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Joined: Sep 2009
Posts: 701
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"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Sep 2009
Posts: 701
Likes: 1
Karen,

I love reading about your progress! Amazing! Keep up your positive spirit.

All my best-
Anita


Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
Joined: Dec 2007
Posts: 46
"OCF Down Under"
Contributing Member (25+ posts)
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"OCF Down Under"
Contributing Member (25+ posts)

Joined: Dec 2007
Posts: 46
Hi Karen,
Im from Melbourne too and Id like to give you hope and encouragement.
I also had tongue cancer in 2007. I had a flap (taken from my wrist) 9 hours in surgery and 6 weeks of radiation, then a second surgery to reduce the size of the flap.
My jaw bone is a bit dodgy and the odd chip has worked its way to the top, but the my great dentist(who was also my dentist at Peter mcCallum) at the Melb dental Hospital, isnt too concerned and says the bone IS damaged, but will get stronger over time. He did say I should NEVER go to a general dentist for any work on my remaining teeth. Thats ok and no big deal. I lost 4 teeth on my lower lhs, so I just chew on the right side now.
This was almost 5 years ago.
I was told I wouldnt talk properly again...and to make it worse, i am a professional Singer/muso. But when people tell me i cant do something, I go out of my way to prove them wrong.
My speech is now back to what it was before the cancer, and I have been back working as a singer since late 2008.
My tongue is still annoying and tight at times, as is my jaw and neck, but i dont notice the scar on my wrist (where they took the flap from), the skin graft taken from my thigh, the scar on my neck where I had 34 lymph nodes removed, and the tiny tracheo scar is a talking point! Its amamzing how many people have these for different reasons!
Trust the drs, and do your own research, but more importantly, trust the great people on this forum. They stopped me from wallowing in despair and terror with facts, statistics, and best of all, humour!
Im not saying it wasnt tough, it was..but it DOES get better over time.
I noticed you said you have been referred to a Physio in Melb. Would you be kind enough to send me his/her name? I'd also like to try that to relax my neck and stretch the part of my tongue that is anchored to the floor of my mouth.
Its better than it was when it was first done (probably due to continual singing) But after a while, I still need the odd painkillers and Serapax to relax it and stop it aching.
Id really like to try some kind of alternative therapy now, even if it can just lower the frequency of the more annoying days.
If you dont want to post it on here, you can email me- [email protected].
I wish you all the best, and if i can help you in any way dont hesitate to contact me.
Take care (and tell the drs to do the same!)
Lyn x


Tongue Cancer SCC Removal of 2/3 of right side tongue, neck disection-34 lymph nodes removed. flap for new tongue made from left wrist in 2007. Now (mid 2011) speech has been back to normal since early 2009, and Im back working as a singer. So far so good!
2016... Still cancer free! Yay.
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