| Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Just when I thought everything that could go wrong with a G tube had happened to me over the last two years, something new happened. The tip of my extension tube broke off inside my main G tube when I was changing it. I wondered why I could not get the new extension to fit snugly yet the G tube did not seem clogged and let a syringe put directly into it empty out. So I squinted and saw a little orange glow down in the top of the G tube. I dug out the old extension tube from the trash, and yep, the tip was broken off by 1/16th of an inch. Luckily I had some dental tools from my mosaic projects and with a little luck was finally able to put a pick down the tube and poke it just enough to snag the orange fragment yet not puncture the tube and pull it out. I'm getting quite good at DIY with the tube (regular readers remember when my tube fell out last month and I put it back in myself rather than sit in the emergency room on a Saturday night). Maybe I should contact PBS about a "This Old Tube" show Charm
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Wow, Charm! You really are a handy person to have around! I think PBS does need you! Do you fix leaky faucets and hang pictures, too?
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 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 67 | Great story. I have a different one to add. A YEAR after treatment I was finally ready to leave mine behind and move on with smoothies by mouth. I made an appointment with the hospital to have it taken out. I had one of the kind that didn't have a balloon at the end, but a wire that ran through it so once it was inserted, you could pull on the wire and it would "pig tail" up inside your stomach and stay in.
The day of the appointment, I sat patiently for 2 hours beyond my appointment time in the waiting room, and finally frustrated, I walked up to the nurse's station and asked if they had a pair of scissors, and the lady dug in the drawer and pulled a pair out. I reached down to my already unbuttoned shirt and cut the wire with her scissors, which of course straightened out the tube, easily slid the tube out of my stomach, put the napkin (previously around my coffee cup) over the opening (nothing was leaking out anyway) handed the scissors and tube to her with a thank you, and said, tell the doctor I no longer need to keep my appointment.
As anyone that has had one removed can tell you, the hole granulates back in in just a couple of days, and that was that. I will never forget the look on her face, priceless.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Oct 2008 Posts: 251 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2008 Posts: 251 | I can see Pete D smiling right now...
You guys are amazing!
Catherine
2mm tumor excised 09/23/2008 (floor of mouth) SCC (superficially invasive, well-differentiated) Stage 1, T1N0M0 01/2009 and 01/2010 - PET/CT clear Four and 1/2 years - NED! "Detection can be easy, treatment is not!"
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Catherine, I thought the exact same thing when I read of these two doing their own surgeries! Yes, they both are amazing!!! 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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Brian
You are a man after my own heart! What a great story. Sad commentary on how doctors treat PEGs but so so true. You saved both time and money. Did you ever hear back from that doc?
Turns out when I actually measured the broken piece, it was actually a quarter inch, not one-sixteenth, so it was not micro surgery. Too big to fit down the main tube so I was lucky. Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 67 | Oh yeah, I had a few follow up appointments with him, and he is on OCF's board of science advisors now. He and I both agree that while we are good friends now, I was the patient from HELL when he was my doc.
I soon left the area and continued with recovery in Santa Fe, NM and he was in Houston. So he was either a great guy to email communicate with meat least weekly, with my various after treatment issues, or he was just afraid not to answer my emails.
The next brouhaha we got into was my withdrawal symptoms (my fault) that I went through that were hell on earth, and which he didn't diagnose properly by email�. I mean who would have even tried, so I give him credit. I realized what they were when I was watching the tube one night, and there was a commercial on for a clinic that offered rehab for heroin and other addicts, and they described my symptoms exactly in the TV 60 second piece -and the light bulb when on. I immediately went and got my pint (not kidding) bottle of morphine, that I had been putting in my tube, (as needed or not), but had like a drug addled idiot know it all, abruptly quit using, and put myself back on (to the point of pink elephants and dancing nubian slaves girls). The next day in a more lucid state I called him on the phone explained it all to him, and he emailed me a logical step down dosing that would get me off without the issues, and took 8 weeks to do.
Of course being the rash obnoxious idiot of the time, I blamed him for not recognizing my symptoms in an email rant, but in reality he replied, he didn't think that I would do something so stupid, as to abruptly quit taking high octane meds I had been on for a year, and didn't even consider the possibility (Clearly I had convinced him that I was too smart to be that stupid.) What he now knows, and I am living proof of, is that no matter how simple you make something, nature will always make a better idiot.
I relate this whole story here for a singular purpose. Too many here think that I am smart. But that is really not it. My knowledge has been accrued far too often in life by doing the opposite of what I was told, just as in the part where my dad told me not to stick my fingers in the fan. So here is how Brian learns things and develops Good Judgement.
Good judgement in my opinion comes from experience. The problem is that in my case, experience most of the time comes from BAD judgement.
Last edited by Brian Hill; 05-01-2011 08:07 PM.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | [quote=Brian Hill]just as in the part where my dad told me not to stick my fingers in the fan. So here is how Brian learns things and develops Good Judgement. [/quote]
So how many fingers do you have left?
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED  Still underweight
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Yes, you are smart, Brian. The learning that happens from having made bad judgement is one of the best ways to learn. It also develops compassion for others who have also made bad judgement calls. And that's a very good thing!
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 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 67 | Klo - they are all there, but the fan was only the beginning, there was the stove, and my mothers iron, there was the belief that to win a bet I could grab the cheese out of a rat trap before it got me, and after numerous warnings not to even try, well you know�. there was the 50 caliber machine gun breach that I was told not to touch after it had been firing for about 15 minutes, to prove I could clear a jam�. We needed that gun, but I now have no finger print on that finger, and the list goes on.
Perhaps the phrase "slow learner" might be applied to me. Though I certainly didn't think I was slow in school, I just thought I had bad teachers��. (transference of blame is a whole 'nuther issue that we just won't go into here.)
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
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