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I just had a short correspondence published in Clinical Otolaryngology about my experiences in the hospital after surgery. It describes the errors and challenges in the care I received.
It can be read at http://bit.ly/hAnr47

Itzhak Brook MD

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I read the article and find it most disturbing. Sorry that you went through that and glad that you were aware enough to prevent most of the errors that could have occured.

Although it is impossible for family to be with patients all the time, it is a good idea for them to be there as much as possible.


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
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Dr. Brook,
Very well stated. Fresh from the death of my MIL, from a botched abdominal hernia surgery, I witnessed many errors made by ICU staff and doctors. We organized a 24hour ICU watch to add a little insurance. We questioned the patient monitor display, the IV bags, dose rates, lab work, even vent settings, etc.

OCF main mission is to educate patients to advocate for themselves, question doctors and procedures/protocols, determine the risks and benefits of different treatment modalities, insure that all lab work and workups are done and, in general, enable a patient or caregiver (many patients do not want to know) to have a somewhat informed dialog with care providers, so the burden of medical advocacy can be alleviated as much as possible. I brought my wife with me to every doctor appointment to transcribe every word said. You can't have too many sets of eyes looking at this stuff. I also requested a copy of every medical record, scan report, etc. I even have CD's and DVD's of all of my scans. Plus patients are typically pushed into life changing decisions in very short periods to time. I truly think that the doctors, knowing that I was proactive in my care, were more careful.

It is surprising and disturbing to me that a medical professional, such as yourself, would not have received the highest quality and/or standards of care. It brings to mind the movie "The Doctor" with William Hurt. (footnote - I forgot my CD one day so the RT technologist suggested "Time" by Enya, which was the same song that they played in the movie when his cancer patient friend died - in San Francisco no less). Nothing like a little New Age music to enhance your treatment experience.

Truth be known, most of us were misdiagnosed or diagnosed very late in the process. I went to a dentist, oral surgeon, my GP (twice) before I finally got a referal to an ENT and he was able to Dx me in about 15 milliseconds. I am certain that the 1 year delay probably advanced me a stage or 2. My H&N surgeon estimated that the tumor was about 2 years old when finally properly biopsied and diagnosed.

IMHO, taking an active roll in your treatment increases your chances that less errors will be made. This is an unforgiving disease and errors are frequently fatal. Very few of us has had second or third chances.

Last edited by Gary; 01-09-2011 08:51 PM.

Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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Keep repeating the message Doc. My post surgical stay in the hospital was also replete with errors, all of which were avoidable and obvious even to someone without a medical degree. Many of them were similar to yours as I had a traech tube in so could not speak clearly
I was so distraught I pleaded in vain with my wife and son to bring me my billyclub from home so I could teach the male ICU nurse some manners. I had to settle for filing written complaints with the patient advocate. That nurse was fired and one doctor formally reprimanded.
Actually this OCF forum was my mental safety value as I typed away on a laptop about my horrific experiences. At one point DavidCPA posted a reply that had me laughing so hard I literally burst a stitch. I went in at 137 pounds and came out at 119 pounds (and this was with a feeding tube!) It's a miracle I didn't suffer any long term consequences.
Thank you for writing that letter and getting it published. Doctors take other doctors' complaints more seriously than patients'.
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
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Being a physician did not make me immune to errors, just more aware of them. It was very frightening for me to realize that the hospital setting can be quite dangerous. I had to stay vigilant at all the time to prevent errors which was very unnerving. I had written more about these errors in my book in chapters 9 13 and 14.The book can be read on my blog at:http://dribrook.blogspot.com/
Itzhak Brook MD

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This is hitting home really hard right now as I just sprung my Mother out of the hospital before they killed her.

I feel like her stay the last week has been a combination of Clockwork Orange, Hotel California, and Alice in Wonderland as we slugged thru a ton of miscommunications, mistakes and just sheer stupidity. And this is supposedly a good hospital with all this touchy feely..make the patient important stuff but...... while they were making sure that they greeted her each time they came in the room, the background stuff that was so important to her recovery was totally screwed up! And this is with two of us (one an RN) staying 20 out of 24 hours with her trying to watch over her. SCARY!

Makes you wonder how many patients die because this goes on.

Deb





Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
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"IMHO, taking an active roll in your treatment increases your chances that less errors will be made."

I cannot agree with this more. My father is a physician and I've always had the utmost respect for doctors . I was always very trusting of what they told me... until I got this cancer. I was misdiagnosed for many months - was made to feel like a hypocondriac while in absolute agony and finally was referred to an ENT who also diagnosed me quickly. From there I went into the hospital where there were many bloopers made- too many to mention. For the rest of my time in the hospital I was completely on edge and could not relax because I felt if I did that I wouldn't be taken care of. It was nervewracking to say the least. I had no idea how tough it would be.

It is especially difficult with the type of surgery for H&N because we often can't speak in the hospital. I was exhausted trying to communicate my needs via writing.


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
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"It is especially difficult with the type of surgery for H&N because we often can't speak in the hospital. I was exhausted trying to communicate my needs via writing."

Well yes, when the patient is not capable of talking, making decisions, or deciphering what is happening..it is a scary proposition. And add to that the patient not remembering what has happened or how they felt even an hour before...whew.. Of course the medical personnel are trained to talk to the patient and my mother would answer their questions in a very lucid manner..problem was..her answers were totally different than what had transpired and we would have to correct her every time.

We were exhausted trying to keep everyone straight on what the true story was.



Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
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Alex and I also had dramas. But we were made to feel it was somehow our fault. With so many patients waxing lyrical about their care, how great the doctors were, how caring the nurses were etc, the unspoken question was "how come you two are having such a tough time?". My response at the time was that I could see the things going wrong whereas maybe the other patients couldn't. Even on this forum, I was reticent about listing the errors and stupidity we were subjected to. Even so, I couldn't help wonder that maybe my proactive stance in confronting the doctors and nurses contributed somehow.

Now I know rationally this is untrue, and if I hadn't got the patient advocate involved and threatened to take my complaint to the area health board, there is a fairly good chance, Alex's chemo/radiation treatment would have been interrupted with fatal consequences. The up side of the whole debacle was we managed to stay on track for chemo/radiation, get the original doctor removed, receive care from senior nurse on shift only and get EVERYTHING documented and reported to me every night. There was also some small satisfaction in seeing the nurses and a particular doctor run the other way when they heard me clicking down the hall.



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 smile
Still underweight
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Karen,

Good for you to find the strength to do this..its so very hard to step up and question...go against the tide..etc. You do feel as though you are then labeled as a troublemaker and have less of a repore with the staff but so be it.

And here we go again - new facility, new doctors, new nurses and aides and my mother who can't remember where the call button is or how to turn on her light or TV....SO HARD!



Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
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