| | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | It sure is a day to day struggle as you know. I wonder how long I can keep up this struggle of being in a bind and on a schedule every day of our lives. Can't go anywhere that takes more than 3 hrs because of the meds and feeding schedule. Live with 24/7 pain that would put most people on their knees. You gotta have it in your mind that one day you will be fine. If it was just OC I would be in great shape physically as well a mentally. Just too many other problems to put up with.
Last edited by ChristineB; 10-18-2012 09:55 AM. Reason: This was taken from another post Jim made. I thought it should have its own thread.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Jim - I've been thinking so much about you and wondering how you were doing. I'm so sorry you are having such a struggle with the meds and feeding schedule and the daily pain. Wish I could just wave a magic wand to make everything all better for you! You are such a strong survivor and inspiration to the rest of us. I'm hoping and praying that soon, things will get better for you.
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: 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 | Jim I hope you dont mind that I moved this over onto its own thread. I felt your words show you could use a hand right now with coping. Im so sorry you are struggling!!!
Just because you have to take meds and do feedings doesnt mean you have to stay home. Im always in and out and running all over the place. I take what I need with me and if necessary, I take my meds in the car where nobody can see me putting them in the tube. You can do the same with your feedings. Along with your medicine and formula, take along a small hand towel or washcloth, a bottle of spring water to flush with, and a plastic cup if you arent comfortable using the syringe to get water out of the water bottle. You can always go into a bathroom to do the medicine or feeding too. I know you like to go to church and visit with people so dont let the tube keep you from enjoying life.
If you are down, how about seeking out someone to talk with? You know you have tons of friends here that can help you too.
Hope today was a decent day for you!
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: Jun 2008 Posts: 51 "OCF Down Under" Supporting Member (50+ posts) | | "OCF Down Under" Supporting Member (50+ posts)
Joined: Jun 2008 Posts: 51 | Jim, I am so sorry you are suffering so much and I understand the pain completely six years out and still on morphine plus other pills to help me cope with the pain plus other pain killers
SCC Base of tongue stage 4. 10 hour operation Radical neck dissection and hemiglossectomy 23/10/06 35 Rad treatments and 3 high dose Cistplatin Dec 06 - Feb 07. Ex casual smoker 6 to 8 a day - casual drinker. Very fit and diet conscious.
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | My dear sweet Jim. How I wish things were better for you. You were away from the boards for awhile and I pictured you off working outside, keeping busy and shooting the breeze with your buds. Hopefully you were doing SOME of that. If the pain meds aren't working - get different ones - talk to your pain management clinic. I personally think that is the key to having the ability to do other things which enrich your life (like flirting with every female within 100 miles!!). Many hugs. Your Angels are still here for you.
Hugs
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | 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 | Thinking of you and hoping things will motive and that there will be someting that will solve your problem - hugs my dear...
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: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Jim, you're one of the all-time greats here and it pains me to read about what you're going through. All of us are pulling extra hard for you.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Hi Jim, I think you are a terrific guy. How you have coped with what life has thrown at you shows what an amazing man you are. Just know that we are all behind you .
I hope you are feeling stronger today and able to carry on .
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: Aug 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | Jim, I still come on here once in awhile to check on people and I'm sorry that you are having such a time with pain and the pressure to keep to a schedule in your life. Please know that I am still keeping you in my prayers. One day at a time... it will get better!!!! Hang in there!
Nancy
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
| | | | | Joined: Oct 2012 Posts: 118 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Oct 2012 Posts: 118 | Hi Jim,
Don't know our cercumstances clompletely, but I used to feed my husband at night while he slep with his peg tube. When he was getting ready for bed, I would fill the bag and set the pump (same kind of pump that is used for IV's) and when he woke up in the morning he had already gotten 1 1/2 feedings. He could go out for most of the day. It really was quite convenient and didn't make him so full.
Bette/CG to husband Reggie 66
dx 1: SCC Soft Palate (12/06)
tx: chemo and rad
dx 2: SCC 6 cm tum rt. vocal chord (12/09)
tx: total laryngectomy with stoma, 2 nodes
dx 3: SCC 4 cm tum BOT (10/16/12)
Tx: partial gloss w/ mod deck dis 4 nodes incl. part. pharyngectomy
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