Living Life Out Loud...

Many of you probably already know that "LOL" typically stands for "laughing out loud" but here on my blog, it means "living out loud". For many adults being authentic no longer comes naturally. We must work at it. Somewhere between childhood and adulthood we have lost the ability to simply LIVE. After dealing with a lot of personal trials, including verbal/emotional abuse and being the caretaker for my father prior to his death, I have come through and not only survived, but am working on thriving. I have maintained a sense of humor & have been resilient. Here I will write about my life and what's going on in my mind. Hence is the life of a writing, child-at-heart, sage-like goddess who refuses to "grow up" if that means being inauthentic.

Monday, April 3, 2023

AYA Cancer Awareness Week

[photo from September 2020]

IT IS AYA (Adolescent and Young Adult) CANCER AWARENESS WEEK. I'll be sharing throughout the week, but here are just a few of my thoughts that I want to share.

The Hippocratic Oath states "Do no harm."

However, story after story in the AYA Cancer Community proves that physicians are indeed doing harm. They are doing harm by not listening to their patients when they clearly state their symptoms. They are doing harm by giving up when the usual tests show no results. They are doing harm when they refuse to refer to specialists even when requested. They are doing harm by not taking the time to figure out what is wrong and working WITH their patients to FIND solutions!

Physicians are indeed doing harm when they ignore young adults and when they believe the outdated data and stereotypes of "you're too young for cancer," among others. No one is too young for cancer. Cancer does not discriminate. People do.

As a young adult bladder cancer survivor, I fought for more than 2 years to get my diagnosis. I did not present typically - go figure - women have different anatomy so who would think they would present differently than men with stereotypical cancer that affects old, chainsmoking white men. I shouldn't have had to fight. I shouldn't have needed to BEG for answers.

If a man complained about urinating blood clots, all the alarms would have been sounded. The doctor wouldn't have asked "Are you sure it's not your menstrual cycle?" as if you don't already know that those things come out of two completely different orifices!

Physicians are also doing harm in our survivorship phase. They do harm by not connecting us to survivorship programs and centers. They do harm by not devising a comprehensive survivorship plan and continuing to support us in our survivorship. They are doing harm by not believing, researching, and helping to find solutions to the permanent side effects that many of us face for the remainder of our lives.

Cancer myth #6474 is that when treatment is over, so is cancer. The ongoing struggles we face are mental, emotional, physical, financial, and societal. They are neverending and we are often scooted out the door as we ring the bell - if we even get to ring a bell.

Life does not go back to normal - we create a new normal with whatever we have left after cancer. There is no going back to who we were before. 

 

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