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1. What impact has NETs had on your life? 2. What has been most helpful to you in your NET experience?Most definitely meeting others with NETs at our supports groups which made me feel less alone & scared. All of the information provided online by The Unicorn foundation is invaluable.
Apart for the very obvious physical impact. The next biggest thing was the concern around how much time I would be away from work for appointments & surgeries. I'm very fortunate to work for a company that just simply said your health comes first and have supported me every single step of the way.
3. What advice would you to give to a newly diagnosed patient?
Keep a journal and or diary to write all of the very many questions that will pop into your mind. Take this to every medical appointment and where possible also take a "buddy" to take notes so you can focus & not stress about forgetting valuable information.