| | Joined: Mar 2002 Posts: 4,916 Likes: 57 OCF Founder Patient Advocate (old timer, 2000 posts) |  OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,916 Likes: 57 | I don't think patients perspectives are by nature analytical. Most are far from it. I think that they are as you have stated practical. So what you have suggested to me as the composite of questions/answers yields the best possible USABLE information for new patients just broaching the questions. But besides talking about the timelines issues that all your questions reflect, some of them need to address, the simple answer to why is this happening to me, what can I do to improve the situation, and the not so pleasant to talk about - what if none of the above work for me?
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: Nov 2009 Posts: 212 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Nov 2009 Posts: 212 | I just recently went to a speach therapist. I was able to eat soft mushy food but if I drank water it would squirt through my nosw. They gave me some exercises that seem to help, at least I can sip water now. I am 9 weeks post tx and started the therapy at about 7 weeks
Steve
70 male, athlete...again
SSC of undetermined orgin , early july 09
40 tx radiation, 8 chemo cisplatin and ebuterx
finished TX in mid Sept 09
Clear at the 6 year mark!
Back to swimming, biking and running! just a tad slower
never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | | 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
I like those additional suggestions for coverage. Since you have compiled a wealth of responses already through this OCF forum, I will look them over to see about getting a rough draft for discussion posted so that the rest of the board can chime in with their experiences and hard earned wisdom
Charm
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: Mar 2002 Posts: 4,916 Likes: 57 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,916 Likes: 57 | Great! I think this is something that can be applied to some other parts of the main site.... a combination of vetted science based information, with a clearly separated real world perspective to add to what doctors many times do not seem to get or communicate to new patients.
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.
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