Roger, while it is important to practice your swallowing, it is also important to be on the alert for aspiration. Try coughing up the liquid that you feel isn't going down and go see a doctor right away if you develop a fever. Practice dry swallowing to keep your swallowing muscles in shape every day.

Thanks everyone for your encouragement and advice. I seem to be making gradual headway with the sips of water, and at least having some in my mouth is refreshing. Good point on the dry swallowing. I do this a lot and had not considered it to be part of my therapy. But muscle movement is muscle movement, so I will be sure to keep at it.

Hi Roger:
Back when I was in treatment I had a lot of mucositis problems. I could always remember how I felt that day, how bad it was that day. And maybe I could remember how I felt the day before, but two days back or three days back, or a week back, forget it.

Not remembering the long term day to day made it difficult to determine if I was getting better, getting worse or just standing still.

So, I started a written log and religiously wrote a comment about how I felt every day. Over the short term it may not help much, but from week to week it definitely did. I could easily see that I was improving, even though it seemed the improvements were almost too small to describe on a day to day basis.

Give the idea a little thought, it might be just the thing you need to give you that little boost to your spirit, that hey, improvement is occuring, it's just very slow in coming.

keep fighting, you will get there.

Tony

Hi Roger, I just signed back up again yesterday. I also have a re-occurrence (from 2008). To others I seem fine on the outside, but on the inside I am shaking. I feel like the cancer has spread to my brain, because I am walking around in a Fog. Today I will get my PET scan date, Fri. I meet my reconstruction surgeon. I don't like doing things twice! I am not brave! Radiation again...with THAT MASK...NO WAY!!! I did read your pages here. You at least you give me hope. Do you have a feeding tube?

Hi DianneH,

I am so sorry to hear of your reoccurance. When I found out I was so terrified and full of disbelief that I did not know what to do. I went through Christmas in a fog as you describe. I don't regard myself as brave either, but I think we all untapped reserves that help us through. When I had the first treatment, I pictured it as once and done, and it seems overwhelming to go through it again. Yes, that horrible mask and radiation, this time with chemo stirred into the mix. But, there will come a time when it is done, hopefully for good this time.

I have both a feeding tube and a trach. I hope to lose the trach in a couple months. I imagine I will have the feeding tube for some time as I ramp up on my eating.

Good luck in your meeting with your reconstruction surgeon. You and I will both get through our ordeals. I am eager to hear how you progress. Best of luck to you!

Roger

Hi everyone, this is Roger's daughter Hilary. I have been going through things on his computers trying to find things and such and I came across these support forums he was using.

Unfortunately, my dad passed away in the beginning of April. The cancer had become too aggressive and treatments were not an option anymore. He didn't suffer long and he fought hard until the end with such pride and strength. I am so thankful that he had such great support from all of you and I know he would've liked you all to know how he was. I can take some comfort now knowing he is no longer in pain and suffering. Even though I lost a great father, he won his battle and he is living pain free in paradise somewhere.

Best of wishes to all and your loved ones.

-Hilary

Hilary,

I am very sorry to hear about your dad. It is always so hard to lose the battle to the beast. Thank you for taking the time to visit here for your dad to say goodbye. My thoughts go with you and the family as you carry on.

Hillary, my deepest, heartfelt sympathies to you. I'm so sorry to hear of your dad's passing. I was wondering how he was doing. It was so thoughtful of you to think of us, in the midst of your grief.

Hilary, thank you for letting us know. Im so very sorry to hear of your fathers passing! May he rest in peace free from pain and suffering. My sincere condolences to you and your family.

Hillary,

I am so so sorry for your loss. I just lost a loved one to the "beast" as that call it, last week. It was hard. I am currently a caregiver to another. My heart is with you. It is so hard. I wish I could give you a hug.