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.