Cheryl - I've always enjoyed and learned much from all you posts but these recent posts of yours have me rotfl and more than that, they have given me a new respect for all you've been through and the tremendous amount of information you've always been so willing to share with others. If I were about to go through a hospital experience such as yours, I would right now be making myself some signs to hold up or point to that say "I HAVE TO PEE!" and "I CAN"T TALK!" with maybe a loud bicycle horn hung around my neck! It really helps to be prepared, and what you've done for others is just that! I certainly admire your husband, too - for what he did to help you.

Sarge - I just know that with that great girlfriend of yours, plus all the great posters on this forum, you will come through this just fine! Hang in there and let us know what happens.

Hello Everyone,
My name is Melissa. I am Eric's girlfriend and caretaker. Eric is inside his 13 hour surgery. Which will probably end up being longer... The surgeon just came out and gave me terrible news. So, unlike the pet scan or MRI were showing, the cancer has spread to his entire tongue all the way to the back to where the bone starts and to one tonsil. They will remove the entire tongue. He signed a consent for them to take all that had cancer in it, unfortunately the doc had said he was positive that it would not be more than 3/4. I didn't stop him because i know Eric is not ready to give up & leaving any cancer behind would put that at risk. Although, i have this very sick feeling at the pitt of my stomach. Has anyone gone through this type of surgery & recovery?? Does anyone have any information about this that can help?? Will the trachea tube, he was so dreading, have to be in forever? the feeding tube?? Any positive outcomes of being able to eat or talk again at least for anyone??
Thank You in advance.
Melissa

Thank you for reaching out, Melissa. You are welcome here as a caregiver. Im so very sorry things are not going as planned.

To answer your questions... Yes, I have seen patients go thru a total glossectomy and recover to go on to live a decent, productive life. They do not have a trach (but did have one for a while) or feeding tube. He may not be able to talk so most will understand him but he might be able to still vocally communicate a little bit where only those close to him can understand what he says. Sure a patient who undergoes something this drastic has their medical issues and it can really do a number on them mentally too. In my opinion, when all is said and done its still better to be rid of the cancer and survive than to let cancer take over.

Recovery will likely be a long road. Try to always have someone with him while he is in the hospital. He needs an advocate to be there to be his voice. Dont be surprised if he sleeps for most of the next few days. Sleeping is a good thing and helps him to heal. Make sure to tell the doc to give him at least 2 types of strong pain meds so he can alternate between the two. This way he will never have to be in pain while waiting for the correct time to get another dose of pain meds. He is likely to be hurting pretty bad the first few days. The doc may even keep him medically sedated for a couple days which would be a good thing. He will sleep right thru the worst of it.

Please feel free to stop in as much as you like and ask questions. We will help you both get thru this.

(((HUGS)))



PS... There are aps for the ipad that he can type and it will speak for him. I have a good friend who isnt able to talk and she uses this effectively.

Hello Melissa, I want to tell you that there certainly is good living after a total Glossectomy.
My Husband Kris is now coming up for 3 years since he had his Total Glossectomy in March 2012.
Kris learnt very quickly how to swallow and by 6 weeks post surgery was swallowing all his nutrition.
There is no reason for Eric not to speak either. As he still has his voice box he will indeed speak. Try it yourself, hold your tongue still and talk. It is still easily understandable isn't it? A Speech Language Therapist will help Eric with this.
Always be positive and stay strong. Your attitude will matter a lot to Eric.
My Kris lives a good and active life. Eric is much younger so I know his recovery will go well.
If you have any questions at all , please just ask.
Tammy

Melissa, I forgot to address your Trache concerns. No, Eric will not need the Trache for too long. It needs to be there now as this surgery causes swelling and he needs to have a patent airway until the oedema goes down. and he also needs time for the area to heal. So after a few days to a week, they should be able to remove the Trache tube. There is nothing wrong with his lungs and after the oedema goes down his airway will be open normally without any swelling obstructing the airflow.. There is still the passage way between his mouth/nose through which we all breathe.
Take a deep breath,
Tammy

So sorry to hear that you had a tough year last year, but I love your determination and humor. Just wanted to let you both know that you are in my thoughts as you go through recovery.

Hi, Sarge. Oh, such bad luck for it to have come back so fast. I had more or less the same as you - probably they took very slightly less of my tongue away, but a solid quantity - the scar on my wrist is about that size, yeah... OK: the trach doesn't hurt and is not unpleasant as such. The difficult bit is when they clean it. You have to keep your cool. It can be hard. (I think the worst bit for me was that for the first - 4 days, I think it was - I had a trach that didn't let me speak. So there you are, distressed, feeble, in intensive care, etc. - and you can't even ask questions or for help or whatever. I had a little blackboard to write on, but they kept forgetting to leave me the crayon to write with!). The bit that hurt was the thigh, where they take the skin graft, and the wrist was unpleasant too. All the neck and tongue was really not bad!

So it is heavy duty stuff you are going through, but you are young and have a sense of humour - v. important! It's a shame you had already lost so much weight - comes off so much quicker than it goes back on - don't be impatient afterwards, keep the tube in as long as necessary (and it sounds like they fitted your first one really badly - if that happened again, you'd need to bang tables to get them to fix it, I think!). I had mine for about 6 months, I think. You really must get re-education afterwards, good therapy there can so help speed up the process of being able to eat again.

There will be stages you go through during your recuperation that will be more or less easy to handle, particularly the side-effects of the more extensive radiotherapy you willhave now - it affects the saliva glands, and that can be unpleasant. It also affects your sense of taste and smell (specially if you also have chemo), which doesn't help the old eating, either! But I can assure you that a year after the op, I was fit and healthy and bouncy (although I still needed to put more weight on, that was a slow process).

I wish you all the best of luck.

Thank You Tammy!! Thank All of you, who have responded. Today is the forth day and he was just ordered to the Step down. Swelling was intense first 2 days but it has gone down now. Today he is feeling a little more tired, but he has been taking 2 walks throughout the days since monday. They removed the drain from his thigh yesterday and one of the 4 drains from around his neck this morning. They weened him off Ketamine slowly, it seemed to be causing his blood rate to go up way too high. Thank You all for the support you show both of us. It has been tough, but we will keep fighting on until this is all over. May everyone be well & full of love.
Melissa

Thanks for posting Melissa. I was wondering how you both were.
It is very scary just now, I know. Believe me though when I say that you both will get through this.
Just take it day by day. Always be positive.
Tammy