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

net specialist

Caught in NET Cancer? Cut yourself out with a NET specialist

With each test of pain, I’ve discovered new ways to explain all the gifts I’ve gained. I hope my hardships will help you have the highest quality of life you can live. The cancer journey is terrible, everyone wearing this badge of bad knows this, but in our journey, we are literally held down by a NET. Often our net is invisible making it impossible to see how we are anchored to the ground. To fight our cancer, we must have the right people on our side, who can see the invisible net and can sever its strings. I have learned we must surround ourselves with experts who can spot and treat our specific condition. We might not be able to escape our confinement, but we can learn to love the life we live and make the most of our moments. With the right people on our team we can treasure our time. What kind of expert do we need for our NET journey? We need a team of passionate, dedicated and science-based experts. Consider having the following doctors on your all star team.

  • Oncologist
  • Endocrinologist
  • Gastroenterologist
  • Cardiologist
  • Primary Care Physician (PCP)

If you have NET cancer, you must have an Neuroendocrine specialist on your team. I can not stress this enough. The sooner you find one, the healthier life your will live. Of course, that raises a few questions. How do I find one? How do I know they are a NET specialist? How will I determine if they are right for me?

The Neuroendocrine Cancer Awareness Network is the best resource available to us. They know what its like to wear the badge of bad and be tied down under this nasty net of cancer. This amazing organization will help you find a local support community, guide you through the education process and aid you in finding a NET specialist.



Caught in Net Cancer 2

Shawn White Blog

Discovering Hope

Chemotherapy – Personal Advocacy

Chemotherapy

What are you willing to Experience?

When I began my journey I wasn’t told what to expect.  Sure the nurse practitioner sat me down and rattled off a series of symptoms, but no one shared with me its true gravity. Hollywood talks a lot about what it is like, but all fail to showcase how terrible the road of  chemotherapy truly is.

The excitement of a Hollywood team would have been an improvement over my experience. Detached and not involved would be how I would describe my oncology team’s role in my treatment.  I do not feel like I was treated like a person while in their care.

Cancer was bad, surgery was horrible, but the chemotherapy and my oncology team made the experience unimaginable. No one ever asked me what I was willing to experience or lose.  No one suggested a care plan that would prepare me for what I was about to live through.  I had no advocate, no mentor, no guide.

That hardship made me the Man I today

Traveling the united states I met others who experienced my very same journey and discovered they too struggled through the same horrors I faced.  It opened my eyes to the number of patients who have lost their life or quality of life due to negligence, inattentiveness and ignorance.

When I started my journey I was told by my thoracic surgeon to avoid researching my disease. In fact every member of my health care team suggested I turn the computer off, close the books and listen only to them. This created a terrible path I now know is quite common for the kind of cancer I have.

When I first met my oncologist it felt good to meet a health care provider excited about my disease. I took that as a good sign. Instead it turned out he was aroused by the idea of treating someone with a rare cancer, but not interested in researching it.

The first doctor appointment I had with him I asked, are there any specialists for this disease, is there any research and are any trials available. His answer was no, no, no. Later I discovered every one of his answers were false.

I want you to know there are answers out there. You have options and there is a good chance the doctor you have right now might not be the right doctor for you. If you have a general oncologist, find a specialist for your disease. To live the longest and highest quality of life you must have the best, don’t bet your life on a losing horse.

Get a third opinion, research, build a support network and find others who are suffering with your disease. Not all the insight they give you may be valuable, but the comradery is. Everyone needs a network of friends, some of the best friends you can have in this journey are others sharing the same perilous path.

Treatment

This is a basic primer, an explanation of my experience. Its intent is to help you gain a greater understanding of the experience. My journey might not be an indication of what you will face, but the more we know about what could happen, the more we can prepare for what might happen. You’ve already been blindsided by cancer, don’t get knocked off guard by the side effects of your medicine.

What can I expect to feel?

Nausea

When someone tells you that you’re going to experience nausea, they are going to fail to adequately describe what it might be like.

Imagine you need to throw up every moment of every day while going through treatment. If your cycles cover five months, your going to be sick for six.  The nausea is all encompassing, permeating every facet of your existence.  I had moments where I was taking a shower and I would suddenly throw up, while I was eating I would throw up, while I was driving down the road, while I was being intimate with my woman, while I was sleeping, I would throw up.  Imagine having the flu every day, every single day.  Once you have done that you will have just a fraction of an understanding what it means to have nausea while going through chemo.

Neuropathy

When someone tells you that you’re going to experience neuropathy, they are going to fail to adequately describe what it might be like.

Have you ever had the sensation of your hand or foot falling asleep?  Perhaps you’ve had some numbness in your extremities?  Maybe you’ve had moments where it felt like someone was stabbing you with a knife?  Maybe you’ve even been touched with something super hot?  Imagine all of these sensations, imagine them alternating from one to next in a friendly game of musical chairs. This is neuropathy, it starts off light but it is noticeable.  I told my nurses and doctor about it, but they didn’t care. To them the side effect wasn’t that big of deal.

Would these sensations be that big of a deal to you?  Maybe not, but let me translate them to real life situations.  Do you enjoy kissing?  Being intimate with your  significant other?  Do you enjoy the sensation of being touched?  Maybe you like how warm water feels against your skin?  Would you say that you like to feel textures, food, clothing or… well anything at all.  If you enjoy these experiences you must be willing to let them go.  Sure the doctor may say this temporary, but sometimes they are permanent.  Are you alright with losing the ability to feel the world for the rest of your life?

Infertility

Well for some this might not seem like that big of deal, but for most it is.  There is no experience like this one.  Maybe you don’t have any kids, perhaps you would’ve never had any anyways, but it should be your choice.  Are you willing to never be able to have kids?  It is important that you take some time to think about this before you are pushed into treatment.

Hair Loss

When someone tells you that you’re going to experience hair loss, they are going to fail to adequately describe what it might be like.

To wake up in the morning and see that your pillow is covered with so much of your hair it looks like a cat has just shed on it.  To run your hands through it and watch clumps of it come loose between your finger tips.

So much of your identity is wrapped up in your hair.  Its not just the hair on your head though.  Everything goes.  When my hair started falling out of my head it was traumatic, but when my body hair, eye brows and eye lashes started falling out it was horrific.

Of course this is just a temporary side effect, but I have read about some chemo drugs where it wasn’t. Before you decide to start treatment, ask yourself if the loss of your hair is worth it.

Fatigue

When someone tells you you’re going to experience fatigue, they are going to fail to adequately describe what it might be like.

I think the way it was described to me was that I was going to be really tired. Tired… well that doesn’t do chemo fatigue justice.  If I were to describe it I would say imagine pouring glue into your muscles while wrapping ropes of exhaustion around your bones.  Take those ropes and pull them taught, then tug on them back and forth so they would grind against your bones and tear against your muscles.  Imagine a sensation akin to your flesh ripping as you stand or walk. An exhaustion that keeps you out of breath,  causes incredible pain when you try to move and makes every activity unbearable.

I’d say it is similar to the body sensations of being up for days and days.  Its the sick lethargy you get when you have the flu or are incredibly depressed.  Its an inescapable, never ending horror.

Conclusion

These are just a few of the experiences you may encounter while going through treatment. You need to know if you are willing to endure them.  More importantly you need to know why you are enduring them. What benefits does your doctor say you will gain from their suggested treatment?   Ask him to provide the data and research supporting his claims this is the best course of action for you. If it exists he needs to show it to you. Finally, how much pain are you willing to pay to live, and how much life are you buying with the pain your spending?

You are the only one who can answer these questions.   The choice you make needs to be yours and yours alone.  You are the only one who has to live with the side effects of the treatment, no one else can take that horror from you.  Live for you, live for your reasons.  If you don’t want to do chemo, don’t do chemo.  If you want to do chemo, do it for you.

Shawn White Blog

Cancer Coach 

The Placebo of Ernest the Life Coach

NCAN