Such a day it was going to my oncologist appointment today. The event has filled me with so much frustration it makes me want to laugh. At this point I have no confidence in my oncology team.
Ultimately this is alright, in the scheme of things I believe all of this was supposed to happen. I don’t believe in predestination, but I believe we have experiences set before us to discover new gifts.
The gift I’ve been given has been my journey of cancer. To witness how much more difficult cancer can become when your oncology team continuously drops the ball. In my journey every new piece of information has been beyond each step’s projected worse case scenario. This has trained me to expect the worst, I am no longer shocked when a situation is worse than my doctor’s expectations.
Today peaking with my oncologist I asked why he didn’t want to use the Netspot kit? His response was that Netspot wouldn’t be effective in finding my neuroendocrine tumors.
Dear goodness I was filled with so much frustration at this moment. His statement when compared to the FDA’s website paints a very different story. To summarize, it says that the Netspot kit is used specifically to find NETs.
I knew I couldn’t push any further with the idea, so I changed gears. I asked him to refer me to a nutritionist. He was shocked by the very idea that I would want one, so shocked that he thought the idea was silly. Apparently it was beyond him to think that perhaps after (or even during) my chemotherapy that making changes to my diet could improve my health.
From where I am standing, going over what he has said to me, it makes me feel like he knows very little about my cancer. I can’t tell you how frustrating this is. This is terrifying, right now I am questioning whether the treatment he prescribed me was even appropriate.
The positive of all this is I now have a great perspective of the cancer journey. I have seen where the holes are in the treatment of cancer. Take for instance my own journey, after the removal of my lung no one suggested any kind of physical therapy. No one explained to me the details of what a NET is, what I could expect from it or how it could impact my life. There wasn’t even the mention that maybe I should seek out an oncologist who specializes in Neuroendocrine cancer. As my own devil’s advocate I know that I should have been my own health advocate. Its hard to be strong like that when it all starts. Right now I find myself wondering how any could possibly expect that out of anyone?
Now I am looking further into my own treatment, I am searching for a team that specializes in NETs. I will find someone who will listen to me, someone who knows about the cancer that I have, someone who has the skill to treat it.
If you would like to learn more about my journey through cancer and how this moment impacted my quest for person advocacy feel free to click this fancy link.