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Joined: Nov 2008
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Bill_G Offline OP
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Thanks to everyone for their replies. Part of the problem may have been that my radiation oncologist was pretty heartless. I have complained to the radiation chairperson and I will start over with a new radiation oncologist. I am also trying to find a therapist or pschologist to talk this over with. This phobia keeps getting worse all the time and I need to deal with it. I will let you know how things turn out.


59 Male 10/06 SCC Stage 1 tongue cancer. 12/06 partial glossectemy right side, removal of lymph nodes. Margins and lymph nodes clean. 09/08 recurrence SCC Stage 1 tongue cancer. 10/08 partial glossectemy right side. Margins clean. Radiation recommended.
Bill_G #83805 11-09-2008 08:35 AM
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Bill,
There should be a patient navigator, a medical social worker or an omsbudman where you are being treated. These people can help you with this. Maybe the new RO will be helpful.
For now, I suggest that instead of trying to work on your claustrophobia which could be along process you should concentrate on getting through the mask and radiation. The suggestions offered by those who have been through this issue seem to be very good. Perhaps the best for you would be the nose and mouth holes.
There is a difference between overcoming a phobia and controlling it. I was terrified of fire and still am. In college I made my own therapy which consisted of having the courage to hold a lit cigaret, putting one in my mouth after a friend lit it, and finally lighting my own. This was not an over night process and now I can actually strike a match but am still shakey when one begins to burn close to my fingers. I get that physical internal shaking even when someone else is letting a match or cigarettte burn down to what I feel is a "dangerous level." I have found what I think is the source of this irrational fear but that is irrelevant to the fact that I will probably always have this phobia.

Another thought: Why don't you make your own sign(s) with some pictures such Munch's "The Scream," Darth Vader, Houdini ,... and/or some slogans or phrases that you may think would help.
Good luck,
Malka


SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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Malka #83863 11-10-2008 06:24 AM
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Malka,

Everyone gets "shaky when one begins to burn close to my fingers". That's normal so maybe you've overcome it.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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