NED!

I never had to have chemo or the radiation, but do understand so much of what he is going through. First let me say it usually will take some time, and it so different for everyone. Some it can be a few months and others it can be some time. I only had surgert to remove my SCC tumor, and 86 lymph glands, and my larynx. My swelling went down fast but I will always be numb on the left side from my ear to my chin. You get used to it, you just have to be very carful when you shave as you can cut yourself and not know it. Now when they took my larynx you also have no air going through your nose or mouth, onle through the hole in your neck so you can't smell. It took some time to get used to all the hot air I exhaled right undre my chin. I thought I was going to go crazy. Even cryed when I was alone and would think I can't do this. Well I did and it slowley got better, it takes two things. First, you have to accept it. you are still alive and would not be otherwise. Second, it can take time and some things take a long time. A good part of eating is smell. Oh that smells so good. For me, that is only a memory and smell is one you can not recreat in the mind. I can't remember how a peach smelled. So I made a divice that goes from my neck to my mouth so when I inhale it goes through my nose then out my mouth then in my neck and I can smell. I will not go outside with it, but I can smell if I think out of the box.

He is pushing his body a lot and he will get very tired. When they do blood work ask for a thyroid and vitaminD test also. They get over looked and can do so much to you.

You make sure YOU get rest as well as you worry about him which is also hard on you. Please never feel bad about venting. It does you good and at times the only way to stay sane dealing with this disease. Know ypo both are in my thoughts and prayers. It takes time and Never Give Up..

Bill

CONGRATS! Awesome news!!!!

I'm amazed he worked through treatment and was back full time after a week. WOW.

My husband is 3 and a half months out of treatment. He is getting better and better but has some of the issues you mention. He was completely out of commision for the last month of treatment and was out of work for another month before returning to work. When he gets frustrated about where he is right now in his recovery, I remind him of where he was before. It is easy to see the big difference and this helps him feel better. This might not work with your husband since he seems to have done very well during treatment.

it takes a while, but it does get there, just so slowly that it's maddeningly frustrating.

I was in a similar place, (stage IVa, base of tongue, SCC with left nodes involved) and had induction chemo and concurrent radiation and chemo.  After treatments ended I was shot, fatigue like you can't believe, a mouth drier than a dog biscuit, no ability to taste anything, and swallowing even water was an experience and a half.

It was just about 3 months before I was able to even attempt eating real food.  it had to be soft and wetter foods worked better.  It was a struggle to eat anything and yes, I had to have water with me to eat, and would take so long to even finish a bowl of soup that I had to put it back in the microwave to reheat it (more than once too). 

It was a very slow process but I did recover the ability to eat and enjoy food again.  An added bonus was that once I was able to tolerate real food, the fatigue seems to fall away.  I spent the month of September struggling with food and crushing fatigue, but it all but disappeared as October moved to November!

He will recover, let him know it gets better and encourage him to try, but don't obsess over it and don't push, if he is anything like me he'll push back and resent even trying, letting alone wanting too.

I had my last rad in July of 2012 and am largely back to normal, I can eat just about anything, though the extremely dry food items like bread, chips, pretzels, and over cooked chicken are challenges, I've mastered the water balance, sipping the right amount of water so I can enjoy these dry items.  I miss being able to simply pick up a handful of Doritos, but I get to eat them, just in a new way.

Peter

Vicky, I too have Lymphedema in the neck and have found the self massage helpful in controlling and reducing the swelling by getting the Lymphatic system moving again. All of the other things your husband has gone through, we all have experienced to some degree. They do get better. I am almost 4 months out from radiation and eating pretty much whatever. Still have some choking issues and have to drink a bunch of water but managing. Taste is improving slowly but is better.

Here is the link to the youtube video: https://www.youtube.com/watch?v=Q9FP6AHj9Eo 

Let me know if you all have any questions. I emailed the thereapist in the video and it is ok to do 2 to 4 times daily as long as no soreness arrises or skin is not affected.

Good luck and God Bless,

Tom in NW Missouri