Everyone here has said progress here comes in two steps forward and one step back, in fits and starts, and I'm just at the point whre I need to share my frustration with people who have been there.

First, I am still having bad mouth pain. I don't know if it's worse--it feels worse but it may be the effectiveness of the pain killers is getting to be less because I've adapted to them. It also seems like I have some new and painful little mucositis sores--ones the size of a pimple that just are there on my tongue or cheek lining hurting like all get out anytime ANYTHING gets in my mouth (water, tea, even in the last day saline solution).

I didn't post about this because I was kind of embarrassed but last week I suddenly had some really strong pain in my throat when I swallowed that came out of the blue and I ended up calling my ENT becaue the pain was so sudden and so sharp and so new and in a spot where I couldn't look in my mouth and I was afraid it was something serious like a sign of a recurrence (it was also right under the spot in my neck that has been swollen from rad). Anyway, it was the first time (and I'd like to say the last but probably not) that I'd called him panicky about a symptom and he was good about squeezing me in at the end of the day the same day I called and examining my throat manually very carefully as well as peering down it when I said AH. He told me the mucous lining of my throat looked like it was "peeling" and that he thought it was quite possible that could cause some sudden new sore spot that had nothing to do with new cancer--that there was nothing he could feel or see that would lead him to beleive it was a recurrence. He also went out of his way to try to find me soem new numbing spray or gel that I could use that would get at the sore spots. I was glad that he was so responsive and didn't seem to mind too much that I was paicked.

But anyway, since then, the throat pain has gone away but I have a new spot in my left cheek that was intensely painful yesterday and one today under my right tongue. I'm getting that this may be a new mucositis phase that is NOT welcome. How am I ever going to be able to try eating things when right now even my own saline and soda standby is painful to use at times?

And then there's the puking from gobs of mucous. I lknow I said I was all done with that--I thought I was until today when this morning I vomited TWICE (once right after waking--always a nice way to start the day) or, actually ahd the heaves twice both times because of gobs of mucous tht eventually I managed to spit out. Yuck. And of course, this happened on the first day of a visit from my brother--who is being very nice and understanding about it all--but I ahd hoped I'd be well enough and have energy enough to go out and show him around some (he's never visited me here before) and instead my husband did that while i was in bed all morning spitting, trying to gargle and stop the bad mouth pains (nothing worked) and fighting nausea and hot flashes (these are from the Tamoxifen I was recently prescribed for my breast cancer possibly abbetted by the saligen and they hit full fore for the first time this morning).

Yesterday, we drove to an airport two hours away (because my brother ahd gotten a really good fare there) to pick my brother up and then my husband and brother wanted to stop to eat something at Boston Market--which has lots of side dishes that are GREAT mushy food that it seems like I should be able to eat--pureed squash, creamed spinsch, mac and cheese, and I tried a little bit of squash and almost choked--had to spit it out because it seemed so inedible--because I had NO saliva and it stuck to my teeth and the roof of my mouth! How does one eat things with no saliva (and when can I expect the they benefits of IMRT and amifostine might actually show up and give me some saliva?)? Is it just that I need lots of practice in the safety of my own house with getting stuff unstuck and down my throat? I'm starting to wodner if eating will ever be pleasurable and not an ordeal at best.

Whew. That was a good long whine--or vent--or whatever. Thanks for being there to those of you who have ahd the energy to read all the way to here.

post script--my last rad treatment was seven weeks ago. This means it has been longer SINCE rad than the time it took to go through rad.

I'm just feeling like somehow I'm never going to get well, never going to be able to eat again, will always have mouth pain, etc. At least when I let myself go there. I am trying to distract myself with videos and friends visiting but when my health gets in the way of even enjoying that it makes it hard.

Hi Nelie! I do feel for you. Been there done that! I know, I know, everyone says be patient & I can only tell you that too. Diversion works pretty well & it sounds like you're doing that. Also, it will take alot of trial & error to figure out what to eat, especially in public. My rad ended the end of June last year & I remember going to the state fair mid September. I ate corndogs with gobs of mustard & drinks of milk to get them down! My mistake was the scone I tried to eat without first getting some milk! You got the scones from one line & the milk from another & I got ahead of myself & took a huge bite of that warm scone with butter & rasberry jam thinking I'd have time to get milk! I was wrong. There was a guy ahead of us that couldn't make up his mind & I was swallowing & swallowing to no avail! I was choking! Finally I ran over to a garbage can & had to reach in with 2 fingers & scrape that wad of dough out right there in front of hundreds of people! In reality no one probably saw what I did but at the time I felt pretty embarrassed! You just figure it out! So I do not eat biscuits anytime without lots of milk or something & even then it's almost more hassle than it's worth! You will look back in weeks & remember when things we're a little worse oh so vividly. May your time through this go quickly! Erik

By the way, Nelie my spit is still improving drop by drop even now. When I wake up most mornings now, the inside of my lips are moist & even a little drool! Ah, the simple things, drool in the morning! My tongue, cheeks, teeth & upper throat are pretty dry though. A couple sips of water & straight to the coffee pot to make very strong, rich coffee with cream & sugar seem to make me salivate! Wendy's chili with cheese, onions, & a couple of sour cream tubes mixed in goes down real well & is delicious & nutritious! Erik

God, I'd love to think I could even handle coffee. The thing is everything HURTS if it has any acid in it --I'd imagine coffee and Wendy's chili would be among those things. Iced white tea (very mild tasting) seems to be OK most of teh time buyt I can't find much else that works. Did you have problems with pain? Is it just that my tongue needs to adapt to having these things brushing it up again? Or will it always hurt?

I love you Nellie.

Erik, I'm still dealing with having to spit food out occasionally. It sort of made me laugh about the scone incident. Since food suddenly has taste again for me, I don't often wait to dive in before the waitstaff brings either water or some other beverage. This is horrible when at a Mexican place and they put the basket of chips and salsa on the table. Old habits die hard. With three teenagers with me and a hungry man, sometimes it's like you just automatically reach for the nibblies before they disappear completely. This is horrible when I realize I have some hot stuff and crunchy dry stuff in my mouth and I DESPERATELY need a drink.

My new mantra should be "Do not put anything in your mouth unless you have a drink ready"

Jen

LOL! I can see that grabbing fast would become a habit with three teenagers and a husband eating with you! I had a couple of incidents like that when I was recovering from the glossectomy but before radiation. Honestly, I'd love to get back to that point again.

I too am having a hard time with the eating and am almost 2 months post rad tx's. still have some stinging sensations on the tounge where the rad tx was concentrated. Seems like ground beef would be the easiest but it is like sand paper. Vanilla pudding was the first thing i ate that didnt hurt one bit. but getting tired of mushy foods and having troubles with my dentist on getting my false teeth to fit correctly and told him to redo the whole damn set that i paid 2 grand for and have no use for them since they dont fit right. I was so mad when i went to get the final set and couldnt even close my mouth cause the bite was so far off. Have been fighting these for 2 months now. Its really holding me back from trying other foodws.
I too have a problem with some foods sticking in my throat and chocking. I ate some cold cereal the other day and i thought it all went down fine then 2 hours latter i felt a cough come on and out popped 2 whole pieces of cereal that was stuck in my throat the whole time and never knew it. That scared the dickens out of me. I dont try to eat unless i have anouther adult in the room just in case. But one plus thing is all these shakes im drinking are still tasting as good as they allways have :-)

Nelie and Bob,

I hate to be the one that dredges up the old rule of thumb that's often used here -- the one that says you need a month of recovery time for each week of radiation. It may not actually be that bad, but I know it can feel like a horrendously slow process when you want to see some tangible improvement.

In the few months that followed radiation, I know I had quite a few embarrassing restaurant moments when I thought I was geared up to handle a particular dish and found out in mid-mouthful that it wasn't meant to be. There were times when it seemed as though my taste buds would never be "normal" again and I wondered if I could ever again enjoy any social event that involved food. (I also thought I would always wake up in the morning feeling as though I had been chewing on sawdust all night, but these days I wake up drooling on the pillow -- even though I lost some salivary glands, had XRT and didn't have amifostine.)

It DOES get better -- please don't give up hope.

Cathy