I've just read Lynn's husband's post and am so sad that I can't speak. That first wave of terror that hit me when Tom's diagnosis was put in front of us has returned and my stomach has turned to jello.
I have sent this site address to many family and friends, but I have not been able to really talk to them; you fabulous people here are the only ones who understand - - - everyone else seems to think, "Oh, it is only tonsil cancer." I certainly don't have it in me to explain the treatment/side effects/outcome possibilities.
Can't write any more because I can't see through very hot tears. I'm too new to have known Lynn, but this is still too hurtful.
I love each one of you and truly do take strength and courage from your messages.
Nicki

Nicki,

I know the exact feeling that you are talking about. If you go back and check you'll see a lot of "panic" posts from me. I hate that feeling. My prayers are with you and Thomas that his treatment will go as smoothly as possible. I too struggle with the posts regarding people who have lost the battle with this terrible diesese it breaks my heart. All the people on this site have really helped me to get through every day....

Love,
Dani

Hello Nicki,

You would have loved Lynn as much as we did. She was almost always the first one to offer her support, love and advice. It shocked many of us when she died. I don't think many members knew she was as sick as she was. I do take some comfort in knowing Lynn suffers no more. I don't know what else to do. This happens every time we lose a member to this bastard of a diaease. I have been a member for just over a year and I have met some wonderful people. Oral Cancer needs attention, I'm sick of hearing fund raisers for Breast, Prostate and lung cancer. It's time we get some funding to allow this site to get the word out, "EARLY DETECTION". The grassroots plan is now taking shape and anyone who wants to help can sigh up. If I can save one person from going thru what I've been through I will consider my action a success.

I have a photo of Lynn that will be in the album I am bringing to Vegas. I will attach it to a reguler email and send it to you.
Remember you can vent here anytime, we all have at one time or another.

Your Friend, Danny Boy

Nicki, I am sure the impact of knowing someone losing his/her battle after fighting courageously is very traumatic on the caregivers and patients still under treatment. Tonsil cancer is very rare in Hong Kong and people around have little knowledge about it. They also comforted me by saying that it is a relatively treatable cancer compared to lung or liver. I don't know why they have such concept because I know tonsil cancer can be fatal too especially I am at a stage 4b. But I just write now not to scare you more but to give you support and hope. I am one of the survivors who made through the ordeal and am having a new normal for 3 years. Back to my previous full time job and travelling around.It is inevitable that we will hear sad news on this forum from time to time but it is important that we balance ourselves with a more positive attitude and overcome ourselves with higher spirits. Ventilation is essential but don't let your fear and worry dominate the family for too long.As a 'senior' member of the tonsil family, I am ready to give you my full support and if you wish, you can email me anytime for questions. My best wishes to you and Thomas.

Karen

Dear Nicki

I understand how powerless you must feel. Many subscribers to this board say that cancer can be worse for the carer than the patient. It is sad to think of Lynn's family without her but she is now at peace and has left a wonderful legacy of love.

Our journeys are all different but in my case I found acceptance was the key issue. Once I embraced cancer as a part of my life I knew I could deal with it and my attitude became positive. Being totally informed and in control of my treatment was a large part of that.

Best wishes and love to you both, from Helen

Nicki, Don't let this disease get to you. Tom is a fighter. I remember your first post when you described his initial attitude. Postitive, upbeat, tough, and looking forward to fighting this and winning. He will win. And you will help him to that goal. His treatment plan is the most effective in the medical arsenal as it is known today. Remember that a positive attitude is part of the tools needed to fight this thing. You and Tom are doing a splendid job, just keep it up and don't worry about it. The Lord will take care of you both. Have faith and take it one day at a time. It gets better.

Danny Boy, you are sooooooooo right! Oral Cancer needs attention!!! When I think of all the time that is wasted with antibiotics, keeping an eye on it, it's not cancer...you don't smoke, etc. etc...it makes me want to scream! Early Detection....PLEASE!! Save some of the pain and suffering of this horrible disease, it is heartbreaking! Sorry, had to get that out..Love, Carol

Nike- Lynn's story affected me too. When I read how young some of the posters here are it breaks my heart. I was another one who didn't smoke and went through the antibiotics and slow diagnoses because I didn't fit the profile. Early detection and awareness is an important key for a future of survival. JOIN OCF as a member! We need to get the public service announcements out and the information cards for dentists made and distributed! As you send emails about this site to your friends and families tell them that joining now and helping get the word out helps make some sense of the "why me?" At least this way we can all help those coming behind us to get a shot at survival! - Kris

Well spoken Kris,

Danny Boy

Nicki,

It's ok to be scared. Fear is a part of the experience, but fortunately fear can be managed. And it's ok to be angry. This disease sucks! Go ahead and shout it out: THIS DISEASE SUCKS! Unfortunately, most folks don't know much, if anything about it. Even more unfortunately, there are some folks (like EVH) out there that could have done and could still do alot to get the word out, but they choose to pretend nothing happened. Be that as it may, don't let other people's ignorance get you down. We're here for you and take heart that Tom has a solid treatment plan and a good attitude.

-Brett