#16655 12-13-2004 03:33 PM | Joined: Dec 2004 Posts: 7 Member | Member Joined: Dec 2004 Posts: 7 | hi....i just lost my father to oral cancer. he was only 51 years old. it was very difficult to watch him go through this. he went through radiation, chemo, and surgery...there were times he would have to take pills that he couldn't swallow....and at the end, he could only talk out of the side of his mouth. when i saw how big the tumor was, i was shocked. my mom had called me and told me he was talking to people that only he could see. it still didn't hit me....even after i saw him, i just couldn't see him dying.  i miss him...i never thought i would see a day like this, without him....he has a granddaughter, whom he loved very much. he will always love her.....
Pookie :-)
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#16656 12-14-2004 04:54 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | Hi Pookie, so very sorry to hear of your Dad's passing from this dreaded disease. Be strong and look up to Our Lord for strength, hold tight to your memories! 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---
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#16657 12-14-2004 06:25 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | Dear Pookie please accept our condolences, I can only imagine the pain you must be feeling. At least now your Dad is back to the man he was and is free from his pain. Take Care Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#16658 12-14-2004 07:31 AM | Joined: Dec 2004 Posts: 7 Member | Member Joined: Dec 2004 Posts: 7 | hi carol l. thank you......i always have to think that he is not suffering anymore, but at the same time i guess i am selfish because i wish he was still here.....he worked for the boston bruins...he drove the zamboni...so i think that he is now driving around cleaning the ice in heaven!!!! and he is doing it his way!!!! thanks again!!!! look forward to talking again soon!!!!
Pookie :-)
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#16659 12-14-2004 07:35 AM | Joined: Dec 2004 Posts: 7 Member | Member Joined: Dec 2004 Posts: 7 | dear marcia, hi thank you for your condolences. it is very hard....i keep thinking that he is still aorund barking orders at my mom!!! he was always good at that!!! the doctors say that he was stage 4 when they caught it....at least i think that's what it was....i am happy to hear that your husband is doing well!!!! i can imagine how hard it is for you.....i had to see my mom take care of my dad. that was hard just to watch. even at the end i think it was even more difficult to watch!!! i am very greatful for the time i had to spend with him!!!! thank you again...talk to you soon...
Pookie :-)
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#16660 12-16-2004 12:20 PM | Joined: Dec 2004 Posts: 9 Member | Member Joined: Dec 2004 Posts: 9 | got the biopsy back, it came back as squamous cell carcinoma, stage 1 or 2. It sounds as if they think they can get it all with a little more cutting, a quarter-sized area was mentioned. I am going to see specialists next week, one at the Mayo clinic here in Phoenix and another two that are highly recommended. any advice on what questions to ask/what to look for and expect?
Thank you,
Randy K
SCC, Stage 1-2, tongue, surgery 1-5-05.
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#16661 12-16-2004 02:03 PM | Joined: Dec 2004 Posts: 7 Member | Member Joined: Dec 2004 Posts: 7 | hi randy...i'm pookie....i just lost my dad afew weeks ago. i am sorry to hear about your diagnosis, but it seems like they may have caught it in time. when my dad was diagnosed i believe he was stage 4. i think it took me a long time to deal with my father's diagnosis. i had just had my daughter and i was getting married. i am glad i had him for those important times in my life. now that he is gone, i still can't believe it!!! i hope all goes well with you!!!! it seems like the doctors know what they can do...good luck!!!
Pookie :-)
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#16662 12-16-2004 04:05 PM | Joined: Dec 2004 Posts: 9 Member | Member Joined: Dec 2004 Posts: 9 | Hey, pookie-- so sorry to hear about your Dad. I can only imagine what you must be going through. I am doing OK, I know I am lucky to have it caught at this stage. I am keeping a positive attitude. The doctor I talked to at first said most of them they see are far more advanced than mine.
SCC, Stage 1-2, tongue, surgery 1-5-05.
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#16663 12-16-2004 04:42 PM | Joined: Dec 2004 Posts: 7 Member | Member Joined: Dec 2004 Posts: 7 | hi!!! you have to keep that positive attitude!!! i think my father kept a positive attitide until just about week before he died!!! my mother had told my father to go to the doctors because he had a sore throat....this was in oct of 2002. he didn't go until march of 2003. if he went to the doctor when she told him, i think he would've been alive today. he had a sore throat for 5 months. but he is stubborn. i hope everything works out real well for you!!!! please keep in touch!!!
Pookie :-)
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#16664 12-17-2004 10:04 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Pookie,
I remember when my mom passed away 4 years ago at about the same time as your dad. I also remember the close to 100 doctor visits she made over a period of almost a year as she gained almost 60 lbs and went from a size 4 to a size 16. The doctors kept telling her "at least you don't have cancer". As it turned out, she had over 40 lbs of tumors removed twice and lived about 19 months after diagnosis although she withered away to about 50 lbs by the end.
My point in all this is that four years later I have thought of almost a million "what if" scenarios but deep down I just know it was really her time to go. I surely feel your pain and remember some of those feelings in me, too. I wish there was something I could say or do that would make it better for you but I can't. From the love I see you had for your dad, I know he felt it, too. He was very fortunate to have you and I am sorry you had to see him lose his battle with this horrible.
I still hope you can have the best Christmas possible under the circumstances.
Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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