Showing posts with label Oncology. Show all posts
Showing posts with label Oncology. Show all posts

Sunday, 16 June 2013

Curve Balls

 

SUNDAY, JUNE 16, 2013

Curve Balls


Man, life throws many curve balls, I was not expecting one that came flying at me last week.  I was Fired from my volunteer work.  Not the accomplishment I had expected, and it was devastating for me. I loved that job; I loved the people I worked with, and I especially loved all the patients who touched my life. I violated HIPAA law and took pictures of patients. First off, I just want to say they all had my permission to take their picture, and 2nd I would never post something about a patient without their consent. However, I recently had my blog redesigned, and all the journal entries I had written and drafted, were posted public without me knowing.

  They were written a year or year and a half ago, when I was asked not to mention the facility that I was volunteering for or the patients, I immediately drafted all of them for my children to have, and for myself to look back and remember. For those of you who do not know about drafting, it is a journal you write and never post for all to see but is kept secret and I eventually wanted my blog to be made into a book for my children, so I did as I was asked, and I took all the posts off my blog immediately.  To be honest, I have a ton of drafts, things I don't want the world to see but have saved for my family to read long after I'm dead and gone.

When I went to my "volunteer" job 2 weeks ago, I was called into a meeting where I was "let go" I was told if an employee had done this, they would be "let go," so they felt it was time for me to be "let go" I asked them if I could delete the entries. The answer was "you have 3 days to get them off your blog, or we will be forced to file a federal suit"  so sad, I took off my scrubs and handed in my badge out the door I went feeling like I had just been defeated by the world, I cried uncontrollably for hours, well actually the crying went on for days, I finally got it controlled to a slow tearful drip after a few days.  When I got home, I asked our attorney if this could happen to me; he said NO, that the facility I was volunteering for could not sue me for violating HIPAA laws the patient would have to be the one to sue me, --and since every one of those patients or their caregivers still email me regularly, (except for one), I contacted each person who I had ever posted about, got written permission from them or in a couple cases the patients had passed on, and I got permission from their caregivers, who by the way also asked me for a copy of what I had written, by this time I had already deleted them.  However, I told them once I had their written permission, I would send them a copy of what I had handwritten.  Each was so grateful, I had journaled, and each had already known about the experiences and the intimate talks I had with them, so it was not a surprise to any of them when I read the journaling to them.

 I'm not sure what this world is coming to, I do understand the HIPAA laws, and I do understand the right to have privacy, but I would never post something without first asking the patient. There was only one post that I had written that I felt was imposing without permission; names were never mentioned, and if this person had found it on the world wide web (1 in a billion) They could have guessed it was them I was talking about, but there were no pictures or proof.

I learned a lot from this experience, and although I think "they" were being a bit dramatic in their decision, I know the Lord has something else planned for me.  It's important for me to be in a place where I am not only needed but appreciated for the service I love to give.

Monday, 24 October 2011

Neuropathy

 

MONDAY, OCTOBER 24, 2011

Neuropathy

Just when I thought I was done with neuropathy.... surprise, it's back. My legs feel like the nerves have been exposed to the air again, and the pain is sometimes excruciating. I am learning that a small percentage of people who get neuropathy from the effects of chemo must deal with it off and on for life--yes, I am one of those people--no big deal, I can handle it--
Today when I was at work, one of my friends I had not seen for a while came over to talk to me. She was wearing a pink beanie to cover her bald head--she went through a double mastectomy a year and a half before I did (stage 2). Now, it has metastasized to her lungs--she showed me the X-rays --I cannot stop thinking about her today. Cancer really is this ugly VILLAIN, it invades lives, and just when you think you've turned a corner looking to a bright future, BOOM, it's back to haunt and taunt you. Whether a recurrence or side effects, it never goes away.

Our First and Last Thanksgiving

 Hey Frenchie- I am so overwhelmed and feel like I have no one I can trust to talk to. You were my one and done, my first and last lover. Th...