Breaky Heart Here..and found a stage 3 tumor, on my vocal cords, they opted to save the cords, but i have r/s larnyx with no working l/s....i did radiation, chemo,lost 62 lbs...and now are doing hyperberic chamber visits, i quit it all this week after the left closed up, They reinserted the trach, i was nearly suffocated when they took me to Nashville Tuesday, I could have died. What the deal comes down too, the radiated me so hard for cancer cells, they burnt everything up, to get the bad, and also took the good with it to heal the damage, like driving the hot new cadillac, and they forget to give you gas, and you ain't getting any, i just passed a year of this, and i get is we'll scope in a couple weeks, it opens alittle, no tumor as we can see, Now when they where down there this week putting in this plastic ice cream scooper in would you not take another biopsy?????I still believe they have acure for cancer in our world today, but the thought of a cure would be total devastation to our society for money, I have filed for dissability, and that is in progress, by boss, bless her heart is going to keep me on for a few hours to help her out. Has anyone got any idea why all this trama from a dead l/s layrnx...and why we can't fix things like this, instead of having to clean out eveything and lower our means....cancer sucks, I have everyright to be pissed and going threw the chain of frustration I am going threw, We are in the same boat, Ok, I have my fall out for the day. Thanks for your attention. P.S, I am a verynice person that cares....LOL..Later Dennis
  • DJG1
    DJG1 Member Posts: 121
    #7
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    dennis318 said:

    Thanks Guys
    No this was a freak of nature thing i guess they would say....the left side of the larynx went dead, like someone unplugged it, so when it viberates, it lays there, well the first doctor thought it was sinus, nose and throat, missed it 5 times, sent me to Nashville, to a clinic for the Music Stars...sorry No Achy Breaky Heart Here..and found a stage 3 tumor, on my vocal cords, they opted to save the cords, but i have r/s larnyx with no working l/s....i did radiation, chemo,lost 62 lbs...and now are doing hyperberic chamber visits, i quit it all this week after the left closed up, They reinserted the trach, i was nearly suffocated when they took me to Nashville Tuesday, I could have died. What the deal comes down too, the radiated me so hard for cancer cells, they burnt everything up, to get the bad, and also took the good with it to heal the damage, like driving the hot new cadillac, and they forget to give you gas, and you ain't getting any, i just passed a year of this, and i get is we'll scope in a couple weeks, it opens alittle, no tumor as we can see, Now when they where down there this week putting in this plastic ice cream scooper in would you not take another biopsy?????I still believe they have acure for cancer in our world today, but the thought of a cure would be total devastation to our society for money, I have filed for dissability, and that is in progress, by boss, bless her heart is going to keep me on for a few hours to help her out. Has anyone got any idea why all this trama from a dead l/s layrnx...and why we can't fix things like this, instead of having to clean out eveything and lower our means....cancer sucks, I have everyright to be pissed and going threw the chain of frustration I am going threw, We are in the same boat, Ok, I have my fall out for the day. Thanks for your attention. P.S, I am a verynice person that cares....LOL..Later Dennis

    VENTING IS GOOD
    Dennis,
    You deserve to vent. you have been through a lot. You are a strong person and I pray that things will begin to improve for you. Did anyone ever tell you, that you look like David Bromsfield...I think that is how you spell his name. If you dont know who he is, he is a celeb and he is very cute. lol I just wanted want give you a chuckle today, you deserve one. Hoping that tomorrow is better.
  • Pumakitty
    Pumakitty Member Posts: 652
    #8
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    Sorry
    Dennis,

    I am sorry thanks have been so rough for you. Stay positive they will get better.

    Pumakitty
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #9
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    dennis318 said:

    Thanks Guys
    No this was a freak of nature thing i guess they would say....the left side of the larynx went dead, like someone unplugged it, so when it viberates, it lays there, well the first doctor thought it was sinus, nose and throat, missed it 5 times, sent me to Nashville, to a clinic for the Music Stars...sorry No Achy Breaky Heart Here..and found a stage 3 tumor, on my vocal cords, they opted to save the cords, but i have r/s larnyx with no working l/s....i did radiation, chemo,lost 62 lbs...and now are doing hyperberic chamber visits, i quit it all this week after the left closed up, They reinserted the trach, i was nearly suffocated when they took me to Nashville Tuesday, I could have died. What the deal comes down too, the radiated me so hard for cancer cells, they burnt everything up, to get the bad, and also took the good with it to heal the damage, like driving the hot new cadillac, and they forget to give you gas, and you ain't getting any, i just passed a year of this, and i get is we'll scope in a couple weeks, it opens alittle, no tumor as we can see, Now when they where down there this week putting in this plastic ice cream scooper in would you not take another biopsy?????I still believe they have acure for cancer in our world today, but the thought of a cure would be total devastation to our society for money, I have filed for dissability, and that is in progress, by boss, bless her heart is going to keep me on for a few hours to help her out. Has anyone got any idea why all this trama from a dead l/s layrnx...and why we can't fix things like this, instead of having to clean out eveything and lower our means....cancer sucks, I have everyright to be pissed and going threw the chain of frustration I am going threw, We are in the same boat, Ok, I have my fall out for the day. Thanks for your attention. P.S, I am a verynice person that cares....LOL..Later Dennis

    Dennis, I don't doubt for a
    Dennis, I don't doubt for a second that you are a very nice person. And you also have the right to be pissed. I fully understand your emotions. In fact, it makes me think of Chefdaddy. He is havign all his trouble due to being over radiated and as you know from reading, he has definitley been to hell and back. I pray that your over radiation is nothing to compared to his.
    Let today be the day you allow yourself to be angry and tomorrow be the day you start your fight again. Dennis, I'm truly very sorry for all the hell you've gone thru. Please hang in there, the better days will definitly come.
    God bless you and I'm sendig you prayers,
    debbie
  • lady4darknight
    lady4darknight Member Posts: 90 Member
    #10
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    Pumakitty said:

    Sorry
    Dennis,

    I am sorry thanks have been so rough for you. Stay positive they will get better.

    Pumakitty

    It's Ok
    Dennis, I am so sorry everything has been so rough for you and pray it will get better. But believe me it is way okay to vent. That is part of our healing process. I too have a trache and have had to had it replaced once and can't wait till it is gone. My life has been turned upside down by this crap but I refuse to let it get me...you too will beat this. Hopefully tomorrow will be a better day.

    Debbie
  • dennis318
    dennis318 Member Posts: 349 Member
    #11
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    lady4darknight said:

    It's Ok
    Dennis, I am so sorry everything has been so rough for you and pray it will get better. But believe me it is way okay to vent. That is part of our healing process. I too have a trache and have had to had it replaced once and can't wait till it is gone. My life has been turned upside down by this crap but I refuse to let it get me...you too will beat this. Hopefully tomorrow will be a better day.

    Debbie

    Thanks Debbie
    There's people in this world you wish they lived next door to relate, i thank you, and hope this trach is not a permanent fixture, the doctor sits there like I don't know, but can't offer a end with out more taking something out...please don't remove anymore...i don't care if i can't speak, i want life as easy as possible, and to left alone from doctors, I'm tired...I did recieve a small bit of good news...i got my dissability approved, the downer is that my first check won't be here till November, I don't understand our government, why November, and no reimbursement for the filing date. Never abused the system, always worked, Life is so strange...but i thank god at least i got a little help...Thanks again Debbie. you sound like a great person..Take Care. Dennis. P.S I leave to see my family in upper Michigan for 5 days. the doctors are giving me a rest, i gained 7lbs, and my family await to try to fatten me up...lol
  • dennis318
    dennis318 Member Posts: 349 Member
    #12
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    dennis318 said:

    Thanks Debbie
    There's people in this world you wish they lived next door to relate, i thank you, and hope this trach is not a permanent fixture, the doctor sits there like I don't know, but can't offer a end with out more taking something out...please don't remove anymore...i don't care if i can't speak, i want life as easy as possible, and to left alone from doctors, I'm tired...I did recieve a small bit of good news...i got my dissability approved, the downer is that my first check won't be here till November, I don't understand our government, why November, and no reimbursement for the filing date. Never abused the system, always worked, Life is so strange...but i thank god at least i got a little help...Thanks again Debbie. you sound like a great person..Take Care. Dennis. P.S I leave to see my family in upper Michigan for 5 days. the doctors are giving me a rest, i gained 7lbs, and my family await to try to fatten me up...lol

    Question Debbie
    My trach was put in again last Tuesday, it really is uncomfortable, feels tight, and i can actually feel in in teh back of my thraot, i eat small pieces, and slowly, aan swallow, but i swear i can feel it...also, when i talk the thing out, it's nasty, I used a gauze with perioxide to clean and gel to get the thing back in with another gauze to back it...any suggestions, it also feels hot at times, like a furnace, is this normal????Thanks Debbie, Dennis
  • lady4darknight
    lady4darknight Member Posts: 90 Member
    #13
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    dennis318 said:

    Question Debbie
    My trach was put in again last Tuesday, it really is uncomfortable, feels tight, and i can actually feel in in teh back of my thraot, i eat small pieces, and slowly, aan swallow, but i swear i can feel it...also, when i talk the thing out, it's nasty, I used a gauze with perioxide to clean and gel to get the thing back in with another gauze to back it...any suggestions, it also feels hot at times, like a furnace, is this normal????Thanks Debbie, Dennis

    Trache
    Dennis, Sometimes there is swelling to the throat when the trache is replaced. This could be why you feel it. If it is uncomfortable for more than a few days then I would let my doc know in case the placement is off. Also, what size and kind of trache do you have? I have a Jackson metal size 5 and it is much more comfortable then the plastic Shiley's and is a little shorter in the cannula part. As for feeling tight, that is the muscles in your throat responding to the trache. This should ease up. It will be nasty when you clean it. This is normal. It is in your throat and is your airway. So it will always be full of phlegm and gunk. I use a brush, gauze, and hot water to clean mine and always use gel to replace it. I even carry a tube with me and cleaning stuff because I have to go clean it when I am out. I remember freaking a woman out in the restroom of a Springfield Cardinal game last year when I had to go clean it out during the game. As for feeling hot..it is like I said your airway and it is also in our body. It can react to your body temp. I hope this has helped. Let me know how it goes. Debbie

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