Hello there I’m Elizabeth I’m an average 50 something year old lady with a passion for writing and photography. I have a tremendous love for my family and dogs and try my best to live life to the full. My glass is half full 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 husbands, since very fortunately for me has decided to stick around. Something that has really helped me along the way is keeping a diary. This has also emerged into a blog. Voila ~ this website. I feel really pleased you are taking some time to read it. if you enjoy it please pass it on to your friends. There will be many posts coming along as time goes by, please feel free to comment and share your opions. Even if it is a criticism. I can cope with that – I promise. The daily blog stuff is on the home page and just runs on, search the site as you want. Also I have put links for my twitter, facebook, pinterest, instagram. If you want to hook up – please do.
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 have now been transferred to lanreotide. Works similar and get it every 21 days.
My consultant introduced me to a charity – 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.
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