Hi!, I'm new and have never been involved in any forum of any kind so this a first. I don't know why I started here, but I guess I'm angry, so I took a look. I am an 8yr survivor of Adinoid Cystic Carcanoma, of my right poratid gland..I still can't spell any of it right. Anyway I was 51 when it all started. I had radical neck resection and a bunch of other stuff I don't even remember, (I'll have to bone up)followed with some pretty horrific radiation treatments. I lost all my teeth at about the yr 2 point, and couldn't wear the full dentures that cost thousands of dollars. I have chronic pain, and discovered a new cancer (on my tongue) in Juanuary (also a story for another time-can't eat al all now) But let me tell you this, time is an amazing healer, as the old adage says. By the 4th or 5th yr I was eating peanut butter and jelly sandwiches, and last year discovered popcorn again! What a high that was! This just a small portion of my story which I'll post in the other place. I just wanted you to know that you must keep experimenting, and spit out what dosen't work, remember not to choke yourself though-croaking from choking would defeat the purpose (lol) Am I angry about all this? You bet, and I'll be looking for help from all, but not on your time. Every now and then, look back and see how far you've come. Hope I helped, Nan-z

Nancy, I lke your outlook and attitude. Hmmmmmmm popcorn. How I wish.

Nancy,

Sorry that you have had to endure all this crap but I like your seasoned approach to dealing with it.

NAN-Z hats off to your Attitude !

x28007
I totally hear you. My husband and you have a similar diagnosis, similar side effects, similar ANGER!!!
We truly appreciate his doctors, treatment and LIFE. Our anger doesn�t mean we don't, and we wouldn't want any of his doctors to think otherwise. Each of them did their job, and if it were based just on the fact that the Cancer is gone they did it well. But honestly, any doctor or human would have to admit there�s more to life than a beating heart or breath of air. What about Quality of Life?
When the treatment ends and the radiologist says �good bye�, the chemo nurses are doing their goodbye dance and the surgeon and oncologist say �treatment is complete, we�ll re-check you every three months�, you�re going �Whoa!!!!!!!!!! Wait a minute. I still have issues!� And they�re like �we told you there might be side effects� or �Yes, but the Cancer is gone� or they hand you a stack of tongue depressors to help with your trismus (that wouldn�t be an issue if they told you way back in the beginning make sure you work on your jaw every single day). Don�t� get me wrong. �Cancer Free� alone is huge. Reality can be difficult. But sometimes you�re not given adequate information, support or opportunities to try and help yourself; that�s not reality. Quality of Life is HUGE. You lost some of it.
My husband was asked by a former student of his to be the guest speaker at the Mini Relay for Life she was putting together for her Senior Project. I suggested to him he take a different approach; use this opportunity to educate our community on the unseen or unknown hurdles a Cancer victim encounters throughout their battle. He did, and the audience embraced it (thankfully!) Numerous people approached him, thanking him for sharing what was obviously difficult, and to most unknown. It was risky, because they were most likely looking for something inspiring. But the reality is, as inspiring as winning the battle is, there are scars. Being angry doesn�t mean you don�t appreciate life. Get ticked off; then move on.

You are so right about quality of life issues. The side effects are devastating and I think health care professionals should be more upfront about the duration of side effects. many led us to believe that these issues would resolve themselves soon after treatment ended. You are left feeling like something is wrong with YOU when this doesn't happen. I think that most people don't want to sound like whiners. People in these fields should be more sensitive to this. Although I have to say that the nurses my husband deals with on a weekly basis at JFK Cancer Center in Edison, NJ are angels. I have never met a more wonderful group of people in my entire life. They are very sensitive to his continuing issues.

Sue

My RO's nurse kept telling me that my dry mouth would go away in 4 to 5 weeks post Tx and my taste would return as well in that time frame. When it didn't she would say things to me like " you poor baby, you are having such a rough time." So I naturally thought that I was not recovering as well as most and that something may be wrong with me. Then I was referred to this site and found out that not only was I normal, I may have been recovering ahead of the curve!! In 2 weeks time posting on this site I learned soooo much that I went back to my RO and told him what damage his nurse was doing by filling his patients' heads with false hopes. Then the 3 of us had a nice sit down.

Friends,
Yes, little do most of us know that the day when we happily ring that bell to celebrate the end of radiation and treatment, our trials are just beginning. Like most of you, the hardest part of my entire treatment and recovery, was once the twice a day radiation ended, and there I was sitting at home, finsihing my 8 AM tube feeding with nothing much to look forward to except my 12 noon feeding. It was quite depressing and I got depressed.

As great as they were at MDACC with saving me, the medical staff seemed insensitive or ill-informed about the wellness issues. On my own I contacted the social worker in the wellness section at MDACC and learned about a men's support group and free psychological counseling for cancer patients. Actually after a few weeks, and a daily two mile walk I began to feel much better. I would plan a little errand or two each day, and maybe have a friend or relative stop by, and along with the walk, as I said, things started rapidly to improve.

I also got angry at some of my medical people at MDACC at that time. I was single at the time, but now married, my wife says.."those people saved your life...why do you give them hell?". I have always told her that sometimes they need someone to give them a little hell. My wife volunteers at MDACC every week, pushing a coffee cart around the hospital to provide free coffee to patients and their families and one thing that she has to agree with me about...the head and neck section always has patients waiting interminably.
I seldom go in for check-ups anymomre, but the last time I went, I got a little p.o.'d when the ladies behind the check-in desk at Head and Neck, instructed me to stand behind a line to wait to be called to the counter, this new procedure being instituted supposedly to comply with the privacy requirements of HIPPA. I felt like, and stated to them that I was being treated like those poor folks at the City, rudely being told wherre to stand and put into long lines in order to pay their traffic tickets. I was indignant and let them know it.
A patient relations lady who happened to be there, tried to calm me down and actually agreed with me.
I don't mean to be too much of a curmudgeon, but damn, we are enduring having cancer and dealing with difficult medical treatment, and you are going to tell me to stand behind some damn taped line on the floor! I don't think so!

Anyway, the good people at MDACC did save my life and for that I am very grateful, although I did have to be a squeaky wheel from time to time to avoid getting lost in the system. I was never angry about getting sick, and never angry about having to deal with the symptoms and side effects of treatment, but I was sure as hell angry from time to time when the medical folks were insensitive to simple needs.

Take care,
Danny G.

Danny,

When you put it that way I suppose I have to agree to some insensitivity on the part of medical personnel. My experience with MDACC has been a very positive one but then I compare that to my treatment elsewhere and I find them far above others. However, I do think they forget the emotional aspects of the disease now and again...like the time I went for a followup appointment with surgeon..knowing he had the results of my ultrasound after a bout of slightly swollen lymph nodes which we presumed were related to a cold...after waiting a couple of hours I was called and taken back to a "procedure room", with all kinds of equipment and not the usual exam room. Left without any explanation my mind ran wild...maybe the lymph nodes hadn't gone down...maybe it wasn't the cold...I'm about to have a biopsy etc. The doctor came in...ran out to review my labs and than asked me why I always looked so anxious...LOL...to which I replied "Well you put me in a PROCEDURE room!"...He smiled and said "well they ran out of regular rooms and we wanted to get you seen and on your way". Do you think they might have thought to mention that to me before they put me in there?

In the scheme of things it's not a big complaint...but somehow, I don't think I'm the only one who deals with anxiety during followups and one would have thought that would have been taken in to account. Still until you've been there I'm not sure you can anticipate all the things that are critical. I do think MDACC tries...and like you, I'm grateful for the excellent medical care I received.

LOL I'll have to post another time when I am more with it. I had to take a pec for the 1st time in a long while. I can't even move my body without pain coming from my neck and left shoulder. Maybe i over did it hand diggind a garden with a spade and hoe.