Hi all --

We were up at Hopkins yesterday for Barry's second injection of the trial HPV vaccine. While sitting in the waiting room we overheard the couple next to us speaking to a nurse about PEG insertion and upcoming "chemo class" for the husband's throat cancer. The wife and nurse went off to make another appointment and Barry introduced himself to the man. "I couldn't help but overhear -- it sounds as if you have what I had a year ago. It is a very scary diagnosis but I got through treatment and am back to a normal life, and you can do it too." They then sat and talked for a long time. Barry told him some of his little "tips" for helping with side effects, what to be proactive about (pain management, getting appointments, etc), and in general tried to alleviate some of the man's obvious distress. He reassured him that he was at one of the top hospitals for oral cancer and had top oncologists in his corner. We gave him a brochure for the Oral Cancer Foundation and urged him and his wife to get on-line. The nurse and wife came back to find the two men still in animated conversation.

When they had to leave to go to the class the man stood up, shook Barry's hand and said, "Thanks, your support has made my day. The nurses and doctors are all very helpful but none of them have been through it like you have..."

Which is why groups like this forum, as well as support groups meeting at various hospitals are so important to getting through the ordeal. No one knows like someone who has been there before.

Gail

Gail,

Very true. As soon as I found this site (I didn't find this site until week of POST tx) and recognized how valuable it was to me I let all my docs at Moffitt know about it and I told them I wish they had had this information to pass on to me before I started my Tx.

I have had several similar conversations like Barry's while waiting to see my docs since finding this site.

It really is amazing to me at the capacity we all have to share our experiences and do some good. I've worked with cancer patients and their caregivers for 35 year and thought I was extremely understanding - until I became one.

We really don't get it until we've been there and I am very grateful for the chance to know all of you and read about your experiences. At the beginning of this process Jack and I felt totally alone but that's not the case today. I think by extending ourselves a little bit to others we find out a great deal out about ourselves and what we're capable of. It's very positive and very powerful...an instant bond with others who are in the same boat.

Somewhere along the way we start to care about something other than our own pain and that just helps in general. Thanks for the uplift today.

Regards JoAnne

Amen-Amy

From the time they tell you, that you have it, the surgery, Chemo, radiation, starvation, the road to recovery, the time it takes to recover,
OCC roller coster ride. Its hard to explain to someone that has not gone threw it. I know when I speak to anyone that has had it or is going threw it, seems that we know that person, like he or she is or best freind, we want them to beat it, as bad as we want to our self. I admire those who have had this in the past, that are willing to share there experence, those that keep this web site going, it has made this for me anyway alittle easier to live with. Im sure Barry made that person a little more at ease with all they are going threw.

I would like to add my gratitude and thanks to everyone else's. I found out about the OCF site in the waiting room while my son was receiving his radiation treatment. A wonderful young man started talking to me and my daughter and told us about OCF and how his treatment was progressing, and it meant so much to me to know we were not alone and to get his really good ideas and hints for "getting through it". Just last Friday while my son was getting his treatment, I had the opportunity to talk to a lady who was about to get her first treatment. She looked a little worried and my heart went out to her. I gave her the OCF site and my card and I hope she can get the same hope and encouragement that I did.

For anyone who wants them, OCF has literature that we really need to get out to treatment facilities, doctor's offices where you might be going for follow ups, or even if you are part of a public group who you would like to know more about the risk factors for getting oral cancer (church, business, etc.).

The OCF postcard is only designed to be in treatment facilities and tells people who we are and how to find us on the web. A simple and to the point card.

"What you need to know about oral cancer" is a four-fold brochure that talks about the risk factors, signs and symptoms, and the need to get an annual screening. These are great waiting room brochures for dental offices, ENT offices, and distribution to the pubic. We use them at all of our public screening events, and it was co-written with the NIH.

Lastly, we have a three-fold that tells people in more deatil who OCF is and has a donation envelope stuffed into it.

Anyone who would like to see that the appropriate pieces get to their hospitals or doctor's offices, or who would be interested in trying to raise some donations for OCF, can have these for free. Just send me an email and tell me how many of each type you would like. Most are packaged in 100's. We could certainly use your help in getting the word out there, and helping people avoid the disease, find the foundation for help, or make us their charity of choice when giving comes to mind.

Brian,
I would love to get the three fold brochures with the donation envelope. I am a past member: I say so because I haven't been on in awhile, my history is here on the site, my mission has been to educate health professionals in Canada (smaller towns)due to my rather slow diagnosis. Personally, my fears and worries seem to be over but my Mum, the sweetest lady on earth, who gives to EVERYONE her time, care and assistance, a lady who has never touched cigarettes or alcohol (unlike me)has just been to her Dr on my insistance that her "white freckle on the underside of her tongue" is ominous. Sure enough the cell scraping showed precancerous, there has been no biopsy yet. I asked her to read the OCF pamphlets and never thought WE would be needing them again, so soon. I am praying she doesn't have to go through what I did in the last two years and don't seem to see any connection between family members, is SCC hereditary??!! Maybe the pamphlets have helped though, as her Dentist was much quicker to spot it during a routine exam than my health professionals two years ago. You have my address and I did distribute flyers at Surrey, BC Cancer Center in the last year.
Thanks again, Maria

Maria please drop me an email with the numbers of each that you would like including your shippiing address, and I will see that they get out in the next couple of days. Thanks for taking an active part in all this.

I totally agree that talking to a person who has been through the process is extremely valuable. Our ENT office tries to put new patients in touch with patients that are a ways out from treatment, when appropriate. When they gave us a contact when my husband was first diagnosed, I was surprised that it was a woman that I knew through my business. I had no idea that she had been through tonsil cancer and all that it involves.

Likewise, our doctor has given out my husband's name to new patients on may occasions since he completed treatments. We always urge new patients to log on to this forum, but I'm not sure how many do that.

Anita