Status post mandiblectomy with fibula falp x 6 days waiting on path reports....scared, scared and pain.

Make sure to get pain meds to control the pain. If its not enough, tell the nurse, then tell the doctor. Get some action! Dont suffer in pain!

Every day after this major surgery will be a tiny bit easier than the day before. Hang in there!

Hi Sandy:
I sent you a reply this morning, but Christine was responding at the same time, so mine got ejected into outer space. So, let's try this again.

I'm sure you are scared witless right now. The surgery you just underwent is a major thing, and I'm sure it brings with it lots of pain. I can't even imagine what you are going through, but I suspect the high level of pain is probably one of the things that is clouding your judgment and making you the most scared. Will it ever go away - how long can I stand it - and a thousand other questions like it.

But, what I can do is be the outsider looking in and hopefully give you thoughts to help you get through each hour or each day, one at a time. Make no doubt about it, IF you are looking long term right now for the day you will be back to normal, with no or little pain, the light at the end of that tunnel is either not there or so dim as to be scary.

So, what do you need to do right now. Believe it or not you already know the answer. If you've read the OCF literature and others posts everyone keeps saying find positive things to take your mind OFF your troubles, even if it's just for an hour. Getting through this hour by hour, day by day is how we do it, and with the help of pain meds if necessary.

I've suggested to others to make a list, write it down and post it on your front door, so that when you are gripped by fear or panic you know where to walk too and read you list.

Some suggestions for the list - Join that internet movie rental company (I can't name it as that's advertising on the forum). In the Friends forum we have a movie and television show list of things you might not have seen yet, but that were found good by other forum members. All those shows are available for rent on the internet. Best thing of all, no commercials.

Likewise, Youtube also has a lot of stuff worth watching, particularly full shows by good comedians. Robin Williams, Kevin Hart, Kathleen Madigan, all the Redneck Comedy Tour guys (Foxworthy, White, Cable Guy and Engvall)

There are a LOT of full length music concerts on Youtube. My favorites are the Phil Collins concerts, but there are lots of bands available. I'm talking full length concerts here, the same ones people payed lots of money to buy tickets to go see.

Youtube also has full length movies. Type Armageddon into the search window and then look down the right side at all the others available.

What do all these things have in common? You don't have to go anywhere to do them. And for the most part they are free.

Go outside and just watch. Listen to the wind in the trees, feel the warm sun on your face, listen to the kids playing in the neighbors yard. Invite your neighbor over for coffee, but don't talk about cancer. Learn how to do something new that you don't know yet. You can learn anything on Youtube. I learned how to weld on Youtube. that might not appeal to you, but how to cook the perfect souffle might, or how to knit or crochet or even how to play bridge is there (I am a bridge fanatic, so I know what's on the internet)

Sandy, you can get through this, you will get through this. Just remember, it's one day at a time. If that's too big, it's one hour at a time.

Stiff upper lip girl.

Tony

Said a prayer for you. Hope you're going to feel better each day.

A mandiblectomy is a heavy duty surgery not surprised you're in pain. I imagine unless you are out cold it will still hurt some despite the meds you're on. That said I would make them aware of your pain. Not all medications work the same for all people a oxy puts me to sleep morphine goves me weird dreams - neither kill my pain, meanwhile 85% of the planet LOVES oxy... Go figure. They could try and find something that works better for you. hugs! And fingers crossed your path is clear of bad news.

Monday is here and waiting for the doctors with the path results have you noticed when you want them in your room you get nothing but when you don't they are there on the hour. Trying to keep my head about me today I did overhear I will be keeping my trachea for at least a month...now I have to decide whether I want to go home with it or to a SNF. Any suggestions. Yes meds are my friend and it looks like movies will be too.

Hope you got the possey muir valve trach. If not, ask for one now. Its the valve up top that makes the difference and wil allow you to talk. I think that would be a huge hurdle to get over and make you feel instantly better just being able to communicate easier.

When I went thru the mandibulectomy, I had complications and a very difficult time. Most patients who have no complications are out of the hospital in 1-2 weeks after that type of surgery. Of course it depends on how invasive the procedure was along with how easily the patient is getting along with their recovery. I was stuck in the hospital for 2 months with the first 3 weeks being kept in a medically induced coma. Lucky me, huh? Anyway.... I had my son to help me when I got home for the first month and then he went into the Marines and I was left to my own devices. If you have help at home then go home, if you cant depend on someone to be with you almost 24/7 then go to the facility. It takes ALOT of care, especially the first month. Gosh, just getting the feeding tube schedules down can be enough to wear you out when you are just out of the hospital. I know you probably want to be home but please be smart about this and dont rush going home. Its not easy to take care of yourself after a mandibulectomy. You probably have staples and skin graphs and all kinds of bandages on wounds to tend to and you really would do better if you have someone (skilled) there at the push of a button.

Hang in there!!! We are you new best friends and will help you get thru this rough spell.

(((HUGS))))

I am blessed so far no complications....also no results. I feel this will make a difference in how I decide. Can't really explain. Really depressed which is not usually me or my attitude. Just feel so much... Thanks for your courage and hugs...

It is so much to feel. Completely overwhelming when you look at the big picture, but one day at a time is a little easier. Glad there have not been any complications. Keep posting, we are here!
Kathy

The path results are in and they are clean.....feeling very blessed today. Now onward and upward to a SNF....that alone scares me but my journey thus far has been crazy,scary painful I know you all understand. I take my hat off, stand up to applaud, celebrate all of you...you make this doable. Thank you thank you thank you.....