By the way my first (half) day at work went alright--great in some respects, hard in others. I loved being back with my wonderful colleagues and was involved in doing something I really enjoy yesterday.

But it really brought home to me how weak I am compared to my normal energy level still--there is a huge long two story staircase I go up to get to my office and I headed up it carrying a bunch of stuff (laptop, briefcase with a bunch of books inside, and a huge beach bag with all my mouth-care stuff--saline rinse, kleenex, tube and bottles of water for feeding, etc.) and halfway up those stairs I realized it was going to be like climbing a mountain to get to the top! I used to charge up those stairs lugging all sorts of stuff before all this started. When I got to the top I had to sit down and rest before heading down the hall to my office.

Also of course I had to just get over my inhibitions about spitting out gobs of gunk into kleenex every so often while sitting in this meeting. I did manage to do that eventually.

Today I'm going in for the afternoon again instead of attemtping the whole day--in part because I got so little sleep last night because of mouth pain. I realy wish the pain, at least, would get to be not so life-disrupting (I also am relying on people giving me rides to work and home again because the oxydose makes me a little too drowsy to probably be a safe driver and I can't just get by on Tylenol--mouth pain is too bad).

Nellie,
I can understand what you are going through with your mouth pain. Last week I finally felt that I was able to try to eat some food. I have been on tube since 2nd week of radiation that started March 8th. Last treatment was sometime in May. I'm not good on dates plus with all the meds I was on and everything I went through I was totally oout of it. I craved food so bad that I think I rushed into eating foods I shouldn't have and since last thursday I am back on the tube.

I got a sore way in the back of my throat and my tongue has started feeling funky again. It seems like you have to really be on desparate needs to get a doctor to precribe anything. I finally got some more of the magic mouthwash about a month ago. I brush my teeth as much as I can to help get rid of the gook in my mouth.

My sister thought that the salt in the salt & soda rinse helps get rid of mucus so I made the solution stronger so I also swish with this. I have a very hard time swallowing water. If feel as if when you go under water in a pool and get water in your air pipe and choke.

I found that by going to work it helped make me stronger. I was so weak from all the weight loss (50 lbs) that everyone was concerned. Since my husband and I own the business if I felt tired I could lay down which I did a lot at first. I don't get tired as much as I first did. But by the end of the week I am ready to go to bed. I know I need to take it easy and not to do so much but it is hard when

Hi Terry, Thanks for the synpathy. It does sound like you and I are in similar places. I have a hard time swallowing water too--but that's because water feels like it burns some spots in my mouth. But then I also do have that pain on swallowing as well.

After I posted those posts yesterday, I did a little reading up on thrush elsewhere on the web (tried to find reputable sources such as webmd) and read in several places that basically nystatin liquid, swished and swallowed, is the "gold standard" for the treatment of oral thrush.

So I reluctantly have been making myself do the magic mouthwash more often again. I told my husband to get on my case about it because remembering to do any med four times a day is hard for me--I have all sorts of notes reminding myself about taking Tamoxifen each day too--and I only have to do that once (two pills, ground up and put through the tube at once)!

As for getting people to help carry things--you're right. I'm just not used to having to do that. Also there is an elevator I could have used in my building but it never occured to me (until I was halfway up the long flight of stairs. It's only a two story building though the second floow is actually, in height, more like a floor and 1/2 to two floors above the first for a variety of reasons.)

Terry, I don't have kids (not by choice but by chance) and I think it must be both harder and easier to go through this when you have kids to take care of. I'm sure you're less able to take it esay when you should--on the other hand, I'm sure they keep you going at times. I do have a wonderful husband who keeps me going though, and I really enjoy my job--it's something that invovles really good work where I get to chnage people's lives for the better in all sorts of ways and I have great colleagues.

Now if I could just find some food I could eat that isn'tthrough the tube and deal with this mouth pain! I had more of the really intense sharp pain in the early norning hours last night. Because my tongue is kind of sore, my husband is coming home around lunch hour and will help me call the ENT to see if maybe he will look at it one more time. I don't know if there's anything he can do.

The other thing I'm worried about is I'm scheduled for surgery to remove my port Friday. I know this is outpatient surgery but when they inserted it they used general anesthetic which I think means they will want to put a tube down my throat which I *really* don't want right now in terms of dealing with the mouth pain. I have to call and find out about that.

Nelie,
I saw my doctor (family doctor) who used to work in oncology today. I made the appointment to discuss my anxiety issues plus to ask some questions I had. I asked her about my throat being sore and she said that it just takes time and it takes longer for others. Like some people would be back on regular food one month after treatment and some take longer. I asked even 6 months and she said some even longer.
But I will make it she said it just takes time and the radiation and chemo really put our bodies through a lot.

I was being concerned because I get these bumps on my body that do not want to heal and she said that it is because of what my body has been through and my immune system is not back to par and there is nothing I can do just time. I know my white blood count was okay but it was stated that it wasn't as high as a normal person but will get better in time.

I too still want some good food that I can taste without any pain or problems. I understand completly about that. And the water burning parts of your tongue and throat same here. It scares me that maybe the cancer is back but my doctor this morning said that it is that my body is not completely healed and it will take time and to concentrate on getting better and not to stress out.

Maybe that's why my mouth is sore because I have been worrying about the surgery (neck dissection) Sept 2. I have had lots of encouragement from the people from this site and others I meet and speak to everyday. The surgeon feels confident everything will go smoothly and I have complete faith in him.

now about your port I talked to my doctor this morning about mine because I wanted mine taken out when I had my neck disection. I was told by the surgeon who put it in that he would not do it at the same time as the neck disection because the disection was a pretty intense surgery and felt better doing it later. This is what put fear in me and I am finally getting over it. But anyway my doctor said some people do not remove the ports they live with them.

Mine does not work if I had to stay in the hospital so I want mine out. I also have the option of when I get it removed not to be put to sleep. They would just numb the area and could do it in the office and I would just feel some pulling. Not for me right now so this is on hold.

I also wanted to be asleep when they remove the feeding tube because I already had it replaced once (it got clogged) and it wasn't a good feeling. I'm a big baby when it comes to things like that.

Also my doctor suggested increasing my vitamin C intake to help me heal.

I'm thinking of you and hope everything goes well.
Love
Terry

Thanks Terry,

Your doctor is saying to you very much what I heard from my ENT last time I saw him--he said I should plan on 7-9 months of healing after radiation (tight now I'm just a little over 2 months out). I swear he never told me that BEFORE rad--he said 2-4 months. Oh well. Maybe he's done more research himself since then.

I also called my surgeon's office and found out that I would only be needing a local anesthetic for getting the port removed so I'm going ahead with that. I would think you'd want to keep your port while you are in the hosptial for the neck dissection--if they can use the port, it will save you innumerable needle-pricks! It's true I think you can live with a port for a long while--but it has to be flushed once a month. Still, I see no reason why I'll need one in the near future (knock on wood), so I'm going ahead with the surgery to remove it.

I already had my neck dissection surgery,as you can see from my "signature" field below, I had that first along with a partial glossetomy because it was thought that might be all I'd need (unfortuantely it was not). It really wasn't too bad, even though I know it sounds horrible--I'll send you good wishes on the second of September!

Nelie

I didn't know that I am suppose to get my port flushed once a month!!!! The last time it was used was for chemo the third week of May.

I went through iv's while hospitalized because the port did not work right I think I had to hold my left arm up in the air for it to work right. The tried numerous times to get it to work and would poke and poke but couldn't get it to work.

Will I have problems not having it flushed?
Love
Terry

Nelie, are you pushing yourself by going back to work so soon? Surely they can do without you a little longer! Terry, keep looking forward. You will get beyond the neck dissection surgery. It may not be a piece of cake, but it is doable. [like so many other things we get to face down in this world] Amy

Terry,

I don't know about what problems would happen if you don't get it flushed. Maybe yours is different too. It seems like they definitely should have told you that if you needed it. Or it may be one of those extra precautions which the folks at my medical oncologist's office are so very good at taking--but maybe it isn't strictly necessary. I honestly don't know, but I would call to be sure.

I only had one time when I had to hold my arm up to get the port to work. in general, everyone who needed to use it said it worked like a charm!

Amy, I'm at work today trying to work out the one in-person class I'm teaching (I'm also teaching an online class which won't be a problem and developing some training materials which I can do on a very flexible schedule and that is a half-time load for me. I had enough overlaod teaching hours banked to get released from two courses I normally would have to teach.) My freind and colleague could take it for me if we give another class she's teaching to an adjunct and then I can take on another online calss in exchange.

I really like teaching in the classroom MUCH more than teaching online but it doesn't look like it's the semester for it, given how sore my mouth still is. Thankfully, I have really good work environment and colleagues who really want to help me get well.

Nelie,

Sorry I have taken so long to respond to your question. I had my tonsils removed and had my butt kicked. The ridges and valleys you feel on the roof of your mouth are called ruggae and the largest bump you probably feel right behind your two front teeth is your incisive pappilla. Those ridges probably feel bigger now because the tissue is inflamed. I hope that you are feeling much better by now and this is a nonissue for you. If you are using a gel product, you may want to give Vaseline a try. It will probably stay on the tissue longer than a gel stays in place.

Sorry I took so long to answer,

Barb