| | Joined: Jun 2007 Posts: 10,507 Likes: 8 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 8 | Hello
Welcome to OCF. First let me tell you, that now you will not be alone any longer. You have found OCF and have a whole new 'family' to help get you thru this. Check out some food ideas listed under Menu ideas, that may help you with your nutrition.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 | Good1
Sorry to hear of your recurrence.
Unfortunately I have had 2 tongue flaps, the first performed when the tumour was removed and the 2nd reconstruction was required because I ended up with mandible Osteoneocrosis, so they had to re-do the tongue flap because the rads had done irrepairable damage.
Thank goodness this is not a common occurance and in my case was probably due to my teeth near where the jaw split was done, but that is a whole new story....
I was surprised that over time my speech improved quite a bit after my rads - and people who I spoke with (who are very honest with me) would notice the difference. I have had to adjust again to a totally different mouth structure following the 2nd flap. It certainly takes time to become accustomed to the changes but surprisingly enough it does happen. Alot of patience is needed that is for sure, because it is a long slow process!!
The majority of my current tongue flap is 'stuck down' from all of the front right down one side so obviously I have very restricted mobility. Even though the front tip of the tongue helps to make the majority of sounds I am still able to speak (certainly not as clearly as before the OC) and only seem to sound really muffled if I speak too quickly (quickly being the old normal) Therefore with alot of words I have to say them slower and they do come out alot clearer.
Hopefully in the near future I will be starting the process of getting bottom teeth implants and my tongue flap will have to be thinned out at the front to allow the fitting of the implants, following that my mouth will take on a totally different structure again, therefore I will have to basically start all over again.
It is amazing how we compensate when we have to.
No bull dust, it is very difficult and sometimes very depressing and upsetting but I just keep plodding along, clawing my way back step by step unfortunately with some unforseen setbacks but nevertheless we do keep trying. It will be well worth it that is for sure to be able to eat something substantial again and be able to go to my favorite restaurants ....
If you have any questions that you think I may be able to help with please do not hesitate to send me a PM - personal message.
Karen
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Welcome. My surgeries sound significantly different from yours, but I am here to help in any way I can. I loved the post earlier that said "you are not alone anymore". That is so wonderfully true about the support and understanding you get from the OCF "family". Keep posting and I'm sure someone will be able to help.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | |
| Forums23 Topics18,305 Posts197,297 Members13,504 | | Most Online7,516
Mar 21st, 2026 | | |
|
