Hi Will,

You have done so well so far! Ken had to start higher levels of pain medication by week 3. Has Dr. Clark sent you to see the Pallative Care team? Ken talks with one of the nurses weekly about his pain and she monitors what he is taking. It might be worth asking about. Ken sees Simone Rinaldi who works with Dr. Kamdar (not sure of spelling). He is hoping to finally start tapering his meds soon with the goal of going back to work on 5/25!

Good luck with your recovery!

Will,
To me the first 10 days afterwards were the worst of everything, although the last few days of the last week were not overly great.
Actually the end of the 1st week post TX was the very worst for me.
I thought my husband would have to take me to a hospital one night, so for the first time I took something prescription for pain, then I slept. Otherwise I had Extra Strength Tylenol. I took it one day at a time. I had not had much problems with sores until the post treatment time. My skin got red in the 5th week, and worse by the end of the sixth week, then continued the same for two or three weeks, then it started to heal.

Undoubtably you will have your own version of recovery when yours is done. The important thing is you are nearly through with TX, and have done well. Keep on top of your mouth--soda rinse, Manuka honey if you've tried that. That's key to me to keep away from the pain medicine. But don't beat yourself up over having to resort to something.
Anne

Thanx Anne, Actually, the honey has already saved my butt and I'm convinced it's why I got through the wholw TX without any mouth sores at all. Now that my TX is finished I am getting some long sores along the sides of my tongue and at the way back of my tongue and mouth roof. The honey burns so I just swish some numbing magic mouthwash, and gargle it before I swallow it. Then I'm safe to use the honey and it gets rid of the sores in about 15 hours. That's for the small ones. They start like little clear perfectly round blisters that when they break turn into a slightly larger blood blister. That's when I use the honey and they go away. The big ones along the sides of my tongue and the ones way in back which are actually behind my uvulia I think I will have for a while. They're white and resemble the scabs left from my tonsilectomy. The honey is definatley working on them but I think I'll have them for at least another week. Thanks a ton for your feedback. Today was a good day and I think it may be down hill from here. I'm hopefull and optimistic. Thanks. Will

I'm with Jennifer - 2 weeks post Tx was the bottom for me. Thank God for Fentanyl & Morphine.

Hi Will, I am a recovoring addict also. The pain managment was very scary and some days I wasn't as honest as I should have been. Two things helped me. I continued to talk about how much I was taking, I kept in contact with my support group/people sponsors, fellow addicts and supportive friends. I then went to a pain managment clinic and worked with the people there. I had a lot of pain in my tongue and I also had/have neck pain and issues since all this started. I didn't fully get off all the pain meds for quite awhile. Just keep being honest and keep people informed. As soon as you keep it a secret I think its going to cause the most damage. I think the best thing was I didn't want to lose all I had as a result of this horrible desease. The pain managment clinic was great.

One thing to add I was very obsessed with the pain killers, managing them and the effects. Its funny how quickly we become so pre-occupied again.

Will

The weeks after the first TX was over were the worst in terms of pain. While I've never been addicted, I do have a very large tolerance to pain medications as a result of a wayward youth so I was very glad for the fentanyl patches. They were the only thing that really worked for me.
Hang in there. You have done so well and soon you will be a seasoned survivor who can tell the newbies that all is not doom and gloom. I don't know if you run races, but if you do, then this is just that last sprint at the 5 mile marker so you can be in the winner's circle of the 10K. Now is not the time to falter.
Charm

Thank you all VERY much. I couldn't agree with you more Wendy. For as much as my mother will ALWAYS worry about me using,suspect me of using, look at me like I'm using, ask me what I was doing in the garage last night, go through my stuff, and ask my X-girlfriend if she thinks I'm using, I will never be able to convince her otherwise. In fact... I came to the conclusion a long time ago that I really don't (can't) give a flying crap. You're right, all I need to do is be honest with myself. November 2005 was the last time for me and I have several friends in NA who's help I will be enlisting as soon as the pain subsides a bit. They have been notified and will be hearing from me soon. Thanks again. Will

Hey there, Will. I read your post only today. I wonder how you are now. I concur with everything Jennifer wrote. Recovery is a slow process. I am nine weeks post treatment and I would say I only started to feel good for about the past two weeks. I have started driving and going out alone and eating by mouth though I still have the tube. Pain wasn't so much an issue for me as mouth secretions and being unable to talk for about one month. Someone on this site said about radiation: it's the gift that keeps on giving. How true. Hope you are feeling better. My best to you. -Michelle