Hello this is my first time ever to post anything here on a forum so please bear with me. I just wanted to express myself now seeing how I have no tongue to do so anywhere else. My story started a little more than 2 years ago when like many of you I got the word... Cancer. Yikes! so cut it out and let me get back to my life please. Oh if it were only that simple huh? I have been through the radiation and the dry mouth...the PEG tube... the side effects of Erbitux(which were not that bad btw)...the recurring ear pain which only says one thing "Its Baaaaack!" So now here I am after a total glossectomy trying to figure out if I will ever be able to just swallow my spit that builds up that I only dreamed about having a year and a half ago. So if I can shed any light on anything for any of you just beginning let me know, I wished I would have known about this when I started. I also would like to hear from anybody else that is tongueless like me. Thanks,
Clark

Clark

WELCOME. Sorry you had to join our little club. Happy to see that you are already contributing by pointing out the difference in pain and hassle between getting the PEG before Rad TX or after - and from personal experience, Way to go !
I still have half a tongue and I hear your frustration. Your story sounds so familiar. While I hope to be able to swallow, it is amazing how moist your mouth gets with the spit that used to trickle away but not builds up. And yes, two all clear Pet scans in May and October 08 after TX were trumped by the persistent ear pain (which was my only symptom back in 07) in Dec 08 - cancer back.
There are posters here who have had a total glossectomy so I will let them light the way for you, And YES, you can not only express yourself here but to people who can actually understand. Welcome again
Charm

Clark,

Welcome to our forum - sorry you had to join but it's a great place and source of support and information. If you look under user names for Misskate you can read her very detailed and helpful blog about recovering from a total glossectomy. Even though my husband's diagnosis and treatment were different, reading her blog and seeing her courage, persistence, and desire to regain her life was so helpful and inspirational to me.


Take care- Sophie

Hi Clark,

Miskate's blog is in on the second page of ORAL CANCER BLOGS section and is titled 'My Journey - 33 Year Old Woman - Tongue Cancer'. She doesn't sign on as often as she used to, but I'm certain she will respond next time she in on the forum.

Take care,
Eileen

Thank-you guys for your responses and the information on Misskate's blogs. Very good and inspirational for a no tonguer like myself. I sure hope I will be able to eat that steak covered with mushrooms like she did one year out from surgery. I have been on the ole PEG tube diet now since Sept 08 so the thought of eating for real is kinda beyond my imagination now. At first it was terrible, the commercials on TV would drive me crazy (Red Lobster is the worst). Now its, well, I sure look forward to eating again someday but I am not consumed by it anymore. Maybe it is just an acceptance of my situation. Well thanks again and I am sure glad I found ya.
Clark

Hey Clark!

How are you doing. Well you are just at the begining. It take a long long time. Do you have a speech and swallowing therapists to work with ?? I hope that my successes will yours but don't beat yourself up if you don't get there. I think that I am an unusual case. I think we can at least get you to a soft /semi soft diet which would sure be a lot more pleasurable than PEG only. A swallowing therapist can really help you breakthrough to relearning to swallow.

I hear you about the commercials. Its amazing how many htings revolve around food. I still have situations where I want to eat and I'm hungry but wait until I'm in a more relaxed enviorment-- like I can't eat on the run or get a "quick bite" ever... and I often have to stop mid meal in public just to go with the flow.... Its hard!

So talk to me. Are you able to swallow water or liquids? WHat was your experience with this?? Water is the hardest thing to swallow which is why they have you try that first-- its also the safest if you aspirate a little bit of it while trying.

What do you Docs say on the swallowing. DO you have more treatments are you done?

Email/PM me anytime... or write here. I can go into depth on my techniques and what foods and methods worked. Have you tried gargling water? I gargled alot of salt water during radiationa nd I foudn it helped strengthen my throat muscles a ton- which is how you will swallow now. It won't be the natural reflex that it used to be- its more forced. You will use you throat to control the liquids and you'll get a feel for controlling it that way and with your cheek muscles.

My cheek muscles are SOO strong now. Its crazy... My face and thoat would get so exhausted after eating when I was relearning to eat and if I'm talking alot while eating .. like with friends or at a dinner party I'm absolutely EXHAUSTED afterwards.

I am here for you Clark. I know this is a terrible horrific really really difficult thing to go through.I wish all the time it had never happened but I think I've managed to get some sence of normalcy back.. and I hope it will become more that way for you too.


KATE




K

Clark, you are not alone -- I had my total G in Dec08 and still can't swallow my spit, although the secretions are indeed lessening. Like you found, the smell and thought of real food drove me crazy at first -- This seems like a slower recovery than from the radiation, probably because I also can't talk because I still have the trach tube and there's enough moisture that attempts at talking are just 'bubble-noises'.

It's a no food world for a lot of us. Mash it and milk or water and just maybe i can handle some, Angel hair pasta without meat isn't bad but sure isn't like a big steak. I really haven't missed goof food and wonder if I will ever get the chance to see if I still like it. LOL I hope some day to find out. I knew misskate would be there for you. She is great.

Kate,
Hi and thankyou very much for your response and mostly just for your example of triumph. I am more in the same boat with Pete. I too still have my trach and can hold my finger over it and breathe through my nose and mouth better each day but no where near enough to do without it. The Dr said back in December it would be six months. I was so amazed to read you got rid of your trach in about 2 weeks huh? Wow! I am not seeing any therapist yet, I go in June to be fitted for the palate prosthesis thingy and after that the Dr said they would do a swallow study. I can talk if you call the peewee herman sound that comes out talking. No one can understand hardly but I guess that will just take time like you said. I did try the gargle thing and that was interesting. I am not scheduled for anymore treatments as I have had all the radiation a body can take and the chemo Doc said that the radiation and chemo go hand in hand so I did not need that either. The surgeon said I had clear margins and all the lymph nodes were clean, 100% cancer free! Yay! I am just in that holding pattern I guess waiting for this muscle flap to shrink down to the right size? That's what the Dr said anyway, wait... it's hard a thing to do when you want to go back to work and function in some sort of a normal way again. I will get there someday I know. SO thank-you again and I will take you up on your offer you will hear from me again I am sure.
Clark

Oh my gosh CLark. I didn't realize that you still had the trach.WOW. I think that makes swallowing anything 1000 times harder. I couldnt swallow water or anything very weill with the trach in-- actually I don't even know if I tried. Is your trach permanant or is it justin for longer because of your previous surgeries.

I am so sorry that your healing is taking longer. I didn't have sugery or radiation untl after the surgery and I tin that is why I healed fast. So your recovery will be slower.

Try to get your mind off of it. I am thinking of you and hoping for the muscle flap to take a shrin so that you can move forward to health.

Have you talked to your doctors about extra supplements you could take to help with rebuilding the soft tissues?

Take care of yourself and get lots of rest and keep your mind occupied with things your enjoy. I know it it isn't easy to do. I still (obviously) think quite alot about what I went through which is I why I come here to help otehrs gong through what I went through...

KATE