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Gabe #142209 10-30-2011 04:10 AM
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Cheers guys !

I was pretty nervous before the first speech I did because it was my first time I'd told my story in public. It was on a stage in the busiest part of Brisbane as well so it was a nice one to start with. I did the same speech later in the afternoon and I felt far more comfortable in comparison to the first one.

My brother filmed the first one, and I've uploaded it onto youtube for anyone who wants a look.

http://www.youtube.com/watch?v=m0qzeZnuaOo

A few errors in there. 'sperspectives= perspectives', and yes I have met myself lol.. Other than those 2 things, I think I did ok! Let me know what you think.

I kept it relatively short and sweet with my story because it wasn't really an 'intimate' set up for the audience. It was out in public in the middle of the city.. I may get opportunities to speak at other charity events where I'll go far more into detail on more specific details of my journey.

I also want to say that you guys on OCF have also played a major role in my recovery post-cancer. I found you guys when I was feeling lost, and members on here have helped me deal with what I went through last year. Knowing I wasn't alone on my journey made it alot easier for me to deal with everything. So thankyou all very much.

Oh yeah, and Gabe I did manage to get on 10 news. I was attempting to dance. Not very well though, but I did try. It was on the earlier part of the news. I left early because I had plans to play indoor soccer that night. If I stayed around I would have had some more air time behind the weather-woman lol..

Cheers!


21 @ diagnosis. Tongue cancer(SCC) non smoker,HPV negative. 11 hour Surgery (30+ glands removed-left side neck dissection, 'jaw split' for 'access'-left side tongue dissection, graft & artery from left thigh for re-construction of tongue.44 rad t'ments.4x cisplatin.no peg.Clear PET scan 12/5/2011!
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Good to see you got your priorities right Dave. Soccer over TV fame wink
Just played the clip and have to say you did a wonderful job and did not look nervous at all.
Hope you don�t mind I shared on FB? You are doing a wonderful job for OC awareness especially educating people that it is NOT an older persons disease.
Keep up the good work!
Gabriele xoxo


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

Gabe #142489 11-05-2011 03:25 AM
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Great job Dave! Your speech was terrific and you didn't seem at all nervous.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
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Dave thanks for sharing your story! You an inspiration to me.


Do not go gentle into that good night. Rage, rage against the dying of the light.

31 @ Dx SCC of tongue right side May 27, 2011, no tobacco, light drink
Partial gloss. and ND June 2011 - 2 jaw nodes positive ("encapsulated")
33 rads ended 10/21/11.
Dx Non small cell lung cancer 05/18/15
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Hey everyone. I hope everyone is doing as well as possible.

Yesterday afternoon I noticed a tiny 'spot' or 'lump' towards the back corner of my tongue. It's on the opposite side of my 'graft' so it's on part of my 'original tongue'. It's tough to see or speculate what it is especially because of its location. I showed some family, and this morning I've booked in to see my surgeon next Thursday morning. That�s the earliest I could see them, so it's a bit of a long, anxious wait.

Today I felt pretty ordinary, going over all the crazy possibilities and fearing the worst in my mind. I think this is a natural reaction though. It just feels like it brings it all back in an instant when you feel or see something unusual. I was living carefree for a little while there.

I'd been sick though with cold/flu symptoms for the last 2-3 weeks and I�d begun worrying why it�s been hanging around for that long. I have been feeling quite a bit better in the last 2-3 days though before I�d noticed this spot in my mouth. (I don't actually check in my mouth very often- I probably should though..) I thought I�d felt something in my neck as well, but it�s been around the scars on my neck so it�s quite possibly scar tissue, or nothing. I think it�s possibly my mind playing games to a point as well. I guess it�s a case of once bitten, twice shy. But there is definitely a lump of some kind of my tongue.

Up until yesterday things have been going extremely well. I�ve been eating well, speaking well and living a more fulfilling life then I was pre-cancer. I�ve been keeping myself busier then ever, and I�ve really been enjoying life. I�m playing soccer again although I�m out at the moment with a fractured wrist that I did a couple of weeks ago (I'm 2 weeks in. 6 weeks total in a cast ). I�ve even began dating a nice girl just recently smile

Hopefully I�m just being whatever the male version is of a �drama queen�, and it�s nothing to worry about. It might even be gone by next week. And if it is the worst, then bring on round 2.. Fingers crossed it doesn�t come to that.

I needed to get that off my chest.

Cheers!

Dave


21 @ diagnosis. Tongue cancer(SCC) non smoker,HPV negative. 11 hour Surgery (30+ glands removed-left side neck dissection, 'jaw split' for 'access'-left side tongue dissection, graft & artery from left thigh for re-construction of tongue.44 rad t'ments.4x cisplatin.no peg.Clear PET scan 12/5/2011!
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Better safe than sorry! Sometimes tongues act up maybe you ate something that irritated it?, hopefully it's nothing... Did you call and tell them if there was a cancellation you'll take it? Try - it will help ease your mind if you get in earlier. The neck thing may be because you were sick. Keeping fingers and toes crossed its nothing! we've all been there and I - like you - question everything in my mouth if it's been there more than a week!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Cheryld #143958 12-15-2011 08:52 PM
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Cheers Cheryld.

It's definitely possible I've eaten something that's triggered it. I haven't rang in to ask about cancellations yet but the only time my surgeon is availabe will be Thursday I'm pretty sure. He's definitely the guy I trust, and so I'll wait to see him. Thanks for the support, you've eased my mind a bit already. I only spotted it yesterday so I haven't even left it a week. I guess I am just worried that it was there before but I hadn't checked in my mouth. Better to be safe than sorry.

I'm off for a the afternoon to get out and clear my mind a little.

Cheers smile


21 @ diagnosis. Tongue cancer(SCC) non smoker,HPV negative. 11 hour Surgery (30+ glands removed-left side neck dissection, 'jaw split' for 'access'-left side tongue dissection, graft & artery from left thigh for re-construction of tongue.44 rad t'ments.4x cisplatin.no peg.Clear PET scan 12/5/2011!
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Have fun... I know it's worrisome, different things pop up here and there in my mouth too... I try to check it and my neck a couple of times a week. I give my mouth a break sometimes too as I am always pushing it with the foods (sometimes I just do a day of soft and bland foods!) - you should pick up a waterpik to help keep it nice and clean in there plus it will tell you if there are any painful spots to keep an eye on. All of this could be related to just being under the weather- I think just having had rads and chemo messes with your immune system so If you do get a wicked cold/flu then it may take longer to heal. I know you start wondering - how long has that been here? When you see something out of the ordinary in our mouth, that's why I check my mouth once or twice a week. Again hoping it's nothing. Let us know!! And I feel the same way about my surgeon!! My RO - not so much! smile

Last edited by Cheryld; 12-16-2011 08:21 AM.

Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Cheers, Dave, from "Wimpy" Julieann - the biggest wimp on the Forum. I thoroughly understand your concern/worry about this latest "find," but like the others said, it could be nothing other than some swollen area from the flu you had. I'm glad you're getting it checked though, if nothing else but to ease your fear. I noticed you had a PET scan 12/5/11, which was clear so that't an encouragement. All I can say is try to relax (yeah, right) until you see the doctor next week. Let us know after your visit with him. Here's a BIG hug for you and best wishes from julieann (((((((((DAVE))))))))))))


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
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Hope you are right and it is just something you have eaten.
Good luck with the visit with your surgeon on Thursday.
It would be a really good result if it cleared by then along with your mind smirk


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

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