I had never participated in message boards until 6 years ago when my mom was diagnosed with pancreatic cancer. In doing research to gain information and get her to the best hospital for surgery (JHU) and treatments I discovered the Johns Hopkins Pancreatic Cancer Message Boards. They were a huge help just as this site is. I had never known anyone with pancreatic cancer and those message boards were such a wealth of information and support while my mom was battling her cancer.

When John was diagnosed with "base of tongue" cancer once again I was faced with a loved one battling a cancer I knew nothing about. I jumped onto the internet and reasearched everything I could find which lead me here.

John DOES ask for directions. He has his own business and before he goes anywhere he goes on Mapquest and gets directions. Whenever he is buying anything he researches it to death. When he was diagnosed and I found this site I encouraged him to join and participate and he wanted nothing to do with it.

John is a VERY PRIVATE person, hates the idea of Facebook and sharing personal information with anyone. He encouraged me to stay on the message boards for my own sanity and whenever he had an issue or question he would ask me to post a question.

He didn't want me "sharing" anything I read and didn't want to know what was going to happen through treatments unless he asked me. This is so not his personality. He is the type of person who freaks out when he isn't in control. He wanted me to spoon feed him information on a "need to know" basis which is what I did.

I think part of John not wanting to know anything was a combination of denial since he had never been sick a day in his life and he doesn't believe in statistics. He just wanted to take one day at a time and deal with things as they came along.

Having been on other health related message boards I know that when people are through treatments, life goes back to normal and they aren't having "issues" they tend to not come back. I stay here to share my experience with other "caregivers" and to let patients starting out on this journey know that there is life after this diagnosis.

John was officially out of treatments two years April 15th and life is good. Thank you all for being here!

Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2