I believe that most people will judge me if I tell them I have hpv cancer. I told my family and close friends but do not tell anyone else. I just say that I don’t know how I got cancer. It’s none of their business. I would certainly join the group. I had such a hard time with my jaw others could help me. I have osteoradionecrosis and had to have several surgeries to remove dead bone and finally had a flap surgery to cover my jaw with flesh from my leg and later on I still had more dead bone removed. I have been better since. The better I got the more I was able to eat properly and now I exceed my ideal weight by a few pounds for good measure. I’m not going to relapse without being able to combat weight loss! I’m what some would call stage 4 cancer as it had passed into my lymph nodes and lungs. I’m hoping it doesn’t come back in my lungs as I already have had surgery to remove nodules in each lung. There’s also a possibility that it could hit my liver. My tongue has healed nicely. That’s where a damn big inoperable tumor was located originally. Now after 10 rounds of chemo and 35 of radiation it’s been over three years. I just had my two year anniversary from the lung surgeries and now am No Evidence of Disease! Mayo really doesn’t want me to see my ENT surgeon anymore. Now I’m simply following up on my thyroid. They don’t even talk about my lungs! I only see the radiation people now and that very close to home which is nice that I don’t have the long drive to Rochester. Let’s start this group so we can help each other accept our new normal!