First Neuroendocrine Appointment

Visited the  Endocrinology department of my hospital today and met my Neuroendocrine doctor. He explained the results of the major surgery I had in June this year, in which he suspects that they did not manage to remove all of my neuroendocrine tumours.

He explained that they do know from examining the tumours that they did manage to remove that my neuroendocrine cancer is a grade 1, which means it is slow growing. This is really positive news and I do feel very relieved.

He repeated my blood tests today and wants me to have another CT scan to ascertain whether I do still have some tumours. If I do I will be placed on monthly injections which will slow the growth of my neuroendocrine tumours even more.

I feel very thankful that I have received positive news today. It has been a very painful and difficult road to this point. I feel much stronger in myself and so thankful for my loving and supportive family and friends.

Started doing some exercise in the last couple of weeks. It's amazing after four and a half months post surgery how physically week I feel. Decided to walk up Darwen Tower and I felt ok as I was doing it, but the day after I was so ill. I lost count of how many times I threw up and my core muscles were so painful. I think little and often is the way forward.

I am starting to look for a challenge to do in order to raise funds for the NET Patient Foundation. As I am still recovering from my surgery, it will be next year.

One of the most difficult adjustments has been my diet. Luckily my GP told me about the fodmap list. This a really helpful list of foods which will irritate the bowel and a list of foods that should be safe to eat. It is a diet designed for IBS sufferers. You can check it out at

http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/

I wish that the hospital had told me about low fodmap foods when I was discharged back in July. It would have saved me many weeks of trial and error with my diet and reduced the amount of pain I experienced.