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#179397 04-16-2014 09:05 PM
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pelican Offline OP
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I am living with cancer right to the end. Yes, I am terminal and I want to help anyone who needs information as to the mental, physical, and spiritual aspects of my journey. Until you have walked in our shoes over a long period of time, no one can truly understand. Part of that is our fault for not speaking out and speaking the truth. How can we expect loved ones, caretakers, and even professionals to know if we don't tell them the way it is.

pelican #179398 04-16-2014 09:43 PM
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Welcome - I'm sorry for your dx. There are several people here with a similar dx to yours. I think you will be an invaluable member. Hugs and so good to have you join.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
pelican #179399 04-16-2014 09:53 PM
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Many people will not understand, anymore than my family or friends do, that 16 of my relatives have died of cancer and I'm the last of the line. The word cancer and all aspects of it have been a major part of my life. I had made up my mind years ago I would not fight it. I didn't an I am dying. Mentally I have been prepared for this due to family history. What I wasn't prepared for I wanted to know everything and I couldn't find but a paragraph here and a page there Thus, I wrote 10 chapters for my hospice to give to their patients on all the stages,tips on everything, as well as every subject I thought might help others.
Now I have added 20 more chapters and it is online free for anyone to read...patients, caregivers, and professionals. I can't put the url on here but if you send me an email, I will be more than happy to give it to you.
Cancer doesn't just affect the person who has it. As most of you know you have loved ones and friends that don't understand and have no idea how to act around you. They are worried. You are worried. People tell you at first, "just call me and I'll help in any way I can". But they are alive and don't want to deal with any part of it. They become pretty scarce. The phone calls quit, the mail box no longer has greeting cards in it, etc. Part of that was my fault. I chose "no treatment" and they thought I was a coward.
But to make things worse, I was old I had 8 months to live. I believed the Dr. as he is professional cancer expert. So, I started cutting myself away from people so they didn't have to endure along with me out of obligation. I put everything in order, gave everything I owned away to family, friends, and the homeless. Sold my car and gave up driving due to all the opiods I was on. But I didn't die in 8 months. It is now a year later. I was very angry, like a child having a temper tantrum. How in the world do you go back wards?
I finished the book and got it online. Now I only hope I have the time and enough good days to get it out all around the world.

Last edited by ChristineB; 04-17-2014 06:22 AM. Reason: removed religious references
pelican #179404 04-17-2014 05:10 AM
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What type of cancer do you have?


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.
pelican #179407 04-17-2014 06:23 AM
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Im very sorry to read about what you have been thru. I cant imagine what it has been like for you.

I also would like to know what type of cancer you have.



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
pelican #179412 04-17-2014 10:03 AM
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"OCF Canuck"
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Are you sure that you're Incurable?


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
pelican #179413 04-17-2014 10:05 AM
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Hi Pelican,

First, I've got one of those diagnoses also; I've been Stage IVc ever since my first set of distant metastases (in my liver) back in Feb, '12.

I would also be interested in knowing what the details (to the extent you feel like sharing) on your own variety of cancer might be, how long you've been living with your diagnosis, and for that matter, how old you are. For the record, I will be 75 in May (if all goes well, naturally...)

And finally, thank you for offering to share your experience(s). If you'd care to share, I'd be happy if you'd send me the URL you mentioned.

Good luck to you,

Bart


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
Cheryld #179420 04-17-2014 07:50 PM
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pelican Offline OP
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Thank you. I only wish I had found this website a year ago. I dearly hope people will email me with questions or comments. Have a wonderful Easter.


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