I found the NETS patient Facebook forum so helpful since my diagnosis in June 2019. Everyone has a different NETS story but we all have the same niggles and anxieties. Culturally we are not necessarily very good at talking but I have learned to look at this differently, After all it is my body and my decisions but to get things straight in my head I asked the professional for their advice and opinion. I had to go away and contemplate my options.

When I was first diagnosed I wanted to become a NETS expert. I very quickly realised that the more I read the more frightening and complex it became. I decided to adopt the philosophy ‘just tell me what to do and where you want me’. This is fine in the beginning however, as the treatment progresses I needed to understand more of what my body was being exposed to.

Only with the trust of my consultants and the support team around me do I feel I can make a balanced decision with my care and treatment. It has taken a while to get to this position with some honest and open conversations. We had to establish a comfortable relationship between us all to move forward.

Never be afraid to ask questions, even if they seem silly, to make sure you fully understand what you are about to commit your body too.  Feel confident in the team to challenge advice so everyone is aware of how you are feeling.