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| Joined: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Mike, welcome to OCF! Im sorry you have a need for our services! Sounds like you have alot going on now. Take it day by day and do your best to stay busy doing positive things to help make the time pass easier. Im sure you have friends and relatives coming out of the woodwork offering their help. Tell every one ... when the time comes you well let them know what they can do to help. Start a list and write down everyones complete contact info to use later. Its a good idea toi try having people take "shifts' staying with you around the clock during your hospital stay which is likely to be at least a week, possibly two. Even facilities with a "no overnight" policy often welcome friends and family who want to stay with their patients and help be their voice. Try to limit visitors as your resistance is likely to be compromised and you can NOT afford to pick something up from anyone who visits, kids are especially germy from being in school. Your helpers can interact with ther hospital staff o n your behalf and arrange for pain meds when you are in pain.
I suggest reading both here on the forum and many of the important subjects on the main OCF site as well. By learning about your illness, you will make for a stronger advocate.
If you have not already done so... seek out a second opinion preferably at one of the top comprehensive cancer centers (CCC) in the US. Surgeons cut and once its been removed you can never be pout back together exactly as you had been before so choose wisely!!! With such a complicated major surgery, you will want a highly skilled surgeon who regularly treats oral cancer patients and is not new to this sort of complex issue.
Best wishes!!!
ChristineSCC 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 | | |
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