Hello to all my friends at OCF.

I am finding this post treatment time to be the most diffucult and challenging of the whole process. I am 6 months post surgery and almost 10 weeks post IMRT radiation. I still have my PEG tube in and find that even though I can eat I have no desire to eat orally. It takes me so long to eat I end up warming up the food in the microwave at least two or three times before I am finished. It's so much easier to feed myself Jevity through the tube and thats what I find myself doing. Very unlike me to take the easy way out. I know I am depressed even though I am on anti-depressents.
I am having a combo PET\CAT scan on Feb 11th and I am having real bad vibes about what this scan will show. My neck has been real tender on the right side and feels a little swollen to me. I will see my ENT and Rad guy on Feb 18th. I am not looking forward to getting the results.
I also have a mild case of thrush. My primary care doc gave me a script for liquid Difulcan to take for 5 days. Is it thrush if your saliva is real tacky and white? My tongue is white but I can brush it off with my toothbrush. The back of my throat is white on the side of the surgery.

I am still using Biotene toothpaste and mouthwash
everyday. I had my teeth cleaned last week and had no cavities. The dentist said everything looked good. I took your advice Brian and am scheduled to have my teeth cleaned every three months.
Well this is all for now, Thanks for letting me vent, I know I still have a way to go and I will try my best to get through this depressing time.
Living in Wisconsin in the winter doesn't help as there is not much to do for a couple of months yet except shovel snow.
Your Friend, Dan

Dan, every day you CAN shovel snow is a GREAT day! We have had some GREAT weeks haven't we.

Yes what you are describing sounds like thrush. Further the other things you are feeling sound familiar to me as well. So far I have been wrong about every one of those feelings!

Have all the "bad vibes" you wan't it will make the Doc's comments that much better when he/she says "everything looks great"

I can tell you I have been to the Doc at least 6 times when I was sure he was going to tell me the "bad" news. That pain or ache I was having was the real deal. Guess what? it didn't happen. These are very normal feelings and when mixed together with normal sensations, it is an instant awfulizer.

Take care

Hang in there, Dan. The sun will shine and so will you. I feel fine and yet the mountains of ugly gray snow are getting to me, so I can only imagine what you are facing with more winter yet to come. But spring will happen, I guarantee it.

Mark, I nominate "instant awfulizer" for Best New Descriptive Phrase. I have added that to my vocabulary and thank you very much.

Joanna, missing teeth, but never sense of fun

Hey Dan,

I can relate to your blues. I had been having tongue pain similar to what led me to the dentist, oral surgeon, ENT etc. at about this time last year, which started this great party we all attend. I saw the ENT on January 12, all checked out great and I posted a happy post. After that visit, tongue pain started and gradually increased to the point that when I saw my dentist on the 21st, I was sure IT was back. I called ahead and asked if I needed to come in early for my appointment so he would have time to do a thorough check along with my already scheduled dental work.

What did he find? I am clenching my jaw so hard that it is muscle strain. He prescribed 5mg of diazapam one hour before bedtime, my muscles are relaxed, and now that pain is gone. What a relief! I hope you find what is going on with you is just as easily rectified or explained.

And Joanna, I think we need to start a glossary of our terms...and include your "Englisp", Mark's "instant awfulizer" and whoever coined the brilliant "new normal." We could start a thread about it, or I would be happy to make a list if folks want to email me their words and definitions!

Sincerely,
Lisa

Hi Dan,
You describe EVERYTHING I have experienced the past few months. I also was kind of lazy about getting back into eating, it was so much easier and quicker to just use the tube. But, that will all of a sudden just go away and your appetite will come back full speed. I also have a very tender neck, more tender now then it was right after radiation. My right shoulder has been giving me some problems, wondering if I pulled a muscle but I swear it's from the way I hold my arm and hand when I am on the computer. Lots of new feelings in my neck and jaw lately.
I also had the thick, white saliva. It's better now but still have the white tongue in the morning.
Depression seems to be our new friend, and that's just how I treat my small case of it. I baby it, give it some attention, then move on with myself.
It sounds like you're doing wonderful Daniel, keep your chin up.
Minnie

Hey Lisa,
I'm happy to hear that all is well with you. It's so awesome when you find out that something you just KNOW is a return of the cancer is NOT a return of anything! The feeling needs to be bottled and sold.
The competition season is in full swing, teams are incredible this year............LoneStar from Texas were incredible at Cheersport.
Take care,
Minnie

Hey Dan,
You are in my thoughts and prayers everyday as Dan and I go to Chemo/rad. I think of you because you also have traveled this path, and traveled it so well!

Hang in there...you are such an inspiration to all of us in this club.

Take care,
Debbie

hi Danny-boy
I think everyone on this forum is blessed (or cursed with a vivid imagination) I can vouch for that... But if you are not happy.. GO SEE SOMEONE NOW... peace of mind is invaluable.. come on you know what you would tell us to do... So sort it Dan.. need you back on form.. we all listen to your sound advice.. so you may have to take some..
love and hugs Helen

Thanks to all my friends at OCF who responded to my "Post Treatment Blues" posting. Sometimes I need a reminder that "Until they say it's cancer,
"It isn't Cancer"

It's still diffucult for me to remember that my life will never be the same as my pre-cancer life. Which doesn't mean I can't enjoy life and my family and friends in my new normal life.

Lori, I like the idea of a thread with all the new phrases that we read on the board. Mark has a knack for inventing them.

Thanks Again, Dan

Hi Dan,

Just wanted to add my own note of support for you. I know that here in NJ the cold has been giving me a bit of troulbe with new aches and stifffness and the like so I can only imagine what it is like further north.

I decided a short time ago that I was going to tell my ENT anything that seemed out of the ordinary and not worry about it until he told me to worry about it. For awhile I was anxious about every odd feeling etc. Now I just keep plugging along.

I like the term the "new normal." We will not return to what we were like before this journey began but thats ok. I think there is a lot going for the "new normal." Many of us will agree that the way we approach life is different, and the difference is better.

I still have everyone in my prayers. Let us know when the docs tell you that there was nothing to worry aobut

Peace,

Fr. Mike