I Am The Patient, I Need To Be Heard

Started by anonymous, February 19, 2015
9 replies for this topic
anonymous

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Posted on
February 19, 2015
A fiesty 15-year old has posted a video on YouTube expressing her frustration during her multi-day stay at a hospital, unable to sleep due to repeated visits by multiple doctors, and being ignored by those doctors as they discussed her case with only her parents.  In the week it was first posted,  I am the patient, I need to be heard, was viewed almost 30,000 times. Her video received such attention that it has inspired blogs (like mine), an article in Forbes, and multiple shares across multiple multimedia platforms. 

Ms. Gleason has spoken for every patient everywhere. 

"I am the patient, I need to be heard,"is the mantra, battle cry, prayer of anyone who has been forced to enter a doctor's office or hospital over and over again. Listen to me. I am right here. This is my life. My body. My future. I get to decide what you do to me, put into me, perform on me, especially if it will lead to a substantially decreased quality of life. I am not here to bulk up your survival statistics, you taking credit for keeping patients alive just to keep patients alive. I come to you because I want to live, and I want to live well. I deserve to be heard when I tell you that the chemo numbs my hands and feet so severely that I cannot walk. I deserve to be listened to when I say the steroids push me into a mania that impedes my life. And I deserve modified treatments based on my very real concerns.

Do you get the idea that I've been feeling this frustration too? I have. From the oncologist who would not sign off on a double mastectomy because the cancer had already spread and, really, the breasts (and their continued ability to grow more cancer) were not her primary concern. To the nurse practitioner in that oncology practice who blithely repeats the symptoms of cancer metastases, continuously reminding me of my impending death, so that I am encouraged to obsess on even the smallest headache as yet another proof of cancer gone even more bad. And to that same nurse oncologist who dismissively told me to go ahead and take that glutamine while on blood thinners, not researching glutamine's blood-thinning properties. The resultant bloody noses were only a sidelight of my already cancer-riddled fears, and her unwillingness to work with me in finding appropriate neuropathy-reducing supplements only added frustation to me already-heightened fears. 

Thankfully, my oncologist finally did listen to me regarding my concerns about a mastectomy, and I had the procedure two years ago.  She understood that my continuing fear of a different primary cancer in my breast trumped the current practice of stage 4, no surgery. My mental health was important to her in my fight for health, and I respect her acknowledging that. 

But to the medical practitioners who don't listen to my needs, who treat me as just another case or dismiss me as a simple note in a patient intake file, I have a new phrase for you. "You're fired."

Yeah. That's right. That’s you, nurse practitioner, whom I have lovingly nicknamed Hitler in Heels for her penchant of rigidly following the rules, no matter how much my case may demand a flexible approach. I'm talking about that time I came to you with steroid-induced acne literally covering my entire forehead, and you insisted I see a dermatologist, scheduling  me two weeks out for that appointment, when the simple solution was a prescription of anti-acne cream--props to my Internist for calling that prescription in to the pharmacy instead. I don't need to fight with you to get the kind of care I deserve and need. I don't need to be pushed into yet another medical appointment when I am already exhausted by extensive chemo, and you could easily have written the prescription instead. I don't need to be constantly reminded of the ways I could die. I've looked the symptoms of brain metastases up.  We went over the sypmtoms already. I know the gig.

So Hitler in Heels, you are fired. Done. Kaput.  I will find another medical professional who will listen to me, respect my concerns, approach me with flexibility, and pay attention to my desire to live comfortably, rather than just to live.  You. Are. Fired. Got it? 

Because, as feisty Ms. Morgan Gleason, said it "I am the patient, I need to be heard." And, frankly, I am the one signing your paycheck. My body pays your bills. So beat it, woman. Take your pink slip, and walk out the door.

And to every medical practitioner out there, listen up. Because your patients are talking. And we need to be heard.
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Anonymous

Member
0 Replies
Posted on
February 19, 2015
A fiesty 15-year old has posted a video on YouTube expressing her frustration during her multi-day stay at a hospital, unable to sleep due to repeated visits by multiple doctors, and being ignored by those doctors as they discussed her case with only her parents.  In the week it was first posted,  I am the patient, I need to be heard, was viewed almost 30,000 times. Her video received such attention that it has inspired blogs (like mine), an article in Forbes, and multiple shares across multiple multimedia platforms. 

Ms. Gleason has spoken for every patient everywhere. 

"I am the patient, I need to be heard,"is the mantra, battle cry, prayer of anyone who has been forced to enter a doctor's office or hospital over and over again. Listen to me. I am right here. This is my life. My body. My future. I get to decide what you do to me, put into me, perform on me, especially if it will lead to a substantially decreased quality of life. I am not here to bulk up your survival statistics, you taking credit for keeping patients alive just to keep patients alive. I come to you because I want to live, and I want to live well. I deserve to be heard when I tell you that the chemo numbs my hands and feet so severely that I cannot walk. I deserve to be listened to when I say the steroids push me into a mania that impedes my life. And I deserve modified treatments based on my very real concerns.

Do you get the idea that I've been feeling this frustration too? I have. From the oncologist who would not sign off on a double mastectomy because the cancer had already spread and, really, the breasts (and their continued ability to grow more cancer) were not her primary concern. To the nurse practitioner in that oncology practice who blithely repeats the symptoms of cancer metastases, continuously reminding me of my impending death, so that I am encouraged to obsess on even the smallest headache as yet another proof of cancer gone even more bad. And to that same nurse oncologist who dismissively told me to go ahead and take that glutamine while on blood thinners, not researching glutamine's blood-thinning properties. The resultant bloody noses were only a sidelight of my already cancer-riddled fears, and her unwillingness to work with me in finding appropriate neuropathy-reducing supplements only added frustation to me already-heightened fears. 

Thankfully, my oncologist finally did listen to me regarding my concerns about a mastectomy, and I had the procedure two years ago.  She understood that my continuing fear of a different primary cancer in my breast trumped the current practice of stage 4, no surgery. My mental health was important to her in my fight for health, and I respect her acknowledging that. 

But to the medical practitioners who don't listen to my needs, who treat me as just another case or dismiss me as a simple note in a patient intake file, I have a new phrase for you. "You're fired."

Yeah. That's right. That’s you, nurse practitioner, whom I have lovingly nicknamed Hitler in Heels for her penchant of rigidly following the rules, no matter how much my case may demand a flexible approach. I'm talking about that time I came to you with steroid-induced acne literally covering my entire forehead, and you insisted I see a dermatologist, scheduling  me two weeks out for that appointment, when the simple solution was a prescription of anti-acne cream--props to my Internist for calling that prescription in to the pharmacy instead. I don't need to fight with you to get the kind of care I deserve and need. I don't need to be pushed into yet another medical appointment when I am already exhausted by extensive chemo, and you could easily have written the prescription instead. I don't need to be constantly reminded of the ways I could die. I've looked the symptoms of brain metastases up.  We went over the sypmtoms already. I know the gig.

So Hitler in Heels, you are fired. Done. Kaput.  I will find another medical professional who will listen to me, respect my concerns, approach me with flexibility, and pay attention to my desire to live comfortably, rather than just to live.  You. Are. Fired. Got it? 

Because, as feisty Ms. Morgan Gleason, said it "I am the patient, I need to be heard." And, frankly, I am the one signing your paycheck. My body pays your bills. So beat it, woman. Take your pink slip, and walk out the door.

And to every medical practitioner out there, listen up. Because your patients are talking. And we need to be heard.
Report
Anonymous

Member
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Posted on
February 20, 2015
Brava! Perhaps we need rub-on tattoos of that phrase to place on the back of our right hands. The left hand would read "You're fired."
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Anonymous

Member
0 Replies
Posted on
February 26, 2015
Kate: That is hilarious. I need to get my "You're fired" tattoo right away.
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Anonymous

Member
0 Replies
Posted on
February 26, 2015
Perfect.Medical care in Cleveland has become assembly line, with no one checking to see if you are on the right line. My first Nurse Practioner I met in 2012 was wonderful, but still it was hard to get info, to get help with side effects that I have now, and to be understood. Maybe it is because I am 73. With the first 9 1/2 years of treatment in Bosnia, these last 3 in the USA have been isolating, confusing, frustrating, and boring. I wanted to wear a sign saying I am a person with cancer, not a cancer cell! With the 15 minute appointments, it is hard to think and get questions answered. The BEST is when my primary suggested a Palliative Care Doctor. Imagine my surprise when I found this was nit just for end stage pain. No one in oncology ever mentioned this. Now I am actually a few steps up from near comatose. Thank you for giving us these articles.
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Anonymous

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Posted on
February 26, 2015
Susan, Your articles speak to me as if I had written them myself! I was diagnosed as Stage 4 (first diagnosis) in September 2013. I was 46 years old with 3 year old twin boys and going through a bitter divorce. I got a mammogram every year and come from a family that is healthy and lives into their 80's and 90's! How could this happen to me? I can especially relate to your comment about Mastectomies not being a "standard of care" option for Stage 4 patients. I obsess about this all the time. I feel like I should get another opinion, but at least 3 Dr's have told me it's not an option. I feel I am being forced to accept it, but I can't let it go!
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Anonymous

Member
0 Replies
Posted on
February 27, 2015
This article really hit home with me ! Although my cancer was stage 3 Non Hodgkin's Lymphoma, my case was complicated because one week after I was diagnosed, and prior to Chemo beginning...I became paralyzed from the waist down and required an emergency Splenenectomy ( the location of a large cancerous tumor). As I lay in the hospital, post surgery, unable to feel anything below the waist.....no less than four Doctors argued at the foot of my bed !!! Ignoring me completely. A Neurologist, an Oncologist, a surgical oncologist and a Orthopedist , all convinced it was a different disorder that caused the paralysis. The Oncologist said it was the cancer attacking my spine, the surgeon was convinced it was the pressure from the huge tumor in the spleen, pressing on my spinal column, the neurologist was sure it was Transverse Myelitis ( a virus that attacked a weak spot in my spine at the T 12 vertebrae) and the Orthopedist thought it was "Cauda Equina", another very rare occurrence !!! But, not one of them addressed my cancer diagnosis, or my concerns. I was unable to walk, and had lost complete bowel and bladder function....and they continued discussing, and arguing my case as though I wasn't even in the room !! I was too sick too really care at the time, but I was lucky enough to have a daughter who is an RN, at my side to advocate for me. I did "fire" a few Doctors...find new ones, who would pay attention to my concerns, answer my questions. I am in a strong remission, almost 5 years, from my cancer. And, despite the diagnosis ( by two of the Doctors) that I'd never walk again...I can walk, with a cane, but only for short distances, I require a wheelchair for shopping etc. Now I make sure I get answers, or I get a new Doctor !! But, I am fortunate to have great insurance, I am sorry for those patients that do not have the luxury of second and third opinions, if needed.
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Anonymous

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0 Replies
Posted on
February 27, 2015
We need to learn to trust our bodies. I developed a massive breast infection after a month on the estrogen blocker Aromasin. I quit taking it and the infection began to heal--slowly. I had to have two more surgeries to remove a seroma and clean up the infected tissues. Finally after about 3 months of open wound healing, the incision did heal. But before it was fully healed, the oncologist put me back on Aromasin and the healing slowed significantly. I consulted another oncologist for a second opinion on Aromasin, and she told me that there is a steroid component of Aromasin that was potentially slowing the healing. So I changed to Arimidex and my breast resumed healing. But it was me, insisting that my body might not like Aromasin, that allowed the change to be made. My first oncologist, who didn't mind me getting a second opinion and who honored what that doctor said, wouldn't have listened to my complaint without the second opinion because, of course, I was not a doctor.
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Anonymous

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Posted on
February 28, 2015
My dad, who worked in hospitals in a non-medical capacity for several decades used to say "Doctors are like mechanics. If you don't like them, find another one." I used that message only once, and am so glad I did. I found the internist who has been with me from the beginning of my journey with multiple myeloma. I have worked with lots of medical staff through treatment and two stem cell transplants I have been lucky to have found good people who listened to me. But always Dad's voice echoed in my head and I knew I needed to tell them what I needed and keep letting them know if I am getting it. And I have learned to use nurses to help me advocate for myself For those of you that have not been so fortunate, listen to Susan and my dad.
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Anonymous

Member
0 Replies
Posted on
March 01, 2015
It's not just oncologists; I had a neurologist, too, who not only didn't listen to me, he sat there looking at his computer the whole time I was in the room! He didn't even notice when I got up and left, until several minutes later, when I was at the checkout desk, explaining why I would not be paying their bill, and why I was notifying my insurance to do likewise! I wish I had taken a picture of him when I told him he's been fired!
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Anonymous

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Posted on
March 02, 2015
Three cheers for you! The MD is always right, ask no questions, teaching of the past is gone--for good!
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