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NETs has totally changed my life. I was a bit of a gym junkie before and now have had to cancel my membership due to pain and fatigue.
1. What impact has NETs had on your life?
NETs has totally changed my life. I was a bit of a gym junkie before and now have had to cancel my membership due to pain and fatigue. This has been the hardest thing to deal with. On the upside I now am looking at life from a different perspective. Im fully aware of every day and try to squeeze in as much as I can. Im consciously trying to spend quality time with my kids and grandkids. Sometimes family forget that Im sick and I often have to remind them. I guess its that cancer/chemo mentality, where your expected to look sick with no hair and eyebrows.
2. What has been most helpful to you in your NET experience?
Without a doubt The Unicorn Foundation! If it were not for you guys, I don’t know what I would have done!!! I cannot speak highly enough of everyone I have dealt with. You are an extraordinary group of caregivers, volunteers etc… Whenever I have been worried due to lack of knowledge by my treating team, Kate is always there with a reassuring phone call or email. Also I would like to give a special thank you to all the members on our Facebook Support Group. What a wonderful bunch we have. Always ready to offer advice despite their own circumstances. So, so grateful.
3. What advice would you give to a newly diagnosed patient?
Firstly I would advise them they are about to ride a merry-go-round. Where sometimes you can jump off for a while, but oftentimes you are on it for quite a while. Secondly I would definitely direct them to the NET specialist directory. This is definitely important. Thirdly, in the beginning keep online research to a minimum for your own sanity. And finally you need to be your own advocate! Ask questions. If you don’t understand ask again. If you feel something is wrong, question it! Get copies of all your reports.