Until I found this forum (thanks again Gabe), I was under the impression that Alex was having some peculiar reactions to treatment. A large part of the road to recovery, has been the knowledge that Alex's side effects, and reactions to the situation were normal!!! Once we knew we were normal we could stop wasting our energy beating ourselves(and each other) up and start trying the solutions offered on this website. Even when there were no solutions, just knowing that others had been there before us and got through it went such a long way towards acceptance of the road ahead.

I feel sorry for the people who don't have this support who are allowed to think they are weak, or peculiar or alone.

One of the couples that Alex and I went through with was Dave and Judy. I saw them bickering the same way Alex and I were and the last time I saw them it was clear they were in trouble by the way her jaw was so tightly clenched. I gave Judy my card and asked her to give me a call if she needed to. She never did and I don't know what happened to them. I wish now I had asked for her number rather than given her mine. At least I could have pointed her here and she might have discovered others who understood exactly what they were going through and could have helped.

You raise a good point, Karen. Sometimes it is harder to ask for or even accept help from someone you know because of so many reasons including feeling weak and alone and not wanting to admit you are scared. I had always had a difficult time asking for help with anything. The very best thing that happened to me was when that nice young man, who was waiting for his turn for his Rad Tx, got up, and as he left for his TX, bent down and whispered to me "Go to Oralcancerfoundation.org". I did - I found the caring help here and I found my strength. I was no longer alone. Now - Life is good!

This is a great forum.. I was blessed to find it as soon as I was diagnosed...It may have something to do with my desire to know all about it... it was terrifying but liberating too. Thankfully, because of the knowledge of people here I have been very fortunate to not have had too many heart stopping moments, this is of course because we do talk about everything here and usually someone has experienced what you are going through, side effect, etc... god bless to all ;o)

My husband was glad to know that that another forum member noted that the anti-fungal lozenges made her mouth feel less sensitive and that it wasn't 'just him'. Besides the overriding life and death issues, this forum is tremendous with dealing with the day to day stuff that so greatly impacts quality of life.

I went for 11 months before finding these forums, all the way through diagnosis, rads/chemo and then my first major surgery before I found OCF. I was laying in bed hopped up on ridiculous amounts of fentanyl and oxy and a slew of other drugs and feeling very hopeless really. It's been a light for me that's for sure and I'm very thankful to have the people here in my life.

Anne-Marie,

That was such a nice act by that man you encountered at your radiation treatment! It's like we're all in this war together. Some of us are veterans and others are just entering their first battle. We all have such a strong bond and unspoken connection because of this disease.

I won't ask who it was, but I am curious to know if you ever crossed paths with this man on OCF. Now, that would be cool!

BTW, great sharing from everyone here. I'm so grateful that we have come together in solidarity to fight OC and support one another. I can't say enough! Thank you, Brian Hill for founding this organization!

Kerri

Kerri -I never did meet up with him again (it would be cool!) but he was in the next town to mine and we had the same ENT. He was same age as my son who was going though Rad Tx. Life is good for him, too!

Unfortunately I went through my Tx before Brian found me on another OC site which took literally days to get an answer to a post. Even finding this site post Tx was still a blessing.

David, agreed. Although this site was mentioned in the rather voluminous literature I was given before starting radiation, I think I was too numb by the whole thing to really look into online resources. It was only later after the end of treatments that I found OCF, after first exploring a couple of others that were fine for what they were, but nothing at all as comprehensive and wonderful as this place.

Most definately this sight as helped me sooo much with what Ron had/has gone thru! Even though he won't come on here it has helped him so much and me because I now know what the norm is with what he is feeling and was tasting and how he did get better and how long it would take. I would have lost my mind with the not knowing, glad I'm a very curious person and know how to use the internet and the web to go in search of any answer I need to any questions I have. As the old disco song from 1979 by Sister Sledge goes
"WE ARE FAMILY"

Agreed. I felt so alone until we found this site. Kevin only spent a brief time here, then he was overwhelmed and swore off, but he had turned me on to the forums and help flooded in. It was in the last week of rads and things were pretty bad. It was sooo good to know what we were going through was normal.
Thanks Brian, for giving us a soft place to fall. Thanks to everyone who helps everyone....we ROCK!!