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#142721 11-09-2011 04:10 PM
Joined: Mar 2002
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OCF Founder
Patient Advocate (old timer, 2000 posts)
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,918
Likes: 70
We've had conversations here before about Mr. Ebert, and many of us have attempted to contact him without much success. That does not bother me that he prefers not to formally do something through OCF that might benefit others. This is mostly because he still does much in his own way. I have to admit that I am quite taken by Roger's articulate nature. So I read his blog routinely, and I still follow his movie reviews. Today he chose to share a great deal of details about his cancer journey. It is an amazing piece, not just for what he has gone through, but for the way in which he has come to understand the "new Roger." There are some pieces in there that I absolutely have to steal when I speak, because he says them better that I have ever even thought them.

This is going up on the OCF news feed tomorrow and will therefore get read by thousands who subscribe to it. But since I know that many here do not choose to sign up for the free feed, I didn't want people to miss this. So I am putting up a link to something I think you all will enjoy. In the end it is a triumph of spirit over the physical, and a great story of personal acceptance, something that not everyone, even the healthy, reach.

http://oralcancernews.org/wp/roger-ebert-describes-his-cancer-journey-and-a-path-to-acceptance/



Last edited by Brian Hill; 11-09-2011 05:14 PM.

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.
Brian Hill #142753 11-10-2011 05:37 AM
Joined: Jun 2007
Posts: 10,507
Likes: 8
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: 8
Excellent article! I have made a comment on Mr Ebert's blog and surprisingly received a response back from Mr Ebert. He is an amazing man! Its a huge hurdle to overcome self pity when facing such major disabilities. I consider myself very well adjusted but I am far from feeling the contentment Mr Ebert has achieved. Thanks Brian, for posting this with the link for Amazon to purchase the book.


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
ChristineB #142997 11-16-2011 11:18 AM
Joined: Jun 2011
Posts: 188
Senior Member (100+ posts)
Senior Member (100+ posts)

Joined: Jun 2011
Posts: 188
After reading this, and giving it much thought, respect his desire not be a spokeperson and understand it. Connected well with his summary on how the web is, "responsible for helping patients take control of their own diseases" and how important it is to balance new found knowledge with science.


Caco
CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!
Caco #143038 11-17-2011 11:10 AM
Joined: Mar 2002
Posts: 4,918
Likes: 70
OCF Founder
Patient Advocate (old timer, 2000 posts)
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,918
Likes: 70
Had a breakthrough with Mr. Ebert yesterday, and will be emailing him today. While I am not at this time going to ask him for anything, it is an opportunity to open a dialog with him about so much. His coming out publicly on the cover of Esquire and the TV interviews, did a great deal for others, that he isn't likely aware of. He is an example of someone with extreme issues after surviving, that is thriving and prospering. More than that he is such a good example of someone who has come to terms with the "new Roger," something that we all struggle with to some extent as we face our new lives with some compromises. So I am just going to thank him for his words and example for now. Perhaps in the future he may wish to do something for the cause publicly, or in writing (his strength today) but I just want to open the dialog for now. With his celebrity and visibility he can, and has, have a lot of clout in the wold of awareness.


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.
Brian Hill #143039 11-17-2011 11:17 AM
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Brian

It couldn't hurt to let Roger Ebert know that all the posts here at have shown just how appreciated his writings are by the OCF family. Every post has been positive and that is no small thing with over 7,000 members. I think he would enjoy knowing that he is a respected and inspirational figure to us.
I often reread what he wrote about not eating and the "positives' of a feeding tube when my positive attitude falters. His latest about the neutron therapy reminded me so much of my "discovery" on the internet of Erbitux (a year before I found OCF where I could have learned it isn't really a miracle drug at all, except in the sense that if it works, it's a miracle.)
Charm

Last edited by Charm2017; 11-17-2011 11:20 AM. Reason: typos

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
Charm2017 #143044 11-17-2011 02:10 PM
Joined: Jun 2007
Posts: 10,507
Likes: 8
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: 8
Brian, its wonderful news that Mr Ebert and you are corresponding. He is a great inspiration to me. It would be a huge deal to have Mr Ebert helping to spread the word about oral cancer and its devastating after effects.


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
ChristineB #143047 11-17-2011 03:12 PM
Joined: Sep 2009
Posts: 701
Likes: 1
"Above & Beyond" Member (500+ posts)
"Above & Beyond" Member (500+ posts)

Joined: Sep 2009
Posts: 701
Likes: 1
I just read the excerpt from Ebert's book. His writing gives me new insight to what Clark experiences particularly regarding gathering or not with friends and family over a meal. Thanks for posting this, Brian. Definitely getting the book.


Anita (71)
CG to husband, Clark, 82,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22, 6/25
PEG 7/21
Botox injections

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