Jamie, people react differently and I was once very worried about my voice too particularly I am a school teacher. I had my oncologist reassure me all the time that my voice box was not damaged and it took time to have my voice recovered. For about 1 or 2 months, I could just whisper and felt really frustrated. Things however did improve and gradually I could talk quite normally in about 3 months post treatment. Of course there is still the hoarseness even today, almost 3 years post diagnosis due to a lack of saliva. My voice varies every day but can communicate with others without problem. My voice sounds the clearest when I am crying and talking at the same time because my tears are around my voice box, giving it a kind of lubrication. Funny! So don't worry, things will get better gradually and slowly.

Karen.

I had a scope done on my lungs July 12th and lost my voice again just like I did when I got done with radiation. Does anyone know how long it will take this time to get my voice back? I finish radiation April 28, 2003 and I have no salvia.
Mary Lee

Hi there, seems like it has been forever since i have been here. I have set my mom up on the website to read everything I have. She has moved back to her own house now, was staying with my aunt. Her voice is back, but she still is having choking problems and unable to swallow much, first the doctor says try eating, then they tell her if she eats and it goes down wrong, she could get pneumonia?? what is that? so she is still using the feeding tube, but i can tell she really wants to get back to eating regular food. Hair is slowly coming back in. I took her to the local octoberfest today and she got in some walking and sunshine. Only problem now is she is soooo bored! she is used to working, and going out with friends and shopping, now it seems like she doesnt have much interest in those things. Waiting for an MRI scheduled for Nov. to see if she will need additional surgery after everything else. if not then she can probably go back to work.
Got Dan's pictures from the LV trip. looked like fun, maybe next time I can get her to go to meet some of you. I hope she will start posting all of her worries/questions and get to know all of you. Talk soon. Jamie

Jamie,

The type of pneumonia the doctors are concerned about is aspiration pneumonia, which can occur when solid particles (like food) go down the wrong way and end up in the lungs. This can be an issue especially with older people who have swallowing difficulties. If she hasn't been swallowing for some time, it will take awhile to get adjusted again, so she will obviously need to start with easy, soft foods and work very slowly to get the muscles working properly again.

I hope she can start to get some strength back so she feels like getting out and about -- but it does take time.

Cathy

Hi Jamie,

I am glad to hear things are improving for your mother. I have been thinking of both of you and hoping for the best. Direct her this way and maybe collectively we can help make the recovery a bit easier for her.

Ed

I have given her the website and my password to get in, i think she read a few last week and i had her look at brian hills, video but she is not really computer savvy, i will keep pushing her as i think it is the best way to get positive reinforcement. she tried going to a local support group but it seemed like it was kindof depressing for her.
on to that aspiration pneumonia,, is there anyway to prevent it? or are you taking your chances when you eat. i want her to start trying different things, but that is a worry. thanks jamie

Jamie,

Unfortunately aspiration pneumonia is something that many of us will battle because of the swallowing issues from treatment. They can do studies to try to identify how impaired swallowing is plus it will improve with time. Speech pathologists are useful in developing a plan to relearn swallowing to maximize the remaining functioning of the throat.

I am glad to see you back and especially happy to see your mother is doing good. Give her my love.

Ed

Hi,
Your mom can alleviate the constipation somewhat by using a version of Boost or Ensure that includes fiber. You can also use a soluble fiber like Benefiber that can be dissolved in water and ingested through the feeding tube. Getting this under control can make a big difference.
My radiation oncology nurse recommended Aquaphor to use on the skin as it became burned from the radiation. I used to glop it on every morning and night and it seemed to improve things. It helped my head stick to the pillow!
Take care, Sheldon

HI EVERYONE, SORRY IT HAS BEEN SO LONG. BUT I HAVE BEEN BUSY. I HAVE SOME NEW QUESTIONS PLEASE, MY MOM ENDED HER RADIATION TREATMENTS IN THE END OF SEPT. WHEN SHE WAS DONE, SHE COULD SWALLOW WATER AND LIQUIDS MINIMALLY. NOW A MONTH AND HALF LATER, SHE CANT DO ANYTHING BUT ICE CHIPS. SHE IS DEPRESSED, FRUSTRATED AND NOT GETTING ANSWERS FROM THE DOCTORS. I TOLD HER THAT THE HEALING PROCESS PROBABLY TAKES SEVERAL MONTHS BUT SHE WANTED ME TO GET SOME INPUT FROM ALL OF YOU, DID YOU HAVE THE SAME PROBLEM? I WENT TO THE ENT WITH HER LAST MONTH AND HE SAID THAT THE RADIATION CONTINUES AFTER IT STOPS AND THAT NOW THERE IS EDEMA, SWELLING AND IT JUST NEEDS TO HEAL. ANY WORDS OF ADVICE?? THANKS JAMIE

Jamie, The recovery is sometimes slower for some, it sounds to me like she is right on track time wise. She will likely start to see improvement soon. Perhaps a specialist in the area could evaluate her swallowing and see what could be done to help. Some people need dialation to make the esophagus larger after treatments.

The edema is also a normal after effect. There are gentle massage techniques to relieve that as well. Lymphedema therapy is a specialty, ask her doctor for a referral to a trained lymphedema specialist (usually a physical therapist will have this as an added specialty)

This it the worst time in her course of treatments. Please reassure her that everything you mention is quite normal and WILL start to get better soon.