| | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | I'm so glad you are doing this, Nathan! - If you have to go to silent movies that's ok, just keep the videos coming. My son used a lot of his own kind of sign language. For the Rad room, they had CD's to play for the patients and would take requests, or patients could bring their own CD's. Maybe you could bring some of your own favorite music?? For communication, my son would use a lap top and type in really big letters so that when he turned it around it could be read by anyone present. When I was teaching at the univ., there was a projector attached to my laptop and I could project anything on the wall behind me, that I wanted students to see. Just another way to communicate on video. Keep us updated!
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Aug 2010 Posts: 157 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Aug 2010 Posts: 157 | http://www.youtube.com/watch?v=EQnBJMwSCf8There is the next update my friends...sorry for almost losing it yesterday but like our OCF friend said that I was holding on to my past it hit me like a book to the face. I sat in front of that toilet and cursed that damned thing, spit on it and through it down the toilet then cried for a while. Thank you all for being so supportive of this, like I said this is unlike me big time. It is a true blessing I even found the urge to do this... Your Friend, Nathan
SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Nate,
You are doing well. Your speech is phenomenal. You r lookin' good.
The radiation and chemo didn't get bad for me til the bitter end...
I just felt wiped out and had some rough days w some of the side effects. All in all it wasn't as bad as I had imagined. Don't let the impending treatments weigh you down. Hope you sail on through.
K
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Oct 2006 Posts: 383 | Nate:
Great stuff (Once again). The entire waiting, wondering, experimentation thing was like my personal internal video on repeat. AMAZING..... I'll fill you in sometime on that entire ordeal (An ENT telling me I had swimmers ear (Found out it was referred pain), a negative biopsy, Like you said, digging around and pissin' it off), but right now it's about you Buddy. Keep the vids coming! A lot of us lived it and understand it and you will too, soon......
Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | | Joined: Aug 2010 Posts: 157 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Aug 2010 Posts: 157 | http://www.youtube.com/watch?v=FQ9dqq28iSUNew update friends!! Its the weekend, I also finally joined FaceBook, sheesh I am doing things I truly despised just 4 months ago. Hell, I still listen to records and cassette tapes now I am all involved in the social network when I was so anti-social lol. Your Friend, Nathan
SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
| | | | | Joined: Sep 2010 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2010 Posts: 71 | Glad to hear some good reports about radiation - I start Thursday (10/28) and am scared silly about the pain, being able to swallow, eat/drink, etc. I am going to try to get through without a feeding tube - will see how that goes but I am going to give it my best shot.
Michele in IL | | | | | Joined: Aug 2010 Posts: 157 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Aug 2010 Posts: 157 | Keep up with me Michele, we can walk this journey at exactly the same time. I hope we can become friends and that my awkward videos do some good lol. If you want to I will be right there with you every step of the way, sounds like my mask is being done tuesday and theyve already got my mouth guard made from my impressions. Shall we dance?
Your Friend,
Nathan
SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Best of luck to both of you for the upcoming radiation.
Great that you are able to "dance" together.
I have seen your video clips Nathan and you sound so good plus I love your attitude and sense of humour at what must be a difficult time.
Now that you are not going to be anti-social anymore you may not know that on the Friends forum there is a topic called Facebook.
ChristineB keeps the list updated with the names of those that wish to be included. Without counting there must be over 30 of us now.
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Nate, if you would like to be added to the FB list, please let me know. I dont add anyone unless they request to be part of the list.
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: May 2008 Posts: 357 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 | You've become like one of my kids, Nate. ((((hug))))
Glad you threw away the cig. I carried a pack around for 3 months before I threw it away. But then, I had time - I didn't have an event staring me in the face.
Your great attitude will get you through this.
Take care -
Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
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