I got the news I did not want to hear but deep down I expected and at times I even tell myself this is how it will go for I was deserving of this path. 49 nodes removed, 2 positive and have my meeting with oncologists Oct. 13th to begin my everyday zapping. My tongue they say is 95 percent healed although they found a spot for potential bleeing and popped then sewed it. So I am in complete wonderland right now and just want some damn normal food to make me feel better.

Here is where you, my friends come in...Why lie, I am scared to death that this disease is still wandering around in my body and how unsure they were today of is it or is it not still around but lets zap ya just in case. What can I expect, How can I get through this, How can I avoid another feeding tube and any other tricks o the trqade any of you may have. Prepare me my OCF coaches, and I will train the best I can. Thank you all for prayers and support but unfortunately we got a little more ways to go. Love Yall


Your Friend

Nathan

Oh Boy!!!! I am sorry to hear your news of the positive nodes. DARN IT!!!!! You already went thru enough. Now time to get the game plan going. Now is the time to eat as much as possible of everything you are capable of eating. I know it will be hard due to all the set backs you have had. Dont worry about gaining weight, this is the time to build yourself up and bulk up. You want to go into radiation having no regrets that you missed out on having your favorite foods.

Go to the dentist and get mouth trays made. You will want to start using the floride trays right away. Get your hearing tested cuz cisplatin can cause hearing loss. It didnt happen to me but others have had this problem. Make these appointments asap, your Oct 13th appointment isnt that far away. They could have you begin a week later. If you are ready it will help things go smoother.

Other than that, just mentally prepare for battle. I love your attitude, it will help get you thru this fight.

Best of luck with everything.

Hi Nate... gosh this is news none of us wanted! But you will make it through! Like Christine said, eat everything in sight. Did they give you a plan like number of rads? chemo? or is that all to come from the MD on the 13th?

Anyway, we all love you and will be here to support you through the treatments.

Dodie

Make certain when they do your blood tests, that they also due a thyroid test that includes your TSH level so you will have a base line on this before radiation. The thyroid often decides to quit working anywhere from a few months to years later and it is good to know TSH level prior to treatment.

Since you had neck disections you may also meed PT. Are you having any problems getting arms over head, etc.? Do not go lifting anything over a pound for a while. Make certain your chair has arms on it. You also may want to put something under your arms like a pillow to avoid drag on the shoulder until it has time to heal.

As Christine says, eat as much as can now. Very few us made it through radiation without of a peg, it can be done but it is not easy. You must be very determined to get at least 2000 calories or more (David says 3000) in you daily regardless of how awful it tastes and most say 48 oz of water. That's a lot of swallowing when you feel so awful and your throat is so sore. I didn't have chemo when I did it so it was easier for more than most. I also only had a neck dissection so interior of mouth did not hurt going in. If you are having any trouble eating before radiation, I wouldn't attempt to do this without a peg. It is only going to get worse.

Please don't panic on the positive nodes. They removed them during the surgery and the radiation should clean up any microscopic stuff left around. I had one positive node and am still around despite a few additional setbacks. Keep your positive attitude and we'll get you through this.

Take care,
Eileen

Hey Nathan

Just saw this post - sorry to hear the news.

Be strong, be positive, and take all the advice you can from the wise ones on this forum who've been through it and come out smiling.

Will be thinking of you.
jp

Sorry about the crappy news Nathan. You're definitely in the best place for support. Thinking of you buddy!

Nathan, sorry to hear about the nodes and the radiation. You will have a squad of folks here cheering you on through the radiation. It does suck. But it is chasing that damn disease out of your body,and that's a good thing...

To recap:

Get started on the Fluoride trays;

Get blood work done especially TSH;

Get a hearing test especially in the high frequency range;

Try and fatten up as best you can;

Consume as much water and as many calories as you can each and every day. Target 48 ozs and 3000 calories; and

Ask us any/all questions 24/7.

The radiation is ONLY 7 weeks so get a calendar and mark off the days. Usually doesn't affect anyone until the 4th week and you're usually "out of the tunnel" by the 3rd week post Tx so plan for 7 weeks of not fun and hope for better. Before long you will be posting to others about to undergo radiation.

Nathan, sorry to read your news but you'll definitely get through this, you have the right attitude! I second and third what David recommends. Like him I didn't go with a PEG - it was tough, but doable (although I don't necessarily recommend it!). If you do decide to forego it, make sure you have plenty of viscous lidocaine or other numbing agent on hand to help you get the necessary nutrients and water down.

No question, you're headed for a rough time. But then it'll be over and you'll be relieved and proud that you made it through.

My one piece of original advice: baby yourself during treatment and for a good few months afterward. Don't plan on doing much and don't feel guilty or stressed about not getting anything else in your life accomplished. Easy to say, I know... but you will really need to devote 100% of your physical and mental self to getting well.

That said, we all are as David said available at all times for anything you need.

Courage!
David 2

Hi Nathan,

I didnt have the peg or the feeding tube , in fact they didnt offer it to me!!! My secret was lots of Zylocaine Viscous which i think is the Aussie equivalent if licocaine viscous. When the pain got really bad i started to eat in the bathroom (its now become a habit and i still do!!) with food in one hand and a glass of water in the other. A few gulps of (blended) food and then quickly rinse with water to ease the sting. Rest for a few mins then start the process again. I did this even when eating brought me to my knees with pain. I just persevere and didnt end up needing the tube or peg. It really does help with the physical recovery. I'm now four weeks out and have enough energy to keep going for the entire day.

Good luck with your treatment. Just remember, at times it will feel like its never ending but it does and its all worth it in the end.

All the best.

Minh