I was diagnosed with a rare Nets January 2018 after being admitted in to A&E and operated on for Appendicitis. When I was in recovery I was told that I didn't have Appendicitis but terminal cancer with less than a year to live. I later found out that I was only expected to live 2-3 months but after being discharged from hospital I had no contact at all for 6 weeks from anyone. I finally managed to contact someone who told me I hadn't got terminal cancer after all but a rare kind of Nets which was spread from my liver across my peritoneum and into my ovary. The surgeons had put a stoma on me which leaked all the time. So for 3 months we went through. hell on earth with two Consultants one telling me I should have my tumour removed the other saying no it wouldn't serve any purpose.I had an operation last April to remove a tumour, reverse my stoma, remove a section of my bowel and colon and I have been having monthly injections of Octreotide I have had to find out information from the internet as nobody had sat me down and explained properly about Nets. I went to the the hospital's website on NETS which was very helpful. In August I had an appointment down in London at the hospital with a Consultant who was very patient explaining what was happening to me.. I still have a lot of problems resulting from the bowel surgery and reversal of my stoma, trying to establish what I can and can't .eat but after 16 months I think I am starting to get my head round it all.
I am very, very lucky, I have a wonderful husband who holds my hand when the pain is so bad I cant cope and understands that although everyone says ':Your looking well', and that they're glad I'm getting better that I'm not. I'm off down to London for another Pet scan next week and seeing the Consultant in June who will decide whether to take my ovary away.
Its been a lonely journey for us, some friends have turned away and some family members too and we don't live in an area where there is a support group but I'm still here and we still count our blessings that my first diagnosis was wrong.