A) You need to learn about your new world, about treatments, your diagnosis, support and so on. There is far too much information out there, so you need to learn what is relevant to you.
Get a hard cover notebook and make a note of everything to save you trying to remember it later, your full diagnosis, you need to know exactly what your diagnosis is medically, so that you get the correct advice at all times.
Use the notebook to add appointment dates, times & locations. You will probably be seeing a lot of different medical professionals, use it to record names of doctors, nurses, secretaries, consultants
Use it to note the names of drugs, use it for everything and anything you are told at meetings. By using it to record everything you are told, apart from anything else, doing this will give you a sense of control over things at a very confusing time.
B) Consider getting yourself counselling, ( this diagnosis is a big deal ) and if you have a life partner consider both getting it. This diagnosis affects both of you, it’s not just you the patient. Many people with a NET are living well, just with their NET in the background, a counsellors register you can rely on is [to be decided] ( link)
C) Learn about and use the NET Patient Network resources, over the last decade the NET Patient Network has collated a lot of information for you to use using both our Facebook Page ( https://www.facebook.com/NeuroendocrineCancerIreland ) and YouTube ( https://www.youtube.com/user/NETPatientNetwork )- much of the YouTube content is drawn from our patient day presentations each year from the last decade.
D) Recognize that you are not alone. The Net Patient Network is a community of people affected by a NET diagnosis who have all been where you are . There is a lot of help in this Network and you can start by joining the Facebook Group, Neuroendocrine Cancer Ireland Support, set up by two of our members, https://www.facebook.com/groups/neuroendocrine.cancer.ireland.support
