1 Year update

One year ago today, (gosh that went quick) I opened a can of worms / was the day I embarked upon this journey / was the day I stepped onto this crazy rollercoaster ride…

Today I’m feeling positive – but realistic (hence me describing it as a crazy rollercoaster ride) On my down days, I tend to think that I’ve opened a can of worms! I’m only human!

Basically, I sent an email to the genetics department here in Bergen, asking for more information as to how I would go about having a test done to find out if I carried the CDH1 mutation that runs in my family.

After getting the relevant information from the Doctors in England, I took this information to my “fastlege” (Doctor) in Bergen the following week, and requested a referral to the genetics department.

01.08.16 – Contacted the genetics department

08.08.16 – Referral from my Doctor

04.10.16 – Appointment with a genetics counsellor – Blood test sample taken

08.11.16 – Results from blood test – CDH1 mutation detected

30.12.16 – Meeting with genetics counsellor to discuss next steps (opted for screening)

18.04.17 – First endoscopy with multiple biopsies taken from stomach

10.05.17 – Meeting with surgeon to discuss option of having a Total Gastrectomy in the next few years

18.05.17 – Results from biopsies – Signet ring cell carcinoma detected in one of the samples taken. Decision made to have TG this year

14.06.17 – Second meeting with the surgeon to discuss the TG

21.06.17 – PET/CT scan (awaiting results)

 

As it currently stands, I am still scheduled to have my TG on the 26th September. I haven’t received the results from my PET/CT scan so I can only hope that no news is good news…

 

 

 

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.

 

Happy Pills – The Good, the Bad and the Ugly!

So here it is, my very LONG, open and honest blog post about my 104 interesting days on Escitalopram (aka Lexapro/Cipralex)

💊 💊 💊

Timeline

  • 7th February – 10mg
  • 23rd February – 20mg
  • 16th March – 10mg
  • 20th April – First appointment with Psychologist
  • 11th May – 5mg
  • 21st May – Last 5mg pill

 

Mental health is still a topic that is often kept in the dark. Even myself is guilty of this. In the past, I have been diagnosed with both depression and anxiety. I have had counselling, and have also taken alternative antidepressants such as 5-HTP and St. Johns Wort – all of which was without the knowledge of my family and friends.

The genetic result that I received in November, ignited my anxiety. Over the Christmas period, I experienced episodes of high blood pressure and on some occasions, panic attacks. These would go on for 30 minutes or so as they continuously flared back up, thus resulting in me taking Valium to calm myself down.

Over the years, I’ve done my own research into antidepressants and their side-effects and was strongly against taking them myself. But in February, after experiencing more panic attacks relating to my ongoing health issue (I also took 5-HTP during this period and it wasn’t helping), I went to my Doctor and asked for antidepressants, because I felt that I couldn’t manage this on my own. At the same time, I was also referred to a Clinical Psychologist.

7th February – Diary Extract (10mg)  How it affected my emotions

Today I went to the doctors and took my first antidepressant. After struggling (but managing) for over 10 years, I finally caved. The anxiety has gotten the better of me, thus in turn making my depression bad. At the moment, I’m a mess. This new revelation of me having this crappy gene mutation, has been a tough pill to swallow. I thought I was coping well, but as usual, I was downplaying it and fooling myself. Last week was hell. I barely left the house. Hell, I barely even got dressed or left the bed. That’s when I really knew I had to seek help and sort it out because I wasn’t able to sort it myself. I’m feeling a lot of mixed emotions. I’m nervous and anxious to be taking this medication, as it’s something I wanted to avoid. I’m sad because I feel defeated, that I could no longer help or control myself mentally… But I also feel proud, for making the appointment, going there and explaining myself so well that I got the outcome that I had hoped for.

At 00:30, I came home and wrote in my diary after being out with a group of people. I didn’t drink alcohol as I wasn’t sure how it would affect me. But I left early as I was feeling very uncomfortable in this social situation.

I feel that the medication has affected me already. Today I felt mellow, but not like I do with Valium, just calm and level with a bit of a fuzzy head… Tonight, I left early since I could feel my anxiety bubbling to the surface. As I walked home, I wanted to cry, but I couldn’t. Here I am feeling sad – but level, with no tears.

21st February – Diary Extract (10mg) Feeling mentally drained and demotivated

Today I feel rubbish. My 13th day on Lexapro and my head is a mess. No motivation. No real desire to eat. I feel hungry – but I feel like I’ve lost all motivation completely. It’s been difficult to go to the gym as my head has felt cloudy and my focus has been off. I’m so tired all the time, I just want to rest. I’m tired, but I can’t nap and it’s mentally draining. I don’t have an appointment yet to see a Psychologist – I almost can’t be bothered going to see one anymore. My health anxiety has subsided for now, but today I feel as though it (Lexapro) may not be worth it. I know I need to stick it out for a few more weeks at least.

23rd February

I had a follow up appointment with my Doctor and mentioned that it had curbed my health anxiety. I also spoke about the crippling exhaustion and tiredness that I had been experiencing, along with my lack of motivation to do anything. The Doctor did not believe that this was related to the medication, and advised me to increase the dosage to 20mg.

19th April – Diary Extract

So a lot has happened since I last wrote in here. The side-effects were awful at 20mg. I was spaced out like a zombie, had no energy whatsoever and couldn’t focus or do anything at the gym. So after two weeks, I tapered back down to 10mg. I still have tiresome days.

During my time on 20mg, my behaviour was strange. B would find me sitting and staring into space. When I did this, I wasn’t day-dreaming – I was simply staring into the abyss. Looking back at this time, I said “the lights were on but nobody was home”. This is not something I would ever want to experience again…

During my sessions with a Psychologist, I mentioned the tiredness, exhaustion and inability to do the things that I once enjoyed – eg, go to the gym, cook, hang out with friends… I also made it clear that I wanted to stop taking the antidepressants because I felt that they were suppressing my emotions. I hadn’t cried properly in months and I just felt constantly flat. The Psychologist explained that the anxiety, depression and sadness that I had been experiencing prior to me taking the medication was a natural human response to something real that I was going through. It made a lot of sense. I wasn’t feeling depressed for no reason, and the panic attacks weren’t random either. I was genuinely upset and scared of what I had recently found out, and hadn’t had enough time to process it all.

I wad advised not to quit taking the tablets cold-turkey, so on the 11th May, I began cutting my pills in half and took 5mg daily. Slowly but surely, I felt that I had a bit more energy and was returning to my normal self .

On the 21st May, I took my last 5mg dose of Lexapro.

I mentioned at the start of this post that I was well aware of the side-effects of antidepressants (not so much the tiredness part though – I should have NEVER increased my dosage to 20mg), but I was not well-informed or clued up about the withdrawals. A lot of that, was naivety on my part since 5-HTP and St. Johns Wort never gave me any. A quick google search led me to many posts on forums about “brain zaps” and “brain shivers”, and how many people resorted back to antidepressants because of the withdrawals.

The first week was awful. I felt generally dizzy (as though I had lost my sense of balance) and my brain felt fuzzy. Whenever I moved my head from side to side, I would feel a strange zappy feeling in my brain. Sometimes, the shock sensation would radiate down my arm. Despite this, I persevered. I took a 100mg dose of  5-HTP twice a day, and magnesium before bed in hope that this would help.

I’m almost 2 weeks “clean” and can honestly say, never again. I still get the strange zappy feelings now and then, but they’re nowhere near as intense as they initially were. My emotions have returned (I actually cried the other day, and it felt so good to let it all out!) and my motivation is back! Once again, I enjoy going to the gym and cooking. 🙂

Perhaps all I needed was time. Maybe the antidepressants were good for short-term use in my case, whilst I got my head around all of this.

Right now I feel positive, even though I’m having my stomach removed in a few months time since one of my biopsies showed cancer (and this is me talking without the Lexapro in my system!) My plan is to make the most out of the next few months,make lots of plans, enjoy myself and eat/drink whatever I want, whenever I want! ❤

Disclaimer: As the author of this blog, I have based my writings upon my own experiences regarding the topics covered in my post. However, I am not a medical doctor, nurse or otherwise formally qualified in this subject matter. The information contained in this blog is not intended to be construed in any manner as medical advice.

 

 

 

The Dreaded Phone Call

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Still feeling a little bit blurry headed after the 17th May Celebrations in Norway the day before (which, by the way was fab!) I struggled to comprehend the news that I had just received on the phone. The surgeon, that I had met with just a week earlier, had just called to let me know the results of my gastroscopy. All biopsies, apart from one, had come back normal. The news I didn’t want to hear was that one of them was showing signet cell carcinoma. Fuck.

The strangest thing is that I remained calm as he spoke to me; I didn’t even cry for a while afterwards. I simply couldn’t. I felt numb and confused. The surgeon suggested that I talk over the news with my family, and advised me to call him again as soon as possible to schedule my total gastrectomy (sooner than I had hoped to do so). This means no summer trip to England, no Engagement party with my family and friends, and no trip to Amsterdam. For now, all (fun) future plans are on hold.

So what did I do? Well, after breaking the news to B and my family, I poured myself a very generous glass of wine, ate a large slice of cake (leftovers from the 17th) and had a good, long chinwag with one of my close friends. ❤

It’s been a few days since I received the news and there’s still a few unanswered questions that I need the answers to. Does this mean I have to have chemo? How soon should I have the surgery? What if it’s already spread and they can’t find this out just yet?

Perhaps it’s a blessing in disguise that they found something. Now I know I have to have the surgery. I just don’t like having my life dictated by this. It’s only been six months since I found out that I had inherited the genetic mutation, and now I have to deal with this new piece of information. It really hasn’t been enough time for me to get my head around all of this, but with each day that goes by, I feel a little bit more prepared and accepting of the situation.

 

 

 

It will never be the perfect time…

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Today I cried; something I’ve struggled to do for the past few months thanks to the antidepressants I’m taking. I’ve always been skeptical of taking such a thing, but over Christmas, my anxiety was getting progressively worse as I struggled to come to terms with the fact that I was walking around with a potentially ticking time bomb. I felt like I had no other alternative than to try the medication, and to be honest, it has helped. My health anxiety is under control and I feel a lot more calmer, but of course not everything is peachy… I’m unable to express my true emotions. Instead, they stay bottled up inside of me and I am unable to release them.

That was of course, until today…

I guess I thought that I would feel a lot more prepared for surgery after meeting with the surgeon, but if anything, I feel just as worried, afraid and sad about the whole situation as I was before. Perhaps I should have gone to my appointment with no expectations.

I know there will never really be a good time to have a total gastrectomy, but after doing a lot of thinking, I decided that I should do it early next year. He asked me why I wanted to wait until then, so I told him the truth. It’s because I’m not mentally ready right now and still need time to prepare for such a life changing event. Besides, we want to get married in 2019, and I don’t want this decision looming over me for years to come.

So, my goals over the next few months are to wean off these “emotion suppressive” antidepressants, continue seeing a counsellor to help me overcome my health anxiety and get both my body and mind as ready as it possibly can be to say goodbye to my stomach in Spring 2018…

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

Stomach Cancer Awareness Month

Did you know that November is stomach cancer awareness month?

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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 case in Norway with Hereditary Diffuse Gastric Cancer, 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 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!)