Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
Joined: Jan 2014
Posts: 8
Member
OP Offline
Member

Joined: Jan 2014
Posts: 8
I know I am fortunate not to have a PEG, but eating is such a dreadful task & so frequent that I am not sure I can keep this up. It has only been a year & it is all I can do to get up in the morning & force feed myself. I am jealous of everyone I see, but at the same time I hope they never have to know what this is like. When my friends see me eating, they congratulate me on how everything is back to normal. The right side of my tongue (flap) is so much thicker than the left & the ridge dividing them makes it so hard to talk without sounding like a blithering idiot. I used to sing solos in church, but now I sound like a bleating sheep. It gets so depressing, but I know somehow I will get thru this in time. I have my hopes pinned on a clinical trial at NIH in Bethesda, MD which will start phase II in November. If it gets approved it may help us get some saliva function beck. I know it is only a chance & don't want to set myself up for a let down. Sorry for the pity party, but I don't really have anyone to talk to who understands.


58 yr old male, SCC left side of tongue 2/13, partial glossectomy, flap, 30 IMRT, 6 Chemo. Recurrence 10/13, lymph node removal, Brachy therapy 100, pec flap.
Joined: Apr 2013
Posts: 319
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Apr 2013
Posts: 319
This is long, so it's two messages, this being the first.

Howdy. I'm Bart, a married male. I'm 75 today, May 10th. I'm here to offer support from a "BTDT, got the shirt" fellow (and incurable) patient.

On Monday, I go in for a CT with contrast to see how the effective the radiation to the metastatic tumors in my liver (my 4th distant Metastases) and a lymph node between the liver and my stomach (5th distant metastasis) has been. You probably know what the significance of those distant metastases is, but just so you know, that puts one in Stage IVc with a 5-year survival (from the diagnosis of any distant metastases) rate of Zero.

For what it's worth, this was not fun, but compared to getting gut-shot (I took two .32 rounds to the gut in 11/67 up in Pleiku, RVN) it was a walk in the park. One of those rounds cut my Iliac artery and I bled-out at the scene. They gave me 18 pints of whole blood and the doctor who admitted me from Triage said that there was no way to have survived that as rigor-mortis should have been LEAVING my body before he got to me!

The other round entered about 1.5" above my naval and hit my spine dead on before it ricocheted around and embedded itself in the back of L3. That bullet took out the nerve-ends of the nerves that control the muscles in the right hip, which now provides no help in balancing and I cannot rotate the hip to the outside.

A third round went directly through my right sciatic nerve and my right leg, and I have no control over any of the muscles below my right knee. My right foot simply terminates my leg, I have no control of it.

Last edited by Bart; 05-10-2014 04:56 PM.

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!
Joined: Apr 2013
Posts: 319
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Apr 2013
Posts: 319
(second of two parts)

A fourth round went harmlessly through the inside of my right thigh.

I've also had my chest crushed in a high speed auto crash (145+ mph) and was brought into the Army hospital at Ft Sill, OK one year before I got shot. I had a "Flail Chest" which was definitely painful because unlike most "broken ribs," mine were so violently broken that the rib-ends were all completely separated and overlapped, shredding my right lung in the process. As a consequence, my right shoulder is about 1.5" forward and 1" down from its original location, and I have a bony ridge under my right scapula.

I got shot on the 5th of November, 1967, and after a brief hiatus in the states, I was back in Vietnam before the end of February, 1968. Before my return, I had to have my temp colostomy closed and learn to walk again.

If you would like my advice on coping with these problems (which I call "Life's footprints,") I would suggest working diligently on cultivating the "Soldier's/Survivor's attitude" with respect to the losses of function that are so depressing to you at this moment.

That attitude is taught to all new soldiers in Basic Training, but not especially identified as a "Soldier's attitude." It is summarized by the following commands:

1. Observe (the situation you are in and the factors that affect you)
2. Identify (those factors and the specifics about them)
3. Assess (your situation, the external situation and the factors affecting both)
4. Adapt (to the changes in you situation, including your present physical state) and finally the most important:
5. Overcome (any obstacles between your current state and the state you desire to be in.)

Central to the success of this is your attitude. To succeed, PROGRAM yourself. Put your doubts aside, I'm proof that it works. Give yourself a continual stream of cheerleading and tell yourself that you can and will overcome this.

There are techniques for overcoming fear, such as maintaining a neutral mind as you go to your team to learn where you stand, and what your prognosis is, but this message is about developing the Survivor's attitude which is to think, not in terms of what you have lost, but in what you have left and how you can use that to live your life happily.

That's important enough to repeat, the key is to think in terms of what you have, not what you have lost. Put that later bit completely out of your mind and do not let it reappear.

The fact is that you can do this, but only if you actually invest the time and effort to do it.

If you are interested, simply respond with any questions you might have; or if not interested, blow this off with no hard feelings.

I wish you the very best and every success,

Bart

Last edited by Bart; 05-10-2014 05:03 PM.

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!
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
Offline
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
Great post Bart.
Attitude is everything.
Kris has had to make huge adjustments. Neither of us look back. Just so grateful for life.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
Agree, great post, Bart! Life is about what you CAN do, not what you can't.


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
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
Everyone is different, and not being out of treatment for a long duration, as it can take up to two years to recover, and with a 2nd recurrence, effects your physical and mental well being, but time heals all wounds, hopefully. My thinking is different at each phase, having had 7 cancer opportunities, from diagnosis, pre-treatment, during treatment, and post treatment, and the longer out from treatmnt I tend to forget how bad I was or was not, and concentrate in the now. As with any loss, there are different phases one may go through such as the initial shock, blame, anger, and finally acceptance, to overcome cancer, and related issues.

Then there are physical impact that may need physical therapy, medications, other treatment, and trials like you are seeing about. I'm not one to use antidepressants, but some find them helpful.

Looking at everything as a whole can be overwhelming, including day to day activities in life. I like to break each down, set prorities, treat or try to correct one at a time, but some do overlap, that way I see some progress, are resolved, need maintenance, are ongoing, and seems less overwhelming.

They have support groups you can go too, some specific to head and neck cancer like SPOHNC, Support for People with Oral Head and Neck Cancer, that have local chapters in most states with monthly meetings, and may find it helpful to meet, and discuss issues amongst your peers.

http://www.spohnc.org/local_chapters.php

Good luck.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Apr 2013
Posts: 319
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Apr 2013
Posts: 319
Great post, Paul, breaking the situation down into manageable parts is a very successful technique for keeping the situation from overwhelming you.

Focus on the immediate need and blot out the stuff you don't have to deal with at this moment and deal with it later.

And by the way, ammonsmg1, none of what you are reading here is at all in the realm of the abstract, it is practical advice from those who have gone through this and come out with body and soul intact.

Well, bodies mostly intact, that is...

But think of this, your body is like your horse (work with me here). You are not your horse, you are the rider. If you horse sustains damage, it's going to affect your mobility, but YOU remain intact.

Or, if that analogy doesn't work for you, think of your body. If you lose your arm, are you still you? Of course you are, but your reality has changed. That's exactly what happens to us all here, our reality suddenly changes with the diagnosis of Cancer, yet we are the same inside.

For this reason, it pays big dividends to realize that no matter how much our bodies change over the years, we remain. Reality is always reality and clinging to what was before the change is not only fruitless, it is very dangerous to our psyches.

Loss of any body part or function, however painful that loss might be at the time it happens, is simply a change in reality. Give no thought to what was, it is no longer your reality, it is but a dream. Apply the 5 steps above and get on with your life, knowing that you will get through this even if the passage is (extremely) unpleasant at times.

Again, you have the greatest possible moral support team here filled with folks who have a closet full of those "BTDT" T-shirts. Practical advice on dealing with nearly every conceivable rock you'll find in your path is here for the asking. We want you to succeed and also to do so with a peaceful mind.

Good luck, brother,

Bart

PS, Happy Mother's day to all of you brave mothers out there! B

Last edited by Bart; 05-11-2014 09:24 AM.

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!
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
What great posts, Bart and Paul!! Such good advice not only for survivors and caregivers but just plain ol' regular people! I've added them to my Memorable Quotes file.

And for ammonsmg1: I'm so sorry you have had such a rough time with your recovery. It's easy to get depressed and happens to most survivors and caregivers, too. If it gets too overwhelming, make sure your doctors know - they may be able to offer some help with it. Don't worry about the "pity party" - I like to think of it as having a little compassion for yourself and that's not a bad thing. You will get through this - you have lots of support here so come back often.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Joined: Mar 2013
Posts: 421
Likes: 1
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Mar 2013
Posts: 421
Likes: 1
Hell of a post Bart and Paul. Some perspective for sure!

Positive thoughts and prayers


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
Joined: Aug 2011
Posts: 269
ngk Offline
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Aug 2011
Posts: 269
Wow...thank you Bart and Paul!
Hoping you are encouraged ammonsmg1


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
Page 1 of 2 1 2

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5