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#186092 10-21-2014 08:19 AM
Joined: Mar 2014
Posts: 286
OzMojo Offline OP
"OCF Down Under"
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"OCF Down Under"
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Guys and girls I just want to do something we don't say often enough, thank you for being here.

The first thing someone does when they even suspect they have cancer is to hit Google. All they want to know is "will this kill me" and they enter a sea of confusing statistics and usually read things way out of context for the type of cancer they might have.

Then comes the diagnosis and the bombardment of new information and concepts totally foreign to the average person. Words like "constipation" "nausea" are about to take on a whole new definition, and new words like "dysphagia" and "PEG" become new staples in the vocabulary.

The lucky ones find their way here. They are treated with respect, no matter how silly their newbie questions might sound to the veterans. In an internet full of trolls, haters and misinformation, they find trust, empathy and sound, heartfelt advice. Its not an easy place to be. For the veterans to constantly revisit their own pain is a difficult cross to bear. Some find it too depressing to stay, and I can understand that.

I want to make a special mention about ChristineB. I didn't want to name anybody, because I'd miss out on many deserving people. But to me, Christine is an absolute star. We have many mothers in the group but I consider Christine to be the mama bear. Nothing gets past the mama bear. If you're not having your 2500 calories and 48oz of water (those are MINIMUMS people!) you will hear from the mama bear. If you don't add a signature, or post something in the wrong board (heaven forbid the General Board!) you will hear from the mama bear. Her daunting signature shows she has earned her stripes and when she tells you something its like hearing it from your own mother. You had better listen because she has been through it all and she is telling you because she loves you, and its for your own good, especially when its not what you want to hear. I am so grateful she is here.

Now I hope you all get to read this before the mama bear swipes this post off to some obscure board down the bottom. I just want to thank all of you, the founders, admins, old timers and other contributors. You make this place a warm place to visit when the world is very small and dark.

Bless you all, your caregivers and your medical teams.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
OzMojo #186098 10-21-2014 08:56 AM
Joined: Jan 2013
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Ditto that and all who contribute here. This IS a very special place and we all wish more would find it early in their encounter with OCC.

Thanks OCF!


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
OzMojo #186099 10-21-2014 09:00 AM
Joined: Jun 2014
Posts: 86
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Ditto on Everything. I love all of you and all of your help. People say "social media and modern technology has ruined lives." But in this instance it has definitely saved my life! Right when I heard about my brothers diagnosis I just wanted to crawl in bed and never wake up. But then I met all of you wonderful people with such wonderdul stories. I am so glad I found this forum.


22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue
CT scan clear LN 6/20/14
HPV-, non-smoker
R tongue, right hemiglossectomy Surgery 6/24/14
(Not reoccurrence but went to NCCC instead
R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14
PT1N2B.3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) & Cisplatin (2x) begun
10-21-14 peg in. 10-31-14 1 round of carboplatin
11-4-14 IMRT rx comp
3-27-15 Recurrent tumor in lymph node, L neck diss.
10-29-15 brother passed away, 23 yrs old
OzMojo #186102 10-21-2014 10:53 AM
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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This IS a special place and all the more so with our own "Mama Bear"! Christine does a super human job of watching out for everyone who comes here. I will always bless the day and the young man I met in the Radiation Tx waiting room who approached me after my son was summoned for his Rad Tx, This young man with the sunburned look on one side of his face said to me: "Go to Oral Cancer Foundation Dot Org". And then he left for his own Rad Tx. That was the beginning of saving my son's life and my eternal gratitude that we have this place to come to any time of day or night.


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.)



OzMojo #186103 10-21-2014 11:34 AM
Joined: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Awww, Dave you just made my whole day smile

You are right, I can be tough with following the rules and regulations. Im here for the greater good to help sick patients and their caregivers to avoid the pitfalls of the horrendous treatments we go thru. Not everyone always agrees with my methods but I always have OCF members best interests in mind with every single thing I do. This doesnt always make me new friends but I will always be honest and fair with how I treat everyone. I really do care about every single person affiliated with this board and hope for the very best possible outcome for everyone.

Thank you so much for taking the time to say thanks. Its really not necessary but it is so nice to know Im appreciated. I really am only a small part of this forum. We are all in this together and it takes every single one of us to help others.

Have a great day smile


Christine
SCC 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 smile
OzMojo #186106 10-21-2014 01:57 PM
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
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Posts: 1,024
Fabulous Board. Fabulous people.
I give this forums web address to everyone I come across and in other online forums too - none of them compare.
This forum has kept me sane.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
OzMojo #186116 10-22-2014 04:12 AM
Joined: Oct 2008
Posts: 246
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I agree with all above and also extend a special thank you to Christine.

6 years ago, during the diagnosis phase, I found this web site. I cried while telling a close friend about the difficult information and situations I was reading about, she suggested that I stop reading. I could not stop and my instincts were correct. I gained knowledge and support here that could not be found elsewhere.

Lottie



CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
OzMojo #186118 10-22-2014 08:27 AM
Joined: Sep 2014
Posts: 27
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Posts: 27
I can't thank this forum enough. Here's to Christine too, and everyone that is in the forum. I was absolutely terrified when we found out about our cancer. I could not stop crying. I am so very grateful that I found Brian Hill and this forum. I became educated so quickly that the fear has eased and I have the strength and courage to get through this. We are so not alone, it helps to know that.

I really don't know what I would have done without the OCF.

Thanks again and Hugs to all of you!


Caregiver
BOT 3 cm 08/24/14
Pet Scan 09/24/14 localized
Rad started 10/07/14
Cisplatin started 10/09/14
PEG 10/28/2014
Last Rad 11/26/14
Last Chemo 11/21/14

OzMojo #186123 10-22-2014 10:05 AM
Joined: Aug 2014
Posts: 61
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Posts: 61
Great post. I agree % 120! This place has helped me sooooo much,


Tongue Cancer
1/2 tongue removed, replaced by flap from forearm. April 15, 2014
neck disection, 1 lympnode involved, doctors removed all to make sure cancer is gone.
30 rad treatments and 2 cisplatin chemo, doctor said I did not need the third
one. Finished up July 30,2014
Chemo treatment was my choice. The board felt surgery and radiation was plenty to take care of my cancer.
OzMojo #186124 10-22-2014 10:07 AM
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Posts: 1,275
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ChristineB and everyone who has given support here on the forum, you have my heartfelt gratitude.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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