Newbie

Hi muddling along. My lanreotide has been helping but for a while now I've felt less well: bloating, discomfort and pain. 

I saw a new consultant on Saturday at a different hospital,  this is a centre of excellence and what a difference. This morning they rang to arrange blood test. He wants a whole host of tests for a thorough picture to make a plan. Everything carefully explained,. I was ready to cry with relief. If after this he says OK, this is as good as we can get it, then I will deal with that knowing that no stone has been left unturned. He also was surprised that they didn't blast my grain sized bits in my liver especially when I'm still getting symptoms. 

Hi. So sorry to hear that things are not going too well at the moment but Saturdays consultation sounds really good and positive.Hopefully you will now receive the correct care and at least you have now had everything explained to you; it makes a big difference. Keep your chin up, I feel that the battles we face are short but the overall war against this horrible disease is a long game. Please feel free to message if you need to chat or rant. Take care

Hi Malbec, I’m feeling ok just carcinoid syndrome symptoms at the moment but they are quite manageable, I have a biopsy next week and then I see the consultants in mid May. I’m lucky as the A&E I went to originally (Aintree) has a specialist endocrinology team, half the MDT are based there and it’s only 20 mins away.  I like Devon, it’s a relaxing place walking in the black down hills or getting down to the coast. It’s important to keep strong mentally and physically, Take care of yourself and I hope you are enjoying the sunshine