informed decisions

 I'm typing this between "necessity" runs because I'm also prepping for a colonoscopy on Tuesday.  Why so early, you might ask?  Well, it's because I have my liver biopsy in Beckley on Monday and to avoid an embarrassing accident while trying to hold still for the radiologist I started my prep on Saturday.

Friday I had a virtual consult with the NEW surgeon doing the procedure on Tuesday.  As usual, he gave me some additional information not disclosed by the local surgeon or radiologist and it rocked me.  The liver mass that I had believed was the hemangioma I've known about for decades, isn't it at all.  It is a different ~ new ~ mass in a completely different location of my liver.  So it wasn't something existing that grew, it is something that grew out of nothing.

I left a message for the cancer center and later spoke to the nurse practitioner on my "case."  I asked if when they have information ~ new or old ~ if they could please discuss everything with me just to make sure I am aware of ALL of it.  I can't make informed decisions if I'm not being informed of everything that is seen, found, or happening.  

The CT scans were done on 13 July, and based on what the radiologist told my general practice physician, an MRI that focused only on my liver was done on 6 August.  I canceled the colonoscopy scheduled for 20 August based on the radiologist and local surgeon who was to do it feeling that the focus should be on the liver, not my colon.

It was not until the oncologist called me the afternoon before my consultation with him on 27 August that I was told that his main concern was actually a mass he saw on my colon in the original CT scan from July.  The liver and lymph nodes were of secondary concern to him.  This was unexpected news to me at the time and had I known that there was anything of concern in my colon, I would not have canceled the colonoscopy in August.

I cannot fault my GP.  He's not a trained radiologist, or surgeon, and had to rely on the knowledge and education of those two specialists.  But the fact that the local specialists overlooked what is going on with my colon and did not put any sense of urgency on getting the colonoscopy done was extremely disheartening.  When the local surgeon was unable to do it on 3 September because of a boil water notice, and eventually wanted to reschedule it for the first part of October, there was still no sense of urgency.

I will, however, fault my own lack of questioning for specifics or clarification.  If this was in pre-COVID-19 days, I would have had follow-up appointments in the office, where images would be shown to me and explained.  Where I could point and ask "what is that?" and have a better understanding of what they saw.  My only job in all of this process is to advocate for myself.  Not to blindly trust.  To ask questions.  Demand explanations. Expect answers and clarification.  Require visual evidence.

I've been failing at that because all of this has come as a shock to my senses.  But no more.