Welcome to OCF, Lisa! Im very sorry you have a need for our group! Im very glad you have found our site. We're the very best place you can go for info and support for anything relating to oral cancer (OC). Learning about your illness will help to make you a strong advocate for yourself.
Best thing you can do to help yourself at this point is to eat. Have all your favorites, desserts too
Dont worry about calories or gaining a few pounds. During your upcoming treatments you will probably be like most of us and lose weight. If you're on the average or slim side having a few extra pounds going into this is a smart thing to do. Once you get going with treatments, you will need to focus on your intake as much as you can. The better you do, the easier things will be for you.
If you can, go for a second opinion at a comprehensive cancer center (CCC). They use a team based approach so all the specialists are on the same page. The doctors get together and discuss each individual case (tumor board meeting) where patients can attend and ask questions. This is how the US's top treatment facilities operate and patients who are treated at those places do better than those treated at small facilities.
As you share your bad news with friends, loved ones and co-workers you will have many offers to help you. People are genuinely good and you definitely will need help to get thru everything so its a good idea to take down their contact info and begin a list of helpers. Hopefully you will have someone who can be your caregiver. Anyone who has offered to help, take them up on it. Even if its just to drive you to your treatment one day a week, its a help. There are a million small things that can be done to make this as easy as it can get. Dont be afraid to speak up and ask for help! Anyone who asks what they can do, they really want to help so if you need a hand so give them a job. Take out the trash, do a load of laundry, walk the dog, mow the grass, pick up children or even playdates so you can rest, picking up groceries or cooking your family a meal are all great small things that add up to making your life easier in this difficult time.
Prior to starting any treatments make sure you see the dentist for a thorough check up. If going thru rads you will need to get flouride trays made to protect your teeth. You should also have a full blood panel done including thyroid and for men testosterone levels. Its very important you get this done before treatments so you and your doc know what your numbers should be. During and after treatments your numbers will be all over the place. Many rad patients for OC end up on thyroid meds due to the radiation negatively affecting their thyroid.
Hang in there and dont hesitate to ask questions. We'll do our best to answer and help you get thru whatever path this takes you.
PS.... Heres a few helpful links. If you havent already checked out the main OCF site, heres some links to read thru (or your mom can)...
OCF main site --- Diagnosis OCF main site --- Treatment NCI list of CCCsUS News Best Hospitals List
