Dear Doctors, While you profiled stress, he died of cancer. #PTSD. #Depression. #Anxiety.

Dear Doctors, While you profiled stress, he died of cancer.

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.

Denial never sustainably served anyone so 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.”

 I wrote that in July’s, Why I’m Not Fighting Cancer Again blog, and 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 spine and brain – which certainly explained the pain, tremors and strobe light vision 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.

Slow growing?

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.

To be continued…

If you are a ripple, want to be a ripple of change or have experience to share, please add your voice here, DEar HEaRTs. You are not the only one and neither am I. You matter to me! XO Bernadette

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10 thoughts on “Dear Doctors, While you profiled stress, he died of cancer. #PTSD. #Depression. #Anxiety.

  • February 6, 2018 at 6:51 pm

    ANGER! For all the misdiagnosis. ANGER for the doctors who stop looking at us! They may be good doctors, but they will miss things. Change your doctor every so often and then someone you don’t know might have a good look at you. ANGER for the over treatment and so much more.
    Oh! We all make mistakes and doctors are good people, but often they are tired and jaded and we pay the price. We may be semi friends and enquire about their gold game rather than make a fuss. Sick people need someone to advocate for them and sometimes our patient won’t let us. We often work from little understanding since this might be our first brush with real illness.
    It is simply a very terrible situation.
    I am so sorry Bernadette, Love you, Jan

    • February 6, 2018 at 8:27 pm

      All good points, Jan. And I know you’ve seen A LOT in the care taking that you give and the volunteer work that you do. I wish Ray could have changed his primary care doctor but, sadly, this was the only one in our area that accepted his insurance. (This is becoming quite a problem in our country with our health insurance model.) I feel like information and experience shared is power in circumstances like these which is why I have chosen to write this post. Plus, it was my way of adding “healing memories” to this day so all was not lost. As a matter of fact, Ray’s phone did a little “BiNG” when I chose the above scene of the ocean over a photograph of him! Like Ray was saying “Let HE be not me but someone else’s HE/HER that is still among the living.” 🙂 Love you, hon! Always happy to see your wisdom shared here. XO

  • February 6, 2018 at 9:36 pm

    We are a lot luckier here and changing doctors is no trouble. Like you, Bernadette, I avoid them, since I think things often right themselves, Some medicines give unwanted side effects and then the side effects get treated, especially with older people. I am a bit cynical here I know and I do see situations where the disease isn’t spotted. I don’t blame the doctor, they cannot know everything, but I am not loyal to a doctor. Our systems are so different we can’t compare, but mistreatment and not paying attention to what the patient is saying, makes me hot under the collar. Too late for Ray, very sadly, but I see people spending their lives going to all the health professionals, being very miserable and leaving out all the things that make life worthwhile. But enough of my rant I’ll step down from the soap box now LOL. (sigh) Life can be so hard, Love, Jan

    • February 7, 2018 at 2:34 pm

      I’m with you on all of that, Jan. Medications to mask symptoms and then to treat side effects from medications is a slippery slope to be approached cautiously. Not my choice, as you already know. As for me, I am quite astounded at my “new” tatas. 😉 I understand the swelling will go down (and am glad for that … feel like I am going to pop!) but it is an interesting “new view” of myself when I look in the mirror. When they match better I will have to see if I can play at being a tight sweater girl … at the grocery store? The actor in Ray would have had fun with that … XO

      • February 7, 2018 at 2:44 pm

        Now I feel perfectly happy to eat cup cakes….. with cherries on top (giggle)

  • February 7, 2018 at 9:04 am

    The key point: “Ray didn’t die of cancer. He didn’t survive the system set up to find it and fight it. Big difference.” The system is broken. There are doctors few and far between who don’t allow patients’ true ills to go unnoticed. Thank God I have one who steered me in a direction which saved my life, ultimately. No one should have to suffer like Ray did (and like you are). The elderly are especially vulnerable to this broken system. I hope one day this country gets a hold of this problem and progresses to the level that Western Europe and other global communities have maintained successfully for decades. Thank you for bringing this to light and may YOUR light continue to shine for us, always.

    • February 7, 2018 at 2:41 pm

      And I am SO grateful you have/had the doctor that you did so that got caught quickly, hon! You are right about the elderly as well. It is frightening. So many of them are having to navigate this system at a time in their life when physical and mental faculties are waning … Who is looking out for them? Where is the village? XO

  • February 8, 2018 at 12:17 am

    Thank you for posting. It is indeed a shame, and we as a country and society are shameful the manner in which we accept that we are supposedly “taken care of”, and the elderly and ill are taken care of in the US.
    Pres Obama bravely tried, and I tried with many others, to secure HRC as our leader ie “it takes a village”, who along w Sen Kenneday, started the converstion long before Obama. She was to continue the ideas of both Pres Obama and Bernie, but to no avail. There simply was not enough of us who were educated and courageous to fight against the greed of the uber-wealthy and ignorance of the uneducated.
    So now, unless you are wealthy, you must die if you have a chronic disease such as cancer that goes undiagnosed OR the treatment of which you cannot afford. It is as simple and deadly as that in the US.
    I have nothing to offer as hope, but for another election mid-term coming the end of this year. It will indeed take a revolution of sorts, as the Koch Bros have promised yet again their $Ms at ALL election levels then to secure their platform that hurts the 98% of us.

    • February 9, 2018 at 6:01 pm

      Thank you for sharing, J.I pray for the day when we can muster the consciousness, as a whole, to no longer allows political agendas to divide us at the cost of our humanity. Yes. People are dying on both sides … and the care so poor for others that they might pray for their release to a Higher Order. XO

  • February 9, 2018 at 12:53 pm

    I am reminded that having an MD behind one’s name doesn’t mean that he/she graduated cuma sum lade. There are those out there practicing who fared no greater than a C-.

    We won’t easily change what has been happening for centuries in the medical or pharmaceutical industries. Nor, would I altogether want to. For I am now dependent on both, when once I swore it would be neither. And after a few horror stories, I have been blessed with some awesome physicians.

    Scary medical issues can keep us in a whirlwind or whirl-mind. Thoughts become hurricane torrents that can’t land ground ~ can’t find their footing, much less make connections. I am reminded of what I “knew” when my dad was dying but allowed a hospice nurse to dissuade. Shock and denial bounced around in my brain like rubber. I couldn’t stand for myself, much less try to defend my “knowing” from her logic. I am the one left with that guilt, not she.
    Then there are those medical problems that can look like psychiatric ones. A client that I worked with was treated for a devolving bi-polar disorder, for over 5 years, when it was his thyroid that was whacked out. Thyroid medicated, bi-polar gone.

    I think one of the most important “take aways” from your post, Bernadette, is: “know thyself”. Then fight for what you know. “Know those whom you love” and fight for them too (as you did for Ray, hon. But alas it was too late).
    You wrote something once Bernadette about feeling dismissed and diminished in an intimate relationship, and how you knew it was time for a change. But there are few relationships as intimate as the ones that we have with our docs.
    Here is my wrap-up: If you feel dismissed, un-heard, diminished. If you “know” there is more to your story, but you cannot find the ears to hear, don’t go it alone. (Ray finally started taking you with him to his doctor’s appointments. That is when things changed. )
    And don’t trust that your doctor graduated top of his class in both academics and compassion. (sometimes, as Jan said, it can be one but not the other. And we are the ones who settle.)
    Seek a doctor like a lover and find one who can be intimate, caring and RESPECTful, knowing his/her limitations. A good doctor will refer you to another and do what is best for YOU.


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