Hi. This is my first time posting. My husband and I have been reading many of the different forums for a week now. We even already have T-shirts! I just haven't quite known where to write, so figured I'd start here. Our case is in the signature. We are now down to 16 more rad tx and 2 more Erbitux. This is such a long journey. It's nice to be able to read others' stories and know we are not alone. I do have a quesion but I guess I will try to find the correct forum. Is that the thing to do?
Kathy

Start right here and stay in this thread for awhile as it becomes hard to find your different thoughts, questions, etc. on different threads. Welcome to OCF. Thank you for supporting the foundation with the T-shirt purchase, and now as you wrap up treatments, enjoy the company of the most generous and warm group of people I have ever had the pleasure to be associated with.

Hi Kathy, welcome to OCF! Best wishes with the treatments! I noticed your husband is going for 60 treatments (twice a day). I havent seen anyone treated like this before. Hope it is an easier route than the usual one a day. Feel free to ask questions, we will try to help you. Best wishes with everything!

Hi there - welcome! It's too bad you have to be here! But it's a great place for support!! I've heard of them doubling up - usually its a lesser dose each time - cant remember what the principle is behind it though! I think it has something to do With less damage to the surrounding tissue.., welcome... And good luck with treatments! And ask an question you need there are a lot of BOT cancers here! They're great and more than willing to share!

Hi Kathy, welcome.

Hi there
Welcome, you will find the best information friendship and support here!
Jayne

Thanks Brian. Christine actually sort of answered our question. Everyone seems to have not gotten nearly as many rad tx as we have. Kevin had 3 weeks, then a one week break. He recovered quite well in the one week, but now we are 16 into the last 30 and it's getting bad again. He doesn't like to use the PEG, so is still drinking Ensure and tons of water. Not sure how much longer that will last. I was wondering if things spiral down the last 2-3 weeks, or do they just sort of continue as they did during the first 3 weeks. Using the Lortab helps him to be able to still have liquids by mouth. The BMX rinse helps too.
When we started tx we were told how bad it would get. Literally were told he would look like he were dying and he would probably feel like he was, but he'd come back around. That hasn't happened. He's been tired and uncomfortable, but nothing that has scared us. I know this sounds wierd, but I even asked if it was working because he wasn't too sick! They assured me it was and now he's becoming quite the red neck with a throat full of yuck, so... Have others come through this relatively comfortable?
Now that we are nearing the end of this we are questioning how to get past the fear of reoccurence and just living "normal" again. It, as you all know, has been a terrifying adventure from the get go. How do you come down from the hype?

I would categorize your description of where he is as "normal" for the path, and for most it gets worse, right up through the end of the first month AFTER treatment. It does get better, but for most of us, it seems to take forever and a day. Towards the part when the end of treatments was in sight, that is when I was the most depressed, the angriest about life and my situation, and even suicidal, and wanting to quit everything, to show you what a pussy I was. (There are much older women that have posted on these boards that didn't whine half as much as me.)

We all talk so much about the warrior's attitude and mental state as being part of getting through it. I can tell you that these treatments brought me to my knees emotionally and physically. I never thought that I would be here today more than a decade out from treatments.

It will test him and you like nothing you have ever been through. But there are no options. It will get worse, he (with significant support from you) will get worse before he gets better, but better will come, measured in weeks not days. You have to trust that he will get better, and that this will pass. You need to be part of his strength. Every pause in the treatments, lets the cancer catch up to the treatment again.

I just wanted to be drugged into oblivion from the pain, and the side effects. Luckily he will want to sleep more as this goes further, and in some ways that is a blessing. And yes to the looking like warmed over death. Just remember that looks are not reality. The only way out, is straight through to the end, no matter how difficult. That's pretty blunt, but it does no good to tell you that he will be different than the majority that have passed through here. Better prepared, with heels dug in, in my mind.

I totally agree I was blessed to not have it too bad, up to the end - but i did suffer for the two weeks after treatment.,. I do have to say Kevin sonds normal... And Brian is right about sleeping. I would pop an oxy and sleep for most of the day and night! good luck! You'll get through it.

Kathy, welcome to you and Kevin. There's not much I can add to the good things Brian, Christine and Cheryl have advised. It's true, we're a big family here and everyone is ready to help.

My thoughts are with both of you. You'll get through this!