Hi, Sone -

I might also suggest an exercise routine my prosthodontist gave me: Using the thumb of one hand and forefinger of the other, pull your mouth open as wide as possible and hold, stretching the jaw muscle (not til it hurts a lot, but you need to feel the stretch!). Hold for a count of 7, then repeat 10 times. Do this routine three times a day (I do it after eating just to be sure I remember).

This ideally will enable you to maintain/improve your mouth opening. I'm about to start radiation myself and have been told it's crucial to keep doing my exercises throughout (I'm anticipating extra pain from the radiation, so haven't had to face that yet). My prosthodontist said that if I feel I need a Therabite to help me through, I should definitely get one -- consider that, too. Just Google it to see some info.

Good luck as you continue your treatments! We're all pulling for you!

Remember it's Carnation VHC and it has 560 calories. You don't need a prescrip but you must either get it online or from the pharmacy dept of like Walgreens or Cvs. If you do order it online be sure to use Amazon and give the credit to this site as we get a kickback and it won't affect your price.

I have been gone for a week. When I returned, I was busy reading all the new posts. Sone, I want to encourage you that you can do it. I have not had to do radiation yet, but possibly someday I will. I know that I will be coming back to this site for the encouragement and the push to continue on. You are very brave, and so is everyone on here who as gone through it. I just hope I am as brave as you all. This cancer stuff us nasty and so is the treatment for it, but necessary for life. I will be praying for you.

Sone,
I am a Christian and truly believe that God "...never gives us more then we can handle", although I wish He wouldn't keep testing me!

Prayer and a lot of people praying for me, certainly helped my peace of mind and resolve. I do believe that God enables the doctors to do the treatment and He does the actual healing. There were many times when I had to ask (or pray) for the strength to carry on and get through treatment. It was, by far, the most difficult time in my life but now I am over 6 years cancer free and active, once again, serving in my church's music ministry.

I will keep you in my prayers as you complete your journey through this.

So here's a post for those of your that think Gary and I never disagree on anything or team up to be critical of someone.

With respect to everyone's belief systems, and meaning no offense to anyone. That is probably the quote I hear the most from people, and like the least Gary. How often have we seen "God" give good people more than they can handle on these boards? Or around the world in the form of starvation, disease, social upheaval that they are innocents caught in the middle of and more. I think that prayer is a powerful thing, and there is no doubt that those with strong religious beliefs (regardless of what kind) do better emotionally when adversity is upon them. But I am less sure that God is always listening. Besides my experiences here with this disease, I held far too many good, faithful, young, boys in my arms in some far away rice paddy as they died. I think it is fair to say that in either case they were given more than they could handle.

Having said all that... I'm ready for all the slings and arrows....

Surely there have to be better religious quotes than that one.

Would you believe 19 down and 14 to go?!?!?!

My RO has me doing double treatments of Fridays (which is Thursday this week since they are closed on Friday due to the holiday weekend). Did any of you do double treatments on Fridays? My RO wanted me to do them since I didn't start radiation until 9 weeks post surgery, and he said ideal is to start 6-8 weeks post surgery, so he wants me to "catch up". He said it is especially important now since I missed a week of treatments. I guess this makes sense, but boy does it wipe me out. I feel like a train hit me! I can't get up out of this bed now due to extreme fatigue and nausea. I hope it's better tomorrow.

Thanks, Brian and others, for the info on trismus. I've never heard of it before, so I asked my RO about it today. He said, "Oh yea, that can happen, but I don't like people to stretch too much before radiation is complete because it can cause damage to the teeth." I don't get that, but he gave me some wooden tongue depressors anyway and said I could do some "Light" stretching with them, but nothing too aggressive. I think I'll start right away! In fact, let me see...I can get in 20 tongue depressors!!! Yippee. They don't want me to start with a speech therapist until after treatment is complete also. So in the meantime, I just talk funny. My 8 and 10 year old kids say they can't remember how I used to talk when I was "Normal Mommy".

Also I asked the nutritionist today about the CIB VHC. She gave me one can as a sample and said I might need to thin it with skim milk (which I drink soy anyway), so we'll see how that tastes. Any suggestions on recipes to make it taste good? Thanks too on the tip about giving this website credit on Amazon, I'll be sure to do that if I order some there.

I noticed today, especially after 2 treatments in one day, it is really hard to swallow. I'm trying really hard to keep swallowing, I don't want to lose that ability. I know many of you ended up on a PEG, and I might too, but I want to avoid it if I can!!

Regarding the God discussion...I'm not sure why there needs to be suffering in this world. I especially don't get it when I see small children with cancer, I don't know if I'll ever get the reason why that needs to happen, along with all the suffering that takes place in third world countries. I do know, though, that without suffering there would be no compassion. And, I truly believe that we are meant to love and serve one another in this world. What a beautiful testament this website is to loving and serving one another, so thank you for that. And since I believe in the strong power of prayer, thank you for all of yours. I'll keep you all in mine as well.

Until Monday...
Sone

Sone,

I don't know how I missed this thread. I don't think I have ever come into any thread after 55 posts.

I just want you to know how thrilled I was to read through these posts and to see how you responded to them and have gotten so far in your treatment. I am proud of my family here at the OCF in how they prodded, no kicked you in the butt, to get you to do what they KNEW you had to do. Gary's, Ray's and others blunt words were just what you needed.

We all know you can do this and although I fortunately never needed radiation, I feel like I have lived through it many times over the last 4+ years with so many of my friends.

I can't for the life of me understand why your RO would feel that stetching would harm the teeth. If you don't mind, could you ask him to elaborate on this and let me know. I will be away for a week, but will check back here to see if you found out.

Good luck with you continuing success in completing your treatment and I wish you a speedy recovery.

Jerry

PS Brian, no slings and arrows from this member.

Awesome news - only 14 left. I sure understand the extreme fatigue and that will stay with your for awhile - it might even get worse before it gets better, but your job right now is to take care of YOU.

Get your food, get your rest, and get your treatments. Sounds eash eh?

You are doing awesome. Keep up the good work.

As far as recipes, I can't help alot with that - I managed to swallow all the way throug treatment - both times. I know alot have really loved smoothies and I'm sure they will chime in with some great ideas.

Take care.

Donna

Hi sone
robins treatment took him over the easter holidays so he got double whammy a few times as well.It totally wiped him out,i think he slept for the world,and it made his voice very hard to hear,but like all the rest of it ,he got through,and it wasn't as bad as the week they decided to give him an intense dose in a specific area for a few days towards the end of his treatment.

you are doing great

love liz

See prayer does work.... I was praying that you wouldn't take my post in a bad way.... although Gary hasn't seen it yet, so I'm still bracing myself.