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Joined: Apr 2005
Posts: 2,219
Patient Advocate (old timer, 2000 posts)
Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,219
Donna,

Congratulation on your anniversaries and your wonderful outlook. You are certainly an inspiration to me.


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
Joined: Sep 2010
Posts: 63
"OCF Kiwi Down Under"
Supporting Member (50+ posts)
"OCF Kiwi Down Under"
Supporting Member (50+ posts)

Joined: Sep 2010
Posts: 63
sometimes i wish i was, i live alone so dont have to talk to anyone. my voice is definitely warblier than it was a year ago.
as an aside i am having a few problems with my isp and payments not going through as quick as they should so e-mailed help desk and said " i would just call you but am speech impaired and you wouldnt understand me " ( particularly when the call centres tend to be in a foreign country ) , late today someone rang from there and surprise surprise he said he couldnt understand me ! had an e-mail about 10 mins later


45 yrs. peg tube jan 07/09 TOTAL GLOSSECTOMY jan 12/09
T3NOscc oral(ex smoker )
open tracheostomy , removed oct 12/09
modified neck dissection lymph nodes I to IV
rectus abdominal flap + full dental removal
30 day radiation treatment ,diagnosed with lung cancer oct 2011
Joined: Jul 2010
Posts: 531
"Above & Beyond" Member (500+ posts)
"Above & Beyond" Member (500+ posts)

Joined: Jul 2010
Posts: 531
Well this is exactly what I was asking about and stating in my other posts, you may have a speech impediment because of the cancer BUT you are never silenced because of the internet/computer! And with all the other technology you can always have a "voice" to speak. smile Ron does quite well his big issue is the letter "L" he will try and try and it upsets him. I tell him he is just fine that he is doing very good. We went to a memorial service Saturday and he went around during dinner time and mingled with a bunch of his old buddy's and everbody he talked to understood him.


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
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
It is a great strategy to have alternative words...ie.....my problem with saddle became horse chair. There are definitely words I cannot say - and sometimes I know it as soon as they are out of my mouth so I quickly find an alternative. Tell him there is absolutely no point in repeating the word the person didn't understand the first time. I'm STILL learning That lesson!!

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)
Joined: May 2010
Posts: 638
klo
"OCF Down Under"
"Above & Beyond" Member (500+ posts)
"OCF Down Under"
"Above & Beyond" Member (500+ posts)

Joined: May 2010
Posts: 638
Alex and I have lots of alternative words for cancer. Wanna hear some???


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
Joined: Jul 2010
Posts: 531
"Above & Beyond" Member (500+ posts)
"Above & Beyond" Member (500+ posts)

Joined: Jul 2010
Posts: 531
sure i'm game throw em out there karen


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
Joined: May 2010
Posts: 638
klo
"OCF Down Under"
"Above & Beyond" Member (500+ posts)
"OCF Down Under"
"Above & Beyond" Member (500+ posts)

Joined: May 2010
Posts: 638
should have known someone would call my bluff Suez. You know darn well that the minute I do, the words will be deleted leaving us with a post that looks like the following.

Alex uses ... most often, whereas I like ...... Of course there is always ...... or .... . When we are really mad ..... works or ... and ......... shocks my mother.

Come to think of it, it is just like Pandora's issue - we have to cast about for different words - although they are not as satisfying grin


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
Joined: Jul 2010
Posts: 531
"Above & Beyond" Member (500+ posts)
"Above & Beyond" Member (500+ posts)

Joined: Jul 2010
Posts: 531
U silly girl! lol


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
Joined: Apr 2003
Posts: 122
Senior Member (100+ posts)
Senior Member (100+ posts)

Joined: Apr 2003
Posts: 122
Donna,
Thank GOD for this site! It's helped me learn to "keep on keeping on" despite my challenges- the most vexing (lately) of which is my inability to speak clearly-or be understood AT ALL sometimes.
I wasn't exactly a silver tongued devil, but when I began losing my eyesight (yet ANOTHER challenge) I was asked to read some books for the blind-which I gladly did-and now am convinced that helping the deaf in some fashion is going to prove to be my "bright side". I've never faced a challenge that didn't (eventually) have a bright side.
You're very eloquent-don't let the "do-do" get you down. Most of mine's in my head, anyway. :-)


SCC right tonsil Dx 14 Feb 03
No surg till Apr 03
Lip resection Sep 05 "frankenface"
Recurr Apr 10
2/3 tongue removed Jun 10
SPEECH/SWALLOW/DROOL challenges FUN!
Dec 10 Tumor @ nodes/larynx/cart artery growing
Erbitux Mar 11 Hyoid bone regrows!?
recur Dec 12
begin taxo chemo
10yrs-still kickin!

Joined: Jan 2011
Posts: 49
Likes: 1
Contributing Member (25+ posts)
Contributing Member (25+ posts)

Joined: Jan 2011
Posts: 49
Likes: 1
Thank you so much for your honest, thoughtful, and detailed reply. Yes I can imagine the face up close and personal, like the "close talker" on the Seinfeld series or the dogs with the little heads and huge eyes and nose, perhaps?
Anywho, I am grateful for your honesty and willingness to share.


63 years old
Nona to Alora, Emery, Ilyana, Harper, Nolan, & Rory. Yogini since 2012. Namaste.

Diagnosed 10/5/20 Oral Cancer/ RT side of tongue SCC Stage I Partial Glossectomy 10/23/20 Right Neck Dissection 12/4/20 Clear Nodes
BOT SCC 1/18/11 Stage IV N3 M0 HPV+ Port2/18/11
Treatment start 2/22
CISplatin 2rnds, Rads:35 treatments
July 12 doctors' deemed me cancer free-port out July 18.
Non-smoker, was a light-drinker No drinking since diagnosis
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