Reality check

Suez39

Hello everyone.

Wanted to let you guys know that I had doctors appt today to address my breathing issue. ( Paralyzed right vocal cord blocking airway.) Well this is a new doctor for me who I actually liked! He''s compassionate, helpful, and caring. Very rare combination for Specialist. He''s a doctor, professor, and surgeon. He scoped me. Said I'm breathing through a extremely small space in my voice box. In order to dilate my esphogus they would have to put trach in my neck. Also even with dilation I still might not be able to swallow. I have a lot of scar tissue and esphogus very narrow and they can only stretch it a little at a time. I'm on FT now. Trach for me would be permanent. Also FT would be permanent also.

Other option - Do nothing and run the risk of catching laryngitis or infection from people who are sick. If I catch something my throat would swell up and I would choke to death. 

I was so heartbroken when he laid this on me. I will not be on a FT plus have trach forever. So I'm thinking of asking for masks, and possible med for fighting off sickness. I run a high risk, but better than having useless surgeries that I have low percentage of helping me. I miss eating a lot which I'm sure all of you do too. I sometimes will put something in my mouth, chew it and spit it out. I know it's a tease but I enjoy the flavor at least. My friends laughed at me when I was sucking on crackers. Hey, it's something. The high dose radiation I received really damaged the structures in my throat. I feel defeated. I feel like I lost my battle with radiation effects. Angry, sad, frustrated. Quality of life gone. People say life is worth living. Sorry if I seem pessimistic, but when you can't eat, drink, talk, (voice just about gone), work to earn decent money, or excersize, tell me Whst''s left??? 

Before I left my doctors office, he said " I'm sorry, I wish I could of given you some good news, but I want to be truthful.";" I will be thinking about you, and if you have any more questions please contact me." He was being precise and straight forward. Which I appreciated. Also this might help somebody out there. I asked for a picture of my voice box where my vocal cords are. It shows scar tissue and gives good picture of how unhealthy throat is. They put it on a disc and give it to you. It's from a high definition camera that is very clear and you can see the fine areas of your throat. So when or if you get a 2nd opinion, you can give it to your new doctor. Just a suggestion. I know they can scope you and see, but this gives them a different angle maybe. 

Sorry I vented, but wanted to share what happened to me. Feel like such a baby considering how some of you probably have it way worse than me.

Thanks for reading!! 

Hugs, Susie

 

debbiel0

Sorry to hear you are facing

Sorry to hear you are facing a troubling time, not the story you wanted to,hear for sure. You have every right to vent! That is why are here. You can be brutaly honest with us, your feelings, your fears, your frustration. You can gives us all your worries. We are here to take them on with you, for you, and walk the line with you. You do not need to apologize to us!  We are all here because we need support, or want to give supportn any way we can. ♥️

ProustLover

No one is prepared for that

No one is prepared for that kind of bad news when it comes, but you've shown how strong you can be.  Maybe some comfort knowing others are out there with their own battles, and that they do understand.  I am a caregiver and not a survivor, but I know what I see, and I feel deeply what you must be going through. I respect the hard choices you're making.  Take care Suez39 - we're rooting for you.  

Sabrina23

Stay Strong Susie

Stay Strong Susie don't give up please I am praying for a miracle that you throat opens up somehow someway a little more to give you some relief.  Prayers are powerful.  God is with us all keeping us in his care and watching over us and I know he will be with you to give your strength and help heal and breathe easier. I am so sorry you have to go thru this Susie.  Always share with us your feelings because we are here to provide support and help anyway we can.  DebbieIO said it best.  Sending Love and Lots of Hugs your way!

bugsyboy

Never Say Never

When you're going through what you're going through, it's important to like your doctor.  Is this doctor a second opinion?  Would you be interested in getting a second opinion?  Has this doctor ever seen what you presented before?  Does he know of anyone who has?  As widespread as H&N Cancer is, someone else has been through what you're going through. When my Cancer presented five years ago, the doctors in North Georgia (local ENT, Oncologist, etc.) wanted to throw the kitchen sink at me for treatment.  My second opinion (from a Cancer facility) said I needed 33 radiation treatments.  No more surgery and no chemo.  Five years later I'm glad I got the second opinion.

Sorry you're going through this.  Good luck moving forward.

Bugsy

phrannie51

I think Bugsyboy has a point....

Remember my node was inoperable....sits on a nerve bundle which runs my arm and my diaphram.....nobody would touch me. So I went looking, and found a neuro-radiologist in Boston. Second opinions are can be enlightening. Here’s another thought....HNC treatments are changing left and right....when I started treatment, there was no such thing as Keytruda or Opdivo....today they can be first line treatment.  The type of surgery you need might not be here today, but a year from now, who knows?  

I know I’d feel like giving up, too....for a while.....the kick in the gut feeling....let it run it’s course, then let’s start looking around....see who else is out there. 

p