Hi Marv-

I've been reading your posts and my heart goes out to you. I was Stage 3 SCC and had my surgery this past Feb. 2018. 2/3 of my right tongue was taken out and the grafting to reconstruct the tissue was taken from my arm and my leg. I've just started PT because I still can't straighten my arm where the grafting was done. I finished 35 rounds of rads in the middle of June but decided NOT to do the Cisplatin. Making that decision was difficult but I feel good about it. The rads were very difficult come Week 6 and 7. Tired, worn out and couldn't eat via oral cavity anymore. That bummed me out. Going each day for the rads gets to be so tedious. But you do it!!! Not a day went by that I didn't cry over something. Unfortunately, I don't have great support from my husband but do from friends and neighbors. I have a strong faith and I've asked God multiple times to take me to Heaven throughout this journey. I went through anxiety, depression, loneliness and fear. What kept me going....my faith and my daughter. I started journaling and really looking at keeping my soul happy. I gave myself permission to heal and lots of time to rest w/o feeling guilty. I am almost 5 weeks post rads and still struggle with the healing on a daily basis. Some days I get a tiny glimpse of what my life was like before all of this and then other days I can't believe that I'm still so far out from feeling normal. I don't know if I will ever feel normal again- I don't think so. It'll be different.

I have a PEG tube that was inserted at my hemiglossectomy surgery and I still use it multiple times a day 5 months later. This is what has kept me alive! I cannot imagine having the pain and discomfort that I do and trying to eat solid foods. Great nutrition is the key to healing!

I'm glad you posted the information about the THC oil. I live in a state where marijuana is legal and I tried some during and after radiation. Unfortunately, I used the vaporizer pen and it didn't feel good to inhale. Bothered my mucosal tissues and tongue. But after reading your post about the hemp oil, I think I'll try that. For some reason, I keep biting down on my native tongue (mouth is not used to shape of new tongue!) and opiates don't always seem to help the pain. Sometimes, as I'm falling asleep all of a sudden I'll be jerked awake by the pain! It's so frustrating!! And I don't even remember biting down on it! So annoying!!! I know it's happening though as I can see the imprint of my teeth on my native tongue. Question for you though- are you using 100% THC oil or CBD? I've read that the CBD oil can give you the analgesic you want but w/o the feeling of being high. What's your experience?

I had to empathize at your comment dated 7/18 about "people smiling and telling me I was going to beat this". It's so hard, I know. My husband would say, "This is really hard for us to watch you go through this." I had no sympathy for him but that's another story. Can't compare to the actual person going through the treatment. I have a friend who is a retired oncology nurse and she said that the only treatment more difficult to recover from is anal cancer. I keep that in mind!!

Fight for you. Give treatment a chance and think positive! I'm happy that you're giving it a shot. Praying for you.....