Frustrated

Susan,

I am sorry you are having a horrible time with the side effects of treatments.  You have been keeping up with your doctor appointments so all is probably well, just a slow boat to healing.

I was stage IVa, bot, scc and at 4 months I still had a long way to go before I could seriously stand to eat and today at 16 months I still battle dry mouth.

Provided your doctors see no problems, your body probably took a serious beating from treatments.  How do things compare to a week after treatments?  Are they better?

I agree with you, most people do not get it, but the H&N crew does.

Good luck on feeling better

Matt

Hey Susan, four months is still at the beginning, of recovery.  Recovery takes lots of time and patience, so you need to lower your expectations regarding the speed of recovery, and just roll with the setbacks, as you will eventually spring forward again.  In regard to the dry mouth, I used Mouth Kote spray for years, I always had a small spray bottle in my pocket, until my sliva magically returned a couple of years ago.  Hang in there, life will get better, but it is, I have found, one of those one day at a time kind of things.

PATRICK

Susan,

This is such a slow process and like John said, sometimes it's one step forward, two steps back. Other times, it's two steps forward and one back... It varies day to day, week to week and month to month. From the OC forums I participate in, it's become apparent that it may be upwards of 6 months to a year or more before we truly return to some sense of normalcy. And even at that, it's more like the infamous "abi-normal" than the normal we have in mind.

I expected to be further along at 3 months out than I am but I'm not. I have a bit of thicker saliva in the mornings and this morning I actually had some real saliva flow on the right side of my mouth for about 5 minutes but it's gone within an hour of waking and Peter O'Toole comes visiting on his horse in the desert that is my mouth the vast majority of the time. That along with all the other side effects is so frustrating! Knowing it takes time and knowing recovery is slow doesn't always quell the frustration. 

All we can do is hang in there and try to maintain a positive attitude. Sometimes we need to vent and this forum and the support it brings is a Godsend. So hang in there, make sure to do your swallowing exercises. If you don't have them, let me know and I'll post what my SLP gave me at Johns Hopkins. They're difficult as hell but worth doing and have made a big difference in my progress concerning swallowing and eating. 

Positive thoughts and prayers,

"T"

5 1/2 months out still puts you in the baby stage of recovery.  I liked what Duggie said...."grab your water bottle and do stuff you like"....it takes a lot of time for all your energy to return, and longer for saliva (for most of us anyway).  I'm 13 months out of radiation....11 months out of all treatment, and my water bottle still goes with me everywhere.  I eat soup most the time, tho I try everything (and that is EVERYTHING) else.  Somethings just don't go down as well....meat for one, crackers, bread, you know...the dryer foods...but they will go down with water or milk at my side.

Do try what Peggylulu said about the milk, for some relief from drymouth.  Milk gives a person the illusion they have saliva for a little while.  Be patient....

p

Everyone is different with their recovery. Some days seem worse than other days....but I'm sure if you look back, you will find you've come a long ways...and for the good.

The saliva seems to be an issue for everyone. My loved one has been out 6 months and still complains of his dry mouth and lack of saliva. He keeps his bottle of water with him constantly. While eating it's not uncommon to have several glasses of water to wash it down. But, in reality, we must admit it has gotten better than what it was....at least he's swallowing water!

Hang in there...it will get better. I know it's hard to be patient and you want back some of your normal very quickly, but it will come at it's own pace.

Do as Jeff suggested and get out there and move around and do something...it may get your mind off the problem.

~C

i will be 8 months post treatment soon and i still have swollowing problems - i just keep drinking plenty of water with my meals and ensure - i personnely am grateful i can eat meals - you will be rid of the tube soon just have patience. any progress with this disease is measured in months and years not weeks and days. hang in there and stay strong

Roar said:

8 months

i will be 8 months post treatment soon and i still have swollowing problems - i just keep drinking plenty of water with my meals and ensure - i personnely am grateful i can eat meals - you will be rid of the tube soon just have patience. any progress with this disease is measured in months and years not weeks and days. hang in there and stay strong

Jim faithfully did saline rinse and used Biotene spray.

Although I am convinced his salivary glands were spared for the most part, he stlll battled dry mouth.

Remember: if you are truly dehydrated (i.e., been working in the sun too long) you can't just drink water and get rehydrated - you have to have salt, also.  That's why Gateorade, etc., has salt in it.  Rinse with salt water.  Use the Biotene mouthwash and spray to add moisture.

Everybody's different but I think it is worth a try.

And don't be in a hurry to lose the feeding tube: the weight loss effects of radiation did not hit Jim until a few months after treatment ended and he rapidly lost fifty pounds which he has since regained.

Hang in there - I agree with the others - you are doing better than you might think.  It's just tough.

jim and i said:

one forward, one back

I know it is hard but it will get better. Jim went back and forth on the saliva for months too. Do not worry about being a burden on family. They love you and would never consider you a burden.

Sorry to be posting so late on this post ...but just so you know, I am now 20 months out from my last rad, getting NED's so far and my taste buds came back about 85%  several months after my last rad, then left again for several months ..and now at 20 months have just started coming back (I'd say about 50% back almost overnight).  My saliva has always been gone, but about  a month ago my saliva glands started "firing" up as I call it ...like when you were normal before treatments and you would be hungry and or see a wonderful peice of chocolate cake ..bugged me at first ..then when out hunting one day I popped a candy bar in my mouth ..and guess what ...I was able to eat and swallow it (slowly) without any water ....now at 20 months I belive I can say my salive is returing...slowly, but returning ...

Bottom line is we contineu to heal at our own pace, every persons body is different ... you will get there.  As a father of five children ages 2-14 I totally get the "stop being a burden to my family" feelnig ...no parent wants there kids to see them so sick and worry ...but remember your family loves you ..and yes, they too may be tired of you being sick or not fully back to normal...but not for lack of love, just becuase they love you!!!  Hang tough....you will improve!!!

Tim