Hi Liz:

I have been following your posts, and want you to know how sorry I am about the loss of your husband. I hate hearing stories like that because I have had several misguided diagnoses from my doctors prior to being diagnosed with tonsil cancer. When I first noticed a swollen place on the right side under my chin in mid-2007, my general practitioner diagnosed it as a swollen lymph node from a sinus infection. Several weeks later, I called because the swollen place was still there - the nurses told me I was paranoid and not to worry - they have such things all the time and mine will go away - yeah, right! After several more weeks went by, I decided to go to an ENT on my own. He checked my throat and said my right tonsil was a little swollen, so he did a needle biopsy of the area under my chin, which came back NEGATIVE. I waited another several weeks and since the swollen place was still there, I went to yet another ENT. He didn't think I had a problem but suggested I have my tonsils removed since they looked "irritated." Well, after surgery, I ended up with SCC under where my tonsils had been, plus it had spread to the lymph nodes. Thus, the radiation and chemo, and fears for the future. Anyway, what I wanted to say is that I am a retired 30-year technical illustrator/editor, and will be glad to help with your brochere in any way I can. Just let me know. Again, so sorry for the loss of your soul mate.

julieann

Liz,

I started to reply to your thread to let you know how I came to find I had oral cancer. It turned out to be a fairly long narrative so I am posting it on the General Board under "How Potato Chips Saved My Life"

It may help folks get an understanding of how different people came to know they had this disease if others post similar stories.

Julieann. your story sounds familiar. Been there done that and much more. But it burns you when they think we are dumb about things.

Hi all
this subject is overlapping between people who have cancer and those looking after people with cancer.I would like to wait until David or Brian indicate which way we go on this before i start to set it out.As far as the manual for loved ones could you guys send me an e-mail setting out how you felt the day you were told that your partner/relative had Oral Cancer.

thanks

I think that with all the offers of help here, we would be foolish not to take advantage of the opportunity. If you would like to do this under the OCF banner, I am sure you all would do the foundation proud. And we would work hard to see that it ended up in the right places as much as possible. It's a worthy undertaking.

I suggest that you all form a committee/group, and put together an outline of what it needs to contain in some organized manner. That you pass that by the foundation's doctors for comment. Then the work begins. You can use the message boards to organize your themes and ideas and pass bits of it by the population here for comment. Once done, it can come to life first as a quicker, get to the field brochure, and latter as a more detailed, many story told, full blown, detailed tome on the subject that will help guide and comfort others.

yay x

Great! Look forward to hearing more!
Cathy

Liz,

I am working on "an e-mail setting out how you felt the day you were told that your partner/relative had Oral Cancer." Wow, this is rather difficult and is taking me a lot longer than I thought. Reliving that day is stirring up all kinds of feelings I had stuffed away. Anyway, I am working on it. Do you have a deadline?

I am also offering my help to you. This is a wonderful project!

Anita

Liz,

I am so sorry for yet another "smack in the mouth".

I think your idea is wonderful. I am going to ask my family members and also mom's closest friends how they felt--some of them are better than family! I know this is going to be quite a success, wish they had something like this for when I was sitting in the waiting room, or the treatment rooms.

Donna

No Anita there is no deadline,The manual is not going to happen over night because i want it to be the best we can do and will be a work in progress for a while.The brochure will come first so you just take your time thankyou.Donna thanks for the vote of confidence xxxx