i dont know where to start... after a biopsy a week ago, we heard the words yesterday, its back, and the only option left is a layngectomy. this is a very aggressive tumor, and although its in the primary site, this is the treatment offered. i am in the medical field, so i know how difficult it is for patients and family to cope with never hearing your voice again. i am so sad. del is considering a second opinion, but i think probably he'll have the surgery. its a shock, after all he's been through. i find it breaks my heart over and over again to see him so debilitated, still with the headaches he's had and now staring at death behind his shoulder. the docs said they would keep him comfortable, and without surgery there would be pain and the enevitable death. no times frames were discussed.
we are now facing the last christmas with speech.
i guess we'll just have to take it one step at a time. we havent told all the family yet, actually thinking about waiting until after xmas, until we can digest all of this, but its crushing me a bit and so i just wanted to vent and cry alittle with all of you.
if there are any laryngectomy patients out there maybe your could tell me how life is for you. i would appreciate it.
best wishes to all, and a peaceful holiday.

I remeber keeping secrets till after christmas last year it was hard.

good luck girl i will be thinking of you

love liz

I'm so sorry this is happening to you,no wonder you need to vent and cry.
But loss of speech or loss of life?

I can tell you I worked for many years with children and young adults with no speech or limited speech for a wide variety of reasons--it was just amazing how they coped, even the ones who had been used to a life WITH speech. Modern technology, gestures and signing, good old pencil and paper can overcome a lot of the practical problems.

But--that doesn't alter the fact that, as you say, Del is already debilitated and in pain and will not be relishing the thought of major surgery and of course you feel badly for him.

I know there are those on this site who have had to face what you're going through and I'm sure they'll be here soon to answer some of your questions and offer better support than I can give, in the meantime, I'm thinking of you, try and stay strong,

Brenda

thanks for listening,.. we leave tomorrow, and our daughter is sad, and frightened, but is determined to see it through with us, and we'll have a happy christmas just being together. the news is alot to just get through, i suspect it will hit us when there is an actual surgery time.
i'll keep posting and let you know what's up-
blessings to all,
nycgrl

NYCGRL , I'm sure you have the prayers of everyone connected to this site. Reading your post makes me want to reach out , hug you and say "Everything will be alright" I hope you havea great Christmas with Del and yourfamily and make it special.

Wonderful wife to DEL, may I offer this idea; that life without speech is not life without expression! I very clearly feel your pain and anguish

When I was first diagnosed with oral cancer I told a former mentor of mine (from my grad school days) that one of the most upsetting things about going through the treatment was thinking that it could do permanent damage to my voice (which it has--still can't get through teaching a 50 minute lecture class most days and I had a beautiful singing voice which is completely gone).

My former advisor emailed back and said "you know, my impression is that most people go through life talking way too much and thinking way too little. You have a good mind--the cancer isn't interfering with that--so you'll be one of the rare ones who thinks more than they talk!"

On days when I get frustrated with my voice giving out, I remember that.

And, as Mark said, speech is definitely not the only means of expression.

Still, with all tnat said, I can understand how painful this is for you and for Del. My thoughts are with you and your family.

Nelie

Hi NYC Girl.

I'm so so sorry that this is happenening. It just doesn't seem fair or right at all.I know its devastating.

so I had a total glossectomy and my speech isn't great- and expressing myself verbally succinctly is something I miss desperately sometimes. I just thank my lucky stars that I was able to have the surgery- as horrible and rough as the recovery was it feels GREAT to be alive and healthy and cancer free with the possibility of living a long long time now.... You will find ways to communicate and to compensate for his speech. Husbands and wives and families have a secret language all thier own. Its going to be a big adjustment and you will grieve and be very sad over the loss of speech but if it can clear him of cancer and let him live and be able to be with you for lots longer I think you have to do it. you will cope and adjust and find peace and happiness again.

Love Miss kate

Hi,
I'm sorry, I just saw your post. I am a total laryngectomee and have no trouble speaking, however, I still have my tongue. Why are they telling him that he will never speak again? I have a TEP and an indwelling voice prosthesis. This allows me to speak whne I cover the trach. People without the TEP can learn esophageal speech. I need more details as to why they think he will not be able to speak.

It's the holidays and I may not see your reply for a couple of days but I will try to look for it.

Take care,
Eileen

nycgrl,
Have a hug!! My thoughts and prayers are with you and Del. Anytime you feel the need to vent or cry we're here for you.

If I can help out in any way just ask.

Mike