| | Joined: Jun 2009 Posts: 71 Supporting Member (50+ posts) |  Supporting Member (50+ posts)
Joined: Jun 2009 Posts: 71 | I cry every time I visit. It helps me and I try to help others where I can. I am pretty busy now with Hyperbaric treatments, vital stim treatments and prepping for the CPA exam. busy, busy, busy....
11/1999 SCC tongue - surgery
1/2000 Met(s) in lymph nodes - modRND
2/2000-4/2000 RT ~6 weeks
end of 2006 SCC tongue - surgery
1/2008 SCC BOT - surgery / PEG installed
2/2008 chemo & RT
4/2008 last time I consumed solid food by mouth
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | I feel so lucky to have avoided radiation and chemo with this cancer. There seem to be few who fall into the surgery-only category. That is one reason why I hold back a bit even though I would like to return the help and advice I received when I first joined nearly one year ago. I'm battle-scarred and I lisp but life has otherwise returned to near normal. I know that I can fall off this health pedestal at any time but right now I just feel fortunate.
Of course there are challenges. I'm going to a photoshop course tonight for the second time. I was very aware last week that the others looked at me strangely when I introduced myself. I just really don't care. Maybe it's the anti-depressants suppressing anxiety ... Maybe I should worry more!
Anyway, much encouragement to those of you experiencing treatment right now. And I'm enjoying seeing people's updates on facebook.
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | 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 | I read this post when it was added in late October. It is something that I have thought about myself and waited to see what the responses were from our members.
Great reply from Brian and others and for the time being I am happy to be semi active here.
I still think I can give some help and advice to the forum but mainly concentrate on those that have had the same treatment as me. Also I try to be there for all the Australians and New Zealanders as there is nothing as valuable as this forum locally even though our Cancer Councils are slowly getting there.
I am always happy (and sad too) when they have found OCF as I know they will get the best help here.
Many reasons have now been given for people no longer posting and it has also been mentioned that not everyone makes it.
There are caregivers who lose their partner or family member as Liz did. (Great to see you here Cookey).
Then there are others whose families let us know that one of our members passed away.
I remember people like Minnie, Stephanie, Patty and recently Pete. They are still my FB friend and will remain there while ever their profile still exists.
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: Aug 2006 Posts: 294 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2006 Posts: 294 | I suppose I am one of those who checks in only occasionally now that I am over 4 years out. I think in my case it just seems to be too much of a reminder to check in and scan posts from time to time. It is difficult for me not to get a bit depressed if I scan and read too much in many cases. I do admit that when it is coming up time for me to have an updated CT scan and physical check by my ENT I feel a need to check in on the site. Tomorrow just happens to be such an occasion as I have my scan tomorrow followed by the ENT meeting, scoping, etc. a week from tomorrow. I still get a bit "antsy" starting a few days before the next scan as I am sitting here tonight. A clean one this time will put me at the 4 year and 4 month point and it all comes back to me in great detail at a time like now.
Bill Dozier
Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | Bill, I know how you feel. Best of luck:)
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Good luck Bill great to see you xx
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | It's so good to see some familiar names checking in and know they are OK. Bill - I hope today goes well for you and that the "antsy" feeling can go away soon!
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: Sep 2010 Posts: 26 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Sep 2010 Posts: 26 | [quote=RPCV][quote=debandbill]uh..when i get PM's I get a notification of same in my email. So if the person you are trying to reach still has the same email that they put in their profile, they should get an email containing the senders name and the post.
Deb [/quote]Deb,
This is true when you go to "My Stuff" and then "Preferences" and choose "yes" to the following question:
"Do you want to be notified via email when you receive a private message? __Yes __No"
If the member did not answer "yes", then the PM stays unseen in the forum mail until the user logs in and reads it.
JDR,
You said ironically, I feel, "I am DYING for updates!"
Please realize we have lost many good people to this cancer, and many of their outcomes will never be known by those of us who have followed, cared about and participated in their lives through these boards. Their contributions live on in their words of struggle, humor and advice; words which have helped countless others.
I like to think that because I have vicariously known them, I have become a stronger and more compassionate person.
On this "All Hallows' Eve", I find comfort in having been touched by those who have gone before me. And...
Thanks to all of my OCF family![/quote]
Yea, I realized what I had typed AFTER I posted...sorry I posted it that way!
Thank you to ALL for your responses!!!
CG to 44 year old husband, Dx: 9/23/10 SCC T2N0M0 (Right Tonsil)
Radiation only started on 10/13/2010
13/33 Radiation Treatments done!
| | | | | Joined: Sep 2010 Posts: 26 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Sep 2010 Posts: 26 | Bill,
Thinking about you and hope you had a clean bill of health today.
CG to 44 year old husband, Dx: 9/23/10 SCC T2N0M0 (Right Tonsil)
Radiation only started on 10/13/2010
13/33 Radiation Treatments done!
| | | | | 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 | Bill, thanks for posting. Its so nice to see you are doing well and that you are now over 4 years cancer free, congrats!!!!! It seems like many posters stay away for the same reasons you mentioned, it brings back too many bad memories. Thats very understandable, battling oral cancer is so traumatic. Best wishes with your latest check up 
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 | | |
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