The last 4 or 5 days my tongue has been killing me, getting up every 2 hours on the dot all through the night. Massive amounts of drool,yet a very dry sandpaper feeling across the wound. It is bleeding more as well as throbbing more, I am trying to get back into the doctor tomorrow for a quick look to see if it just may be infected from the last biopsy. Boy I hope that is all it is, Ive been in shambles thinking " Great, now what?". I am just ready for the day to get here and get this out of my mouth, I just do not understand why it has been bothering me more as of late. The lidocaine is only lasting about 45 mins tops, and anything I drink or eat irritates it sooooo much. To be perfectly honest, I am getting scared again and try not to tell my mother or fiance too much because I dont want to worry them as well. Tonight is the 5th straight night I cannot rest due to the constant throbbing and pain.

I dont kno if it is just mental,or something I ate, just part of the struggle I guess...Surgery coming up on the 16th,and cannot wait. The pain meds are not working so well nor the mouthwash, only lidocaine for a bit. Could it be the lidocaaine drying up and filming over the wound? Any experiences here?

Nathan

Tell them you either need pain meds that work and there are PLENTY to choose from or they need to perform the surgery tomorrow!

Hey Nate. I would call the dr and tell them that having cancer and waiting for surgery is torture enough and you don't need this pain to please give you something else for now. My sister was in pain before surgery too. She had a hard time eating and was getting severe eye and head pain. They put her on percecet but that was to hard to swallow so they switched her to liquid Tylenol with codine. Hope you feel better soon.

Nathan - you sure don't need this kind of pain! I agree wholeheartedly with David and Susan. You said you were getting in to see the doctor today so be sure and tell and show how much physical and emotional pain you are in. You really need to get some rest and with surgery not until the 16th, as David said, you need the pain meds now! I know you don't want to worry your fianc� or your Mom too much but the people that love you want to help and it makes them feel better to know that they are able to do something for you. Let us know what happens, ok?

Hey friends!

Well I had the fiancee call the doc for me friday and luckily they wanted to see me right away. So she took me down to ol' LBJ for another adventure and we actually got in very fast for a friday. They had a look at me and said it did not look infected but looked irritated possibly from me doing something in my sleep. So he prescribed me 3 different kinds of mouthwashes, and a stronger vicodin as well. Still not getting as much sleep as I would like but it is getting better, I am trying to meditate more and act as if I am somewhere else. The docs basically told me to hang in there, and since I am in a county system I am in line so the surgery is set in stone yet they all seem very confident about getting this bad boy outta' here. I will keep you all posted, officially took a LOA from work til this is over,just cannot take the heat anymore with no rest and pain. Thank you all!

That's really great, Nathan! I'm glad things are getting a little better and it sounds like things are moving along. How nice that your fiancee is helping you with this, too. I really means a lot to have someone with you when you go for appointments.

Nate, how are the mouthwashes and stronger vicodin working? You need your sleep, so hopefully, those are helping!

The mouthwashes are doing ok, but not anything to write home about ya know? Um...I went in to oncology last wednsday and two other doctors/surgeons from MD Anderson looked at me and said "hang in there!" and I told them I still was only sleeping a few hours of sleep and it still throbbed and got extremely dry and stiff.

They prescribed me morphine and that has done nothing but make me even more irritable, extremely constipated and even difficult to urinate. Still wake up through the night, surgery just days away and I am literally just trying to tough this one out and not try and take it out on Korinne so much.

But the medecine makes me jumpy and all junkie feeling and I still hurt. I can only get the lidocaine to numb it long enough to sleep for about 45 mins, Im just in bed longer to make up for it. Having alot of verbal warfare with close friends and Korinne an am just tired of it. I will say one thing crazy is that days have just flown by, I did not realize how long it was since my last post. Thanks All!! Much Love...

Nathan

Try asking your docs for the fentanyl patch. It will help with the pain and you only have to change it every 72 hours. Just be careful with it, the medicine is the strongest pain meds you can get. Do not tear or fold it and no hot showers, both of those could cause some extreeme side effects or an overdose. Dont mean to scare you about the patch, I loved it and had no problems with it at all. It worked for me and many others here.

Sorry to hear you are grumpy. Its not easy getting thru this but you can do it. The lack of sleep is making things worse. Did you ask for sleeping pills? I had to take those while I had chemo/radiation treatments.

I love the signature....We will Prevail!!!!

I second Christine's fentanyl patch recommendation. Blame it on my hippie youth, but I disregarded the scary guidelines. I had zero problems with it even though I did take hot showers and I changed my patch every 48 hours because it never lasted three days for me. Plus I took alcohol. I told my doctors about my disdain for the protocol and their response was that those guidelines are intended as general ones and like everything in Cancer TX, individual responses vary. Not suggesting or recommending that you do the same, just wanted to give a different slant on how convenient and wonderful the patch turned out for me.
The only rule that I broke that had consequences was when I foolishly quit cold turkey - that was a mistake and I had to start up the patches and gradually wean myself off.
Charm

I think this message has already got through, but just in case - don;t hold back on the meds.
Ive never been one for painkillers and so tried to go the minimalist approach after biopsy 2 (pre surgery). Bad decision....referred pain all through my head. Sleepless nights etc etc.

Didnt make the same mistake post-surgery and dosed up good and proper! Never quite found the ideal solution, but never skimped on amounts!

all the best
jon

Thanks so much Jon, I am glad to hear I have a fellow surfer/skater here in the forums with me. I am pretty nervous about next week,I am just so ready to have this removed from my tongue. I am ready to start over and begin my " new normal " Life. Thank you for the words, I cut the morphine way down to just when I sleep and just vicodin during the day and lidocaine,lots of it. I want a stress-free life at the beach next Jon! : )

Nathan

No problems
Stay positive (as much as you can) and be confident the surgery will go smoothly!

all the best and positive vibes!

cheers
jon

Hey Jon,

Really just been hoping to find you, I have had you in my mind this entire time because I feel a bond with you unlike others. I am a longboarder/skateboarder as well as musician. Played bass for 15 years and havent touched it in months. Right now I want to but still cannot feel my shoulder from the neck dissection. You have inspired me through most of this and I wanted to tell you that I tell myself my outcome will be the same as yours. Pathology results tomorrow, thanks for reading if you did.

Nathan

Hi Nathan,

The fetanyl patches work a treat. To make them stay on for 3 days i had to put "Hypafix" over it (a sticky retention sheet). If the dose doesnt reduce the pain then go up to the next one. I had so much pain that i cried like a baby for days until my chemo doc prescribed me them and i took hydromorphine for breakthrough pain. Anything to make you more comfortable then you can recover quicker. You can get over the counter stuff at the pharmacy to fight the constipation. Yeah you do end up taking a whole heap of pills, but they do help during this very uncomfortable time.

Minh

Hey Nathan
positive vibes coming your way mate. Hope the results are all OK...

My skating days are behind me (my body never reacted well to concrete!) but still surf. I had a whacky arm thing (damaged nerves) after my surgery so it was a couple months before i could paddle, but when i finally got out on a absolutely stunning day in late Summer it was magic.

As for music - get back on the bass man!!! Bass is king.

oh and re your shoulder, mine was pretty weird for a while too, but less noticeable cause my arm was such a mess. But still today has weird sensations, not painful, but not normal. Same with arm where they took the graft.

You get used to it and as its always getting better doesnt bother me at all anymore.

peace
jp

There *are* forms of the Fentanyl patch that you can cut and fold, but you must be sure you have that form. It's the older style with the drug contained as a gel or liquid of some form inside the patch that you cannot cut, but there is a type where the drug is embedded into the plastic itself that you *can* cut. The "never cut the patch" rule only applies to one form of the Fentanyl patch.

That said, I believe I had very bad reactions to the Fentanyl patch, and getting off of it, even tapering down, was hell for me.

Everyone is different. But for me, I would and will avoid opioids in the future if possible.

-Seth

NATE - been a week or so since your last post. How's it going? how's the pain? Let us know, hey?

David 2