About Me – The Writer with Carcinoid Syndrome

Dr Elizabeth Johnston-Young

I’m Elizabeth, with a passion for writing and photography.  Travelling on our Harley Davidson and raising awareness of neuroendocrine cancer are important factors to me. First and foremost 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 by the same token I 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, however 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.  Hence ~ 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 blog page and just runs on, search the site as you want.  Also I have put links for my twitter, facebook, pinterest, instagram.  Furthermore If you want to hook up – please do so.  

Blogs

You can read this blog, smile each and every day on the Blog Page and find out some more about me – the writer with carcinoid syndrome. You can find more out about my medical and science writing work at EJY Medical Writing

I said I hadn’t been feeling well, what made me persist to go to the doctors?

First the symptoms then the tests

Suddenly losing nearly three stone in weight, dropping several dress sizes. Forthwith 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. Firstly I was put on three injections of octreotide (sandostatin) per day. I was taught to self inject. then 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.

Well looked after

Like myself many people with carcinoid syndrome and net cancer have more than one consultant. They are usually based in departments in oncology, Endocrinology, cardiology, and possibly see a gastroenterologist.

My injection is manufactured by Ispen; https://www.ipsen.com

Some others get an injection provided by Novartis

Me and My Hubby Steve in Edinburgh

Introduction to Nets

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.

Furthermore when I’m feeling up to it we take time to travel, a lot of the time it’s on our beautiful Harley Davidson.

Some fun time

We love to travel the beautiful roads of our homeland Scotland travels on our Harley mostly or with our labs. Photography has always been a passion of mine and our own country has such stunning scenery, taking my Nikon is such a pleasure. Some of my photos are on the page Every Photo Tells A Tale

We purchased our first Harley at West Coast in Glasgow. It was a fabulous experience, Granddaughter, Alexandra was there and got to ring the bell with her Papa. And then traded it in for our beloved Fattie at Edinburgh Harley Davidson

While we are away it’s not always possible to take our beautiful labradors, Buddy and Bella.

Bella & Buddy at front door

It’s Sally we trust

The place we trust them to be is with Sally at https://www.salspals.co.uk

You can have a wee look at her facebook page –

https://www.facebook.com/SalsPalsDogs Buddy and Bella love going, especially visiting the resident labrador Harley. We know they will always get the best of care and when they are here they get a home from home. I certainly couldn’t recommend anywhere better.

This is Sals Pals Resident Labrador, Harley

Up in Aviemore at Thunder in The Glen proudly wearing our Dunedin Cuts

Finally thank you for taking the time to read this.  Most importantly have a wonderful day.

love muchly

Lizbeth xx

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17 thoughts on “About Me – The Writer with Carcinoid Syndrome

  1. Hi Lizbeth,
    Thanks for following The Goal List! I appreciate your honesty in this blog, especially about your experiences with the NG tube (as a dietitian I have experience helping people with them but I don’t always get to hear all the stories about them, sometimes only the problems – It’s nice hearing both positive and negative). I’m glad you feel comfortable sharing those stories because I think it can help other people who are considering tube feeding with their medical team. Thanks for being a part of the community! We’re lucky to have you in the blogosphere. 🙂
    Shelly

    Liked by 2 people

    1. Hi there, thanks so much for your comment. It’s always good to get feedback from healthcare professionals such as yourself. My hospital dietician and community dietician are great and offer a great deal of advice. My nurses that come in to my home to see me three days a weeks are a fantastic support, not only to me but to my family too. Please feel free to share my experience with patients or potential tube patients. Nothing quite like hearing how someone else is getting on. Have a good day 😀

      Liked by 1 person

  2. What a roller coaster you have been on health-wise. Glad you have health professionals and the charity on your side to help get things sorted. Thanks so much for the follow on my travel blog. I look forward to exploring your blog too.

    Liked by 2 people

    1. Thanks for your lovely words. Yes it’s been an up and down health ride that’s for sure. Many thanks for viewing my blog. I’m looking forward to keeping up with you. Have a great day 😃

      Liked by 1 person

  3. Hi Lizbeth. Thanks for the follow. Your blog is great so now I am a follower of yours.
    My mom’s family lives in and around the Glasgow area. What part are you from?

    Liked by 2 people

    1. Hi Heather, good to hear from you. I live in East Lothian. roughly an hour and a half to drive to Glasgow. My son went to university in Glasgow and my niece stays on the outskirts of the city. 😃

      Like

  4. Ironically I discovered you had followed me on Twitter the day after my lumpectomy. I am very lucky that it was found early on by a mammogram and the prognosis is good but it has made me more aware of the other forms of cancer. It is wonderful to read of your positivity. A glass half full is always the best. Love Liz

    Liked by 1 person

  5. Jings, this is heavy stuff, Lizbeth, but you seem to keep your sense of humour.
    Under the guise of one of my alter egos – C. E. Ayr – I have sent you a message on Facebook.
    Thank you for all your kind words on AnElephantCant.

    Liked by 2 people

  6. Hi Lizbeth, and many thanks for following my blog. I’m now following yours and hope to read of great improvements in your situation. About 12 years ago, when I worked as a medical/pharma writer and creative director at an ad agency specializing in oncology, one of our projects was the Novartis drug for NET. I don’t remember specifics anymore, just how difficult life could be for those who have the condition. Your positive attitude is an inspiration! xx, Alisa

    Like

  7. Hi Elizabeth …it’s good to hear that you have lots of support which is so important and that your spirits are high again to be positive is important…Thank you for following CarolCooks2 🙂

    Like

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