| Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Charm,
It does give you a whole new confidence to have something under those ugly hospital gowns doesn't it? When you think of the improvement in the care that you and others will receive in the future it is worth the effort.
One of my bird dog groups has shirts that say "Don't Just Make A Statement, Make A Point".
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | Charm, You have certainly gotten on the right track with your proposal to help change the SOP at Georgetown. Some times the heads of these institutions are too busy fundraising, image polishing, recruting and ego stroking to notice what is going on inside and just assume that as long as there is no major uproar everyone is doing their jobs properly.
Why were surgeons folding boxes for the garbage?? Maybe they should be invited to the meeting.
Re boxers: Any returun to normal is great. The ob-gyn who delivered my children used to say that he knew his patients were doing well when he came in to see them on rounds and they were wearing make-up.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013. Support OCF
| | | | 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 | Okay Yes I am resplendent in my royal purple bathrobe, black slippers, and boxer shorts so when I have yo pull up my to access the PEG port< I do not need to scramble for a towel to avoid flasjinf everyone. next project is for my lovely talented wife to make special exterior kangaroo type pocket/pouches on the rest od my boxer shotrs so I wont;s have to tape the coiled tubes to my abdomen. i have decided not to post the patient advocate complaint here as it not concise, reaher it is verbose and tediously expositional in the oe friday style of "Facts ma'm just the facts" the Patient advocate's buisness card has a dark blie sde with SPIRIT an acronym for Service,Patient first,Integrity,Respect, innovation< Teamwork. 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 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | the Spirit acronym goes top to bottom in script font, the card is bisected with white roman font reading " Trusted Leader*Caring for People*Advancing Health"
Brian Hill has earned that. so far Georgetown DC hospital has not merited it. 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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Charm...I love the description of what you are wearing...LOL You crack me up. I have to agree...when I was in the hospital and they finally took me to my room..I saw my mom. I was still pretty out of it and I said "mom, I need my underwear" LOL Then I felt better. Those gowns are god awful aren't they?!?
Have you asked about the beer in your Peg? Then it can be like your recreational days...it will seem much more fun!!
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | Instead of pockets, consider a necklace with a clip to just hold the PEG up out of the way -- One necklace vs a pocket in each piece of clothing... If you are still in the 'nothing around the neck' stage, hold the PEG up with one of those lapel clips for ID cards.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Rob just tucked his down his underpants,but make sure the top is pushed on tightly or it can get embarassing!!!!
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | 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 | Jim and Cookey: Right: Now I have the extender tube tucked into a water bottle pouch (that my wife had made for my constant water bottles ) and it hangs around my neck. It works well plus it has my macho Marine Corps Marathon patches on it.(No I never served in the Corps but did run 4 of their marathons: best time was 3 hours 15 minutes). I was so proud I kept wearing the T shirts to tatters so my wife made a quilt out of the 4 of them plus the memorial patches they give you which I proudly displayed on my office wall before retirment. Holding off on the alcohol right now in PEG 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 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | My adult kids were here last weekend and my daughter was joking about pouring a cup of coffee down the PEG and watch me bounce around from the caffeine (Haven't had coffee since December!).
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | |
Forums23 Topics18,249 Posts197,138 Members13,321 | Most Online1,788 Jan 23rd, 2025 | | | |