| Joined: Apr 2014 Posts: 3 Member | OP Member Joined: Apr 2014 Posts: 3 | 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. | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | 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
| | | | Joined: Apr 2014 Posts: 3 Member | OP Member Joined: Apr 2014 Posts: 3 | 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
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | 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.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | 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.
ChristineSCC 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 | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | 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
| | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | 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#Post16364409/09 - 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!
| | | | Joined: Apr 2014 Posts: 3 Member | OP Member Joined: Apr 2014 Posts: 3 | 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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