Christine, Thanks so much for your thoughts. I doubt that I even could get 4 tongue depressors in! It's jaw pain at the joint. The dynasplint gal gave me a card and at the beginning, a few weeks ago, I could reach 20 cm. Now I can't even get the card in my mouth! My radition Dr. had the Dynaplint gal get me this apparatus that is used for stretching your mouth but she told me to quit using it because of the pain.
I have plenty of pain medication, including patches. However, anytime I try to open my mouth to do any of the exercises that they've taught me (this through the speech therapy dept at Johns Hopkins), the pain is extreme. Perhaps what you've suggested (just opening wide several times a day) would work better for me. The real problem with the pain meds is that I live alone, so to be able to drive I really have to hold back on the pain meds. When I know I don't have to go anywhere that day, I can load up! lol. My daughter is due any day now (she's a week overdue with my first granddaughter) and lives about an hour away off an Interstate! So I've been holding off on the pain meds even more!
They have me working with the speech therapists because of the aspirating! My swallowing function is all screwed up and so we're tring to stretch my tongue, which doesn't even go out of my mouth any more.
Looks like we have been dealing with this cancer about the same length of time. I was a stage 4 by the time they figured out what was wrong and that was Spring to early summer 08. no, I guess you've had a year longer than me.
It helps so very much to hear from someone who has a clue about what I'm dealing with. I hope we can keep in touch on here. Have I posted this on the right forum? There don't seem to be many people on this section. I have somewhat of a problem figuring out this site.
Did you have to have your teeth out?
I have my 3rd PET tomorrow. The last 2 have shown no cancer but the Dr. says that usually with this much pain there is cancer present. Thank you again so very much. Wish me luck! Nancy