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Thank you for the smiles. Sometimes it feels like I am on an episode of defend your life. I had an MRI yesterday and the tech, thinking she was an expert of all things, couldn't comprehend when I said I have NETS...she kept saying you mean METS--no. I really think she just thought I was lying. This is hard enough but the lack of compassionate treatment for those responsible for your care and well being angers me. This past week I have a ton of blood work and lab tests--some are not back yet but the ones that did come back do not look good. The MRI results came back yesterday afternoon and there are white dense masses deep within my brain. My red blood cells are messed up, which could be causing the masses in my brain but who knows?? It also may mean I have the beginning stages of dementia. Well, why not--just add it to the list. If I cannot find some humor in this, I will literally lose my mind, which may happen regardless. The best thing that has come out of this situation is my pallitive care team. They have helped more than anyone and I feel blessed to have them in my corner. Now, my love, I may need to get a tattoo of a zebra???? Have an amazing day.
Replies to "Thank you for the smiles. Sometimes it feels like I am on an episode of defend..."
@jesicastorms
" Sometimes it feels like I am on an episode of defend your life."
Wow. What an apt expression. I am in a fairly good place now but it took five years to get-together a team that is willing to learn and finally talk to each other. Still, every time I see someone new, I see the incredulous responses .
For so long , I thought I was not explaining myself well until I realized that I was doing a pretty good job of it.. I was being looked at and treated like a horse . I was the first NET zebra my primary and first oncologist had met and what I was presenting seemed preposterous.
I hope you find someone to accompany you through this maze as you deserved to be seen, treated and cared for compassionately. What you report fits with others'experiences too. I like your astuteness. Here's to feeling some restoration of self trust and self appreciation for our advocacy in what can seem like such a high stakes game.
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@jesicastorms
Me too...
For me my Palliative Care team may not be able to perfectly coordinate or cure but they are steady in accompanying me.. and that is a solid contribution.