Debbie,

I have had 2 swallow studies now and will have another in a week or so. They had to cut the nerve that controls swallowing and thats why the trouble swallowing. I do, however feel that there is some swelling due to neck disection but it seems like food that I can eat goes down so it may be in my head also. I sure hope so. This having to learn to swallow again is very, very frustrating but Im sure it will be worth it in the end.

Billy

Hang in there Billy,
I know how hard it is and I would have just laughed at anybody that would have told me that it was in my head. But not all of it was, but when I look back, some of it was and I quess just because of fear of aspirating food. It's a scary thing. The speech therapist finally told me that she would resucciatate me just to get me to eat thick pudding!
You are doing good. Just keep trying and it will happen before you know it.
Debbie

I can relate to the pudding part...LOL

I am sick of pudding. I ate some roast and rice with roast gravy tonight. I also ate some carrots and potatos. I know it will come in time but it is just very aggravating right now with everything else thats going on.

I found that spaghetti of all things (with milk) just had the right combination for me for many weeks. I never knew you could blow out whole spaghetti through the nose, though! Water was just too thin for me to drink and it took almost 2 years before I could take multiple, successive gulps. I really stocked up on the Ragu and noodles and rode that horse as long as it worked.

You'll find what works best and when that changes move on to something else. It gets better by the week but, unfortunately, not by the day. Take a moment from time to time to look back at progress over time and you'll be amazed.

Ed

Hey guys,

Hubby is down to 8 more treatment days (x 2 = 16). His swallow mechanics are definitely terrible now. He has had no surgery, so I am sure the damage is from rad. Did your problems get worse after treatment stopped, in other words, did it continue to go downhill several weeks after end of treatments??

We do have a therapist in place to help with this but, I sure hate to see this get worse!

TKS, Deb

Yes, I think the vast majority of folks here will tell you that radiation side effects continue to worsen after radiation ends. Everybody is different but the going rate seems to be about 3-6 weeks after treatment ends. For me it got worse for about 5 weeks after treatment, and then it seemed to level off and started to get better.
It can be really demoralizing because you go into it thinking that when treatment ends you'll finally get relief - but it doesn't typically happen that way. BUT - if you can just get past that several weeks, it DOES get better. Just when you think it won't, it does get better.

Best of luck to you. Hopefully your husband will be on the shorter side of recovery.

-steve

Hey Billy

I posted a couple of seafood recipes a short time ago for Petey, that I was able to eat without to much trouble. He really liked the Crabmeat augratin, so do I!

So if you can eat seafood....

http://www.oralcancerfoundation.org.../get_topic/f/15/t/000018/p/1.html#000002

http://www.oralcancerfoundation.org.../get_topic/f/15/t/000018/p/1.html#000003

Kevin

Those look great bud. I will try them as soon as possible.Thanks a bunch Kevin.

Billy

Hi Billy,

I am a three year survivor of oral cancer. I had a mandible free flap replacement of the lower jaw, floor of mouth and lost about one fourth of my tongue. I must mention that I am a retired chef. After dealing with a feeding tube for months, I decided to start experimenting with soft foods, but still wanted to eat what my family was eating. I found that if I cut all of the regular foods up real small and used sour cream with the foods, they "slid" down the throat without any problem. If you cannot deal with the taste of sour cream, try mayo or the likes. Cream soups are also wonderful. Even "chunky" soups can be used if you have a stick blender. Just cook the soup as normal, but before serving, use the stick blender to puree the soup...still giving you all of the flavors, but in a liquid form without chunks. I have been out of radiation now for over three years, and I am about to get dental implants in my lower jaw, so hopefully, I should be able to chew again. It has been a long and hard road, but keep the faith and keep fighting. IT IS NOT THE END OF THE WORLD unless you allow it to be. I was told I would never be off the tube, but I am. I was told I would never get teeth again, but I am. My doctors atUCLA have no idea how I have survived this long with as serious and advanced my cancer was, but I am still here and still giving the world hell every day. Do NOT allow this set you back and make you complacent. You CAN recover from all of this to enjoy life as you used to.
Our prayers are with you and all the other survivors out there.

God Bless,

Chefron

Wow Chef,

You dont know how much I needed to read this right now. I am a little down and just want all of this to end. I just want to get back to normal. I visited my dentist yesterday and she made impressions of my mouth. She also said that I would have my back teeth back in in about 6 or 7 weeks start to finish. I really have no way of chewing my food up real good right now. I feel that when I get my teeth I can chew it to the consistency I need in order to swallow it. I am trying different things all of the time. I ever dipped bread in my soup last night and ate it. That was the first time I had eaten bread since my surgery.

Once again Chefron, I do appreciate you posting the words of encouragement my friend.

Billy