 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Hi Ed. Welcome to OCF. You have found the very best site to help you with your battle. Its ok to sound bleak, cancer is no laughing matter. It really is a battle, a huge one!!!
Sorry to hear you are struggling so much already. Have the doctors said it will get easier to breathe as the tumor shrinks? There are not alot of members who have oropharynx cancer w/ neck metastasis but there are many experienced people who will help you.
As far as your pain goes, its ok to take pain meds so you do not have to hurt. Being in pain does nothing at all to help the patient. If your pain meds arent strong enough, ask your doc for the fentanyl patch. They come in 12.5mg, 25mg, 50mg and 100mg strengths. They have to be changed every 72 hrs. Why I suggested this to you is because that it would give you a steady amount of medication. Then you can get some other meds to take occassionally for brakthru pain.
It must be horrible to have the sleeping problems you have described. I also had some trouble sleeping, but nothing like what you are going thru. I would go for days with no more than 2 or 3 hrs sleep a night til I was so exhausted that I would sleep for 10 hours straight. Ask your doc for sleeping meds that are ok to take along with being on painmeds.
Most important things to remember thru this. Keep yourself hydrated with at least 48oz water daily. No matter how much it hurts or is difficult to swallow keep doing it. You will have much bigger issues later if you dont keep those muscles active. Next tip is to keep your nutrition up. Your intake should be at least 2500 calories daily, more is even better. You should have alot of protein to help with healing. A feeding tube will greatly help you with this. When you get the port and feeding tube, ask for a pump so you can do the feedings overnight. I have lots of feeding tube tips cuz Ive had one for 2.5 yrs. I had a port too, its wonderful not to be stuck so often with a needle. Another tip is to several times per day to stretch your mouth open as wide as possible and hold it open for a few seconds. Do a couple sets of this exercise to help prevent yoru jaw from tightening causing big problems later.
Please feel free to ask all the questions you want. We are here to help guide you thru this. Best of luck with everything.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | 
