Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | I have to jump in and agree with Glenn. It is perfectly cool to share your personal experience, strength and hope. Many times however, it is not made clear or disclaimed in any way that every patient is different and that HAS to be stressed otherwise instead of helping people we are, in effect, scaring the crap out of them when they need to make critical decisions -and not fear based ones.
The forum tends to be unbalanced as it is, because many who have easy times this with disease and treatment are reluctanct to post out of guilt or they feel bad for those struggling. Additionally, many who have gotten through this relatively unscathed, just want as much distance as they can get from cancer and any aspect of it.
I don't have a stiff neck, didn't have a PEG, have ALL my sense of taste back, love salsa and hot and spicey food, practically normal salivary function, kept all my teeth, no surgery and I had an very advanced and huge tumor. I really don't like gloating over this, I'm waiting for the "shoe to drop" just like many others out there.
The point being, that we are all different and all respond differently to treatment and this disclaimer must be added, in all fairness, especially for the benefit of the new people here. I believe that this is the point that Glenn was trying to get across and not a personal attack on anyone - but a concept that must be stressed.
We must remember the broader picture here - we are here to walk along side people going through this, whether they are patients or caregivers. We must be sensitive how we share our information, and even though we are not doctors, try to provide as balanced a perspective as we can.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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