NCAN Blog: A Lightbulb Moment.

May 1, 2021

By Anne Dabbs,
NCAN TN Chapter Leader, NET Patient

“There are two types of tired. One that requires rest and one that requires peace.” — Lauren Fortenberry.

All of our Neuroendocrine Specialists will tell you that the overwhelming number one complaint they hear is fatigue. There is the physical fatigue that is imposed upon our bodies by our cancer. And there is the mental exhaustion as we try to live “normally” with our chronic disease. Some of it is cyclical and revolves around our treatments, while some is driven by the very real scananxiety that most of us experience at one time or another. Some of our exhaustion stems from the challenge and burden of learning an entirely new medical language. Much of our fatigue is from external sources, but we also have the capacity to churn ourselves into a state of exhaustion by not managing our thoughts about Neuroendocrine Cancer.

Many of our long time thrivers will admit to having a light bulb moment about their diagnosis. It may be an initial emotion following a ridiculously long diagnostic period. Others have had to work determinedly to achieve an inner peace with their disease. I think all of those who are living well with their NETs for many years will agree that a light bulb moment of acceptance was pivotal in their journey. It was a moment of peace with their new normal.

What was your light bulb moment? Can you identify the situation, the person, the test results that allowed you to become hopeful and joyful again? Can you remember the release of continuous stress leaving your body as you realized “Hey, I can do this!”? Can you retrieve that moment of survivor mentality to help boost yourself up again and again when needed?

Can you share your lightbulb moment with other NET patients struggling to adapt to their diagnosis? If you can verbalize it, I hope you will. If you can write it down, I hope you will. If you can act upon it, please do. We all need a ray of hope, a shining light of encouragement.

Raising awareness of Neuroendocrine Cancer is beneficial to us all. The developments in treatments and testing are progressing at a very rapid pace, and our community is growing in numbers and in knowledge. We need to be ready to help patients who are struggling to accept their diagnosis. By sharing our stories, we change the focus from “I” to “we”. Then, we can work together to turn “illness” into “wellness”.

Share your lightbulb moment below or on the NCAN FB page. Your light may be exactly what another zebra needs to hear.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

Comments(11)

Aleta says
August 2, 2021 at 7:35 pm

I guess it took a year and a half for my lightbulb moment following my initial VATs for removing two lung wedges with one typical and one atypical NET, and a DIPNECH diagnosis after surgery. I did a lot of research, and learned so much from others during that time- including the NCAAN resources. It took 3 stable chest CTs and a negative GA 68 scan, then I decided I’m going to be living a long time and decided to get on with it. The fear of the unknown and the loss of the sense of control I thought I had (which is an illusion anyway) were initial barriers, but as time passed a new sense of acceptance and gratitude that “it is only this” has helped with my new normal.
Alysia Christensen says
May 12, 2021 at 11:50 pm

Anne Dabbs, thank you for always thinking of others and always being willing and ready to assist anyone with wherever they are on their journey! It helps me so much because I know you have, and are living, the same journey even if your path has taken different turns. I feel like I am going to always want to help others because I feel like giving is paying it forward because I needed help especially in the beginning. And my light bulb moment thus far is when I realized that my local oncologist and I didn’t want the same outcome that I did and I needed a new oncologist to advance to where I felt like I could fight the good fight! When a person is in a position of that much importance you have to be working towards a common goal. I am so glad that I found a wonderful team member who wants the same things that I do and is willing to facilitate those goals. Thanks Anne for also being a great team member on my path!!!
- REPLY
  Anne says
  May 18, 2021 at 4:18 pm
  
  Alysia, You speak the truth! And your lightbulb moment has paid off for you. I am so encouraged that you are getting the help you need now with such a competent team. Thank you for your kind words. I look forward to your renewed strength and energy very, very soon!
- REPLY
  Anne says
  May 19, 2021 at 10:20 am
  
  Thank you Alysia! I am so thankful you have had a lightbulb moment and are acting on it in such a positive way. I look forward to sharing good times with you!
- REPLY
  Lori Huffman says
  June 18, 2021 at 5:06 am
  
  thank you for sharing your light bulb moment… I think that it may be part of my issue… my local oncologist left the office and I really don’t have the same connection to the people that have taken over (plus I so dislike the location of the office and other stuff) maybe I do need to find a different doctor… at least right now I still have my specialist
Virginia Brown says
May 12, 2021 at 12:35 am

I had been coughing more often, with more triggers, just assuming it was mechanical aortic valve (2 implants) since age 21. In 2018 my pulmonologist told me he saw a node slowly growing and I needed a biopsy at 1.5 cm. Previously dx’ed w bronchiectasis. Ended up having 8 tumours plus DIPNECH. thoracic surgeon said he wouldn’t touch me. Go home and live my life. I met a NET specialist and he took me on as a patient in another city. He took my case to his tumour board and I was deemed inoperable. Currently on Lanreotide since then every 28 days, CTks and Octreoscans have shown no growth, just stability. I used to be very hoarse every winter, not anymore. Productive cough from 20x/day to about 5-10. Best I can hope for. Was concerned about lump in sacral area (“lung Mets) but only calcification after another Octreoscan.
- REPLY
  Anne says
  May 18, 2021 at 4:21 pm
  
  Hello Virginia, Thank you for commenting. Your Nets journey has certainly taken some twists and turns. So thankful that you are enjoying stability. Not everyone realizes that a stable disease is a good thing. I hope it continues for many more years!
- REPLY
  Anne says
  May 19, 2021 at 10:23 am
  
  Hello Virginia, your Nets Journey sure has had some twists and turns. So thankful you have found the right treatments. Wishing you continued stability! Thank you for reading and commenting on our blog.
Nancy says
May 11, 2021 at 7:56 pm

Truth!
- REPLY
  Anne says
  May 18, 2021 at 4:22 pm
  
  Thanks Nancy for reading and commenting!
- REPLY
  Anne says
  May 19, 2021 at 10:25 am
  
  Thank you Nancy for reading and commenting on our blog. We value your encouragement!

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A Lightbulb Moment.

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