Hello, My name is Vicki Lynn, I am 47 years young, 3rd time cancer survivor. The first time was in 1989 with tongue cancer. I had almost half of my tongue removed,,but could still speak and eat,,no radiation or chemo. 10 years to the very day,,it came back,,this time of the floor of my mouth,,this time also--radiation. This time it was both the floor of my mouth and had moved into the jaw bone..I just had surgery Feb.2004..They removed my jaw bone, used a bone from my left leg to re-build it..They also took a skin graph to make a flap in the mouth..Even though it has been 89 days,,and I am counting,,I am still so swollen..I have a trech,, which I do not get along with at all..I have little movement in my right arm due to the surgery..I also have a feeding tube...I don't know what to think this time around...So much to deal with,,,I am dealing tho...One minute at a time...If u have any help with any one of the items I have listed, the input would be greatly appreciated...Some of this is new to me...I have had radiation twice so the healing is going to take some time,,,but how long,,,no one knows,,,they had to remove more of the tongue,,so i don't know if or when I will ever be able to speak or eat again....The doc's say that I will tho it will be a long process,since I have so little tongue left...I guess time will tell..I have read almost all of the stories on here and have learned a great deal already...Thank you for listening to me,,,I believe that I have wore my poor family out,,,Just kiding..Thank you again,,,Vicki Lynn

Hi,
I've had more or less similar surgery to yourself, but mine has been compacted over the last 21 months, slight difference is they took bone out of my fore-arm.

I've a P.E.G fitted as the second op. took almost all that was left over from my 1st op. Now I can only eat extremely soft foods.

I must admit my arms where pretty much back to normal about a month after both ops.

I'll try & give you any advice from experiences if they'll be any help.

Oh please do,,,the part of the tongue that is left is so small,however the speech and swallow experts say they have seen people talk and eat with even less that what i have left...i don't see how,,, i cant do any of that tho until the swelling goes down,,,it is taking so long because of the radiation that i have had...any input would be very very helpful,,,and thank you so much for replying....

Hi Vicky, I read your posting will dread.
I am terrified of the Cancer comming back but I know it will, I was 42 when I had the operation.
You can read my story DB'S and if anything I can help with I will.
I have only part of my tongue left although had Mouth & Neck Cancer they had to remove part of it.I blame the radoitherapy for all my on going problems.
I too have problem with my arms, I cannot lift them up and my right arm and shoulder always in pain.

Anything I can help with please do not hesitate to contact however you wish.


cheer and al the best

Paul

The best way to some up the size of my tongue, imagine that your tongue is five fingers wide, then wot I have left now is one finger!

My S.A.L.T. (speech and language therapist) has helped a great deal, but being honest I can't think that my speech will ever get beyond wot it is now. Clusters and multiple consonants you can just forget! Like wise any letter that need's my tongue to hit the back of my front teeth, FORGET IT!!!! ( c's,l's t's )

As for swallowing solid's,half my bottom teeth have been removed so I can't chew or compress any food with my tongue so I'm affraid I'm on a life with P.E.G.gy.

My arms are generally O.K, I have more problems with my neck, if I look up at anything or try to get up from lying down I need to lift it with my hands to give it a boost!

Feel free to ask any of us Vicky anything there's someone on this site that's been through it!

Alan, Do yuo foind it takes you a few seconds to get started talking
By this time the conversation has moved on and I just keep quiet now :banghead:
As for a conversation where people are talking in front or behind me no chance
I cannot think of the words.
Also jhave to rephrase what I say to get the words out, My GP says """she can tel by my eyes I am thinking how to say things"""
do yuo have same problems?

Paul

Paul, It's fair to say that I learned to talk differently!

It doesn't take a while to start talking, but I do talk diferently. It also depends a lot on who I'm talking to! Shannon is the best person to talk to but that's cheating isn't it! Bus drivers are terrible """ Return to Middlesbrough""" becomes """Repurn to Mibblesbogh""", and """where's that then?""" etc,etc.

Also I talk round words I can't say or watching football I shout abuse at No. 9 or No. 7!! Or you try telling someone Juan Pablo Montaya is a muppet!

Some people will listen others just don't want to, if they """sorry""" or """say that again""" worse still """talk properly""" then that's it I"""lose the heed""" as my son says, you can forget all conversation with me!

THANK YOU ALAN AND PAUL,,YOU DIDN'T TELL ME ANYTHING THAT I ALREADY DIDN'T THINK I KNEW,,LOL,,,NOW I KNOW IT,,I AM SO ANGRY AT THE BIG """C""" FOR VISITING ME AGAIN...YOU WOULD THINK IF YOU BEAT IT ONCE,,YOU WIN,,WELL THAT'S NOT THE WAY IT IS,,IS IT..NOT TO TALK AGAIN IS GOING TO BE VERY VERY DIFFICULT FOR ME,,AS IT WOULD ANYONE,,THAT IS THE THING TI DREAD THE MOST..A FEEDING TUBE FOR LIFE,,FIRST OF ALL I THANK GOD THAT I HAVE A LIFE,,I WAS ONLY GIVEN 3 MONTHS WITHOUT THE SURGERY,,SO I AM JUST PLAIN PROUD TO BE HERE,,BUT I AM SELFISH,I WANT VICKI LYNN BACK,,AND KNOWING THAT SHE IS FOREVER GONE,IS ALMOST MORE THAN I CAN BARE,,BUT I AM STAYING HEAD STRONG AND TRYING MY BEST TO STAY BUSY. I HAVE NEVER BEEN A SEAMSTRESS HOWEVER I AM MAKING A QUILT...ME..I HAD TO RETIRE WHICH ABOUT KILLED ME RIGHT THERE,,I HAVE ALWAYS WORKED,, NOW WHAT DO I DO WITH MYSELF,,WELL I QUILT I GUESS,,THE THEIR IS THE MONEY FACTOR,,WOW,,WHAT A JOKE THIS ALL IS,,I CANNOT WORK SO LET ME SEE,,HUMM I STARVE...DONT LIKE THAT PICTURE EITHER..OH I GET SOCIAL SECURITY AND MY UNION BENEFITS,,,JUST WHO THOUGHT UP ALL THIS THAT A SINGLE PERSON COULD LIVE OFF OF THIS AMOUNT...WASNT ME...I THANK YOU BOTH FOR ALL YOUR WORDS OF TRUTH, HONESTY AND KINDNESS..IT IS SO NICE TO TALK TO SOMEONE WHO KNOWS, REALLY KNOWS,,THANKS VICKI LYNN

We all want ourselves back but that'll never happen!

Social Security benefits! Don't make me laugh! I've spent the last 21 months fighting for every penny I get and then I'm still trying to get everything I'm entitled too!

Don't think I could sit still long enough to make quilts! As I tell my counsellor """I'm fed-up of walking up down my cage!"""

Hi to Vicki Lynn. I think I can understand your anger. God, 10 years down track and the """C""" comes back. That's the sort of thing we all fear!

My experience can't compare with either Paul or Alan's.

All that happened to me was that my tongue was removed - completely. Had the usual radical neck dissection followeds by intensive radiotherapy.

Like Alan I'm on permanent PEG feed (can't take any solid food at all).

However, to everybody's surprise I can speak, OK not as well as before it all happened. But I can, usually, make myself understood - sometimes even on the telephone.

As both Alan and Paul say, the main problem is other people. Some just won't try to understand.

As Alan says things will never ever go back to how they were. I think for you in the USA, unless you're rich, things are even worse than for us here.

Remember though Vicki there's always people here ready to listen to your hopes and fears, and where possible off er help and support.

Please keep in touch

God bless

WELL THANK YOU PIKEMAN. I WAS JUST ABOUT TO GET LIFE INSURANCE WAS JUST WAITING FOR MY BIRTHDAY, BY THE WAY,SO I COULD SIGN THE PAPERS,,I SIGNED THEM GOT IN THE CAR WENT TO THE DENTIST BEFORE GOING TO MY INSURANCE COMPANY,AND :bomb: I HAD IT AGAIN...I DIDN'T SEE IT THIS TIME THO :thinking: IT WAS SILENT, SNEAKY BUT IT WAS THERE. I HAD SURGERY AND RADIATION..6 WEEKS OF RADAITION EVERY DAY :yikes: ..IT TORE ME UP,,NOTHING LIKE NOW BUT I HAD NO IDEA THAT THIS WASN'T THE END,, SILLY ME I THOUGHT THERE WAS ONE,, WELL ONE TO CANCER,,THEN THE THIRD TIME. I HAD RADIATION IMPLANTS,,10 DAYS WORTH, WHICH IS THE SAME AS THE 6 WEEKS WORTH BUT IT WAS GIVEN IN TEN DAYS :bomb: I WAS LITTERALLY ON FIRE, THAT WAS, THEN, THE MOST HORRIBLEST THING I HAD EVEN BEEN THROUGH IN MY LIFE...AWFUL, WOULD NOT DO IT AGAIN,,NO WAY,,,TO ONLY FIND OUT THAT ALL THAT DID WAS ANGER THE CANCER :yikes: SO ALL I HAD LEFT TO DO WAS THE SURGERY THAT I HAVE BEEN SO AGAINST SINCE DAY ONE...I AM PROBABLY THE MOST VAIN WOMAN EVER...I JUST DID NOT WANT THEM TO TEAR UP MY FACE AND LEAVE ME SCARRED FOR LIFE,,,BUT THEN AGAIN I WAN'T TO LIVE,,WHEN THEY TOLD ME THAT IT HAD NOW MOVED INTO MY JAW BONE,,,AND THAT I HAD LITTLE TO NO TIME LEFT,,,IT WAS AMAZING HOW FAST THE DECISSION TO HAVE THE SURGERY WAS IT WAS LIKE LIGHTING FAST...I HAD NO OTHER OPTIONS,,THEY HAD ALL RAN OUT...I DON'T MEAN TO NOT BE THANKFUL FOR I AM TO THE DOCTORS WHO HELPED ME,,,BUT THE PAIN OF IT WAS ALMOST UNBAREABLE..I ABSOLUTLY HATE THE TRACHE,,,WE DO NOT GET ALONG AT ALL!!!THE FEEDING IS A LOT TO BE DESIRED, BUT I WILL ADJUST,,I WILL HAVE TOO,,I HAVE HAD ONE BEFORE BUT IT CAME OUT,,DONT KNOW THAT THIS ONE EVER WILL,,,I LOOK LIKE A CHIPMUNK WITH A MOUTHFUL OF NUTS,, I CAN SAY THIS FOR IT IS TRUE..I HAVE A HOST OF FRIENDS AND A TON OF FAMILY THAT ARE PRAYING FOR ME...I LOVE THEM DEARLY,,BUT THEY DONT KNOW WHAT TO DO OR WHAT TO SAY..GOD BLESS THEM ALL..GOD BLESS US ALL,,,ALWAYS

Vciky, Your last posting for me was so moving, After all you got through and still have time to think of others and how they feel!
well thats one hell of a woman to me
you will make it.
I want my old self back specially my old face and speech but its never going to happen and it kills me inside.
I too am waiting for the dreaded day they take out my teeeth and the 50/50 chance of infrection infact it couild be higher.
It will come soon as my teeth keep breaking off and in constant pain.
I am fed up of professionals saying """make the best of what you have""" WHAT am I left with to work on I ask myself.
Anyway Vicky god bless

ps Pikeman you have been through as much as we have and you are a good support to me and others.

Paul

WELL I THANK YOU PAUL,,FOR ALL YOUR KIND WORDS,,THE SAYING I THINK I DISLIKE THIS MOST IS """YOU ARE DOING GREAT""" AS TO WHAT..I FEEL LIKE ALL I AM IS A STUDY TO SEE WHAT THEY CAN AND CANNOT DO..YES I AM STILL ALIVE AND DO SO THANK GOD FOR THIS..I HELD OFF AS LONG AS I COULD FOR THE SURGERY FOR I WANTED QUAILITY NOT QUANTITY,,WELL THEN IT GOT TO I JUST PLAIN WANT TO LIVE..IT IS AMAZING TO ME THO WHAT WE CAN GO THRU AND STILL SMILE.THIS HAS TAKEN SO MUCH FROM ME,,BUT AT THE SAME TIME,,IT HAS GIVEN ME SO MUCH..DON'T GET ME WRONG I LOTHE THE 'C' WORD,,BUT FOR SOME REASON,,IT LOVES ME..IT IS JUST THAT I HAVE SO MUCH TO DO,,THAT I HAVEN'T DONE YET,SO MUCH TO GIVE,SO MUCH TO LOVE, LIVE, ENJOY,SEE,WATCH, I COULD GO ON AND ON,,I AM NOT READY FOR DEATH..BUT THEN WHO IS..I SEE AND READ ABOUT THESE PEOPLE WHO DRINK, DO DRUGS,,KILL,,AND I CANNOT HELP BUT TO GET ANGRY FOR THEY ARE THROWING THEIR LIVES AWAY,,AND I AM TRYING TO LIVE MINE..WHERE IS THE JUSTICE IN ALL THIS..HOWEVER I PRAY FOR THEM, I AM WITH U THO,,I WANT MY VOICE BACK,,I WANT ME BACK,,BUT I ALSO WANTED TO IN THE LOTTO,,WE JUST SOMETIMES DON'T GET WHAT WE ASK FOR...HUMOR THERE...PAUL WE MUST STAY STRONG,AT THIS POINT WHAT ELSE CAN WE DO,,ALL OF US MUST STAY STRONG,,WE MAY NOT WIN,,BUT IT SURE IS GOING TO KNOW IT WAS IN A FIGHT WITH ME,,I WILL NOT GIVE IN UNTIL MY LAST BREATH...THIS DOES MEAN THAT I WILL NOT CRY OR THAT MY PERSONAL PITY PARTIES WILL STOP,,HAHA..THE BUCKETS I HAVE FOR ALL MY TEARS WILL NOY BE THROWN OUT,,I JUST WILL NOT GIVE UP OR GIVE IN.THIS HAS BEEN OH HECK OF A RODEO FOR ME THO..I HAVE MET SOME BEAUTIFUL PEOPLE IN MY WALK OF LIFE,,THEY HAVE FOREVER TOUCHED ME AS I HAVE THEM.I HAVE LOVED AND BEEN LOVED,,IT IS TRUELY AWSUME THIS RIDE I HAVE HAD,,THE ONLY THING I WOULD CHANGE IS THIS ILLNESS,IN A HEARTBEAT,,,I AM NOT ALONE WHEN I SAY THAT EITHER...WELL PAUL AND ALL KEEP IN TOUCH,,WE NEED EACH OTHER,,PROBABLY MORE THAN WE REALIZE,,ALWAYS VICKI LYNN

Hi Vicky and morning, Well another nice and welcome posting from you mate.
It is nice to come on RDOC and be able to talk to people with the same problems and as the site is based in Bradford it interested me as I was born there although came to London at 18yo.
Will you email me and tell me about where you live.
I lived in NY for sometime but did not see much of the US and it would be interesting to know what it is like where you live.
I have a friend in New Jersey but she is moving to Ohio.
As you are so well versed with the Medical system where you live would like to know how it works and is every State the same or does it vary.
It also seems here depends on where you live to what and when you recieve treatment and have Radiotherapy.
MY Consultants and staff are excellent I like going there ( yes like) as it is behind Oxford St(if you know London its the biggest shopping Street) so an excuse to go shoping a thing I never used to do but now have so much time .
The weather here is getting better but have a garden but does not get the sun but I live opposite the Regents Canal so go and sit down there for awhile it is realy nice and peaceful.

Paul

DID YOU GET MY EMAIL???WAS JUST WONDERING HAVENT HEARD BACK FROM YOU. I PRAY THERE IS NOTHING WRONG..I DONT KNOW IF I DID IT RIGHT OR NOT THO,,THIS IS A BIT CONFUSING FOR ME,,,LIKE HOW DO I GET A PICTURE OF MYSELF ON HERE,,HOW DO I TRY TO TELL MY STORY, LIKE YOU HAVE,,,AND SO BEAUTIFULLY I MIGHT ADD...A WONDERFUL JOB,,I HAVE SO MUCH TO SAY, BEING WITHOUT A VOICE IT IS AMAZING WHAT I HAVE COME UP WITH,,,I DONT KNOW IF THAT IS A GOOD THING OR NOT,,HA,HA, I AM A SOUTHERN COUNTRY GIRL WHO USED TO TALK ALL THE TIME,,,SO ANY HELP WITH THIS,,I WOULD LOVE IT,,IT WOULD GIVE ME SOMETHING TO DO AND PERHAPS HELP SOMEONE IN THE PROCESS OF DOING SO,,,THANKS PAUL FRO ALL YOUR WRITINGS,,,THANK THIS SITE,,I KNOW IT ISN'T PROBABLY FOR ME SINCE I AM FROM THE UNITED STATES,, BUT CANCER DOESNT CARE,,,,ALWAYS VICKI LYNN