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Joined: Aug 2003
Posts: 1,627
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Aug 2003
Posts: 1,627
I want to make sure that we haven't scared Amy and John about the trach. Obviously, no one would volunteer to have one, no one wishes for one. Obviously there is going to be fear related to this. BUT, 99% of my fear came from not knowing what to expect, not having any knowledge about a trach. I didn't find this board until I was finished with radiation, until then I had no contact with anyone that had been through the ordeal I had been through. I speak with great confidence when I say that my fear would have been greatly reduced if I had been empowered with knowledge of the trach. Not how it was put in, not how to suction it, not how it worked. Knowledge of how it would make me feel. I have always said that I can handle anything if I just know what to expect, I hate to be blindsided. The trach blindsided me, I wasn't prepared for it. If I had to do it again, I would breeze through. So, with that said, I hope that our knowledge will lessen Johns fears rather then increase them!
Love,
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
Joined: Jan 2004
Posts: 1,116
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jan 2004
Posts: 1,116
Thank you Minnie, well said. I felt bad about my post after I read it again, my intent was not to scare people about the trach. Like you said, it was more fear of the unknown, I guess I missed the part when my oral surgeon told me I would have the trach, I was in shock as it was and probably wasn't listening to details. I didn't find this board til way after treatment. John,you will get through it, trust me, we did. Love, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
Joined: Apr 2005
Posts: 2,676
JAM Offline OP
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,676
You all are not scaring me. I'm like Minnie- I just don't do well being blindsided. Before John's 1st go round with this, he didn't want to know anything about the surgery and there were alot of questions I wanted to ask the Doc, but did not because John was always in the exam room. To be honest, most of how I learned to care for him after surgery and during rad tx. was from reading here and posting questions. I am going to move us back to Currently in Treament after our Feb. 1st presurgery meetings with the Docs. So don't lose me. Love, Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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