Hi im 19 and had a total glossectomy a little over 2 weeks ago. I had trach which came out a few days after the surgery and now im home. At the moment I have to use feeding tube i can have sips of water but i usually cough a bit. How long does it take before i can move on to soft foods? Im already fed up using the feeding tube

Welcome to OCF! Im very sorry you have the need to use our site. Im sure your situation is not easy at all.

Learning how to eat again will take alot of hard work. Since you just recently had the surgery, this probably will be a long road. You will need to get some professionals involved if they arent already. A speech pathologist and dietitian should be able to help you with this. It can be a dangerous situation, eating if you cant swallow properly. Believe it or not, the muscles used to swallow can quickly forget how to function when not used all the time. This can cause aspiration pneumonia which is a serious problem. You do not want to have food go into your lungs instead of your stomach.

Doctors will make sure you are able to sustain yourself without using the tube for a month or more prior to removal. You must do this without using the tube for anything. I completely understand depending on a feeding tube is not easy. But its better to hang onto it and not need it than to have it removed and end up getting another one a couple weeks later.

Recovery can be a frustrating time for most patients. They can never get better quick enough. All patients are different too and will respond in their own unique way to procedures, medicines and therapies. This cant be rushed, in time with hard work you can get there. Try thinking of the feeding tube as a tool to help you for a temporary time.

Best wishes with yoru recovery.

Hello. You have certainly had a tough time. This surgery is not easy.
I hope that you are being followed by a Speech Language Therapist. My husband has also had a total Glossectomy. It was the SLT who helped him with swallowing issues and learning to swallow. She was the one who introduced him first to liquids and then to soft purees.. The fact that you are coughing with swallowing fluids indicates that your swallow is not quite right and that you are aspirating liquid into the lungs - hence the cough. It will take time , be patient. Kris stopped using his feeding tube about 8 weeks after surgery. Remember too that everyone is different. If I was you, I would chase down that appointment with the speech therapist at your hospital.
Take care, Tammy

Hi KJP37,
So sorry you need this forum but know that is has amazing supportive people who have shared many, if not all, of your experiences. I was just recently diagnosed myself so I am still adjusting, and have come to realize, will continue adjusting for a long time. Be patient with your body---it has gone through and is going through a lot. I love your determination! With support from your care team and patience that determination will help!
Best of luck and hopefully you will keep us posted!

Thank you all for your replies, Im going to see speech and language therapist twice a week and I just had my second session. Its hard work but im fairly motivated. They are recommending i try sips of water to try and use some more muscles. I cant swallow my saliva and as i was spitting today i noticed a small fly which was quite strange

Welcome to OCF. You have arrived at the best place to contact others who have gone through the same thing as you.No better than tossing questions to those who really know and care.

Your recovery and progress is measured in months; it is going to take time to heal and improve until you arrive at the new "normal". You will be making constant adjustments as you explore and find new ways to do what you just did but now it will be a conscious effort and take time to learn.

Hang in there and visit often,
don

Another question. I've been reading that radiation will mess up my mouth and throat and fizzy drinks will be a pain. Will i be able to have coke or something like that after radiation. Apparently when i was coming around after surgery i was asking for some coke. Also either my mouth is getting dryer or im able to swallow my saliva a little

Will you be having rads?

Everyone who goes thru radiation will have a slightly different perspective. Theres a lucky few who have very few side effects and complaints but the majority of patients will not be able to drink soda. This can be temporary or for a very small percentage of patients, permanent. The same goes for spicy foods. I usually advise all patients going into rads to eat all their favorites now. I know you are still recovering and unable to eat. Heres alot more info to read about treatments from the main OCF pages...

Main OCF pages about treatments



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HI there... I'm sorry you had to go through this you are so young. As everyone here is saying... patience. You will heal. It just takes a bit of time... now physical healing takes approx 6-8 weeks. But by then they will likely have started you onto rads. It does often make fizzy drinks painful (frankly I'm 4 years out and I still don't drink pop (mostly because my mouth now has a built in chemical shit alarm and pop tastes positively HEINOUS.) So do sugary fruit juices - particularly sugary ones. I drink a lot of green tea, and water with lemon. If I want a bit of fizz I throw in lemon juice/lemonade with plain fizzy water which tastes okay (I can control the fizz by adding more regular water so it doesn't burn so badly) but normally I'll do the water and lemon thing.
As someone says everyone responds differently. I don't do spicy, super acidic, or fake foods (processed) but everything else is good.

Once you get the sip working it will be easier to eat. I used to put a bit in my mouth and swallow my food with water. I still do with some of the more difficult stuff (bulky things)

Rads will not be fun. But you're young and strong and you will get through it.

Hugs

After surgery and rads, I had a greatly diminished ability to detect sweetness. Pop tasted only like really harsh carbonation & just sticky, and even other things like ice cream were unpleasant. It is back to nearly normal as before for me now, about a year post radiation. But I drink much less pop now than when I was a younger man - they are just empty calories with next to no nutritional benefit. Calories that I could put to better use eating something I enjoy more. I used to really looooove ice cream, but now I find I'll eat a few spoons worth of it and then the new part my tongue is frozen and then the ice cream doesn't taste as great.

I find out tomorrow exactly what further treatment I will receive as far as I know the doctors want to do radiotherapy for sure whats uncertain is chemotherapy. Also the surgeons told me they took out nearly all the muscle on the left side of my jaw have I put that right in the signature.

Hi,

Most of the time chemo is used along with radiation so don't be surprised if that is recommended. It is usually a tolerable dosage but still will offer side effects. Good luck

I found chemo to be the least troublesome of the treatment but that really depends on you and how your body works. Other than a little nausea that was managed with the meds for three days after treatment I was fine. One thing... well two - if they give you cisplatin which is the standard, they will likely be giving you a hearing test which is no biggie. Also my hospital kept me in over night after administering it because it is hard on the kidneys. If yours sends you home... take in lots of fluids - i think that helped with the nausea as well. Hugs... (mind you running to the bathroom hourly was NOT fun... but it beats the alternative.

Keep strong.

Ive noticed patients who have weekly smaller doses of chemo fare better than those who get the 3 bigger doses. Ask about this option at your next treatment plan appointment.

I will get radiotherapy and chemo and stay over night for the chemo also found out that the cancer is T4bN2CM0 and poorly differentiated seems like its quite bad. I had a ct scan today to make sure it hasn't spread to lungs I think I find out the results Monday

KJP37,
In the beginning I felt like I was getting one hit after another, too. Remember you are surrounded by a group of people who are here to support you every step of the way. One of the most difficult things for me to do in all of this is to not borrow trouble by worrying about the things I do not yet know. The waiting is terrible and there's no easy way around it. I'm trying to practice this by not worrying about the side effects of chemoradiation---I'm not there yet and worrying now will only take energy I need for the fight in front of me now.
We're here to support you no matter what you find out on Monday!

Im not too worried about side effects although im sure they'll be something that might bring me down, im mostly upset that I lost my entire tongue and cant swallow. Also ct showed no metastases but I also found out I had involved margins and encapsulated lymph nodes

You are going through a lot. So sorry to hear this. I'm sending you support from down here at the bottom of the world where it's raining like mad. Are you getting plenty of help from the hospital in terms of counsellors or therapists so that you can adjust to the effects of surgery and prepare for the chemoradiation?

Best wishes
Maureen

Hello, yes this is a hard situation to adjust too, but I know that you will get there. You still have the radiotherapy and chemo to do so be patient. The good news is your lymph nodes were Encapsulated and hadn't burst through. The radiation should destroy any of the cancer cells left as there weren't clean margins. No distant metastases is also fabulous news. Your goal now is to get through this next phase of treatment. Swallowing is not easy during the radiotherapy treatment. I do hope that you are under the care of a Speech language therapist. The SLT will be your best friend and advocate for swallowing. Are you swallowing anything at the moment? If you can, keep swallowing everyday as this is important for keeping the swallowing muscles active.
It certainly is very possible to swallow after a total Glossectomy. It takes time and perseverance. Make that Speechie your friend.
Tammy

I can try sips of water but I still cough so I usually only try when with the speech therapist, there are certain times of the day when it feels like im swallowing my saliva but it seems impossible for most of the day

Tammy's advice is so heartening. I've just been to a talk by a surgeon about swallowing where we were shown videos of some of the swallowing tests. There was one of someone who had a full glossectomy. The surgeon who gave the talk and the speech therapist present seemed to be a well-oiled problem solving team. I hope and pray your speech therapist can help you, even if most improvement comes after radiation.