[quote] You must be a remakably tough person to take on those activities so close to the end of your treatment. I would recommend slowing it down a little though until your WBC levels start to return to normal. [/quote]Assuming her WBC even did go down...(mine didn't) But Still WOW.

I was referring to plain soda water(no sugar), which I was told AFTER treatment could have prevented thrush, as it can alter pH. My WBC did go down during treatment but I am 6 mos. post TX and assuming they are fine. Actually my docs haven't done a CBC since mid-June, is that unusual? I also came up anemic in June from treatments, but again I am assuming I must be OK.
Yes, I had an easier time through treatment than most people. My doctors cannot explain it, but I feel that any newbies looking for info should see the whole spectrum of reactions to treatment. I know that I would want to hear the good, the bad, and the ugly.

One other thing I though of last night.

Remember the radiation tech's are typically NOT nurses, so they may not be able to answer some of your questions (either legally or otherwise).

I did ask about the functionality of the IMRT machine, and got a full tour. OK, OK, I spent too much time in the physics labs in college.....

I find these posts helpful and am trying to absorb some of this knowledge for my 2nd go round with this stuff.

Great post!!
As Gary pointed out, thrush and other problems are caused by sugar so try and limit sugar intake.

Karenh with your permission I would like to make an addition:
8. Plenty of laughter with those you love.

Best wishes to you all.

Mike

Thank you Karen and everyone...yes...this is certainly a great idea. Its what i need to know..Im not so much worried about the temporary effects (which I will deal with as/if they come) I am fretting more about any permanant effects (eg loss of taste/teeth/permanant facial scarring)
But this thread is a comfort just the same. I dont personally know anyone else who has gone through, or is going through, what Im going through so you guys are great friends to have. Thank you or being so open and honest and I am proud to be a member of this forum and feel lucky to be able to consider you all my new friends. I certainly hope I can offer someone a speck of help at sometime or another.
Im still really scared about the radiotherapy but at least I will have somewhere to come if these horrible things start happening to me.
By the way, can someone tell me what you all mean by "Mouth sores" are they like ulcers? or what? Also what does the mucus do? make you cough? or is it more a "clogging" effect that you have to cough up somehow. Also, is the reason you cant swallow because your throat is swollen...or is it like having a bad case of the flu? Does everyone get some kind of side effect? (well apart from lucky Girl cat!!!) Im sorry to sound like such a pessamist but Im tired already and cant imagine having too much more dumped on me...at the moment I am having some kind of allergic reaction to who knows what? No one can tell me. So I am covered in HUGE itchy whelts that nothing stops...My tongue is still swollen making my speech REALLY annoying even to me (I get tired of people..i know they mean well...saying stuff like "well you are speaking MUCH better this week"...when I dont feel like I am) My wrist skin graft looks like something off the x-files and my chin (where the lymph nodes were taken) is still swollen to different degrees each day ...as is my tongue. So you see, Im just annoyed as Im used to feeing 'normal'...and now i dont anymore...and cant imagine feeling normal again...so will i? does anyone who goes through this ever feel like themselves again?

Anyway thanks so much for giving me, and other scaredy cats like me, somewhere to go.
I wish you all the very best and you are ALL in my prayers tonight. Lots of love from the bottom of my heart Lyn xxx

Good morning Lyn. I have the mucus trouble like most in here do. The worst part of it occurs to me during the night. It feels like someone dumped a load of concrete in your throat , but with enough coughing and gagging, you can get it into your mouth.With the tongue problem, it is like spitting out glue only without the glue taste. As for the throat, it feels like there is a plate of some sort where they took the nodes. Dr told me to massage that area and it will help. So far,, naw. LOL I can't even feel a pulse in that area unless that means my throat matches my brain,, halfway dead. LOL It's just something you get used to. By the way. I liked that one log fire that doesn;t burn well without more logs. You are funny and I like that... Ole Jim

All I drink now is seltzer water, sometimes with concentrated (unsweetened)cranberry juice and it didn't make a difference. Still a better choice the carbonated beverages with sugar.

Mouth sores are ulcers typically, they could also be radiation burns and even thrush. They can be caused by chemotherapy alone in some instances.

The thick stringly mucous is more of a discharge from damaged salivary glands. In my case after a mouth or so post Tx it just stopped. But it took a good 18 months (with IMRT) to regain about 80-90% salivary function.

I found that sleeping elevated helped a bit and having a bottle of water constantly by my side was a must. It will pass, but it is a miserable time. I had a lot of sleepless nights during that phase.

Hi Everyone! and Happy New Radio/Chemo/Cancer Free Year to you all!
Well, Yesterday I did it...after much encouragement from my brothers and sisters in arms ...er...tongues (hehe) on here, I felt confident enough to give the radiotherapy my best shot. Today I had my second day (I can hear the loud "HA thats NOTHING!!'s" from those of you who have been through so much more than me and are complaining far less and who are not nearly afraid as I am...you are my heroes!)
I have a couple of questions some of you may be able to help me with...my tongue still feels like i have a golf ball in my mouth, and my neck (where I had the disection and 34 nodes removed)is still really tight and hard, as is my skin graft (on my wrist)
ok I had my op on nov 19th (07) and got the old "how long is a piece of string" answer when asking how long this would all be swollen for? Can anyone tell me...is it likely to go down anymore?(probably not during radio I realise) but it is REALLY annoying as i have to "get it going"in the morning and I sound like Marlon Brando for a good two hours!(maybe thats my new career..Gangster! wheeee!) I am doing all my tongue stretching and poking excersises etc but the golf ball remains! OK next question...has anyone had their flap "trimmed down" and if so, what is this like? Is it a hospital stay, a dental thing...do they laser it...slice it like ham (eww eek), take it off a bit at a time, or do they just say "well you are lucky to be alive" too bad(which ok..is true) One thing my drs all seem to have forgotten..I WAS A SINGER... it is rare for an Aussie to have remained fully employed well into my 45th year. Im not after fame and fortune...Im just a regular musician and i have no idea if i will ever be one again. In fact when the cancer was diagnosed I was forced to cancel $7000 worth of booked gigs over Xmas and the New year (ouch) Luckily my husband has an army pension or we would both be on the street.. I believe I will sing again as I can still pitch (I also play piano ...when i was well.. my husband Kim, who plays guitar, was able to join me) We worked on Ferries, Cruise Ships and private parties etc until only ONE surgeon calmly and coldy said "you're singing career is over" Personally...I dont think he had the right to make that judgement. Im not Christina aguelirra (sp?) we just want to be able to make a few extra bucks and have fun...a slight lisp wont even be noticed at the level we work...BUT...that gets back to me question...is this as good as it gets or can they do more? I am open. I am told they got all of my cancer (Scc) during the surgery and are doing radio 'just in case' there is any they cant see that is still lurking...so can anyone help me?...i have no idea of the future of my tongue...or myself. What this rather cold professor didnt seem to get was...this is what I have been doing for the last 25 YEARS...this is who I was...his sentence took less than 10 seconds..I think I am still in shock. any answers or even guesses would be appreciated. thanks everyone. Sorry to be sounding so down at the start of the year when i know i should be more hopeful. i think im just tired of it all and tired of not knowing what tomorrow 'might' (not will) bring...not even a vague idea. Lyn

Lyn


Non of us ( in any situation ) knows what the future holds, However for people that have been diag with cancer...It def is a scary future with the unknowns.

And if you truley believe you can sing again ...then work towards it....right now you are still do new out of surgery and now in the other treatments. It may take some time..and hard work ..but now one ever knows, I mean LOOK people have been told they would never walk again and run marathons. Alot has to do with will power and finding new ways about things , atleast that is what I believe.

It is so hard, these Drs dont know how much they take from us with their words, their words that take 10-30 sec to say , but can ruin a life. I know some of it needs to be said, 0ther times they should think before they speak or find other ways to say things.

So my best NON expert or medical adivce is DON'T GIVE UP! You may surprise yourself. and I for one ...would love to hear you sing when that day comes !! And If you truley believe you can...then I don't see why you can't !!


Shar