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Joined: Jun 2007
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Living real life has to many people that don't understand it until it's too late..To understand it, you have to have lived thru it with a close friend or family member . I have that anneurysm surgery to go thru soon and I feel as if the OC is back too. I talked this over with my daughter and told her my feelings about the double barrel I have pointed at my chest. If I do have OC back, I'm just going to let life for me run it's course with no more surgery. I'm not going to flip a coin and pick one. Laying down on that table for the 2nd go round with this anneursyn is just like adding another barrel to that gun.Very risky ..


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Forgot, I have my 3 months appt monday the 12th to get this mouth checked again. His decision affects mine.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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People are cruel....some times though I dont believe it is with intention..I think it is more ignorance. Of course everytime I speak of my cancer to new people the 1st question is "Do you or did you smoke? " Depending on my mood ..somtimes I humor them and tell them .. No I chewed .

My professors at school ( one a Dr and one a Nurse ) that was there 1st question. We talk alot about my medical issues ( as I am in medical studies ) and I guess an Interesting case .LOL

I share my story to educate others ..not for sympathy ..dont feel sorry ..feel inspired for at this time I have overcome cancer . stroke , tia and now weird neurological issues and I am a mom of 5 and 37 years old. I am not a hero or a saint ..just a person who has had an illness that changed my life yet made me stronger and more goal orriented and compassionte.

I think the crulest ( without intention ) thing that was said to me was last spring .... I went to my BEST friends grandmothers funeral . I soent alot of time in tha funeral home over the last few years it seemed and the director said to me " sorry to have to see you hear again , this must be hard on you." ( he knew my history and was close to all my family I had attended for ) Well My Best friends father said " Well I really thought for a while there we were gonna be here for you ! I am surprised we weren't " I didnt know what to say at that moment ..my Best friend was Mortified , her husband wanted to choke him . I just responded well there was a time we werent sure how things were gonna turn out .

Shar


T1NoMo Left lateral Border of Tongue. 35 at DX
Partial Glossectomy , Modified Radical Neck Dissection
All Nodes Clear... No radiation
Frey's Syndrome & Trigeminal Neuralgia as result of surgery
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Shar you are truly compassionate and are understanding...I love the way you worded your post. It is important that our experiences with cancer would educate and potentially inspire people to believe that anything is possible even beating this horrid disease. And I also agree that suviving has changed my thought patterns and ideals. Unfortunately it can also effect long term relationships because you change so much. But it is a road we must travel and adapt...


Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
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Jim, Im so sorry to hear of your suspicions about OC. Do you really think its back? Are you having any symptoms? Do you think maybe its just sheer worry about your other problems that makes this creep up on you?

Please have faith that you will be healthy one day again. Its always kinda tense for me around the time of rechecks. Yesterday I had my PET scan, dont think anything is wrong, but just like you, everything upcoming depends on the results.

Your OCF family is always here for you. We will be right there in your corner with you on Mondays check up. This year has got to be a better one for both of us, the last two sure were rough.


Christine
SCC 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 smile
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EZJim

OH NO. Boy do I hear you about saying enough is enough. But in my post on Patrick Swayze, I forgot to mention how the snippet I saw also showed him stressing the importance of never giving up hope even though "You can bet that I am going through hell"


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Sep 2008
Posts: 489
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EZ Jim how fortunate that you have an appointment so soon. I hope that you are wrong about the OC. How soon is the surgery for the anneurysm??

Shar I am asked the same question - people give you this look like they are judging that you did smoke as they ask it and then do not really listen to your answer once you say yes. I try to tell them that I had some other risk factors and that people with no risk factors get OC, but most just assume that it is due to being a former smoker.

The cruelest comment I have received was from my mother when I was diagnosed. She said, "well you did it to yourself." She has always been a very empathetic and supportive person LOL


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
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Don't you find yourselves surrounded by wonderful people as well. My husband wasn't a smoker and that question came up often. I didn't read into it as much as people have here. It's a fair question as our treatment team was determining Dan's risk factors. And, sometimes, I think our non-smoker friends wanted to know if this awful beast could hit them too and thus the questions. People are going to ask...but, that doesn't mean you have to go on a guilt trip or get angry. Just stay level and focus on the future. Because whether you smoked or not...the past is the past...it's your back story...and, right at this moment you are creating your new story. Hopefully one of health and happiness. And, tolerance for people who don't understand OC or hwo to communicate to someone who is ill. :-)


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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wow : nice thoughts for the new year. Mhupe, you sound like one of those people whom the cancer ordeal has deepened and made better. I identify more with those of the "Cancer made me a shallower person" genre (my favorite cancer cartoon book) but then I favor humor to alleviate the fear and pain. You are right though that the important thing is to start a new story to go along with the "new normal". I think though the difference between your experience and many others here is that for far too many OCF posters, unfortunately the answer to your first question of being surrounded by "wonderful people" is a resounding "NO". The major attraction of this forum is the wonderful people in this virtual neighborhood.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Nov 2005
Posts: 1,128
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One way to get their attention would be to say "I hit all the risk factors; I smoked, drank and had sex!" and give them a little guilt feedback to chew on!

The technique I developed to personally evaluate how my life is going is to occasionally put on the mental brakes, step back and examine what I am currently worried about (I'm *always* worried about something!) -- If it's not serious on the great scale of things, then I conclude that things are going well! If it is serious, then my concerns are justified.

Clearly, the great scale of things has been altered by putting cancer stuf on it! But I'd been watching one well-biopsied spot on my tongue for 15 years before an actual tumor started growing.

Of course, one thing that helps considerably is knowing what can be done and what can't and this forum has certainly been a Godsend in that regard!!


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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