Well my name is Eric and i am 29 years of fun and I am new here posting, i have been lurking here for some time now as I've been going through this cancer stuff since May 2014.
However Ill go ahead and give a brief run down to introduce myself and catch everyone up on the the lovely cancer timeline.

Found a ulcer looking thing on the left base of tongue around April 2010, went in about a month after it hadn't healed and got a biopsy, came back non cancerous, what a relief! Fast foreword till May 2014 the ulcer never went away�always was a pain with spicy foods/acidic juices etc but i never paid it much thought due to the biopsy being good back in 2010. Well my gf(who is/has been the light to all this going on) was finally like look idiot(thats me) go get another biopsy, so i did, in May/2014 and sure enough it came back cancerous. So we began researching places to go to and got into the University of Colorado Anschutz Medical Campus�.met with the team for Head and Neck cancers, did the scans and thought of a plan�.first did the left side neck dissection and they also removed the tumor from the BOT, surgery was supposed to take like 4 hours ended up taking about 7.5 but they said they got rid of everything from the tumor site�along with 30 something nodes in which 4 were cancerous�. that surgery was on my birthday�wooo happy birthday self! haha after looking at everything they decided to do accelerated radiation and no chemo�.radiation was hard but i had more problems with the PEG tube haha�man that was rough(nerve problems, tube setting in wrong place)�.so finished radiation with flying colors and with reading everything on here it helped so much with such great detail it was amazing i found this place. Thank you all for that part�really! amazing work!

so finished radiation late september and was determined to get rid of the stinking tube since mine was so troublesome. After making myself eat everything through the mouth after treatment the drs let me get off the tube(went about 4 weeks not using it once and gained some weight) was eating almost everything with decent taste back and could chew and swallow most anything, lots of water or gravy helped the dryer stuff�... THEN�ugh�.woke up one day and the spot were the tumor was prior kind of burned a little bit. Again paid no attention since we go through hell after all this i thought it was just another downswing�..next day it was worse�.and worse and then the whole tongue started to burn with drinking the ensure/ iso drinks�..i couldn't eat/chew/drink shakes cause of the burning. Even with the magic mouthwash it wouldn't numb it enough�.then the jaw and ear pain started. So i went in and talked to the Docs and they saw a ulcer looking thing so they gave me some pills and steroids to try and heal it�.2 weeks later still no healing and really beginning to get hard to put down even 900 calories a day some days only 600 calories�.it was bad! They wanted to do another biopsy but i was like i can't eat so we got another tube put it just this past christmas�merry christmas self!(at least Santa delivered on this tube, didn't hurt really at all and now its great haha�.man the other one was a MESS) they also did a biopsy on the base of the tongue in the same spot as before and it came back cancerous�..So after not even 5 weeks it had come back in the same spot as the previous tumor, after removing the first one with a positive outlook and going through the radiation talk about a slap in the face. Since putting in the tube I've gained about 3 pounds but still WAY below my normal weight, also can't sleep at all even with assistance of pills(from the DR), have had bad neck and jaw pain along with headaches and my tongue is just so swollen it is pushing against my front bottom teeth and making indents in the tongue�..just got on the fentyal patch(SP?) that along with oxy has been managing the pain but i just want to sleep, can't sleep for more than about a hour at a time so that also not helping with the healing process of anything���
So now we have and I'm not sure the correct term for the surgery but they want to take the whole left side of the tongue and use a graft to do the flap and they are hoping this works. Got me pretty shook up since i was doing great and all and then bamo now this surgery were half the tongue is going to be removed(they said maybe more depends on when they get in there and how much permission i give them to remove, i said 67.87 percent and no more but sometimes my humor isn't laughed at haha) they are also going to take some nodes from the right side which hasn't had any problems so far�.but one node was bright on the scan the other day so they want to take it just to take it. Could just be inflammation from everything but they would rather get it now while they are in there.
Im mostly worried about the Trach tube afterwards since go figure i have a personal neck issue where i don't like anything touching my neck�.so breathing out of it I'm thinking is going to be really the worst part for me�.they seemed to be optimistic about saving the back portion of the tongue to help in eating but he also said it a possibility that i will always be on a tube and might even have to keep the trach tube in for who knows how long�those two things got me the most spooked�..

surgery is set for 7 days from now�..we are meeting with the chemo dr to just touch base with him and pick his brain to see where he stands on all of this�..

well that was longer than i thought but again i guess every cancer patient holds a lot in and then rambles because it feels good to get it out Thanks for listening !

Wow, you have been through a lot in the past year! I love your sense of humor and attitude. It sounds like you have a great girlfriend to help you through this as well. I will be thinking about you and saying a prayer that your surgery goes well.

A tough run Sarge. But you breed them tough in Colorado, our friend Hellion is from there. Hope the surgery goes smoothly.

Hi Sarge, well it sucks that one so young has this story to tell.
First off I want to say that I am really suprised that with 3 positive nodes you were not offered chemo.
My advice is to get yourself another opinion at a Comprehensive cancer Center ASAP. There has been much research that shows where you are treated matters. You have a better chance of survival if you are treated at a CCC.
You are very young and you should ensure that you have the best treatment with the best outcome.
You should be seen by a whole Tumour Board and your case and treatment decided apon by them. This will involve surgeons, radiation and chemo Oncologists , dentists etc all together.
If you are seeing a surgeon. Then a radiation guy and then maybe, a chemo doc you are not at a CCC.
That's my best advice for you. Get a second opinion now before you let that surgeon at you again.
Thinking of you, Tammy.

Welcome to OCF! Sorry you have had a rough time of it but you will get the best first hand opinions from those going through this sort of disease.

Welcome to OCF! Im very sorry to read about everything you have been thru. You are in the right place to get info and support. Stick with us and we will help you thru all the upcoming hurdles.

To help your body recover from everything you have been thru, you need to boost your intake. This will also help you to heal quicker from your upcoming surgery. Every single day you should be taking in at least 2500 calories and 48-64 oz of water. These numbers are the bare minimums. After everything you went thru you should try adding some high protein whey powder to your liquid formula. This helps with healing. If you can push to take in 3000 or 3500 calories thats not too much for your situation. If you can talk with a nutritionist they can help with getting you on a prescription calorie dense formula to make getting enough calories easier. Or you can order Boost Very High Calorie from the Amazon link on the right side of the page. Your intake is so very important especially with surgery coming up. You want to be as strong as possible going into it to make it easier to get thru.

If you have friends and relatives who want to help, ask them to take shifts staying with you while you are in the hospital. Every patient who undergoes major surgery should have someone there with them even if they are only sitting around watching you sleep. After the type of surgery you are having, the hospital staff may not understand you. With someone there they can be your voice and advocate for you.

Wishing you all the best with everything.

Haha, my first post on my introduction thread was also very long. Even though we may have plenty of people to communicate with in our personal lives, there's nothing like talking to those who actually understand what we've been through or are about to go through.

Strange how some cancers take so long to develop and others are quicker to move. In my case, the ulcer opened up and seemed to quickly eat away at the side of my tongue.

So they removed a significant portion of my tongue and had to replace it with a chunk from my wrist about 7cm x 6cm (2.75" x 2.4"), then fill that hole with skin they scraped from my thigh. They saved the back of my tongue and part of one side. You might end up with something similar. I also received the trache, which I absolutely hated. Plus they had placed a feeding tube down my nose, which stayed in place until the trache was removed. The trache was nasty, horrible, truly scary when it plugs up, extremely inconvenient, but hey, it kept me alive and I got through it. You'll get through it too.

Luckily I didn't need chemo. They removed a schwack of nodes from my neck but none of them were cancerous. I did receive radiation treatments, however. It wasn't so bad in my case, although I'm seeing some issues with my teeth now, many months after the treatments ended.

[quote=Vanpaddler]Haha, my first post on my introduction thread was also very long. Even though we may have plenty of people to communicate with in our personal lives, there's nothing like talking to those who actually understand what we've been through or are about to go through.

Strange how some cancers take so long to develop and others are quicker to move. In my case, the ulcer opened up and seemed to quickly eat away at the side of my tongue.

So they removed a significant portion of my tongue and had to replace it with a chunk from my wrist about 7cm x 6cm (2.75" x 2.4"), then fill that hole with skin they scraped from my thigh. They saved the back of my tongue and part of one side. You might end up with something similar. I also received the trache, which I absolutely hated. Plus they had placed a feeding tube down my nose, which stayed in place until the trache was removed. The trache was nasty, horrible, truly scary when it plugs up, extremely inconvenient, but hey, it kept me alive and I got through it. You'll get through it too.

Luckily I didn't need chemo. They removed a schwack of nodes from my neck but none of them were cancerous. I did receive radiation treatments, however. It wasn't so bad in my case, although I'm seeing some issues with my teeth now, many months after the treatments ended. [/quote]


the description you gave seems to be the same sounding situation ill be undergoing�again its not like I'm a pro so we shall see haha�.

but yea the trache�.ugh something not high on my list of looking forward items next week�..i do already have the feeding tube placed in so that won't be needed through the nose which is a positive�.


thanks for everyones support also�means a lot

Wow... I am very surprised with 4 nodes involved that they did not give you chemo as well as rads!!! Let me first say that. I gather based on your description of the surgery that they only removed as small amount. Ideally - they should have removed more. But this is all unimportant now. The surgery you had was what I had. I lost 1/3-1/2 of my tongue - they grafted from my wrist. Believe it or not recovering from surgery was easier than recovering from rads. That said it will take longer to heal now that you've been radiated. Get as MUCH PROTEIN as possible to help you heal. I don't mean steaks or the like. Protein shakes, will help. Ask them if they did full radiation to your mouth. I am wondering if they only did your neck and didn't concentrate so much on the mouth assuming they had gotten it all. In medical lingo, a recurrence this soon after surgery isn't really a recurrence, truth be told it they didn't get it all in the first place (that's a quote from an oncologist)
Best of luck. The trache sucks so bad (not gonna lie) so I hear you. And suctioning BITES in a big way. But it should only be for a short while so hopefully by day 3 or 4 post op, it will be gone.
Hugs.

[quote=Cheryld]Wow... I am very surprised with 4 nodes involved that they did not give you chemo as well as rads!!! Let me first say that. I gather based on your description of the surgery that they only removed as small amount. Ideally - they should have removed more. But this is all unimportant now. The surgery you had was what I had. I lost 1/3-1/2 of my tongue - they grafted from my wrist. Believe it or not recovering from surgery was easier than recovering from rads. That said it will take longer to heal now that you've been radiated. Get as MUCH PROTEIN as possible to help you heal. I don't mean steaks or the like. Protein shakes, will help. Ask them if they did full radiation to your mouth. I am wondering if they only did your neck and didn't concentrate so much on the mouth assuming they had gotten it all. In medical lingo, a recurrence this soon after surgery isn't really a recurrence, truth be told it they didn't get it all in the first place (that's a quote from an oncologist)
Best of luck. The trache sucks so bad (not gonna lie) so I hear you. And suctioning BITES in a big way. But it should only be for a short while so hopefully by day 3 or 4 post op, it will be gone.
Hugs. [/quote]

yea the first surgery we were told that they took enough of the tongue that they had all negative margins�...when we met with the chemo part of the team after the first neck dissection he pushed for 100 percent radiation for sure�and he said he would sit there for days to convince me to get it if i didn't and that was the chemo guy talking positively about radiation �.he spoke of chemo and described it a certain way where it wasn't 100 percent supported to benefit the results based on how the cancer looked in the lymph nodes, etc etc�..so we went with accelerated radiation five times a week but twice on wednesdays to the whole mouth and neck but with more emphasis on the left side...the tumor is in almost the same spot but it is bigger than the last one so with this new surgery hopefully it will be allll gone, fingers and toes and families fingers and toes are crossed as well haha�and possible chemo after depending on certain circumstances�..

had a set back the other day which wasn't good�since the new tumor arrived back in november �..the neck had gotten a lot of referred pain and stiffness also the tongue started getting swollen��well on friday night neck started welling up a lot and so did the tongue making the airways narrow and hard to breathe laying down�went to the ER and had a little bacterial infection in the mouth�.they transferred me to the hospital where the surgery is going to be and am now on some steroids and antibiotics�.swelling has gone down and back to the really stiff neck and not eating or drinking like its been for the last month(eating by only) but the pain is manageable�so I'm already pretty much moved into the hospital for after the surgery�like isn't it nice of my landlords to let us move in a few days before move in date! lucky lucky


i wish i could practice the trachea tube�..ugh its almost amusing to me that THAT is whats bothering me the most out of this upcoming procedure�.anyways hope everyone else is having a great day!

chemo as a treatment doesn't cure oral cancer. What it does is soften up the tumor so that when radiation hits it it is more easily killed. This is why they are given in tandem usually. Hopefully all of this is a moot point because your surgery will go well and they will get it all this time. I have to admit after surgery even though I looked like crap the trache was the worst of it. Prepare for the worst hope for the best and you may be surprised. have a good day.

[quote=Cheryld]chemo as a treatment doesn't cure oral cancer. What it does is soften up the tumor so that when radiation hits it it is more easily killed. This is why they are given in tandem usually. Hopefully all of this is a moot point because your surgery will go well and they will get it all this time. I have to admit after surgery even though I looked like crap the trache was the worst of it. Prepare for the worst hope for the best and you may be surprised. have a good day.
[/quote]

yea i understand it all for the most part just sucks but yes all moot cause its going to be all gravy after thursday(and no that wasn't a joke for food choice that we all use a lot of during all of this lol) �and i always hope for the best
�no reasons to hope for anything less!

any tips/ hints/ tricks for the tube, stuff you wish you would of known or wish you would of found out on day 1 not day 4 how to do "this one thing"�..i do like to prepare mentally for stuff and hearing from others who have inside info is always the best source


many thanks

Well, I'm not sure there is a whole lot you can do physically to make the trache easier to handle. Your state of mind might make it easier to handle, or make it a worse experience than it otherwise would be. Try not to get too psyched out, thinking its going to be horrible. It likely will be horrible, yes, but worrying about it won't make it better.

The first few days will be the worst. You will need to cough a lot, trying to get secretions out of your throat. Slowly it starts to plug up a little bit and you can manually suction it out with the normal suction tube. Sometimes it gets plugged up even more, and the nurses will have to help out with what they called "deep suction". This can be a somewhat scary experience if they are not able to help you out in short order. Once in awhile they even had to pop the tube right out and replace it with a fresh one. I was also worried about sleeping, but knew that I was in what they referred to as a "step-down unit" with three nurses for five patients. The nurses were only a few feet away, if anything was happening.

After the first few days, they removed the first plug in the trache and replaced it with something smaller. By this time, I wasn't coughing up as much gunk and had to suction much less often. Then after another day of this, they moved me to a normal room since I didn't require as much supervision from the nurses. Another day or two later, they removed the trache completely, and sutured the opening closed.

[quote=Vanpaddler]Well, I'm not sure there is a whole lot you can do physically to make the trache easier to handle. Your state of mind might make it easier to handle, or make it a worse experience than it otherwise would be. Try not to get too psyched out, thinking its going to be horrible. It likely will be horrible, yes, but worrying about it won't make it better.

The first few days will be the worst. You will need to cough a lot, trying to get secretions out of your throat. Slowly it starts to plug up a little bit and you can manually suction it out with the normal suction tube. Sometimes it gets plugged up even more, and the nurses will have to help out with what they called "deep suction". This can be a somewhat scary experience if they are not able to help you out in short order. Once in awhile they even had to pop the tube right out and replace it with a fresh one. I was also worried about sleeping, but knew that I was in what they referred to as a "step-down unit" with three nurses for five patients. The nurses were only a few feet away, if anything was happening.

After the first few days, they removed the first plug in the trache and replaced it with something smaller. By this time, I wasn't coughing up as much gunk and had to suction much less often. Then after another day of this, they moved me to a normal room since I didn't require as much supervision from the nurses. Another day or two later, they removed the trache completely, and sutured the opening closed. [/quote]


thanks for your reply thats kind of what i was looking for, an explanation on what to expect�.positive mindset here

Hey Sarge,

Great advice coming your way from the OCF team. ChristineB and the others are right about getting your weight up now in preparation...and then working back up to those intake levels as soon as you can post-surgery. Plan to have someone with you. My wife and I had a small white board and marker so that I could write her notes and she could explain things to the nurses. The feeding tube sounds worse than it is. A blow to your good looks, but you'll be okay with it. Keep in mind that the trachea tube is only temporary. No fun, but you'll only have it for a limited time. Just as soon as you are fully adjusted to life with it then they will probably start talking about removing it. To keep this time to a minimum, listen to the nurses and get your mobility up as soon as you are allowed. Walking (I pushed my beeping medicine pump all over the hospital) is a great way to help bring the inflammation down and speed up the healing process. Funny, but I received a lot of "thumbs ups" from people in the hospital (as I walked about) because they knew what I was going through and were very encouraging.

Our prayers are with you. Godspeed.

--Bill & Shannon

[quote=shcoop]Hey Sarge,

Great advice coming your way from the OCF team. ChristineB and the others are right about getting your weight up now in preparation...and then working back up to those intake levels as soon as you can post-surgery. Plan to have someone with you. My wife and I had a small white board and marker so that I could write her notes and she could explain things to the nurses. The feeding tube sounds worse than it is. A blow to your good looks, but you'll be okay with it. Keep in mind that the trachea tube is only temporary. No fun, but you'll only have it for a limited time. Just as soon as you are fully adjusted to life with it then they will probably start talking about removing it. To keep this time to a minimum, listen to the nurses and get your mobility up as soon as you are allowed. Walking (I pushed my beeping medicine pump all over the hospital) is a great way to help bring the inflammation down and speed up the healing process. Funny, but I received a lot of "thumbs ups" from people in the hospital (as I walked about) because they knew what I was going through and were very encouraging.

Our prayers are with you. Godspeed.

--Bill & Shannon [/quote]

a white board and marker! i had pen and paper on a list but i like that one better�thanks!!

IPAD is even better if you have one.
I had brutal nurses so my trache experience was far beyond bad. It could have been made far easier by nurses who were actually good at their job. Less than 24 hours after surgery they moved me out of step down into a regular room, closest to the window, with the curtain drawn. The room was across from the desk but a paper and PEN CAN'T CALL FOR HELP, and the call bell was all but ignored. Plus I was out of their line of sight. Had I been unable to help myself I'd probably be dead. NOT KIDDING.
I am a pretty tough girl. I'm not whiny nor do I complain. HOWEVER... their behavior bordered on negligent. My husband was funny, her rarely makes a stir about anything. I called them a few times with the call bell the first day post op and they would ask "what"? But wouldn't come. I freaked out when my husband arrived the night after my surgery because when your trache is clogged and you need it suctioned - you really can't wait. Anyway, I rang the bell and showed him. When the guy asked "what" - as usual - my hubby went out to the desk and said Are you "F*cking kidding me? - SHE CAN'T TALK!!!" The common sense thing to do - knowing most of your patients are airway compromised would be to get there ASAP. One time I waited 45 minutes. Then the first night post op - not even 24 hours after surgery, they came in to suction me and some how yanked my NG tube and it coiled around the trache and was bunched up in my throat. I was gagging and couldn't breath. I kept writing that it was lodged awkwardly in my throat and they kept telling me I was fine. I felt like I was choking constantly. THEY ARGUED WITH ME!!!!!! for an hour before finally pulling out the NG. Then they had some resident who didn't know his a$$ from a hole in the ground come and try to put it back in in the morning. (note - once they removed it I was fine - so it was the NG causing the issue and not all in my head like they kept saying. Anyway this guy hands me a glass of water and tells me to drink while he puts the tube back down.
I was NPO (nothing by mouth) so I couldn't drink - they were just stupid. that's about the only way to describe it.

Anyway - day three they put in a fenestrated trache and I could breath and talk and I was fine after that.
day 4 they removed it all together.

Post op I was numb, no pain. So I asked them to stop the pain meds, and did all my own care. showered etc...

hope your experience is far better than mine.

Cheryl's experience is similar to what I went through as well. Sometimes when the trache plugs up, you feel like you can't breathe and are choking. It can be quite terrifying if the nurses don't come right away when you need them.

Some of the nurses seemed better trained and/or more sympathetic than others. A few were quite ignorant of the needs of someone with a trache who is choking and can't get oxygen into their lungs. Some are better than others at noticing some of the little things like bed positioning, keeping your body physically straight and supported with pillows, etc. This was more important the first couple of days when I could not speak, wasn't sure how much I could move with all the IV tubes, oxygen tube, nasal feeding tube, heart rate/oxygen monitor thingie attached to a finger or toe, trache, wrapped up wrist, wrapped up thigh, bandaged neck, etc. I was a bit uncomfortable at times and felt as though my ear was folded back on itself when it was not - there was some nerve damage when they opened my neck up for the dissection. It was quite disconcerting with so much junk connected to me, being quite weak physically (from just having undergone a rather extreme surgery), and being unaware of which tubes I can move without setting off the code blue alarm, and having 15 folks racing into your room from various floors of the hospital.

Also agree that the whiteboard and erasable sharpie is a good idea. Someone brought me one a few days too late after I was able to speak, but all I had when I really, really needed it, was a clipboard with some scrap paper and a dull pencil. I had brought a pen and pad of paper with me and used that initially, but one of the doctors stole my pen! I had an iPad and a neat little app that speaks what you type into it, but chose not to bring it with me for fear of theft - you will be quite groggy and unable to keep an eye on it, so unless the area is secure, I wouldn't risk it.

I put my ipad under my pillow.
I too had a crapload of extra attachments.
I had a catheter which was poorly situated, so here I am in the step down until less than 12 hours after surgery (I was brought in at 1 am - it was a 14 hour surgery) and they had me up in a chair at 6 am - with an IV of hydromorph. Now first off. Remember I couldn't talk. There were 4 patients, most of them in bed - and one nurse. I am sitting there and I feel my bladder filling. So I try and attract the nurses attention. Now in the back of my head I KNOW I HAVE A CATHETER IN. I also know that there must be a problem with it if I feel like i have to go (I used to be a nurse so these things immediately float through my foggy brain) So I get her attention and she comes over and instead of giving me a pen she tries to find out what is wrong using hand gestures (hello stupid?) I kept pointing to my bladder and she says maybe you have a bladder infection????!!! UH NO... I know this is not the case. Anyway she gets me on my feet in my drugged out stupor and sure enough don't I drain a full liter of fluid. Then she sits me back down. Now. she goes on break. another girl a little further up the developmental chain comes in, and I again start to feel full and this time I am swelling up like a balloon (bladder full - etc...) so i get her attention. At this point nurse one returns from her lunch and new nurse says there appears to be something going on with my catheter. Nurse one says... oh yeah i called for an x-ray to see if she has a bladder infection or something. The catheter is fine as she just drained a litre. What she neglected to do was put two and two together. it was in fact the catheter, since the only time it drained was when I was STANDING!!!
And this was the woman in charge of making sure I didn't die on her shift. Very scary. I'd also like to point out that aside from the meds they were running 500 mls of fluid through the IV constantly...
so I had to PEE constantly.
By the end of that day less than 24 hours later they had put me in my own semi private room. And stupid nurse comes in and finally changes the catheter saying that she could remove it ???!!!! (hell no I could barely walk!!!! let alone get up hourly to go to the bathroom) but then she said that the night nurse (who was no prize either) would be upset because she'd have to help me to the bathroom frequently (NO SHIT SHERLOCK!!!) Never mind the fact that I was just off the cutting board...
ergh.
The whole scenario still pisses me off.
anyway.
Post op hardware:
1 catheter
1 IV (in my damn foot)
Dressing and staples on my wrist (donor site)
dressing on my thigh (secondary donor site)
Trache
NG tube
and two drains from my neck incision
FUN WOW.
All in all day two I was up and had a shower.
BY MYSELF.

you will be fine. hugs

Wow, that's a little bit of a funny story now, but I'd certainly have been pissed off too.

I also had a catheter when I first got out of surgery. Quite uncomfortable and painful when they removed it, eeeyowtch! Since I was still in the step-down unit with four other patients, some of their visitors and three nurses, I had trouble peeing into the little plastic pitcher they gave me. Stagefright encouraged me to figure out how to stand up and disconnect the IV-hanging, brown-goo-food-dispensing, oxygen-monitoring, annoying beeping machine, and wheel it behind me to have a pee in peace, while flashing my backside through the silly unfastenable hospital gown proudly to all who watched.

Eric, I hope we haven't scared you too much! I hope your surgery and recovery goes well. Let us know how you're doing when you are able to. We'll be thinking about you.

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