Trust Your Gut

On Monday 22nd October, I awoke to pain in my abdomen in the lower left side, a pain that I’d never felt before. It was in a specific area and felt tender to touch. In the early hours of that morning, I had wolfed down half a Big Mac (a stupid thing to do when you no longer have a stomach), so my initial thought was that there was something “stuck”; an obstruction. I figured I would just stick to liquids that day, but even drinking was causing pain. So I made my way to the emergency room…

I explained my situation to the Doctor that examined me, and he too suggested that it could be an obstruction – a partial one since I was still able to drink fluids and use the bathroom. I was referred to emergency room at the main hospital for further investigation.

After waiting some time, I was examined by two different Doctors that asked a lot of questions regarding my medical history. Despite me explaining that the pain got worse shortly after drinking and that I didn’t think it was a stricture (the pain happened 5 minutes or so after drinking, which I figured meant it was slightly further down than the anastomosis – where the oesophagus and small intestine is joined together), the Doctor said he wanted a second opinion from a Gynaecologist.

At this point it was after midnight and I had been at the hospital over 9 hours. I hadn’t eaten anything for almost 24 hours – I was exhausted.

I sat down with the Gynaecologist and explained the type of pain I was having and pointed to the area that was tender. Immediately she said that the pain was too high to be anything gynaecological related, but that she would examine me anyway to rule this out.

Everything was normal as expected, so I was referred back to Akuttmottak and was admitted. The return journey was much more exciting! The transporter walked us both to the basement and we got onto a golf cart!  She drove us through the underground tunnel that connects both Haukeland Hospital and “Kvinneklinikken” (I had no idea these two buildings were connected).

Nothing much happened over the next few days. The pain was still there, I felt nauseous constantly and I struggled to eat and drink. On Thursday, I was sent for an X-ray with contrast.

After drinking copious amounts of barium liquid and laying in various positions, the radiographer could see that everything was moving through my intestines normally and that there was nothing stuck. He explained that the part of intestine that was causing pain had quite a few twists and turns. Since I was able to eat a bit more than previous days and was feeling a little better, I got discharged the following day. At this point, the surgeon (that had operated on me last year) suggested the pain could have been a number of things. That it may have been something that was stuck, and had since passed, that it could be bacteria from food (without stomach acid, it’s easier to get sick from food), or it could be adhesions and scar tissue from the first surgery – something I’d never heard of before.

Over the weekend, still in pain, I stuck to a soft diet but tried to consume as many calories as possible since I’d lost weight that week. As the days went on, the pain became excruciating. Shortly after eating, I would be laid down on my side, crying in agony. I took painkillers, but nothing seemed to help. On Wednesday 31st (5 days after being discharged and my 10th day in pain), I saw my Doctor, who referred me straight back to Akuttmottak.

That night, I was referred for an ultrasound. Apart from a few small gallstones in my gallbladder, nothing else was found and the cause of the pain was still not diagnosed. The next step was a CT scan.

Two days later, a few hours after I’d had the CT scan, I was told that I had high ileus and suspected adhesions. At this point, they couldn’t rule out a hernia, and that the only way to diagnose and hopefully fix the problem was through surgery. Since my last surgery was open, this one had to be open too as it would be too risky to do it laparoscopically. From that moment, I had to begin fasting and prepare for surgery. After the surgeon left, I sobbed uncontrollably. Although I was relieved that I finally had a diagnosis, I was devastated to hear that I had to go through another major surgery.

On Sunday evening, still on the waiting list for surgery, I was allowed to go home for the night. Although I still couldn’t eat much without being in a lot of pain, it was nice to relax at home and get a proper nights sleep.

After shortly arriving back at the hospital on Monday morning (my 15th day of pain), I was told that I was going down for surgery. I quickly texted B and my mum, packed away my things and down I went.

Upon arrival, I spoke with the anaesthesiologist and discovered that the surgeon was one of the three that had performed my Total Gastrectomy last year. This was a relief to me, as I felt safer knowing that it was someone who knew how everything looked inside!

A couple of hours later, I was woken up and moved to the recovery ward where I spent quite a few hours. Despite them giving me anti-nausea medication prior to surgery, I was dry-heaving constantly. They gave me various drugs over the space of a few hours, and nothing seemed to be working. Since water was making the problem worse, they gave me an ice lolly, which seemed to settle things… It was probably the best ice lolly that I had ever tasted!

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A few hours after Surgery

That evening, the surgeon came to speak to me and explained that the surgery had been a success and that they had found adhesions. Basically, it had formed a string that had wrapped around part of my small intestine – this explained the pain shortly after eating, the tender and swollen area of my abdomen and why food was coming back up. Luckily, there had been no permanent damage to that part of my small intestine. After the surgery, I was allowed to eat normally again and noticed very quickly that the surgery had fixed the issue since I no longer had pain after eating and drinking.

The pain from the incision however, was very difficult to cope with this time. The epidural wasn’t working well and the pain medication wasn’t helping. After trying different regimens, they gave me morphine, which helped a lot.

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Scar Update (Left before surgery, Right after surgery)

So now I’m going through the recovery stage again… Lifting restrictions for 6 weeks and no exercise – only walking. Although the problem was fixed, abdominal surgery (whether it be laparoscopic or open) carries a risk of developing adhesions so they could form again. But I have to remain positive and hope that they don’t. 😇 🍀

 

June 21st – The Longest Day (in more ways than one)

June 21st: The Summer Solstice in the Northern Hemisphere and the longest day of the year

For me: My first PET/CT scan, which felt like the longest day of the year!

So, before I get the final go ahead for my surgery in September, my surgeon decided to refer me for a PET/CT scan to stage the cancer.

🤞 Fingers crossed that it’s just localised and I won’t need chemo 🤞

After fasting all morning and drinking copious amounts of water, I headed to the hospital for my appointment.

On arrival, Bjørnar and I sat and waited until my name was called. We were then shown to a room, I changed into some hospital clothing, laid down on the bed, answered a few medical questions and had my blood sugar level checked. Then I waited for the Doctor to come and put a cannula in my arm.

This was not a pleasant experience 😥 I have thin, deep veins that are difficult to find. Every time I have a blood test, a long time is spent trying to locate a vein. Usually, the Nurse/Doctor has a few attempts and I end up resembling a pin cushion. Today was no exception… They even used a special gadget to look for veins in my arm!

AV300-Vein-Viewing-System

Image taken from: http://techpp.com/2012/03/26/top-medical-gadgets/

After 5 attempts in the back of my hands (which resulted in a few painful, little bruises), an Anaesthesiologist was asked to come and find a vein. Luckily, his first attempt was successful! After he left, the Doctor returned with a large robot-looking machine, connected it to the cannula in my hand and in went the radioactive tracer. Bjørnar left the room at this point to get some food since I had to rest and relax for the first 30 minutes (apparently even reading can affect where the tracer ends up in the body). For the first few minutes, knowing that what had been injected into me was radioactive, my heart started pounding and I began to feel anxious. Since I couldn’t feel anything physically different in my body, this helped me to slowly calm down.

After 75 minutes or so, a Nurse came to tell me that they were ready to do the scan and I followed her to the room. After laying down on the scanner bed, I was told that they would be injecting me with the contrast dye for the CT part of the scan. They explained that I would feel some discomfort in the area where it was injected, and since the cannula was in my hand (usually they put it in the forearm) they would reduce the pressure. After placing my hands above my head, I was moved through the machine.

Immediately, I got very anxious and felt claustrophobic! With my heart pounding in my chest, I asked them to take me back out. A few moments later, I said I would try again and tried to keep it together. Once I was through to the other side of the machine, they injected the contrast dye into the cannula. Now this hurt A LOT! My hand was burning and it was very painful. They tried to relieve the pressure, which helped a little, but then my heart began to pound in my chest and I felt like I couldn’t breathe! I told them it felt like somebody was sitting on my chest. They asked me if it was anxiety and I said that it was nothing like what I had felt before. I tried to focus on my breathing – taking deep breaths in through my nose and slowly out through my mouth. After a while, the pain subsided and the pounding started to lessen.

I’m not sure how long the scan took, but I can assure you, it felt like a lifetime… I had an MRI scan around 8 years ago, and laying in a claustrophobic tube is no fun. Especially when you have to be in there a while! Back then, I managed to control my nerves, so I definitely feel that my anxiety has worsened since then.

From this experience, I have realised that my anxiety is worse than I thought. I feel like I wasted four months being on anti-depressants as this only helped the situation temporarily. Without the medication, the issue is still there and I need to get my mental state into better shape before my surgery in order to aid my recovery.

I just want to end by saying that I really do have the best fiancé ❤ Bjørnar has been so supportive throughout all of this. Yesterday, after knocking one of my bruises on my hand, I burst into tears, and he gave me the biggest hug. It was painful, but I was also feeling emotionally overwhelmed and it all came pouring out. On our way home, he treat us to sushi and some Yorkshire Ales, and then he spent the whole evening chilling with me.

 

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!)