| | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | OP  "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | They don't listen and they don't know what they are doing. The surgery the 10 hrs . I was fine in the step down unit over night but the nurse the next day got me up to sit in in the chair and didn't realized there was a problem with my catheter - I say there for a few hours swelling up until I was having trouble breathing And my bladder was full- she couldn't see me because had the curtain pulled - in the end someone else got me up and a whole bunch came out - then she pissed around with the catheter all day saying it was daring - yeah but that was only when I was standing - I had no pen or paper offered - she called urology - to take a scan - they arrived immediately after i had stood up - and been drained - of a litre of urine! Then the girl said there was only 25 ccs in my bladder - no shit - I'd just had my bladder emptied - seriously - if you think there's a problem with it change it - it's - a 5 minute procedure - I have an iv in my foot a cast on my arm - a trache in - I can't speak and then nurse wonders if I want try and get up to try to go to the washroom when I need to and - i can barely stand finally - after
Messsing round for 7 hours she changed it!!! Then last night - something happened to my trache - i think it bumped
My NG tube I've into my left lung - the nurse argued with me - I was having trouble breathing - I wanted her to call the dr he asked for an X-ray - she suctioned and it helped a little so I slept until the X-ray tech came - then I needed to be suctioned again and the NG bcame balled up
at the back of my throat and I freaked the dr finally came up and removed it -but they weren't listening to me - not that I could talk I was trying to right all the time I couldn't breath properly. then he tried to put it back in today - giving me a glass of water and a straw and telling my to swallow - hello - If I could swallow believe me I would my tongue is swollen and stitched - it kept getting caught in my trachea - no shit!
I had one can of something milky yesterday and that's it and they wonder why the have to poke me 6 times to get blood!
They are idiots here!!!
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: 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 | Im so sorry you are having difficulties. Nobody likes being in the hospital and not being taken care of properly. I wish there was something I could do to help you but over the computer its impossible.
If you are experiencing so many problems with your attendants, you need to speak up and advocate for yourself. Do you have any friends or family members with you? If not, then ask for a supervisor and let them know everything you have mentioned in your post. Thats the only way to get the help you need.
Hope things get better 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: Jan 2010 Posts: 142 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2010 Posts: 142 | There are no words that express the fear of being unable to communicate. If I had it to do again I would find some way to have someone there to advocate for me since being at the mercy of others who's job it is to care for us just isn't safe.
55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer
1/18/10 Clr PET
1/27/10 Surgery found Perineural invasion
3/22/10 Began Rad
05/05/10 34 rads
8/19/10 Clr Pet Scan
12/13/10 Clr Ultra sound/biopsy
5/4/11 MRI Clear
8/2/11 All Clear
5/25/12 All Clear
6/3/2016 All Clear
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Cheryl
Yep, the post op is much more dangerous than the operation. Your story sounds all too familiar - I entered the hospital at 137 pounds and left at 119 because of all the vomiting and the way they screwed up my NG tube and my suction. Same nonsense on swallowing and ignoring my problems. My urine was so orange and I was so dehyrdated that another day would have killed me.
Much empathy. My wife and son refused to bring me my billy club from home to thrash the nurses and residents so I ended up suffering like you. It sucks
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | OP "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Right now I am concerned about the pain in my lung - I was writing notes like crazy telling them to get the dr something was wrong - no go I had to freak out and break out into tears - to finally get help!! And they still don't listen!!! Oh my god seriously - she wants me to cough - but it causes the thing to dig into my left lung - hello???? People I am not a wuss - I can Hadley pain - I haven't needed to morphine pump - at all today - but dammit it hurts when I cough like someone is taking a steak knife to the inside - Jesus I hea you All - I told my husband he tried to hep but has limited medical knowledge... Gid save me !
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: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | OMG, Cheryl,
I feel so bad for you! I was very fortunate in my post op treatment. My surgeon was pretty agressive in making sure that I was treated right...not too happy w/the Dr. who put in my PEG. It really hurt, and I got pretty sick to my stomach, also. Other than that, however, I was treated very well. My husband was also very protective of me - and he's a big guy, so probably nobody wanted to mess w/him! This disease is so horrible - I don't think people realize exactly how awful it is! (I know I didn't before I got it.)
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: Nov 2007 Posts: 29 "OCF Canuck" Contributing Member (25+ posts) | | "OCF Canuck" Contributing Member (25+ posts)
Joined: Nov 2007 Posts: 29 | Cheryl
Do you have any calf pain or a fever? Did they do a CT of your lungs or just a chest X-ray? I am concerned about a pulmonary embolism...was your surgery on the 4th? | | | | | Joined: Sep 2009 Posts: 96 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2009 Posts: 96 | Oh my gosh. I am so sorry you are having to deal with all that. I agree that you need to get people involved over their heads. And the next time you see your doctor/surgeon you need to tell them everything that has happened. Believe me they have a pretty big say in stuff. And KEEP sticking up for yourself. I know it's hard with the trach. You might keep a sign like NO!!!! or GET THE DOCTOR NOW!!! on one page sheets to hold up when you aren't getting the point across. It's nicer than hitting them ;-)
I will pray that you are able to get some help and that they are able to get the doctor to figure out what is wrong.
31 at dx 9/06
SCC T4N0M0 with bone invasion upper maxillary
Surgery 10/06
CT's clear for 2 years
2nd recurrence - Laser surgery 1/09 dx
Tumor board - No surgery to invasive for QOL
35 IMRT 3/30/09 Completed 5/15/09
8 tx Erbitux 3/24/09 Completed 5/6/09
HBO for ORN March & April 2010
Fibula flap 5/10
| | | | | Joined: Sep 2009 Posts: 96 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2009 Posts: 96 | Sorry, it wanted to post twice
Last edited by BrandyK; 02-06-2011 10:47 PM.
31 at dx 9/06
SCC T4N0M0 with bone invasion upper maxillary
Surgery 10/06
CT's clear for 2 years
2nd recurrence - Laser surgery 1/09 dx
Tumor board - No surgery to invasive for QOL
35 IMRT 3/30/09 Completed 5/15/09
8 tx Erbitux 3/24/09 Completed 5/6/09
HBO for ORN March & April 2010
Fibula flap 5/10
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | OP "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | No pain no fever not yet -chest X-ray yes - CT no - asked for some pain meds Yesterday 330 - they were forgotten had to wait for orders until 10 pm- sorry tired will check in later!!!
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
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