I was done with treatment at the end of June. At the end of August I found out that the pain was back. I found that the cancer has come back with a horrid vengeance. If it has not gotten into the lungs and chest, They will need to cut out my whole tongue and voice box. I have to tell you all. The game is over, for the first time, I am scared to death. I will never be able to eat, taste, speak or blow my nose ect. I know it seems picky, about not being able to blow your nose, but it remains a fact. I will have a stoma forever. As you all know, chemo and radiation is no picnic but this takes the cake. Yep, it is a good way to bring a man down. The ONLY thing that keeps me going at all is the fact that it will save my life. Odd thing is, they will not do it if it has spread too far. I will find that out this next week. Ironic thing is I find myself hoping they can help me. That's a kick in the groin, hoping they can cut out the tongue to save your life. Week in the hospital and Lord knows how long constant care is at home.

Johnny,

I am so sorry...I know you are very scared.

Sending hugs and prayers your way,

Deb

Johnny, I am sorry about this but if they can keep your life going on, it will be worth it. I wish you luck and you face it with a venegance like it did you. You will win.

Yep, that is what I keep telling myslef. I wonder if anyone here has gone thru this as well.

Johnny,

I found your blog and the OCF site about the same time. I'll keep you in my prayers. Stay positive...I know easier said then done...But a lot of people are thinking of you. As Jim said...it's worth it.

best wishes,

Raymond

Johnny,

Yes, I had a recurrence with a vengence. They didn't have to take my voice box, but I went in to 2nd surgery knowing that I might lose it. Just want you to know that everything I went through, and the challenges I continue to face, have all been so very worth it.

I'm 2 years post and still improving. I know how scared you are, but try to take it one step at a time. It's amazing how well we can adjust and adapt to our new lives, and be very grateful for the chance.

My very best hopes for you,

Lani

I know there are others who have lost their tongue and I know people who have a permanent stoma. They get along just fine, and I know you can do it too. We are here to help in any way that we can. We share your fear - we've all been there - and we will have you held close in our thoughts and prayers as we move through this with you.

Donna

Johnny:

Im so sorry your news isnt better. I do understand how scared you must be right now. A recurrance is a difficult thing to adjust to, especially so quickly after finishing tx. There are many people here who have gone thru a recurrance, myself included.

One of the most difficult parts of dealing with a recurrance is trying to see the positive. You are young and can overcome this. I remember your wonderful attitude from your first round of OC, that can help you with round 2. Your current life as you know it will change, you can beat this again and still live a successful life. It may be a different life and that can be a hard adjustment to make.

Here are a few thoughts that helped get me thru my recurrance. I did it once, now Im smarter. I know the hospital like the back of my hand. I know which friends and family members will help me and who will disappear like Im contagious. I now understand more of which doctor does what and who will always fit me in asap, what doctor will best guide me. I knew what pain meds worked and which ones were a waste of money. I understood my body better. All the medical terms werent so confusing anymore, I knew to ask questions and which ones to ask. I was an experienced survivor and I refused to let cancer beat me. I knew to ask for help and where to get it. I knew how to prepare for what was coming.

You know there is alot of support here. Wishing you the best with everything you have upcoming.

Christine is so right! My husband had a recurrance during chemo and radiation. He is also fighting one now-a year after his initial surgery. We know so much more now and how to navigate things. The fact that you are hoping the doctors can help you is good. DO NOT GIVE UP. I can't even imagine what you are thinking and I know how horrible uncertainty is but try to stay proactive and engaged in what is going on. That's a great quality that my husband has-he wants to do whatever he can to prolong his life. He doesn't dwell on what's been taken away, just how he can fight this horrible beast. Best wishes to you.

Sue

Good luck Johnny.