my dad is 4months out of surgery, and the last two weeks were great! he was at my house most of the time, getting out and i even got him to go to the store with me, yes somewhere public! haha.. he was trying to talk, and just doing well! this week that sharp pain in his jaw is getting to him and he is in a huge funk! i called the ENT surgeon yesterday and he said that what my dad is experiencing at this point is nothing "unusual".. well how does one deal with this pain.. i mean come on now! he is still only on the 25mcg patch, and is now trying the tylenol with codeine.. i just feel horrible that i cannot help him at all.. i tell him how i get on this site and chat with people who have gone through similiar treatments and/or surgeries.. iknow he is afraid that the cancer is back! i pray to God that it is not.. i guess i do question is this pain normal for being 4months out of surgery.. i have read about the neuropathy, and try to explain to him that he will still have the affects of radiation as well as affects of this huge surgery.. i have not seen him this down and out in a very long time.. it scares me :-(.. thanks again for listening to me..
nicki :-(

Well Nicki,

If your Dad's pain is constant, he needs to have his pain patch dialed up to deal with the pain. If the pain isn't constant but happens only if he opens his mouth a certain way or only at certain times (after eating or such) then he needs a better breakthrough pain med like upping to oxy or hydrocodone.

Pain will put the body in distress and hinder the healing process so proper management is key. ENT surgeons aren't great at prescribing drugs really I know mine wouldn't write me a script but would refer to my MO or GP. So talk to either your Dad's GP or MO and update them on his pain situation.

Chronic pain is a very hard thing to deal with and will affect his moods and emotions. It really is a nasty thing and important to get a handle on, doing that should help his outlook as he heals. He may need chemical assistance there as well and again should maybe talk to his GP or MO.

Keep your chin up, we're here for ya.

Eric

Im sorry Nicki that your father is struggling. I hate to say this but yes, it is normal. He went thru a huge operation that takes a very long time to bounce back from. Plus on top of that he had radiation too. Combine those two things and you have a very long recovery period with lots of pain.

After my mandibulectomy, I was kept in the hospital for 2 months. I had complications and the operation had to be redone. I was in severe pain with many setbacks. When I was finally sent home, I was still in bad shape for a few more months. I would get stabbing pains in my cheekbone, shoulder and jaw. These pains were so bad that they would stop me dead in my tracks, frozen unable to move because of the severity of the pain. I had a picc line and took IV antibiotics for about 8 months. I also had a visiting nurse for over a year after I had my surgery. I explained all of this to you so that you can understand what your dad has been thru is extreme and how it is not a quick fix like healing from a sprained ankle.

Depression is also a part of this whole terrible disease and recovery. That is something you can help him with. Find a good therapist or psychologist (psychiatrist) to help him (sorry i dont know which doc prescribes the meds). Fighting cancer, the recovery, after effects and fear of a recurrence are enough to make the most sensible person a nervous wreck. On top of all of that is the pain meds which are depressants too. Many cancer patients need this kind of help.

Better days are ahead!!!! Hang in there!!!!

Let me make it a triple play, a trifecta, a hat trick by just saying I agree with everything EricS and ChristineB posted.
This cancer sucks and 25mcg does seem too little to me. I found the 50mcg much better. It takes longer than you want for the pain to subside to a dull roar. I'm three years out from the recurrence salvage surgery and still have pain in my left jaw and neck everyday but it's tolerable
Keep the Faith
Charm

Thank you guys so much for your responses. I think he is really worried at this point again, because the pain is not "worse" but more often. This week is extremely tired too. I explained to him that this is all a "normal" part of this, and not to be concerned. AND i agree 180% about the ENT with the pain meds. if it were up to his ENT he would be completely off of his meds! but just not possible.. so it is normal to have good weeks and then have such a bad week? I did speak with the ENT and he said at this point, he is not worried that the Cancer is back, BUT will always worry because it was such a bad one... I will maybe suggest to my mom increasing that patch.. i guess his main concern is the fact that the patch was fine along with the Norco every 6 hours and now that is just not doing it.. because he had a reoccurence in the past, which of course lead to this horrific surgery, he feels he is going backwards. i am going to go ahead and copy and past these responses and email them to my father.. thank you all so much.. this website has become such a huge part of my life.. first thing i do after i put the kids to bed :-).. thank you for your kind words and inspiration!
nicki

Forget the ENT or RO for pain meds - go to the MO instead. They seem to have a much better understanding of these issues. If your dad is getting 25mcg of Fentanyl, that is the starter dose. I only had radiation and was up to 75mcg of Fentanyl (a few here have been up to 150 mcg) and morphine for breakthrough pain. Tylenol w/codiene is pretty weak.

Bed sure to describe his pain using the number system, 10 being the worst. He pain shouldn't exceed a 3 or so.

Never alter the dose without specific orders from the doctor.

Fatigue is also a well known side effect of radiation.

Agree with Gary..we felt like our MO was the "go to guy" for most all issues and specifically meds.

Deb

Nicky, Christine is absolutely right. I am two years out of surgery and I'm still on morhine 15mgs every 4 hrs, and I just decreased my patch from 75 to 50 to start weaning. This is a HUGE and very invasive surgery. Four months is really not long. I went throught the same thing, I wanted my life back so badly that I thought I should be all back to normal. Well, it takes time and lots of time. I also suffered severe panick attactks and depression. I am single, so my poor daughter of 16 or 17 slept in my livingroom with me for over 3 months. I was petrified to be alone. Also, because of radiation, I went through an awful period of choking on my saliva, it was so bad that I used to choke. Tell him it gets better,Just different stages that you go through, but I promise it gets better

OCS - you sound like me - the choking is the worst - sometimes I choke so badly I vomit - but it's slowly getting better - you are doing so well 2 years out - it's a hard road - but we try to hobble along it the best we can - good luck on the weaning - I'm only 2 weeks post rads but have been lucky with the pain. Down to 2 oxy 5s at night - other than that I get along ok during the day. Have a good week!

Cheryl, I would choke so bad that I would also vomit. I would not be able to breath and I would run to my parents appartment downstairs. Yes, my parents live in my downstairs appartment. Thank god because I seriously don't know what I would have done if they werent here. I really thought I was not going to catch my breath and I didn't want to be alone. Mussinex and hot tea with honey helped me a great deal. I woke up at all hours of the night for at leaast two months after radiation. Best advice I can give is Mussinex every 12 hours and when the choking starts, hot tea with honey....It really works!!!!!. Best of luck Cheryl.

Misty