Happy Scribbling Scottish Granny
About Me — The Writer with Carcinoid Syndrome
I’m Elizabeth, I have a passion for writing and photography. I absolutely love to travel on our Harley Davidson and raise awareness of neuroendocrine cancer. I have a tremendous love for my family and Labrador Retrievers and try my best to live life to the full. My glass is more than half full — certainly not half empty and will always try and look for the best in everything no matter what hand I get dealt. A few years ago I wasn’t feeling very well and didn’t think too much of it, until it really did start to affect not only me but those around me in different ways. My life has really changed, as has my husband’s life, very fortunate for me he has decided to stick around. Something that has really helped me along the way is keeping a diary. I write a blog — www.smileeachandeveryday.blog where others can find out some more about me — the writer with carcinoid syndrome.
I said I hadn’t been feeling well, what made me persist to go to the doctors?
After losing nearly three stone in weight, dropping several dress sizes. Desperate measures were needed to find out what was going on. Constantly running to the loo, or NOT and shitting myself was becoming an everyday occurrence. Three weeks in hospital and several tests later a word I had never heard before was mentioned — carcinoid. I was asked to collect my pee over a 24 hour period in a container that resembled the one my folks used to get paraffin in. All tests done and back at the hospital. On one of the visits the consultant asked about my red face and neck. ‘How often does this happen’ he asked. Thought about it and realised it was five or six times per day. This flushing, the diahrea and the elevated 5hiaa urine test all concluded — carcinoid syndrome. At first I was put on three injections of octreotide (sandostatin) per day. I was taught to self inject. After a couple of months I was transferred to a four weekly long acting injection (sandostatin lar). One year later at a consultation with my doctor I explained the last week was horrific, it was the feeling that the injection had lost its ‘magic’ — after all my diahrea had decreased from 9 times per day to 4 and the flushing reduced to once or twice per day. I then got the injection every 21 days. I was transferred to lanreotide. Works similar and I got it every 21 days for several years, but then it started becoming ineffective, after 2 weeks I was like something out of the ribena commercial and running to the loo every couple of hours through the night, so now my nurse comes to the house every 14 days and administers the injection.
My injection is manufactured by Ispen; https://www.ipsen.com
My consultant introduced me to a charity — The Ann Edgar Charitable Trust. They offer a great support network to people in Scotland affected by Nets and carcinoid syndrome. Through the charity a few of us have got together and shared experiences. Lovely bunch of folk.
I would like to raise awareness of Carcinoid Syndrome, Neuroendocrine Tumours (Nets), Neuroendocrine Cancer through this blog. It won’t be all medical speak. Life is for living, and I do want to have some fun.
When I’m feeling up to it we take time to travel, a lot of the time it’s on our beautiful Harley Davidson.
Thank you for taking the time to read this. Have a wonderful day.
Originally published at http://smileeachandeveryday.blog on September 9, 2015.