He didn’t have to die. Not the way he did. I write these words not for drama sake nor your pity and prayers. I have been silent, up to this point, in order to deal with my own health issue. But now that I am finished with what I hope to be my final big deal in this breast cancer journey, it’s time to speak up.
PLEASE NOTE: The article below was originally posted on my old blog. I am re-posting due to the latest revelations about the ethylene oxide emissions in my community. I am stunned. You will find the link to the update article at the bottom of this post.
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February 6, 2018
Denial never sustainably served anyone. I am not sweeping this under the rug. Consider this post a tiny ripple in a vast ocean of health care despair; urging attention, focus and advocacy for solutions in a health care system that breaks as many hearts — in what they miss and dismiss — as the diseases/conditions they work to cure.
“… Ray lived only 50 days beyond diagnosis and most of that in a hospital. And now, I am left to digest that it was a slow-growing cancer, missed by a medical system of specialists and primary care that only looked at their piece of the elephant. A blog for another day.” — Why I’m Not Fighting Cancer Again, July 2017
Today is another day. Why today? Because on February 6, 2017, I was not sitting at a keyboard in front of a computer screen. I was sitting in the emergency room of a hospital an hour away from home, terrified that someone I loved lost his footing and fell between the cracks within the medical community that was supposed to help him — to the point that suicide now appeared his only option for relief.
The goal? Admission into a hospital that was purported to have an excellent mental health wing. The hope? Stabilize him so we could address his weakening physical condition without his taking his life first.
Imagine our shock when, just hours into the admission clearance process, an x-ray revealed a suspicious spot on one of his lungs. Further testing uncovered growths on his liver.
Imagine our dismay when, seventeen hours after arrival, we were informed that he could not be admitted into the psychiatric wing and had to go to the main hospital where they could get a better idea of what we were all looking at.
More tests revealed cancer in his brain and spine — which certainly explained the pain, tremors, strobe light vision, and mood swings he’d been experiencing.
His physicality was so fragile they were afraid to biopsy his liver so they went with the lung — also risky. Diagnosis came days later. Stage IV, metastatic cancer. Squamous cell carcinoma. A slow growing cancer.
Yes. My question, too.
I could understand if this man seldom went to a doctor — like me. But how could a slow growing cancer spread to this degree in a man who, between his primary care doctor and specialists, was in a doctor’s office monthly, sometimes weekly, for the past 4 years because his body was breaking down and he thought he was losing his mind?
What is broken in our system that his condition could pass under the nose of how many medical specialists and no one connects the dots? Isn’t that what the primary care doctor — in the hub of the wheel — is supposed to do? If not, then we have a fragmented, scary system that offers us a false and fleeting sense of security. And a lot of dead elephants swept under the rug. Yes. I’m mad. Mad for change.
I know …
I’m not the only one who’s sat in emergency with a loved one threatening suicide — for any reason.
I’m not the only one to hear the words cancer — at any stage.
I’m not the only one to deal with my own cancer — while another dies.
I’m not the only one sitting at home in my bathrobe at noon, on a weekday, wondering what the hell happened and why.
I’m not the only one. That’s a lot of ripples in this vast ocean of health care, I think.
I know this little ripple of a post will not change an entire medical system, or health insurance protocols, or how doctors look at their patients, but I hope this will change how you look at yourself and the ones you love when you venture into this maze with a malady.
- It is an arena where doctors need to earn trust based on communication and performance, not simply degrees.
- Where word-of-mouth referrals within your trusted tribe should reign supreme, while good doctors are shared and poor doctors shunned.
- And where no one venture in alone without a strong advocating buddy system in place for patients and caregivers.
Ray didn’t die of cancer. He didn’t survive the system set up to find it and fight it. Big difference.
And, I believe his history with PTSD and depression contributed to his doctor’s perception of the patient complaints in front of her — while his liver screamed for attention. The liver that took numerous hits from the many medications prescribed to him to “treat” symptoms without further investigation. But that’s a blog for another day.
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A multi-billion dollar medical supplier, elected officials, and public servants are now added to that list of need for accountability in a broken system. UPDATE LINK: Ray Died. I Got Breast Cancer. Ethylene Oxide. Medical Mayhem.
If you are a ripple, want to be a ripple of change, or have experience to share, please add your voice, DEar HEaRTs. You are not the only one and neither am I. You matter to me! XO Bernadette
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