WHY I HAVEN’T WRITTEN MUCH LATELY – GOING THROUGH SO MUCH OF THE SAME *HIT, SADLY
I haven’t been writing much lately because of what you’ll lear about here.
CURRENT STATUS:In summary
- If you follow my “Cancer Chaos, you’ll know that #pathologists confirmed bizarrely my brain cancer cells spread to several lymph nodes and my parotid gland, one of our major salivary glands which our facial nerves surround. Resulting in a 14.5 -hour extremely complex surgery involving Head & Neck and my trusted plastic surgeon. Last year pretty much every physician who I treat with encouraged me to undergo #radiation
- I was 100% against it. Then I found my #oncologist at Duke 😇 who 100% agreed with me!AAAaah!radiation to that area was a terrible idea.
THE METASTATIC CANCER TO MY LYMPH NODES & NECK RETURNS
- After a 14.5 hour surgery in October 2020 that I’ve never fully recovered from. I truly thought I was passed the worst of It all, Yet, per usual I was wrong!
HEAD & NECK RADIATION
- I’ve just finished 10radiation doses to my neck when you think about: the radiation beam goes through your cheek through your jaw into your throat. Then onto your tongue causing not just pain but mouth sores, problems swallowing, mucus buildup. It basically caused burns to my scalp and severe skin irritation (the only way I can describe is that it feels like how people talk about fire ants biting them-NOT FUN!
- The reason I agreed to the radiation is mostly to shrink the tumors and to help me qualify for a clinical trial at the National #Institute of Health/National Cancer Institute led by top ependymoma experts
- Ependymoma trials are not common but I must thank the Lord for THE CERN FOUNDATION, especially Kim, their Executive Director
Committed to improving the care and outcome of people with ependymoma through community support and research efforts.
Established in 2006, the CERN Foundation is now a designated program of the National Brain Tumor Society dedicated to improving the lives of those affected with ependymoma. Thanks to the efforts of an international network of collaborators, the CERN Foundation has been responsible for the publication of over 50 peer-reviewed papers in leading medical journals. This body of research has greatly advanced our understanding of ependymoma and has left a lasting legacy for future investigators to build upon.
I’ve written about how broken our “Healthcare”system is previously and much of that is, due to a lack of “care”:
PRIOR POST: https://braincancerbabe.com/2021/07/21/hospitalized-once-again-the-deadliest-brain-cancergbm-our-broken-healthcare-system-andthe-new-mafia/
That prior Post doesn’t even get into the the pure inefficiency a sick patient must deal with, even in, very good, top-rated hospitals!
BUTTING-HEADS WITH MEDICAL RESIDENTS, ONCE AGAIN
STARTING OUT IN A PROFESSION
I was a litigation attorney in both New Jersey and New York.
As an Associate Attorney I know what it’s like to be low guy on the totem pole. You are just starting out, in a challenging, demanding profession. Therefore Therefore ,I understand the immense challenges Medical Residents face.
BACK TO THE HOSPITAL I GO
Recently, despite my protests, my husband brought me to the hospital because of I fell out of bed and we learned I had a 104F fever
I just knew the hospital would be terrible. I was definitely right in that!
Nevertheless, my husband did the proper thing, and called one of my doctors, who said, that level of fever, could bring on a seizure. “
As such,she directed us to go to hospital immediately.
HEALTHCARE HAS BECOME A BUSINESS& I SEE IT, MOSTLY WITH RESIDENTS. THUS, IT MUST BE COMING FROM SOMEONE HIGHER-UP
Yet being a Resident, is not a license to be incompetent and pompous while you put a patient’s life and safety in jeopardy, and admittedly, I constantly fight with Residents because they order scans and tests or at least “recommend”such THOSE scans& tests, I KNOW enough to say, “You’re merely ordering this to raise my bill.” ( Thank God for insurance!) I WAS EVEN TOLD AS MUCH IN ONE INSTANCE:
This has not been the first time with this issue either! Yet, failing to know basic medicine and proper practices is always excused.
I’d love to hear a hospital administrator just once admit, “you’re correct that was uncalled for or that was wrong.” Back when I first got sick and someone acted improperly. The minute you asked for a “patient Rep” suddenly everything going wrong-was fixed immediately. Now, I simply tell my main doctors. I know nothing will no longer be done after I make a patient Rep” report.
I literally stopped breathing post-op narcan as to make me start breathing again! Here’s the story https://braincancerbabe.com/2020/11/30/near-death-experiences-why-i-believe-i-died-after-my-last-surgery/
HIGH GRADE FEVER AND SEIZURES
There HAS to be repercussions for the failure to know basic medicine.
Yet, my Complaints about this issue go unheard every time.
YET AN E.R. RESIDENT PUT MY SAFETY and HEALTH IN SERIOUS JEOPARDY FOR LACKING BASIC MEDICAL KNOWLEDGE
According to the Mayo Clinic:
Thus, off we went yet again off went to the hospital.
So Yes, a104F, would definitely trigger a seizure !
I presumed, very wrongly, that I’d be in and out.
IN THE E.R.CHAOS/HELL ON EARTH
Thus, we went into the ER (just about the worst place ever) specifically because my fever could trigger seizures
My triage room happened to look out to the receptiondeask in the ER. So I watched some little scumbag in scrubs sitting at the desk answering phones.Not getting up and “rounding” or taking calls.
Of course, as luck would have it. I start seizing. ( my seizures are focal and my arm just shakes). Thus, I can speak through them.
ASIDE: I’m generalizing, here, because I know many exceptional residents. Yet, they don’t tend to work in the E.R.
Anyway Scumbag at the reception desk, turns out to be a resident, which basically means he knows nothing and he knew nothing, especially how to handle me! 😂
Well, he literally said :
“SHE’S NOT HAVING A SEIZURE”
As I’mliterally seizing. I demanded my rescue meds.Then he actually said “she is not having a seizure and I am not allowing any anti-seizure medication!” I stay awake during all my seizures
However, you never know if the seizure will escalate without medication stopping it upon the first sign of it starting.
Soooo Of course me being me I scream “are you kidding? are you even a doctor? Do you know what my seizures even look like? Do you have any idea about my seizures do you know anything about seizures?” “What kind of doctor are you? “Are you an epileptologist?”And then I get a very smart ass “No” in reply.
To me, this is basic medicine. Therefore an ER doctor. Should a doctor who sees patients in emergent situations know seizures present in so many different ways. I think so! . Certainly, he/or she should NEVER deny a patient rescue meds. There’s no justification for that beyond ignorance.
Thus, so I continued my rant. ”You better go call my epilepsy do,who is the Chair of the Epilepsy Center here!”
As I’m literally pointing my fingers or him to to go to back to his phone at the reception desk.
I can’t remember if the nurses got me my meds or the seizure stopped on its own, but that is seriously dangerous because as I even know a focal seizure could escalate into a grand mal seizure if you don’t get meds immediately.
WHAT THIS “DOCTOR” AND ALL DOCTORS SHOULD KNOW, IN FACT, SHOULD KNOW
There ARE different types of seizures-basic medical knowledge
NOT UNDERSTANDING EPILEPSY/ SEIZURES BY GENERAL PUBLIC
Admittedly, I never went to medical school. nor was I ever awarded a medical residency in a top hospital in NYC! Yet, even I know not all seizures are grand mals!AND I know not all seizures present the same way! Hell, there was an article about a Starbucks worker who had auras just before her seizures would come that aura was that she’d randomly smell marijuana! ( of course I can’t fund the article now.
what exactly is a seizure?
Yet, I know enough about seizures to teach residents, it seems!
Douchebag Then literally turns the story around completely to his benefit. surprise? Surprise? He said he decided to call my epileptologist and was told that my seizures present in my arm in the way they were at that time, he told me “I wasn’t having a seizure” AMAZING NEWS!
AND IT CONTINUES…
Then theDouchebag, started to talk to my husband-of course the male superiority bullshit. “As in How can I speak to this hysterical woman? Who is THE PATIENT!
He was trying to say that he is used to seizures being like grandmals where you are flailing around and can’t speak. As if that’s ANY EXCUSE FROM A MEDICAL DOCTOR!
Now, I treat at a large hospital in NYC. It’s ER is chaos.
You’ve got gunshot wound victims to drug addicts and even prisoners brought in!
Yes, I was there once when they were escorting a prisoner into the ER. That always- makes you feel better when you’re finally resting and you hear a loudspeaker announce that a prisoner was coming-in!
ONCE YOU GET UP ONTO THE FLOOR YOU DONT EXPECT THE E.R.CHAOS – WRONG AGAIN!
Tpically, once you get a bed and a room on the floor, the chaos, lessens.
Well, NOT this time!
In fact I couldn’t take the inefficiency anymore and all the B.S. lies told by the hospital staff to protect one another against serious issues. for the first time I signed-myself out AMA.
For example my nurse left me sitting in a urine soaked bed for almost an hour. After calling my nurse 3 times and demanding help, as well as for the charge nurse who conveniently was “busy” every time I called. I was told “she was off the floor” What?
SIGNING OUT AGAINST MEDICAL ADVICE(AmA)
denied I ever had dengue fever…
After the horrid the horrible ER experience. Then this incident Plus. another totally ridiculous one involving an alleged “contamination issue of my MANY blood samples, I signed myself outAmA .
One incident that really convinced me I should just sign out was one night I was woken up by A completely random staff member. Not even a nurse although my nurse was right there. I suppose she had trouble waking me but regardless I was told that “the doctor “wrote in a note I refuse to take my seizure medication. “Now she was standing there with the medication
why she didn’t just ask if I would take it? I have absolutely no idea. Of course, I asked what doctor? She said the doctor on call”
. I IMMEDIATELY demanded to see him
he was some intern in the epilepsy department. I never met the man, I never spoke to the man previously, he certainly was not MY doctor, Who is Chair of the Epilepsy Center.