Hi, my name is Greg. I am from Cape Town SA. On the 16th February 2010 I underwent a 16 hour operation.A radical bilateral neck dissection, A full glossectomy and resection of the mandible from angle to angle. In english my tongue was removed and lower jaw was reconstructed with the fibula.
This is my first time ever discussing cancer, besides chatting to my wife.Any answers as to how people cope or deal with this type of cancer would help. I had never heard of this type of cancer and now I have it. Some days just get a bit much and it is a lot to take in.

Look forward to hearing from anyone......

Hi Greg,

Sorry you have to join our exclusive group but am glad you found us. I didn't have the same type oral cancer as you so I can't be of much help as far as the glossectomy goes, but no matter what the diagnosis, we all have learned to develop coping mechanisms, some with more success than others. Reading through the threads is both hopeful and depressing: some of our best loved members have passed away recently yet some of the success story people check in occasionally to see what's goin' on and give their advice. That's part of the problem! Those that make it through the surgery, treatment, etc., go on to embrace their new lives after cancer and don't check in as often as those who are still having problems or who are new to this. Hey, Survivors who are also lurkers! Post occasionally to boost our newcomers!

Not talking about it is probably the worst coping mechanism; fortunately we now have message boards where we can express our concerns and fears anonymously and where well meaning people and, if we're lucky, a devoted doctor (Dr. Joshi, the moderator on this board) give excellent advice.

One of my best oral cancer internet buddies is Sharifah who has her own blog, The Toungeless Talk, who invites all to visit it. She is available on this forum as well.

Sharifah's Blog

If you haven't figured out how to use it yet, type glossectomy in the Find field to get a listing of related threads. This is what I found here tonight:

Glossectomy threads

Good luck, buddy. Welcome.

Mimi

Hi Grogg, I'm guilty of lurking. Dont get on here as often as I should.

hi gregg ,hag and mimi i have to hold my hand up to being a lurker too. mostly cause i dont know what to say i did not have surgery but i had chemo and rad, igot the 6 month all clear yesterday, was over the moon , then today i get throat infection that brought me down to earth very quick but thats how it goes up and down i have had much more ups than downs, since i started recovery, and have so much to be thankfull for.

Oh, Jimmy, I know where you're coming from!

Two days ago I had a fraction of a tortilla chip scratch my throat on its way down and the subsequent coughing and discomfort convinced me that I was doomed, that the cancer had metastasized and probably gone to my brain....and liver and whatever else was in between.

Next morning and everything is OK. We no longer ask, "Should I worry about this?" We go to a doc/dentist immediately - no waiting around!

Greg: You gotta' talk about it, gotta' research it, gotta' ask questions. It's the way to cope and maintain sanity.

Mimi

It does get easier with time guys so hang in there. Hagg.

Hi Greg

I've taken note of Mimi's comment about survivors posting a bit more often, so thought it about time I gave a bit more input again.

I had surgery for tongue cancer about eighteen months ago (hemi glossectomy, tongue reconstruction, neck dissection, radiotherapy - the works in other words!) and am now living a reasonably normal life. I remember how devastating I found it at the time and didn't think I'd ever recover from it but now I've managed to return to my teaching job full time and eating (although somewhat more limited) is not such a problem.

Although its not such a positive outcome for some people, there is always hope after having cancer. I wish you all the best and hope you find the strength to deal with it.

Wendy

mimi, you must be able to read minds, i was with a doc yesterday evening and he gave me tablets to take the fever down also to ease my throat. but i had one of the worst nights in a long time, im not afraid of cancer at the moment but i do fear anything happening to my throat, so hard to eat or drink to day just like last year when i had to learn to swallow all over again. but glad to say im just after drinking a cup of soup and its not as painful as it was earlier. i should have said i got the 18 month all clear, hagg if you say it gets easier then i believe.for you have been around longer than anyone, i also like your links, as they are short and to the point, wendy you are so right there is always hope ,but there is also so many negative people out there who seem to take pleasure in telling all the grim tales. in order to keep positive i need to keep putting positive thoughts in my head, now i read stories on this site( mostly happy ones).at the start of recovery i went through counciling and i would recomend it to anyone , it helped me to start living again, this has to be the longest link i have ever wrote so i hope i havent put anyone to sleep. jimmy

Hi Greg

Congrats on making it this far, and welcome to our little club. We don't take just anybody!

I'm just over 5 years post-op (left side hemiglossectomy, removal of adjacent mouth floor, modified neck dissection and free flap resection) from stage 2 N0M0 squamous cell carcinoma. Offhand, I can't think of anyone here who's had surgery like yours, but there must be someone. Did your docs build you a new tongue?

I was surprised by how calmly and matter-of-factly (is that correct?) I accepted the situation. I didn't cry very much, and I went to all but one of my pre-op appointments by myself. It was like that old show Quantum Leap and someone took over because I couldn't handle it. Honestly, you never know what you CAN do until you know what you HAVE TO do.

I've been pretty open about my cancer situation, and this has led to the occasional interesting question--even now. My dad and I have been battling the rampaging crud for the past few weeks. On 16 June, I went to the local urgent care clinic and the practitioner said "what's the story with your tongue?" She'd never seen anything like Flappy before and was really interested in the tale.

Please know that you and your wife are not alone in this.

Julia

Dear Greg,

Welcome to our little club. I confess of having been a lurker for the last 3 months or so. I have undergone a partial glossectomy and neck dissection 10 months ago. The invasive tumor was removed and no further treatment was considered necessary. With family and friends´help I could adapt to the situation, speak with only a very slight blurr, and undertake my career (I am a University professor at University of Buenos Aires).
There have been some scary moments (the apparition of suspicious white spots which have been analyzed and declared not guilty). Also, when your tongue is intervened, the whole mouth changes: some back teeth now hurt my tongue and had to be smoothed out.
My doctor has told me that 80% of the relapses occur in the first 12 months, so I am eagerly looking forward to September.
My lifestyle has changed, though: I try to work a little less, I have undertaken painting, and I see family and friends way more often that I did before my tongue cancer. I am grateful to life.
My best wishes. I´m here for you

Shoshana

still early days for me still learning to accept the changes to be made got lots love and support from friends and family would like to speak to others with similar problems

Hi Neil, it really screwed with me mentally for a while but since I found my cancer ass kicking mentality I've never been happier.
I do a lot more than I ever used to and I appreciate everything I have. Even though a recurrence is occaisionally in the back of my mind I still eat what I want and drink too much.
It did teach me that lifes too short so I grab it by the balls while I still can. I work in a medical unit where we see the cruelist of natures diseases and that reinforces my feelings that you cant guarantee old age.
I'm sure that you will reach a more 'comfortable' state with your situation given time but if you want to ask me anything then please feel free.
I very rarely write this much so I have to go lie down in a darkened room now. My typing finger hurts

Hi Neil

Welcome to our rather exclusive little club!

Most, if not all, of us have been where you are. Friends and family can be helpful and they mean well, but there's just nothing like being able to talk to someone who's actually ridden the (bleep) carnival ride that is cancer.

If you don't mind me asking, what type and location did you have? Each of us has had different experiences (some good, some bad), different treatments, but willingness to share is something each of us has in abundance.

Hope we can help.

Julia