| | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Sounds like you took care of things, Gordon. Maybe the person you talked to missed the class on "Bedside Manner" or "telephone etiquette". Being a cancer patient has got to be the most stressful experience ever, followed closely by being caregiver to a cancer patient. I used to think divorce was the worst thing and most stressful that anyone could experience but compared to the above, it was a piece-of-cake! I would take names, dates, times of everything that happens so that you have facts to include in a complaint letter or email. Hope things go 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: May 2012 Posts: 31 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: May 2012 Posts: 31 | Yes STRESSFUL, but they get paid and we get TO PAY!
Last edited by waltersaegir; 05-20-2013 03:23 PM.
Squamous Cell Carcinoma base of tongue
Erbitux 12 wks
IMRT Radiation ended 8/7/12
MRI Cancer live 10/3/12
3 rounds Chemo (Cisplatin, 5FU, ??)
Brachytherapy 7days ended 1/28/13
PET SCAN 4/19/13
70 yr old 8/20/12
Walt
| | | | | Joined: Apr 2003 Posts: 122 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Apr 2003 Posts: 122 | Am FINALLY to start my last 3 doses of antibiotic this morning (Tues 7a) Ol' "cross" eyed table-pounder is gonna KILL 'EM WITH KINDNESS! You just wait 'n see! :-)
SCC right tonsil Dx 14 Feb 03
No surg till Apr 03
Lip resection Sep 05 "frankenface"
Recurr Apr 10
2/3 tongue removed Jun 10
SPEECH/SWALLOW/DROOL challenges FUN!
Dec 10 Tumor @ nodes/larynx/cart artery growing
Erbitux Mar 11 Hyoid bone regrows!?
recur Dec 12
begin taxo chemo
10yrs-still kickin!
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | gladto see the humor back! LOL
keep notes next time, every call, visit. that way you can verify the facts. it gets awfully hard to keep track after only a few days. don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | 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 |  a good nurse despite being stressed would ne'er stand your issue, and someone who is defensive is often on, ha way for a reason... Like she knew she'd dropped the ball.
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: Apr 2003 Posts: 122 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Apr 2003 Posts: 122 | Good points one and all. I definitely thought that "methinks she protesteth too loudly" and I told her I was going to report her to the doctor, but it probably won't happen. (partly 'coz I DIDN'T make notes and have my story together, Don!) Life, for ALL of us holds its' challenges at every turn. I'm mostly upset that she didn't call me back before end of work on Fri to let me know that the "appts are in the works, but we'll have to wait 'till Monday", and that she didn't acknowledge my fears...after all, don't MY fears encompass the world?
Anyway, on track to getting the last of the antibiotics, and will speak with my own doctor tomorrow (Wed). Will post one last time on this thread to report...
SCC right tonsil Dx 14 Feb 03
No surg till Apr 03
Lip resection Sep 05 "frankenface"
Recurr Apr 10
2/3 tongue removed Jun 10
SPEECH/SWALLOW/DROOL challenges FUN!
Dec 10 Tumor @ nodes/larynx/cart artery growing
Erbitux Mar 11 Hyoid bone regrows!?
recur Dec 12
begin taxo chemo
10yrs-still kickin!
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | "Kill 'em with kindness" does work, too. When someone is being difficult and you are extra sweet, it makes them feel guilty for being mean and makes it more likely for them to help you out especially if they are nurses or office assistants. THey work really hard and have influence with the doctors so it helps to stay on their "good side". Everyone concerned with my son's TX was always extremely helpful and considerate and I made sure to let them know I appreciated it.
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: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | Always liked the statement "Love your enemies, it makes them so damn mad!" Killing with kindness is a good idea. I'm a retired librarian, and when people would insist that they returned an overdue book, or even state that they never had the book, I always be patient and pleasant with them. Nine chances out of ten, they would show up with the book the next day, very embarrassed.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | | Joined: Apr 2003 Posts: 122 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Apr 2003 Posts: 122 | Spoke w/doc yesterday-ranted, raved and generally showed my ass. Doc was a but concerned but agreed That all in all, all is well. Even got a smile out of him regarding me and the nurse being lifelong pals as long as I don't have to deal with her again-ever. Am trying to get them to do cultures-want to know if infection is gone yet. Still killing 'em kindly but I suspect they think I'm up to SOMEthing!
SCC right tonsil Dx 14 Feb 03
No surg till Apr 03
Lip resection Sep 05 "frankenface"
Recurr Apr 10
2/3 tongue removed Jun 10
SPEECH/SWALLOW/DROOL challenges FUN!
Dec 10 Tumor @ nodes/larynx/cart artery growing
Erbitux Mar 11 Hyoid bone regrows!?
recur Dec 12
begin taxo chemo
10yrs-still kickin!
| | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | [quote=gpk101]Spoke w/doc yesterday-ranted, raved and generally showed my ass. Doc was a but concerned but agreed That all in all, all is well. Even got a smile out of him regarding me and the nurse being lifelong pals as long as I don't have to deal with her again-ever. Am trying to get them to do cultures-want to know if infection is gone yet. Still killing 'em kindly but I suspect they think I'm up to SOMEthing! [/quote]
Ah, you're a man after my own heart!
This is easy advice to give, and hard to follow; but I suggest that you start keeping good notes every time you have an appointment, and when something like this happens again, start immediately to kick ass and take names. Report incompetent treatment like this to as high a level as possible and let the devil take the hindmost!
Good on ya, mate!
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - 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!
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