Checking In

Suez39

Hello to all H&N members:

Haven't been on forum in awhile, and just want to know how everyone is doing. Feeling better, or making any progress?

Unfortunately, I'm still the same. (:Was diagnosed with stage 2 BOT, tonsil, and lymph node cancer). Had large tumor that extended from the base if my tongue into throat). 2nd time with cancer. First one was vocal cord cancer with surgery. On permanent FT. Can't ear, barely sip water, and have breathing difficulties due to scar tissue build up on my airway. Have to wear face masks outside. Can't catch any colds or flus. Run high risk of throat swelling and choking to death. That's what my ENT and surgeon told me. My airway that I'm breathing through is the width of a drinking straw. But I grin and bear it. Nothing more they can do.

Anyway on a brighter note, I still maintain my sense of humor and try to be productive. My mom wrangled me to go with her to exciting bingo. Lol I find it a little boring  so I get sleepy. I sometimes miss numbers, and she daub one and say "That's been called". What's wrong with you? "No wonder your losing". I start laughing and get more awake. Hope to hear some responses. I miss everyone.

Hugs, 

Suez

 

wbcgaruss

Suez Glad to Hear From You

But sorry you are dealing with treatment leftovers. I am glad though that you are getting out with your Mom and spending time with her. And you still got a sense of humor-great-not always easy to maintain depending on your circumstances but glad you still got it sure is a help. Lucky you don't stay awake at bingo 100% or you might break the bingo house bank-Take Care-God Bless

ERomanO

Sorry to hear about your difficulties

Do you have any options to get your airway opened up?  That would seem to cause much anxiety.  Your mom sounds like she's a hoot.

 

tbret

Aren't Moms wonderfully supportive?

<grin>   Good ol', Mom! 

 

"What's wrong with you?" 

Ma, let me count the things that are wrong with me.

 

You must be doing pretty well (considering everything) to be *willing* to go to bingo. 

 

I am sorry to hear about your airway and discomfort.  The feeding tube thing... How do you feel about that situation?

As far as getting you a little more room, I'm guessing the ENT is saying something like, "I'd be crazy to cut on you," regarding expanding your airway or a trach or something.  That's just a guess.  Mine told me that about something different.

"Suez, don't catch a cold.  It'll kill you."

"THANKS DOC !  I suppose I'll have to give-up my volunteer gig at the kissing booth, then?"

I dunno... I know they all really do mean well and most of them actually do care.   Mine was praying for me behind my back.  I don't think that took the place of his medical education, but I appreciated him bringing all of his consultants in on my treatment.

Other than the obvious challenges you are facing physically, you said you are keeping a sense of humor.  That's good to know. 

Does that mean you are really "doing all right" in the big picture? 

What are you finding to pleasantly pass the day?

 

Suez39

Thank you everyone!

Wbcgaruss glad to hear from you. Not easy keeping up the humor but it helps me sometimes. Wish I could be like I use to be. 

ERoman, The options they gave me to open up my airway are too risky. They could cut scar tissue, but new scar tissue would form creating same problem. Other option would be to have a trach put in. Couldn't handle that plus permanent feeding tube. Don't want to live on tubes all over to survive. So really no hope for me.l in that respect. It does cause major anxiety and some sadness. Hard to accept never eating again and relying on FT. That's hard enough.

TBrett, I don't like the FT at all. I have a pump on my IV pole that regulayes how much liquid food is going in my stomach at a time.  My stomach very sensitive and cant have too much going in at once. I will throw up. The formula comes in cartons. I have to take 4 cartons a day. Each carton takes an hour and a half to complete. So it takes 6 hrs a day to complete my feeding!!! Way too long. Just feel like I'm existing. An empty shell of a person. Quality of life gone. Can't eat and breathing tough. Upon exertion like walking, doing housework etc your breathing increases which is impossible for me. So I have to walk slow, and can't really walk in stores long. I get short-winded. Think I was over-radiated. They gave way too much and that's why I have these issues. Also, my old ENT refused to give me dilation when treatments were done. They told me layer it was because he wanted to make sure cancer was gone. Thought it was back, had biopsy, no cancer. But still would not do dilation If he did, maybe I could eat a long time ago. Now, I'm suffering cause couldn't find ENT to do dilation. Ugh.. Sorry I seem to be Debbie downer but I'm not even retirement age yet. 

tbret

Suez39 said:

Thank you everyone!

Wbcgaruss glad to hear from you. Not easy keeping up the humor but it helps me sometimes. Wish I could be like I use to be. 

ERoman, The options they gave me to open up my airway are too risky. They could cut scar tissue, but new scar tissue would form creating same problem. Other option would be to have a trach put in. Couldn't handle that plus permanent feeding tube. Don't want to live on tubes all over to survive. So really no hope for me.l in that respect. It does cause major anxiety and some sadness. Hard to accept never eating again and relying on FT. That's hard enough.

TBrett, I don't like the FT at all. I have a pump on my IV pole that regulayes how much liquid food is going in my stomach at a time.  My stomach very sensitive and cant have too much going in at once. I will throw up. The formula comes in cartons. I have to take 4 cartons a day. Each carton takes an hour and a half to complete. So it takes 6 hrs a day to complete my feeding!!! Way too long. Just feel like I'm existing. An empty shell of a person. Quality of life gone. Can't eat and breathing tough. Upon exertion like walking, doing housework etc your breathing increases which is impossible for me. So I have to walk slow, and can't really walk in stores long. I get short-winded. Think I was over-radiated. They gave way too much and that's why I have these issues. Also, my old ENT refused to give me dilation when treatments were done. They told me layer it was because he wanted to make sure cancer was gone. Thought it was back, had biopsy, no cancer. But still would not do dilation If he did, maybe I could eat a long time ago. Now, I'm suffering cause couldn't find ENT to do dilation. Ugh.. Sorry I seem to be Debbie downer but I'm not even retirement age yet. 

Hey I asked

I asked because I wanted to know because I suspected you might not be real happy with the situation.  I am so absolutely incredibly sorry that you are having to cope with these things.  You have given us every reason to believe you will cope, though.

When I was first diagnosed and scared beyond all belief, an old, close friend of mine told me that he knew someone who had gone through this and I should talk to him.  I tried. 

This fella wasn't much interested in "talking with me" but was far more interested in telling me how I should just accept the limitations of the life I was likely to face after surgeries and treatments and how he didn't have any time for someone who couldn't face reality, and...  He did tell me about an award he had just won and how much he enjoyed going out with friends. Keep in mind my treatments had just barely started, I didn't know what was coming, and this idiot is telling me to "get over myself."  The advice might have been sound but his timing was awful.  He was 100% FT and had been for many years and he was entirely at peace with it. In fact, he might have been a bit proud of how much he didn't care. 

What I did get from our two interchanges was that apparently didn't miss eating and it didn't hold him back.  You know, I could be wrong, but I'll bet you will to be like that after a time.  It'll just be a fact - the way that all of the limitations we face as survivors just become facts. 

The things we lost are in the margins.  We kept the bulk of what makes life good.  No, really.

My own ENT told me that he'd have to be completely crazy to cut on me now, because there was such a risk of my not healing correctly.  Still, I wonder if there isn't someone out there who would tell you something different.  I do know someone who has "sub-glottic stenosis" and has been going for dialation for many years.  It stopped wiorking and the ENT stopped doing it (her neck was further damaged and they had to stop).  She still finds all sorts of things to do.  I'm not comparing you two, but I am saying that "it can be done."

I can tell you that you are definitely not an "empty shell of a person." I don't believe it for a second.  You can still help others like you said you like-to.  Everything doesn't require "wind."

I don't know... I've got a million thoughts and this is already entirely too long, but I really wish you wouldn't define your worth by how much physical work you can do.  As far as I am concerned, the fact that you've beaten this stuff *twice* means you are as tough as nails and have a lot to give to those who maybe aren't as tough as you are. 

Suez39

Tbrett

Thank you for your words of encouragement. Even though I'm not great healthwise, I still do try to help people. But I miss being productive. Working hard, which I have always done. Made me feel good, to put on my stylish outfits and go to work. My previous position was a HEAP intake specialist. Heap stands for home energy assistance program. I helped seniors with their emergency heating shut offs, broken furnaces, etc.. Very rewarding work. Miss it very much. 

Wonder what the woman you spoke of that has sub-glottic stenosis foes? Since I'm basically chained to an IV every day, hard to find things to do. Have to push IV stand around. Being disabled you are limited financially. Which I think many on here can relate to that. Another, if you have a strong support system - family, spouse, etc.. you can make it through the cancer battle better. I had b/f, but now getting tired of me cause I'm Sick I guess. More pressure on him. So except for few friends have to go it alone. God has been there, cause fir some reason I'm here. ( Doesn't want no more Italian is up in heaven!) Lol

Thanks for taking your time to respond.

Hugs, Suz

Drivingdaisy

tbret said:

Hey I asked

I asked because I wanted to know because I suspected you might not be real happy with the situation.  I am so absolutely incredibly sorry that you are having to cope with these things.  You have given us every reason to believe you will cope, though.

When I was first diagnosed and scared beyond all belief, an old, close friend of mine told me that he knew someone who had gone through this and I should talk to him.  I tried. 

This fella wasn't much interested in "talking with me" but was far more interested in telling me how I should just accept the limitations of the life I was likely to face after surgeries and treatments and how he didn't have any time for someone who couldn't face reality, and...  He did tell me about an award he had just won and how much he enjoyed going out with friends. Keep in mind my treatments had just barely started, I didn't know what was coming, and this idiot is telling me to "get over myself."  The advice might have been sound but his timing was awful.  He was 100% FT and had been for many years and he was entirely at peace with it. In fact, he might have been a bit proud of how much he didn't care. 

What I did get from our two interchanges was that apparently didn't miss eating and it didn't hold him back.  You know, I could be wrong, but I'll bet you will to be like that after a time.  It'll just be a fact - the way that all of the limitations we face as survivors just become facts. 

The things we lost are in the margins.  We kept the bulk of what makes life good.  No, really.

My own ENT told me that he'd have to be completely crazy to cut on me now, because there was such a risk of my not healing correctly.  Still, I wonder if there isn't someone out there who would tell you something different.  I do know someone who has "sub-glottic stenosis" and has been going for dialation for many years.  It stopped wiorking and the ENT stopped doing it (her neck was further damaged and they had to stop).  She still finds all sorts of things to do.  I'm not comparing you two, but I am saying that "it can be done."

I can tell you that you are definitely not an "empty shell of a person." I don't believe it for a second.  You can still help others like you said you like-to.  Everything doesn't require "wind."

I don't know... I've got a million thoughts and this is already entirely too long, but I really wish you wouldn't define your worth by how much physical work you can do.  As far as I am concerned, the fact that you've beaten this stuff *twice* means you are as tough as nails and have a lot to give to those who maybe aren't as tough as you are. 

Tbret

Thank you for cheering up Suz.  We message constantly & she is trying but having a rough time of it.  I too have severe Radiation damage.  I do understand how hard it is for her & it saddens Me.  I wish she could get better, wish We all could.  This Cancer is a real beast.  Others I know with different Cancers are doing 100% better than Us Rad & Chemo damaged.  Most had it just surgically removed, NO treatments so now thriving & living life to the fullest.  I, like ( but nowhere in her boat). Have multiple problems & cant do much.  As time goes on another problem crops up to deal with.  4 yrs Cancer free as of right, now out of the blue swelling on right side of neck.  Ent doesn't know if Salivary or lymph.  CT on Tuesday. But being alive only is not living.  I've always believed in Quality over Quanity.  Mine was so minor on left small patch of skin.  Salivary glands both appear dead, thyroid a mess, stomach a mess & eating getting harder.  May be back on Feeding tube.  Yes, I give Suz a ton of credit to try & keep going but for her, rough life.  She is a Sweetie.  Good luck to you, wish you the best outcome!   Hugs, Lisa (Daisy)