Not doing well

Suez39

Hi everyone:

Appt tomorrow with speech/swallow therapist. Saw another specialist last week. He said my difficulty in breathing from scar tissue in airway area and from paralyzed cord also blocking airway. I can breathe just shortwinded. Kind if difficult, but living like that. I'm on a FT for life, and they want to put permanent trach in also for breathing. Not doing that. Other option, larynogectomy. And not having cords and voice box out. Last option do nothing, and roll the dice. Im taking a big risk cause doctor told me if I get sick or catch something from someone, my throat would swell and close the little airway I have left. Going to wear masks in public to help prevent me from sickness if hopefully I can breathe in them. Am I scared? Yes, but I just can't live with BOTH FT and Trach. Tubes would be keeping me alive. Lost my quality of life already.

Now, I'm doing throat excersizes (taking 30 min a day) and sipping water, just to fight hard to try and save my voice. About all I have left. Been praying every night, cause I know only God has the power to save me. Doctors put me in this position. Think I was over-radiated. Thanks for listening. Just wanted to give you guys an update. Thought I would have another 20-25 years more to live a good life. Therapist told me that now I'm in  those group of people who have too much throat structure damage and scar tissue to ever breathe normal or eat and drink. Sad but true. Hope everyone beat their beast, and can enjoy their life. Such a horrible disease. Hugs, Suzanne

nancytc

I am praying for you tooI

Hi Suzanne,

I am glad that you are getting on a regimen to work the muscles in your throat. I just wouldnt, like you take any rash steps before you can give some other things a try. Have you done any acupuncture? Also massage to the external throat area. I cant say that these things could help you, but any extra blood flow to the area cannot hurt. And keep your sense of humor and try to keep that inner voice under control. And pray pray pray!!! We love your fun personality. I am only going to think good thoughts for your progress.

Love, Nancy

 

 

Sabrina23

Hoping that you feel better Suzanne!

My prayers are with you Suzanne to feel better and somehow with a miracle from God you will be able to breathe freely again and have your throat open up.  Please don't give up and stay strong your kind thoughts and words of encouragement to others have helped many along the way and now you are in need of help and support and we all are here to support you and help you and pray with you.  God Bless!  I think the throat exercises are very encouraging keep that up. Please don't be afraid of the trach tube it could really be a blessing in disguise.

CivilMatt

you will do better, feel better, be better soon, I pray.

Suez39,

Do Not give up on your future good life, yet. I have a number of good friends from this forum who have been in your shoes and have had laryngectomies and I (believe) they are still in the good zone and happy with their life’s.  I do not know how well I would take to making the choices you have given us, but I would hope that you continue to work these problems out until you are very certain that the final list of choices, gives you something that will make your life worth living.

Do you have people who are close to you that want you around them? I know the selfish bunch that we are here on the H&N forum want to keep you around. I just have to think that your condition does still have some room for improvements and you will be able to live comfortably with the final outcome of your decisions for another 20-25 years. Maybe, not 25 years on this forum, but somewhere nice.

Matt

debbiejeanne

options

dear suez39, i am a larygectomee and have been for 7.9m yrs.  i understand your concerns and you are right to have them. i have to be honest with you, it can be a hard life at times, but it can also be ok.  i also have a friend who has a perminent trache and he lives a good life.  if i had a choice between the two, i would choose the trache.  i just personally feel you give up less with that option.  but should you choose a layngectomy, you can do that too.  it all becomes possible when we have no other choice.  WMC, is an awesome example of a great life after laryengectomy.  He even does many things the doctors told us we can't do as larys, and then WMC even took time to teach other larys, like me, how to do what the docs said can't be done!!  I wish you the best with whatever you decide and I pray God will bless you will all the info you need to make the decision that is best for you.

wmc

About your options.

Hi Suez39;  Many of the Long timers know me and I was very active here back in the end of 2013 and 2014. 
I had throat cancer and the tumor was on my vocal cord pressing. T3; N0; M0; tho at just before surgery they thought it was a 4, and stage 3 COPD.  I had only two options. Have a full laryngectomy or go home and hope.  Ok I like breathing and not happy about losing my voice but we went that route.  I lost my vocal cords, but I still have a voice.  Now I also have an EL, Electronic Larynx which is a bit of a robot sound for a backup voice. They did the separation and placed a TEP which is a small hole with a one-way valve so I can divert air to my throat and voice. I do breathe through a hole in my neck and when I block it I can voice. Now I wear an adhesive baseplate and it holes a cassette which is a filter and Heat Moisture Exchanger, HME.  It filters all my air and warmes it up like the nose used to. I have not had a cold in 6 years and breathe better than I have in many years. My Doctors are amazed.  Now if you research Laryngectomee you will read all the things you can no longer do.  Only 90% is all wrong. I still voice, Whistle, blow up Balloons, I play the Harmonica, on my neck but hey, I did it to prove a point.  Well, I blew up the balloon for my Surgeon and he said that was great. Make a video on YouTube and he can use it. Ok, he is being nice. Only he meant it. I thought he was joking. So I did then a few more. Stanford Medical shows then to the ones that will have to have a Laryngectomy. It helps them see life is not over. I have 14 videos and they have been seen in 117 countries. If you want, go to YouTube and type in  wmcross51  and all 14 will come up and you can see them and hear my voice.  We can do almost everything. Some still fly their airplanes, swim, I don't swim but many still do. I rode my bicycle 3500 miles a year or two ago then had knee surgery and only got 2500 in that year.  Life is not over if you have the laryngectomy. I also run a Private Support Group that is global with members in 22 countries, for Laryngectomees and their family.  Most that had the Trach ended up with a laryngectomy and said it was easier with a stoma over the trach. Now we fo have some still with a permanent trach, and some that only had throat cancer and still have vocal cords. Only you can make the decision. It is major change to your body. We do swallow different and eat a bit slower, but my life is really great and I have helped so many learn what we can do, they tell you a Lary can't do. Yes, we still can smell, not as good as the air doesn't go through your nose. You can draw in the air and smell and I have taught hundreds how to blow their nose just like they did before the surgery. Even my doctor didn't think it could be done, but it can and just as easy as before.   Please feel free to email me if you want information or just talk.  <content removed by CSN>  I have an open Page that people can find us on Facebook. It is not the group but we can get you in the support group if you would like. It is the highest privacy Facebook has and all members are vetted so you don't have to worry who is there. We have 460 members and I only opened this Feb 2018. Before that, I was Admin for another support group and wanted to have mine where we had the family feeling. 

Lary's Voice - Open Page to find the group.  It is open to the public 

You don't have to be alone in your journey.
Bill Cross

 

tommyodavey

Not a Lot of Choices

So sorry you have to deal with all that stuff.  Yes, some have it worse but you can only focus on yourself for now.  Do what your gut tells you and keep fighting.  You have been through so much already.

Suez39

A Special Thank You

Thank you to everyone who answered my post. I really appreciate your responses. I think of people on this forum as my "second family". It's just a huge life changing ordeal to go through. I miss working and helping people. So when I can offer suggestions for somebody here it makes me feel good. 

Hugs, 

Susie

Logan51

Big picture

Just keep a positive mindset. Prayers are with you, Susie.

OKCnative

So sorry to hear you are

So sorry to hear you are going through this and faced with these decisions.

I don't know that it would have made a difference in your case (so many variables), but I truly wish more doctors would have a long talk with their patients on the real risks involved in having a feeding tube during treatment (especially repetitive radiation) for head and neck cancer.

While my doctor recommended a FT and said most of her patients got one, she said the side effects can be life altering - including what you are going through now. I decided to make an informed decision and not do a FT. Fortunately only a few weeks after my 35 radiation I was out eating my favorite Mexican food, chips and peppers. 

I personally know 4 local friends who went through this treatment and all had FT's and all suffered side effects ranging from a longer than necessary recovery to never being able to eat solid food again.

This is such a horrible disease. Hopefully we all gather knowledge and learn from each other and pass that knowledge along to others.

I wish you well and KEEP UP THOSE THROAT EXCERCISES!

birdwash

I am experiencing some similar issues 13 years after radiation

After this week's appt with neuromuscular neurologist, I was told he thinks what I have is radiation fibrosis syndrome. And he says there's nothing I can do. I was so low that I was searching for answers online and found this group and my first search and I see your post!! I had max high dose radiation and chemo for my tonsil cancer 13 years ago (had feeding tube back then for a year). I currently weigh 87 lbs and struggle with eating so drs want me back on feeding tube, have paralyzed larngeal nerve (left vocal cord paraylsis), Ive had the throat stretched which helped me be abe to swallow liquids without them coming out my nose, ... now since spring this year my tongue has fasciculations and i trip over the tongue - making it hard to speak sounds with c,k,w,l, and making it harder to communicate. It feels like the world revolves around eating, drinking and talking and I feel so left out so much so often that I don't belong anywhere and I read your note and felt instantly like I belong and wanted to tell you how deeply I felt for you reading your note. I am so sorry that you have to experience this crap too!!!

I wanted to reach out to you right away on the first post I read here to let you know i will be praying for you Suzanne!! The breathing issues sound quite rough!! I pray for no illness to the struggle ontop of it!!! 

I do hope you have improvements in one direction or the other!! If only medical advancements could just catch up to us, eh??!!!

Hang in there! Prayers, Nancy

 

okeydokey

Hug for you

Suez

I want you to know I am praying for you

Hugs and prayers

Rita