| 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 | Welcome to OCF, Wendy! Im soooo very sorry to read about what you have been thru! Oral cancer (OC) can be a debilitating, disfiguring beast!!! Ive gone thru it 3 times in 3 years . I completely understand the shock it can be when everything appears to be ok but you are actually dealing with a recurrence, another one!
Many oral cancer (OC) patients/survivors get depressed, caregivers too. Its too much for some to process all at once. Theres nothing to be ashamed of by missing your former life. Its not easy to pick up the pieces and move on after everything you have been thru. The way the world is overly fixated on looks sure doesnt help either if you have any prominent scars or visible signs of your illness. Those changes arent so easy to get used to. Even worse is when people openly stare at you in public which can make someone feel pretty bad too. Im not sure if you have considered talking to your doctors, your ENT, or a plastic surgeon to see if anything can be done to change the drooping part of your face. Just be very selective with who you go to.... they MUST be very well acquainted with OC patients/survivors and the effects of radiation on proposed surgery sites.
You definitely have come to the right place by joining our group!!! Ive had life changing surgeries, then complications that left me disfigured. I didnt recognize myself in the mirror the first time I looked. I was told by my doc and plastic surgeons, I needed to wait until I was at least 1 year post my major surgery to have any reconstructive surgeries done. I waited 14 months then went back asking for changes. After twice submitting the surgery to my insurance company and getting denials, both my ENT and plastic surgeon wrote letters to my insurance company insisting the requested procedures were the result of cancer and were medically necessary and they need to be covered. The reconstruction surgery was not nearly as bad as other surgeries I had been thru. The surgery was a definite improvement but I still was disfigured, just not as bad as before. I had been a pretty lady when the whole cancer problem began and after my 3rd round of OC, I was a very different person not just physically but mentally as well. Its a very hard pill to swallow when your look different in a society thats all about appearances. Im no expert but somehow I came to terms with my fate during my 2 month hospitalization for having the mandibulectomy (jaw removal surgery) and complications causing my disfigurement. Every day I told myself (in my mind) ... everyones looks change, they fade as people age which every person eventually does, even the prettiest young lady will eventually look not so nice when she gets old. The most important thing I focused on is telling myself is no matter what happens, Im still the same person, its just now hidden on the inside and nobody can take that away from me, Im still me. When I went out and people stared at me, I would hold my head high, ignoring the stares and silently tell myself over and over... Im still me, thats part wont change and everyone eventually looks different than how they did in their younger days. If I can mentally handle the disfigurement, I am certain you can overcome it as well.
OCF's message board is like a gigantic long distance family where we all understand and support each other thru good times or bad. No matter how dark your day may seem, theres always someone here who will understand where you're coming from. Hang in there, Wendy!!! Time really does heal all wounds or at least make them more manageable.
(((HUGS))) 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 | | |
Forums23 Topics18,265 Posts197,179 Members13,363 | Most Online1,788 Jan 23rd, 2025 | | | |