Oh Brenda! Im so sorry to hear your news! BOOO! But i believe its true that when heres no bone chopping/sawing involved it wont hurt as much.
By the way, what is it with these docs and and the bloody Power Trips they seem to hold over us and our relief???...our ONLY relief for most of us...Drugs!
My God, WE HAVE CANCER FOR HEAVENS SAKE...AND IT HURTS LIKE NOTHING ON EARTH!! I wish I could find at least one Dr who had been through it, then maybe they'd understand.
I cant get enough pain relief and spend most days and nights in tears after only two weeks of Radiation. I am thinking seriously of stopping...could death be worse? Im so sorry for thinking like this but I have already had more than enough and I havent even started, have I?!
As far as my pain goes, I believe this is because for the past 20 years i have been on fairly heavy duty drugs combatting debilitating, herediatary, migraine. I was put into hospital and the result was, I got "cured"...no different to a diabetic is how I look at my treatment. I take tablets everyday to prevent attacks that disable me and prevent mefrom doing what I do.
I have also been on anti anxiety drugs too for the same amount of time. I dont LOOK like a junkie,nor do I act like one! So, as you can imagine giving me an shot of morphine that would put a horse to sleep is like me taking asprin for Cancer pain! To make matters worse my beloved and trusted Family Dr was 'old school' (and he DID cure my thrice-weekly-vomit-girl-from-Hell- migraines!!) But he has now just retired and all the young hot shots cant (wont) believe his treatment worked and are starting me all over again of "have you tried this..how about this?..this?" ho hum! I was on long term methodone...starting a long time ago on a high dose (12 tabs a day) and then reducing the dose myself to 2 tabs a day aby 10% a week! I was so happy!...Then I got diagnosed with Tongue Cancer and I was told not to lower my dose any more. Now...I wish they would think LOGICALLY about this for a second. iM 46 YEARS OLD. Ive done the rock scene, the Bars, the 5-stars and Casinos..In fact, I have been a (never unemployed) professional Musician all of my working career and have managed not only to stay fully employed but have been paid to play and sing all over the world. During this time I have also managed to have tried nothig more than the ole puff of grass! (which tasted like soap and did nothing for me haha)! I havent seen herion, been offered exctasy, not Ice, GBH (or whatever it is) or speed... nor any other of the drugs we all read about. I surely could have got hold of them if I wanted to..BUT I DIDNT WANT TO BE A JUNKIE, I WANTED TO ME A MUSO!! Not only that I DONT EVEN DRINK ALCOHOL...AT ALL! I DONT LIKE IT!
do these geniuses think I WISH to turn into a junkie at the age of 46 WHILE im not working, extremely sick and really in dire need of giving myself and my Husband, more emotinal and physical problems..not just for me but for my family!!!
So, Brenda, when you ask for anti anxiety drugs again...DEMAND THEM! After all as with a Musicians Agent... WE PAY THEM NOT THE OTHER WAY ROUND! GRRR. And you can tell you Doc that the serapax is the ONLY drug that seems to reduce the swelling in my tongue even just enough to eat a bit..it makes sense...the tongue is a muscle...and what do anti anxiety dryugs do? RELAX MUSCLES! Yeesh! Im not usually as grumpy as a sound tonite, Im just in a lot of pain right now. Maybe if i 'accidentally' aquire some kind of medical trauma that they can SEE rather than having to trust my word on my pain level..."So Lyn, whats your pain level out of ten today?" "Its 24...got any ideas?"

By the way my Prayers are with you Brenda, and all and thank you for giving me a place to vent and whine...you are great friends and i am honoured to be allowed to be here to ask your advice and talk to you all. I hope you all get to meet me when (and if) I dont have Cancer..Im really quite a nice person...im even fun to be around! haha Lots of Peace, Prayers and Love from Down Under! Lyn xxx

Wow, - Brenda needs someone like you where she's at to call her doctors and tell them how it REALLY is! Vent all you like, Lyn - maybe it will get around to the pain management people and make an impression. My son sure had a tough time with Rad, but from all I've heard, here there are people who have a relatively easy time of it. I sure hope you are one of those people!

Thanks Lynn--and am SO sorry you're having such a rough time--try and console yourself with the fact that you're doing what they call on here 'baby steps' and just try and get through each day as best you can--and you HAVE been given 'a future'---it will arrive, so don't even dream of stopping the rad at this stage--just turn into a total invalid, don't even attempt to push yourself and 'be brave', just grit your teeth and get thro it.
And keep on and on venting whenever you feel the need--keep looking at Anne Marie's gorgeous hanging kitty!
I guess the reason we're so submissive in the UK is that we have to beg for just about everything on the National Health Service--although we pay our contributions out of every month's salary and maybe never see a doc for years, when we do, it's considered free!
So we have to wait along with everyone else and just do as we're told!
The irony is that my doc actually HAS had breast cancer, but presumably she got through it differently!

Brenda

Lyn,

I hope you can get a handle on the pain but remember the pain only lasts about 7 weeks. I had to take myself off all pain meds towards the end because they all seemed to cause nausea or other side effects with me that were worse to me than the pain without them. I actually did better with the pain and without the nausea so it is doable if you can convince yourself to be mentally prepared for it. What works for some doesn't always work for others but I thought I would just mention my saga hoping it may help if all else fails.

trying again to post.. I wish I could mail Lyn and Brenda some pain meds, but with my luck we would all go to jail for trafficing in drugs. I take them just when the pain says, " hey Jim, it's that time" and if you don't take them I am going to make you miserable. I salute and say yes sir. LOL Lyn as for your venting, you are even humorous venting. I enjoy reading your posts. And Brenda,, I will be your protector at anytime,, me and that tiger .When he growls i'll punch.

Hi all and thanks Jim, I hope I helped Bren with her mean member of "The Keepers of the DRUGS" (ooooH) I realised yesterday that even though I have rather severe versions of ALL of the side effects that Radio causes eg 40698 painful scaly ulcers, agonising swollen and painful mouth and tongue, dry mouth and tongue, dry cracking skin and lips, problems with eating and drinking, problems with mucus and thick saliva, its getting too painful to clean my teeth even with a babies toothbrush, and/or even use mouthwash, TOPPED OFF WITH a chesty phlegmy cough,(Man, I NEVER win jackpots like this EVER!!!) PLUS im only TWO weeks into my six weeks of treatment so far, YET I have only seen my 'real' oncologist twice (rather the one I met on the scary first day who said "Hi Im Micheal and Im your Oncologist"...Maybe hes just hired cause hes got a nice face and makes people feel relaxed and hes not really even a Dr at all hahah....no, he must be as he wrote me a script for something...phew). The rest of the time I have copped young interns...or REALLY young docs...young enough that I could have easily been their Mummys ..and I should smack their bottoms for having no respect for their elders!..er...and then I'd get put in jail and fined for being so unpolitically correct and being the cause of YEARS of their therapy due to child abuse from that one smacked bottom! haha(its stupid these days) Can you imagine a confrontation between me and Brendas Doc? (ouch it hurts to laugh).. hahaha "WHACK..."NOW mister! Is that how I brought you up? NOW! Stop Brendas pain and SHARE your Drugs with her right this minute!"..."NO! On second thoughts, hand em over here, sonny, they are hereby confiscated!!" hahaha.
How many times have I heard "Now, these tablets [asprins with 30mg of codiene in them] are REALLY strong so i hope you arent driving are you? (said in a patronising teachers voice). Then...in a few days, I crawl in on all fours, whimpering that THE MEDS ARENT WORKING..I AM IN AGONY, CANT EAT, SLEEP, TALK AND I AM SERIOUSLY CONSIDERING NOT COMING HERE AGAIN" Her reply might be..."well, perhaps we will try an antidepressant as you seem a bit angry" GRRRRRRR! DAMN RIGHT!
While I am on the ol'e drugs topic, can anyone tell me when the best painkillers are to take for this agonising mouth pain?(narcotics I mean) The last ones i was given were oxycontin 80 mg slow release...they were supposed to work over 10 hours or so but mine only worked for about one hour (so, of course I ran out quick making the dr think i was probably selling them...after all, isnt that what musos do? grrr). Now i have been given mscontin 200 mg (two a day) and they work for about 5 hours. Do I have a really low pain threshold or what? Will they run out of painkillers to give me? Im really scared.
Anyway I hope if not all, then at least a few of you, are feeling better than me today. I promise i wont whine on here everyday, Im just having a really sooky weekend due to the pain im in. Lots of love from D.U (down under) Lyn xxx

Lyn--as long as you can keep that great sense of humour, you won't sink!!!
Hope you can get some answers to the drugs question.
I shall update tomorrow when I've rung the surgery--always supposing I'm not already high as a kite or dopey from drugs!
Bren

I take percocet and a hyrocodone liquid, called lortab, and xanax to ease my mind. They do work for a couple of hours but then right back to the pain. I had a prescription for oxycontin but trashed it for some unknow reason without trying it. I have constant pain in the right side of my throat, neck, right jaw, right ear, eye and head. Maybe it's time we wrote our own scripts and make sure we all get exactly what we need. It would probaly be like giving a young boy a pair of shoes that had never worn them. We would have to show him how to put them on. LOL.. I would settle for something that would stop the pain and burning in my mouth for at least an hour. It feels like there's a centipede in there walking with spikes on all his lil feet. Either a pain killer for him or someone remove his damn shoes!!!! LOL Have a great day all.

Lyn, thanks for making me laugh again. LOL i knew this post had to make my day much better. I love to laugh and you sure can make me. You have the humor we all need.. Have a good day..

Lyn
I can see we will have to get a collection going to fly you out to ever has most need of your services:-)
Brenda am glad you are contacting the surgery tomorrow, I think at least for this coming week you need to move away from OTC pain relief to some prescription only stuff,
Oh and tell them you want some anti-climbing the wall pills, strong ones...
Sunshine.. love and hugs
Helen