Deep throating a hose pipe…

Don’t worry, this isn’t an erotic blog post! I’m simply referring to what took place yesterday morning; my first Gastroscopy.

Since I received my genetic test results in November, I have a mutation in the CDH1 gene, which can lead to Diffuse Gastric Cancer, I have been anticipating this procedure ever since. Mainly because I just didn’t know what to expect – I knew it would take at least 30 minutes and that they would be taking 30 biopsies from my stomach, but partly because I retch when I brush my back teeth sometimes… So how was I ever going to manage swallowing a long endoscope?!

The waiting area was a long corridor lined with seats that were filled with people. Therefore, we were sat quite far away from the doorway where the Doctors came out one by one and called out a name.

When I was called out, the fact that it felt like I was walking down an awkward catwalk runway with everybody gazing at me only added to my anxiety.

After first introductions with my doctors, I preceded to tell each and every one of them that I was anxious and nervous. They all reassured me that it would be fine, that I would be sedated, and Dr. Trond told me that he was going to give me some of the “good stuff”!

After spraying some anaesthetic at the back of my throat and fitting a mouthguard, they asked me to lay on my side and administered the anaesthetic. They then placed the endoscope into my mouth and told me to swallow. (You’d think that Medical Science had advanced far enough to make an endoscope as thin as spaghetti?! Nope…)

Despite them telling me that I probably wouldn’t remember the procedure, I remember the whole thing (albeit some parts hazier than others). For the first part of the procedure, I was laid observing the whole thing on the screen as they explored the lining of my stomach and took multiple biopsies. After a while, I think the throat spray anaesthetic had worn off as I started retching repeatedly! They told me to take some deep breaths and administered more anaesthesia into my hand.

Towards the end of the procedure, I began retching again; this time more violently. I was struggling to control it and my mouth began to fill with bile and blood (gross, I know). Again, I was told to take deep breaths, but it took me a while to stop it from happening. It’s not easy with a mouthful of liquid, a mouthguard on and a tube down your throat!

After the procedure, they took me to a room to recover for an hour before discharging me. Dr. Trond came to see how I was doing and was surprised at how perky and normal I was, considering the amount of sedation I had been given (apparently it was a lot)!

gastroscopy

(Even in the hospital, I can still manage to get comfy and snug in a blanket!)

Since the gastroscopy isn’t a reliable screening method for this type of gastric cancer, I have been advised to have a total Gastrectomy in the near future. Next month I will be meeting with a surgeon here in Bergen to discuss this further so that I can make a more informed decision on what to do next. 🙂

Special shout out to B for making me lots of soup over the past two days and looking after me ❤ He’s the best

CDH1 Positive

It’s been 24 hours since I discovered that I have a mutation in the CDH1 gene, and what an emotional 24 hours it’s been. As soon as I read the words “The CDH1-mutation has been detected in your blood sample”, I broke down and sobbed uncontrollably.

I know a lot of people won’t understand and some may say it’s nothing to worry about – but when it hasn’t even been a week since my uncle’s funeral, the news hits even harder.

Everybody hates the C word (I’m referring to the six letter one), known as the “K-ord” in Norway. People don’t want to talk about it and I bet almost everyone has been or will be touched by it in some way during their lifetime. After the third person in my family was diagnosed with stomach cancer, doctors soon found a link and realised that a mutation of the CDH1 gene was to blame.

I didn’t know what my odds were of having the mutation since my dad hadn’t had the test done, so in August, I took it upon myself to see my doctor in Norway and was referred to the genetics department in Bergen.

5 weeks ago, I was sitting anxiously in the waiting room with Bjørnar at the side of me. We were both invited into a room with two Doctors, where we sat and talked at length about stomach cancer, genetics and the tests I could have done if the result were to come back positive. I was also told that I was the first potential case in Norway with the CDH1 mutation, so they were very excited to be meeting with me!

They told me that I would receive the results in 4-6 weeks and during this time, my family insisted the test would come back negative. I on the other hand, did try to mentally prepare myself as much as possible for the latter. After all, I knew I could potentially be opening up a can of worms!

So since I’m back in England now until late December, my next appointment isn’t until January where I will be having genetic counselling and discussing what to do next… Annual gastroscopies or to have a total gastrectomy?!

On the plus side, since I’m the first case in Norway, I can be their guinea pig! 😀

(I’ll be keeping my readers updated with my healthcare journey in Norway not only to help raise awareness, but also for my own sanity. After all, I think if I bottled it up and kept it in the dark, it would eat me up alive!)