#88276 01-17-2009 03:14 PM | Joined: Mar 2006 Posts: 114 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Mar 2006 Posts: 114 | I have an apology to make to you folks on the forum. In my OC journey which started in February of 2006, I have used this site frequently to find great information, get great advice, ideas, etc. But looking back, when I first became 'clear' after my first round of treatment in '06, I basically 'went away'. I guess I didn't 'need' the site any more because I was on my way to recovery.
Then my first recurrence came in summer of '07. I was back on the site, because I needed it. I needed the communication, the information, the input, the support. Then again, after months of surgery and treatment, I was 'clear' again and back on the road to recovery. And once again, I 'went away'....I didn't really need the site.
Now here I am with my second recurrence, and I'm back on the site every day. And I've had a nagging guilt looking back that I've been pretty selfish in my use of the site. I've used it when I've needed it, but where was I when I was in recovery and perhaps others needed me or my input? Where was I for the people who perhaps could have benefitted from my experience or knowledge? I'm realizing that the true benefit of this site is for those of us who have been through so much to be there for others...whether our journey is still in the making or whether we're in the clear for a time (or hopefully, forever). There are so many of you who have been clear and/or in remission for some time, even many years, and you're still here, giving encouragement and input. That's what I should have been doing, and should be doing now.
So I want to apologize to all of you for my own selfishness and commit that I will do a better job of staying connected, to give back to the site in hopes that others may benefit from me just as I have benefitted from others. I owe the site and you folks on it to give back...not just when I'm in need as well, but beyond that.
Thanks to all of you who have been such a huge support in my journey. I hope that I can be a support to others along the way as well.
-Steve
Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | Steve--I don't believe the forum can ever get upset with one of their own members...unless it's an impostor coming in to sell some kind of "cure in a bottle" and exploit others for financial gain. I'm sorry for your recurrence...lets concentrate getting through this...You have a great strong attitude, you were not being selfish...
Sometimes I feel guilty because I feel like I should have better advice for others...Sometimes all I have to give is an act of silliness in hopes it gives a smile or laugh to another friend.
Steve--you have a big heart and that's what counts....
Last edited by Ray1971; 01-17-2009 05:37 PM.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | I think it's completely understandable for someone to get away from the subject of cancer. No need at all to feel guilty. Just mho.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Steve,
I'm so sorry to hear that you are again facing a recurrence. There is no need to apologize. No one here will ever judge you. The fact that you have been helped in the past is a wonderful thing. Your experiences can surely help others and your contributions in the future will be greatly appreciated.
I wish you success in your treatment and look forward to your reports of success.
Jerry
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: Mar 2002 Posts: 4,918 Likes: 64 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 64 | While I don't think that guilt is appropriate, your coming back is a sign of something much more important - growth. There is nothing more noble in the human spirit than helping others. I want to personally thank you for your willingness to do so, especially at a time when you still have your own dragon to slay. It speaks volumes to the kind of person you are.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Steve,
Unfortunately we need all the help and experience of others than we can get so welcome back. I wish only Brian had to post once or twice a week because there was no one being Dx'ed and this site had 12 members.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Steve
Who among us at OCF would not wish to live in a world without cancer? And for most folk, that's exactly the world they live in. Oh sure, they sympathize when neighbors get cancer or cry with BaBa WaWA interviews with celebrity cancer patients, but day to day, cancer is not an issue. I miss the "old normal" Taking a break from dealing with this every day is understandable. Welcome back from your sabbatical.
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | Steve, I agree with the other voices already heard in this thread ... it is not selfishness that kept you away while you were doing well, so don't let guilt rob you now... I am glad you had some "cancer free" time to just enjoy life and get away from the topic. Even the old, wise posters on here need to have the same every once in awhile, even if they like to help out in the forums. Cancer should not rule a person, whether it is struggling thru it or helping others thru it. Life needs to be lived too. I am sure many will gain invaluable help from your input and will be thankful to have you around. Thanks for all you do, and mainly thanks for being you  Blessings to you.
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
===============================
"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Steve.....Welcome to the world of humans....Who among us is perfect??...I've done the same thing, but I keep coming back bec. I occasionally have something to add, and I still am unsure enough of my status to know that I need to "belong" to this group. It's so full of caring, uplifting, courageous people that I just don't want to lose contact. I think that I gain far more from it than I offer in return. In my thanks for my current good fortune, I hope that I can be of some help to someone else, but I worry that I am not regular enough to do that.
Steve, welcome back, and don't add guilt to your other problems. Let us help...again. and return it to others when you can. XO
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Aug 2006 Posts: 294 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2006 Posts: 294 | Steve,
I think that maybe you backed away from the site so as not to be reminded of this disease as long as you were getting clean checkups. I think I experienced the same emotion from time to time thinking that connecting with the site on occasion was too much of a reminder. Sort of like out of sight, out of mind.
Good luck with your returning challenge.
Bill D.
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.
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