Welcome to OCF! You are in the best place to get info and support to help you get thru your upcoming surgery. Ive sent you private messages (PM's). Please click on the tiny flashing envelope next to your My Stuff tab above.

I have had the surgery you described. Its not easy, but many have been thru it successfully. Best thing you can do is to be treated by a very experienced surgeon. You should also seek out a second opinion preferably at a Comprehensive Cancer Center (CCC). Thats where all the specialists work together using a team based approach for each individual patient.

Every patient is different and will respond in their own unique way to everything. The surgery is a long one, usually 8-11+ hours. Of course this would depend on each patient, Stage, tumor location, other health complications, etc. One very good thing is being young, its a huge benefit for you! That means you should bounce back quicker than someone older who has other health concerns. Expect to be in the hospital at least one week, usually most are in for about 2 weeks.

Make sure your physician manages your pain by prescribing 2 different pain meds. When you wake up you are likely to be pretty sore. With 2 pain meds you will never have to suffer in pain waiting until its the right time to get your next dose of pain meds. You can switch off and on so your pain is always managed.

You likely will not be able to speak very clearly when you wake up. You probably will have a trach too. Ask for a possey muir valve trach so when you are able to talk you should be able to do so with that type of trach. If you dont ask for it you probably will not get that kind. Take a dry erase board with markers, have someone bring you your cell and if you have one your ipad. Download and practice using an app called Speak It. This will do your talking for you by saying whatever you type in. I had a close friend who lost her ability to speak and strictly used Speak It as her voice so I know it works very well.

Try to have someone stay with you as much as possible even if you are kept asleep for the first couple days. Hospital staff will be in and out of your room 24/7 without regard for the time of day or night. They will also likely walk into to your room talking to you, expecting answers until they read your chart and see you arent able to talk well yet. You should have someone there to be your advocate to talk for you when you arent up to it. Try to round up a few people who can take turns sitting with you while your in the hospital. You should have some helpers for at home when you are able to go home too. Make a list of everyone who offers their assistance. Tell them when the time comes you will let them know what they can do to help. I was not able to eat but dont you know, the kitchen still sent me a full tray every meal for weeks no matter how many times I told them to stop sending unwanted food trays. Things like that can get annoying when you arent feeling well. Having family and/or friends around will help you avoid things like kitchen error and chatty hospital staff.

You will have drains and have swelling that may be uncomfortable. Both are temporary. Just remember no patient ever thinks they get well quickly enough. Swelling can take months to completely subside. Its a very big surgery and will have a long recovery time. Seek out all the specialists you can to help you get back to your old self. The faster you get PT and speech therapy, the quicker you will get back to normal.

Ask your surgeon if they take frozen sections. You want to ensure you will only have to go thru this major surgery once, that your surgeons will eliminate all the cancer with wide clear margins. Did your doctor have any other treatment (like radiation) planned for down the road? When is your surgery planned for?

Best thing you can do is to read here and the main OCF site to help educate yourself about your illness. An informed patient is a strong advocate for themselves. Before you have any treatments get a full blood workup done including thyroid and testosterone if you are male. You can easily have this done before your surgery, getting these baseline numbers later may not be an option. I know Ive given you tons of info but its really just the tip of the iceberg. A mandibulectomy (jaw removal surgery) is very involved and an intricate surgery. Hope I havent overwhelmed you with too much info.

Hang in there! You're among friends who understand where you are coming from. Best wishes!!!

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