#15539 05-30-2004 02:46 PM | Joined: Apr 2004 Posts: 7 Member | OP  Member
Joined: Apr 2004 Posts: 7 | Well I made through and NO Feeding tube, I lost a total of 28 lbs. doctors were not happy but they don't want to count the fact that I put weight on intentionaly when I found out what I was up against. Aside from the weight loss the docs are calling me the poster child for this cancer. I'm glad to be home after staying at the Hope Lodge in Cleveland for 5 weeks (Fantastic place and a real help to those who need it) I go back in two weeks for blood cell count check and back two weeks after that to see the surgon and have a CAT scan to see if surgery is needed.
I just want to say to anyone who is faceing similar treatments to KEEP YOUR CHIN UP. Attitude is everything. It's only a short time out of your life and it will seem like it flew by. To me it only felt like about 3 weeks. Speek up if you have any discomfort, there is no need to suffer, the drugs they have today are fantastic but you have to comunicate with those treating you. KEEP TRACK of what is said and pay attention to what's going on around you. It's very important to know what is happening and why. ASK QUESTIONS don't be afraid to speek up if you see something that is not right. People make mistakes and you knowing the procedure will keep mistakes to a minimum. The doctors were impressed at what I knew about my treatment (Nurses were not impressed I caught then in several mistakes) anyway that part is over now and I just have to keep from going stir crazy waiting for my neck to heal so I can go out in the sunshine (and back to work) and enjoy life.
When someone asks me how I did it I tell them that I more or less brainwashed myself...I told myself that this thing was not going to defeat me. The chemo was not going to make me sick (Keep moveing DO NOT lie in bed Get Up and walk around and make sure your pumps have good batteries!)Make little chores for yourself and try to do your normal activities, I took care of myself and didn't wait for others to wait on me. I actually drove home 80 miles each week and cut my grass. Distractions like that will keep you going.
Anyway I'll check back and keep you informed. I hope the news will keep getting better but I'm a realist and I know what I'm facing, no matter what happens I will fight to the end. People need me so I must get better! Good luck everyone! | | |
#15540 05-30-2004 04:41 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2002 Posts: 458 | Indy, glad to hear that you made it through the treatments, hope everything goes ok from here.
When I was first told what I was going to have to go through, I too made up my mind that I was not going to let this kick me in the butt, but that I was going to kick IT in the butt and absolutely refuse to have any ill side effects. That attitude worked for a while until the pain got too intense and I couldn't eat or drink, still managed through with out PEG, etc, just wound up in the hospital getting fed by IV for a week while my tongue healed enough from radiation that I was able to eat again.
Point was, even though I felt bad, I still made myself walk the 5 blocks to the taxi stand instead of taking the taxi from the hotel, still made myself wander around a little bit during the day.
Part of this I credit to the pastor of the church I go to in U.S., an ex-marine who takes the same attitude in religion as he did fighting the enemy in the marines, and instilled in me the never-give-up attitude.
I was lucky though I didn't have some of the physical difficulties some are having, and am thankful for that. Just to let new people know, it's not always horror show, sometimes just darn difficult if you're lucky.
Bob S.
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#15541 05-31-2004 02:01 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Hi Indy,
It's great to hear about your results so far, and your terrific attitude. I agree that building in
"distractions" is a good way to help take your mind off the ugliness of treatment. My radiation was going on during prime golf season here in the northeast, and I remember thinking that it wasn't going to keep me off the course -- so with lots of extra sunscreen and a big floppy hat, I managed quite a few rounds until the latter stages of treatment when it finally got to be too much for me.
Keep your positive outlook -- we hope for only good news for you.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#15542 05-31-2004 04:18 AM | Joined: Apr 2004 Posts: 3 Member | | Member
Joined: Apr 2004 Posts: 3 | Hi Again
This is Eric. Just out of surgery. Had Partial tougue cut. Full neck dissection. T2 N2.
It's like a death and rebirth. I am slowly gettting my fuctions back. I Have a feeding tub in my nose. That should be taken out on Thrus. I have not been able to sleep for the last five ays.I get sticky flem caught in my mouth. This causing me to be tired.
Its good to be home. Can't wait to find my way back to eating before I go Into Radiation Treatment again. I was Thinking of going on a seven day cruise to Alaska before radiation what do you think of that?Its good to have you out there.
Eric | | |
#15543 05-31-2004 06:42 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Eric, Happy to hear that you are home and finished the surgery, take that cruise to Alaska, sounds awesome!!!! God Bless, 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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#15544 05-31-2004 07:24 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Hi Eric Congratulations on the end of the first part of your treatment.. Enjoy your cruise.. but don't go until you can eat your share of the food.lol.  prayers..love and hugs Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#15545 05-31-2004 07:32 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Hi Indy
Sorry we seem to have hi-jacked part of your topic here.. Glad you also have made it through the treatment.. your attitude..WOW I'm impressed.. hope I can do the same and find a way of distracting myself.. a gun and one bullet seems favorite at the moment.. (ok if you haven't picked up on my previous posts.. I'm a caffine and red wine junkie.. not sure how I will cope without either) Take Care
prayers.. love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#15546 05-31-2004 11:24 AM | Joined: Apr 2004 Posts: 7 Member | | OP Member
Joined: Apr 2004 Posts: 7 | No problem Helen I don't mind the hijacking. You can do it like I said Chin up. It's your life you just need to take charge of you sences, speek up when you need pain relief, and keep telling yourself that all this is a means to an end. Fight fight fight, I remember getting up in the middle of the night every hour on the hour to clear my throat and wipe off and reapply radiation cream to my neck, I would say to myself "OK get back in bed and get 60 more minutes of sleep" that's how it goes sometimes just one hour at a time. But it seemed to me that it was all over in no time at all. If it turns out that I need the surgery I will put all my concentration into getting the job done and healing as fast as possible... | | |
#15547 05-31-2004 04:55 PM | 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 | Indy,
I am glad you have made it through your treatments! You are right, it flies by and ends quickly. I hope for the best and a speedy recovery. Great advice, too!
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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#15548 05-31-2004 04:58 PM | 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 | Eric,
Glad to see you so pumped, too. Make the memories, go on the cruise if you feel up to it. Maybe even hijack me on the cruise!
Best wishes for your next step. It may get rough, but it will be done before you know it.
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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