ncan patient conference

NCAN Patient Conference

Our disease is a hard sea to sail, its dark and the waters are rough. NCAN’s patient conferences are the lighthouses we need to see. The opportunities are vast and have great potential. The world’s best are at your disposal. Complicated questions are answered, resources are revealed and for a week you can feel wonderful as you meet others who walk the same road. If you have Neuroendocrine cancer you need to attend an NCAN patient conference.

These conferences create opportunities, open minds and save lives. Knowledge is power, especially when it comes to our cancer journey. If you don’t have the right information you will walk down the wrong path, get pushed down dark roads and be robed of your quality and quantity of life.

While at my first patient conference I learned so much about the disease, the community and how ignorance has hurt me. It opened doorways to talk with the world’s leading doctors and nurses specializing in Neuroendocrine cancer. The event created opportunities that would not have been possible otherwise. I was educated about symptom reducing treatment, life saving possibilities and so much more!

If you have Neuroendocrine cancer these conferences will give you options, open doorways and grant you the tools to travel this terrible road. When I went to the NCAN patient conference in Las Vegas it was a transformative experience.  When I met others sailing the sea of this terrible disease, it parted the clouds, opened the sky and warmed my skin to some sunshine.

Everywhere I turned I saw care givers, companions and cancer patients who know how the cancer serpent can change us. How it often steals a certain something, perhaps our purpose and peace, or the golden glowy goodness that helped us feel free.

It is more than magnificent lectures, learning and literature, it is a doorway to a welcoming world. A break from the fight, a massage of the soul and a sense that we have a place to go.

It is an opportunity for patients to listen, learn and share. A time to receive a reprieve from the horrors of this disease. It is a weekend to be surrounded by doctors, nurses and pharmaceutical leaders who care. To be educated by those who know how this illness grabs, takes and swallows us like a snake. Coiling around us twisting and squeezing till we’ve had all we can take. It is a place where we are welcomed by compassionate, empathetic people educated enough to help us with our hurt.

In your time here you will see a sight that will set you free. If you are sitting in the shadows, lost on a road and feel you have no place to go, look to the light and find your hope. At this event there are others who have walked your path, who can light the road and show you home.

Neuroendocrine Cancer Awareness Network

Shawn White Blog

Living With Cancer

Frustration – A New Universe of Cancer

frustration

Frustration

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’s frustration

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

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.