First of all, in the interest of full disclosure, let me warn you that this post may be classified as whining. Feel free to skip and move on, just need to vent.

I am now 4 + months post treatment, and am still disease free, as far as we know. Another PET scan will be coming up on 12/4, but I have felt nothing new in my neck since the "hot spots" showed on the previous PET, so am cautiously optimistic.

My problem today is the collection of "stuff" that comprises the "new normal". First, I have the pea-sized growth that popped up in the center of my upper chest, right in the middle of the chest radiation field, which I presume is a skin cancer of some sort. (I have had several removed over the years). It is ugly and annoying, and it has taken forever to get an appointment to have it evaluated and removed. That comes up Tuesday (at least the evaluation part -- likely have to have another wait before it is removed).

Next is the ongoing dry mouth battle. Salagen has pretty much stopped working. I love to drink coffee, but find that the caffeine exacerbates the dry mouth, as does sugar. OK, coffee and sweets make it worse, which are the two biggest things I crave. Grrr . . .

The neck is also a constant struggle. The nerves are reconnecting from the bilateral neck dissection, I have a lot of tenderness and spasm along the top of the shoulders extending in to the back and sides of the neck, the radiation fibrosis causing the stiff feeling in the front, and the lymphedema that moves around from day to day. Add in the L'Hermitte's sign (tingling/electrical shock feeling down neck, back, arms and legs when bending neck forward), and my neck could qualify for federal disaster relief.

<Deep Breath> OK, I feel better now. I hate to whine, basically because I feel so darn lucky to be alive to see my 52nd birthday on 12/3, which I wasn't sure I would see. My son is home from college for Thanksgiving, and we are doing our traditional hanging of the outside Christmas lights today, then going to pick up his new girlfriend to spend a few days with us. I have a funny feeling this may be my future daughter in law, but we shall see. ;-)

The quality of my problems has definitely improved. It is difficult to articulate, though, when you go to follow up appointments and they ask you "Are you in pain?" Now, I have been in pain, and even my neck spasms don't really qualify for a big reading on the pain meter. But how do you quantify the constant feeling that someone has his hand around the front of your throat? Is it painful? Not really. Is it annoying? Hell, yes!!!!

OK, whine is over. Any thoughts, comments, criticisms, commiserations, laughs, cries or other reactions are appreciated. Gobble, Gobble!!

Jeff,

The beauty of coming here is that we all have our moments (or days) that we just can't rise above our situation and need a safe place to vent.

So, we understand and we give you cyber nods of support and sympathy! Deb

Jeff,
What you said about the neck issues opened my eyes more to what I think my mom was trying to explain again last night! Thank you! It's so hard to understand sometimes-as a caregiver. Have you found any relief for it--she wants to start decorating today and I know she will end up in tears from frustration ? maybe more than pain?! Oh...thanks so much for opening up....I feel better, afterall, misery loves company, right? Makes it all seem more normal to someone like me who is constantly in a state of confusion and worry.
I would imagine hanging the lights with the cold temp will probably not help much, but at least you and your son will be doing it together!!
Happy Birthday a few days early!!
Donna

Jeff,

First of all as a member of the Club Nobody Wants to Join you have earned the right at any and all times to express exactly how you feel and summarize any groups of those feelings any way you choose. It will never be miscontrued as "whining". Just because we express what we are going through does not mean we want someone to fix it but sometimes we just have to say what others know EXACTLY what are going through.

I did not have the neck dissection and honestly, my neck spasms and pain are an everyday occurence and worsens by the week. I have hundreds of spasms a minute on the side that received the most radiation and when I look down I have L'Hermittes even 4 years later and now my neck locks up and I can't look back up when I look down sometimes without great pain and effort. My poor little dog wonders why I don't meet him "face-to-face" like I used to but he is so small I have to bend my head down to do it and it hurts like hell. I spent the first few minutes every day going through a ritual I call "teaching myself to swallow". Changes in temperature and cold just sucks.

I earned the right to express that and I wish chocolate would taste like it used to but I will eat it anyway!

Then again, today when my eyes opened, I smiled...

To paraphrase our old buddy Tom Hanks in one of his infamous lines...normal is as normal does.

Ed

Jeff I see you still have a good way to articulate with the words. I was wondering how you are doing..My neck feels that way too and the continous burning of my tongue tees me off too. But it's better than the alternative LOL I'll miss you by a day in Columbus. I go this Mon. the 26th to see Ozer and then back on the 5th of Dec for Cat Scan.. Hope your Holiday was a great one..

Jeff...thanks for reminding me that being the caregiver is the EASY part. Being a two-time breast cancer survivor myself, I can remember when my quest against 'the beast' began..all I wanted to do was cry and beat the wall and run screaming, 'why me..what did I ever do that was SO bad that I deserve THIS?'
I made up my mind that I would allow myself FIVE MINUTES every day to just be 'mad as hell', and cry with the aches and pain and utter frustrations of it all. Some days, I STILL do that!
Go ahead and let it out...many here can personally relate to what you're feeling.
Thank you for revealing to me what Buzz REALLY means when he says 'it just hurts'...

Thanks for the input & support, folks. Ed, your thoughts are dead bang on the money. " ...when I opened my eyes I smiled ..." Absolutely perfect.

Jim, sorry I will miss you, but hope things continue to improve. I will see Ozer on the 10th or 11th, after the PET scan.

Emmylou -- Thanks for the thoughts, but no way will I buy that the caregiver has the easy part. I don't think anything is worse than the feeling of helplessness when someone you love is hurting and there is nothing you can do to control the situation. As the patient, you at least have the satisfaction of taking the action of treatment, which at least provides the illusion of control. ;-)

Donna -- thanks for the thoughts, and hope your Mom is doing better. Sometimes it's easier to have a broken arm than a paper cut on the finger, you know? The broken arm will hurt like hell for a little while, but then it will mend and be done with it. A paper cut just nags at you forever . . . ;-)

Had a great day putting up the outside lights, took son & girlfriend out to dinner, watched The Blues Brothers on TV, and now they are watching The Great Race while I type this. I am a lucky guy. I just need you guys to remind me of it from time to time!

Jeff,
We all whine, and anyone who doesn't want to hear just has to leave your thread.
Dry mouth is one of the issues that unfortunatly is common place during and after OC and H&N cancer treatment. There is lots of good info and tips on how to cope with it and many references to products others have used on this site.
Coffee...Mmmmmm coffee....unfortunatly it is a diuretic and removes water from your body. May I suggest finding a good decaf coffee from a good source such as Starbucks or other chain....same great taste with 99% of the caffeine removed. Stay hydrated...drink lots of water and I mean lots...if this doesn't appeal to you try tomato juice V8 etc. they will help keep you hydrated and also have nutritional value. Eating plenty of fresh fruits and vegetables and limiting salt and MSG intake will also help in reducing dry mouth symptoms.
Biotene makes many great products that will help reduce the dry mouth issue.

If I can be of any help just ask.
Keep up the positive attitude and whine away.

Cheers,
Mike

Well the good news is at least you are alive and whining....

There are adjustments that come with the territory. I have similar experiences to Ed and I also didn't have surgery. I just have a lifetime script for Valium now ;-)

It took a full 18 months for my salivary function to return after IMRT so be patient and keep a water bottle handy. I did cut down on my caffeine intake. Trader Joes has a very good tasting 50/50 blend. I like it better than the full strength stuff.

Jeff,
The whole thing with the neck feeling weird-well it may or may not go away-I think it is just individual-but I get so sometimes I don't even notice it. I quess that counts for something.
Don't despair. I am scared all the time because my reconstruction failed and I am left disfigured on my left side of face and still have some issues to work on. Every day that I wake up I am happy that I am cancer-free for this moment and hope so much it will stay that way. But, like you , the new normal is very hard to get used to. You have come to the right place to vent. Everyone hear will listen-at least for a place to view others opinions and get some feedback.
I pray that you get some relief from your inner pain and well as your outer pain. This thing is so mean and tough on a person. It takes everything you got to get through it and everybody you know helps you get throught it.
Take care and may you have peace
Debbie

Jeff,
It took a while to get there...certainly more than four months out, but eventually I recovered most of my sense of taste and began really enjoying coffee again as well as sweets. Almost every night I put a little bag of mini-Oreos over a scoop of Blue Bell Homemade Vanilla ice cream...and love it! (Sorry to you non-Texans and assorted others who don't have Blue Bell available). The dry mouth I guess I will always live with but it just ain't that bad.

Hang in there buddy and in time the new normal won't be so bad.

Take care,
Danny G.

Jeff...Thanks for whining....It means that not only are you human, but that you trust us.....AND that when I feel like that, which I have and will again....I can also safely come here to vent!

XO