Hi all. My name is Thomas, and I live in Calgary, AB. I am here to learn about this terrible disease, and perhaps help other people along the way. 2 years ago I lost 25% of my tongue (Hemiglossectomy, radial forearm flap, tracheotomy, neck dissection and mandibular osteotomy) in a 14 hour operation,+ 5 days in the ICU (witch I can not remember) + 6 weeks of radiation. As time goes by I will tell you more about my journey. I will leave it at this for now. Hang in there you all. The last 2 years have been the best of my live!!

Hi Thomas,

Sent you a private reply. Take Care...

Johnny

Thomas that's awesome. You sound great. I'm coming to the end of my IMRT and chemo sessions. I keep telling myself that this is only temporary and life will steadily improve once this is all over. I'd enjoy learning more about your recovery period and quality of life today. -Kurt ps i also has the radical neck disection with hemiglossectomy and forearm flap

Again Hi All. Indeed I am a very lucky guy, reading all those bad stories on this site.
I was never in any real pain before and after my surgery. Lost however 16 pound of weight
in 15 days in the hospital, they fed me thru a hose thru my nose straight in my stomach.
Just as well that crab tasted terrible. Today I am doing very well. Have all my energy back.
I never did chemo, all my limb nodes where clear. I sailed thru the radiation very well as well.
Other then some blisters inside my cheeks. Not much. I never lost my appetite or energy.
I was back at work before I finished all my radiation treatments (30). I must say that when I came home
at night, I was spent, and went to bed at 7.30 every night.
Now doctor cut my follow up visits back from every 3 month to every 4 month. The funny thing is
I don't have any of the risk factors, to have gotten this. I do not smoke or drink period (I am a competitive cyclist)
Eat a very healthy diet and sleep at least 8 hours a day. No cancer in the family either.
A small percentage of people get cancer for no reason. Doctor told me. that when cancer comes back
80% within the first year. No guarantee. Oral cancer has a nasty habit of coming back later in life.
I am 55 now, so if it stays away for another 30 years or so they can have it. We all die off
something. Anyway I wish everyone on this site the very best and luck. Just remember cancer is
not a dead sentence anymore. Look at Lance Armstrong.
Thomas in Calgary, AB

Well said, Thomas
Not a death sentence for sure, but just be careful and make sure you keep having checks and rechecks, because cancer from where I sit is a sneaky little monkey and you just never know. Always, expect the best outcome but prepare for the other....
Best Regards,
Adele in Ontario

Congrats Thomas!

I am 1 year older than you, and I am also cancer free 2 years post treatment. I also had none of the risk factors, and I never dreamed that I would get oral cancer. Go figure.
Based on your calculations, I should not have to worry for 29 more years, and I can live with that!

Carol

Does oral cancer ever become a closed chapter in someone's life? I am 2 years out, and I know that's too soon. On the other hand, from what I know, 5 years is also too soon. When I saw my HN Physician a few weeks ago, he said that I would need to be followed for the rest of my life.
If I had been told that when this whole thing started, I would have been very depressed. Now, however, I was strangely reassured. As long as there is even the slightest chance of a recurrence, I want to know that I'm being checked often enough to minimize the risk of any big surprises.
Although initially my goal was that the cancer would one day become a closed chapter, I no longer think that's a realistic, much less, desired goal. I am not the same person I was before this started. It's been a deeply intense, and at times, lonesome journey. While I now know there will always be physical reminders, the psychological reminders are everlasting and they go to my very core. I do not mean to imply this is a negative. Quite the contrary, I have more depth and sensitivity as a result of this experience. It sounds like such a cliche, but I truly do not take life for granted.
No, the oral cancer experience is a journey, and as such, it does not have a destination.

Yes, the sometimes very lonesome journey for sure!!
Having cancer does change everything, it is part of who you are, it is like the hitchhiker you never meant to pick up and now won't get out of your car! Just going along for the ride!
Although, I am a truly positive thinking happy person who never smoked and rarely drank I got this. I have asked why to myself a million times. I go to sleep thinking about it and I wake thinking about it. It is truly life altering in some ways for the good and in other ways it really stinks!
Having surgery very soon to remove what is hopefully a neuroma. It better be!

Hi. Thomas again. Question! Ever since my surgery (Oct. 3 2005) I feel my tongue on the surgery side. It does not hurt or anything, but I can feel it.
About a year ago I ask my doctor about it, and he said that was normal. Because of the nerve damage and scar tissue. I am 2
years out now, and I can still feel it, not any less, than 2 years ago. I want to know if it will ever go away. I can live with it, if it does not!
Does anyone knows anything about vitamin B17, and what is your thought about having white sucre in your diet. I read once
that cancer patients should not use it. Cancer cells love glucose in any form! Love to get feedback on this. Thomas in Calgary, AB

Hi Thomas:
First of all, "thanks" for the positive words of encouragement on my post last week. Yes, I'm very aware of the scar tissue as well. It had me worried a few times as it got painful or seemed really "tight" (for lack of a better description). My doctors said this is normal, some of it being the nerves firing back up and things coming back to life in there, plus being more succeptable to bacteria, etc., due to saliva issues. My surgeon said as long as none of the pain is constant it probably isn't a concern. I can't speak for two years out (congratulations by the way) but I'll be gald to update you next year (And hopefully we can compare notes for many years to come)!!

Best Regards,
Steve