"Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Liz,
I think you had the right train of thought from the beginning. There is a tremendous need for information on OC from the caregiver�s perspective. As a patient, there are a ton of places I can go to get information about my condition (OCF being the best of course). Caregivers have so few places to go that handle this disease from their perspective. I expect there are few sources of information on what is going to be expected of them and what role they can and sometimes have to play as treatment of the patient progresses.
I think this should be headed up by a caregiver and primarily directed at caregivers with support from the patients (talk about role reversals). I think that a manual for caregivers from a caregivers perspective, with supporting stories from patients, doctors nurses and the like that can give the caregiver some direction is sorely needed in the OC world.
You hit the nail on the head, give me a hammer, and as a patient, I�ll help build that caregivers manual with you.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
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