Regret?

Something I need to address, is the feeling of regret…

I often look back on the fall of 2016 and wonder if I’ve opened a can of worms or embarked on a rollercoaster (all feelings I’ve mentioned before, depending on how I’m feeling that day, both mentally and physically).

Sometimes I will joke with friends if I have an AMAZING plate of food in front of me, by saying something silly like how “I wish I still had a stomach”, which usually makes said group of friends feel uncomfortable… I wish they didn’t feel that way. After all, it’s only my dark and daft humour. I definitely don’t “wish” that… After all, I know I made the right decision.

Something I found difficult was what was said to me around Christmas time. Someone that I have a close relationship with saw me, and after a few drinks, got chatting with me about how much weight I had lost (at that point I was at my lowest weight at around 49/50kg after my second surgery). They confided in me that they had noticed, and then proceeded to ask me if “I had regretted” having my stomach removed. I was shocked. I didn’t regret it, and it’s still something that I don’t. At the end of the day, I was the one that opened “pandora’s box” by opting for genetic testing, and thus found out I had cancer upon the first screening… (This is why it annoys me that my medical notes have now been changed to “Prophylactic Gastrectomy”. There was nothing “Prophylactic” about it… The cancer was already there and I had surgery sooner rather than later because of this.)

I was naive to think that it would be all smooth sailing, and that I wouldn’t lose so much god damn weight, but the cancer was already there. Should I have ignored it and carried on as normal? One thing that I’ve learnt over time is that cancer does not discriminate. Regardless of your diet, lifestyle and age; the big C does not give a shit. I figured that out soon enough in our family, and after joining the CDH1 Facebook group, I found out even more so how ruthless it is… This group has helped me in so many ways, in ways that I can not begin to explain. The members have become an extended family to me; people across the pond in so many different countries that I feel connected to because we all discuss the elephant in the room, and how it’s affected our lives… Through this group, I’ve discovered that this pesky mutation and cancer has taken people much younger than me… So whilst I’ve never regretted having my stomach removed, I want to express the fact that I never did, and never will. Yes, there’s been obstacles and hiccups along the way, but nobody ever said it would be easy. I’ve had the most central part of my being removed; my storage tank, the thing that gives me fuel. But this very thing, would have killed me if I were to leave it be.

So no. I have NO regrets…

Late Dumping Syndrome

Back in March, I wrote a post about Dumping Syndrome

Signs and symptoms of dumping syndrome generally occur right after eating, especially after a meal rich in table sugar (sucrose) or fruit sugar (fructose). Signs and symptoms might include:

Nausea, Vomiting, Abdominal cramps, Diarrhoea, Flushing, Dizziness, lightheadedness, Rapid heart rate

If that wasn’t bad enough, there’s also Late Dumping Syndrome!

Late dumping syndrome starts one to three hours after you eat a high-sugar meal. The signs and symptoms develop that long after you eat because your body releases large amounts of insulin to absorb the sugars entering your small intestine. The result is low blood sugar. Signs and symptoms of late dumping syndrome can include:

Sweating, Flushing, Dizziness, lightheadedness, Weakness, Rapid heart rate

(https://www.mayoclinic.org/diseases-conditions/dumping-syndrome/symptoms-causes/syc-20371915)

About last night…

After putting up the Christmas tree and beginning to get into the festive spirit, I decided to make B and I some “gløgg”. I had bought the bottle from IKEA the previous week and was already a little weary of the high sugar content after analysing the label, but figured I would be okay if I had a small cup and drank it very slowly. Oh, how I was wrong…

The Culprit – 100ml: 79kcal and 19g of sugar

Over an hour later, as I was getting into bed, I started to feel clammy and warm. Next, came the dizziness, confusion, shakiness and heart palpitations. I immediately grabbed the squeezable honey; my “go to” item, to help raise my blood sugar as quickly as possible. For the next 30 minutes or so, I squeezed small amounts into my mouth and waited for the symptoms to fade away.

🍯🍯🍯

My first episode, around a year ago was frightening. I’d never experienced anything like it before and wasn’t even sure what was going on! I cried, and to this day I can’t explain why. I wasn’t sad, my head just felt completely jumbled up. It was a bizarre experience and I couldn’t really speak or do anything. Luckily, we figured that it was a drop in blood sugar and squeezable honey came to the rescue.

I have to be careful not to overdo it with the honey though, because on one occasion, I accidentally gave myself (early) Dumping Syndrome (after a Late Dumping episode) from consuming far too much! 🙈 Sometimes, you just can’t win!

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!

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.

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. 😇 🍀

 

1 Year Stomachless

It’s crazy to think that this time last year, I was laying in the operating room having my stomach removed. The past 12 months have flown by so quickly – it feels like it was only a few months ago since I was in hospital.

It’s been a challenging 12 months – both physically and mentally. I felt somewhat prepared, but in hindsight, nothing can truly prepare you for such a life changing procedure.

In Recovery (26.09.2017)

In the recovery ward, not long after being awoken from the procedure, I told B that I was glad that I’d done it – and that still stands. I’ve never felt an ounce of regret, after all, I’m cancer free. But there are times that I wish that I still had my stomach, and moments where I miss that “rumbly tumbly” feeling (since I never feel hungry anymore), but I guess this is normal.

Despite gaining 9kg prior to surgery, I’ve gone on to lose 23kg; both body fat and muscle. Prior to surgery, I was fit, healthy, strong, and had a bucket load of energy. Now, I feel like a completely different person and it’s taken me some time to accept that it’s still going to be a long road ahead, “a marathon, not a sprint”, as B often says to me.

During my recovery, people have told me not to lose any more weight, which is difficult for me to hear since it’s easier said than done and I’m trying hard not to. I know it’s not meant maliciously, but it still hurts. There’s been days that I’ve stepped onto the scales and bawled my eyes out after seeing a lower number glaring back at me. Prior to my knowledge of having the CDH1 mutation, I was striving to lose a couple of pounds through diet and exercise, and had even tried things like “Slim Fast” shakes! Fast forward to a couple of years later, and I’m adding butter and cream to my morning coffee! It’s funny how things change…

I’ve also had people tell me that I look well, especially those that haven’t seen me for some time, and of course this is a positive boost. But a lot of the time, how I look on the outside, doesn’t reflect how I’m feeling on the inside. People assume that I’m well and fine, but I’m just not there yet. If I plan a full day out now, I need the following day to recover (sometimes two days). Some days I need to take a long afternoon nap, because I get lethargic easily and can’t focus on what I’m supposed to be doing.

This year, I’ve been away 3 times: spent a weekend in Poland, 2 weeks on Fjørtoft and 3 weeks in England. During my visit to Fjørtoft, I ended up being admitted to hospital because a viral infection had spread down my oesophagus, making it difficult to eat, and in England, I was very sick for 9 days and struggled with malabsorption as a consequence. This is just a crappy reminder that I’m nowhere near where I want to be just yet, physically.

Mentally, I’m also not where I want to be. Prior to surgery I had a few counselling sessions to help me deal with the whole situation and prepare me for such a big surgery. Back then, my anxiety stemmed from the procedure itself and anticipating being under sedation for so long. In hindsight, I was probably afraid of dying. In the months that followed, I felt better – I was alive and recovering well. What I hadn’t prepared myself for was my “new normal” after surgery, and the other tests that I would have to go through – Breast Cancer screening, the other side to the CDH1 coin for us ladies. Despite holding off for a while and trying to figure things out on my own, I decided it was time to go back to counselling.

Anyhow, despite a few hiccups and bumps along the way, I’m proud of reaching this milestone. I’m aware it’s still a long road ahead (much longer than I initially anticipated), but milestones should be celebrated! So tonight, I’m going to drink a glass of bubbly, and take my stomach Plusheez out for a beautiful Italian meal! (and B of course!)

❤

1 Year on (26.09.2018)

10 Month Update…

On Thursday 26th July, 3 days into my vacation on Fjørtoft and exactly 10 months since my TG, I was admitted to Ålesund Sjukehus, after going to the Emergency Room.

I was only one day into my vacation when I woke up with swollen tonsils and had difficulty swallowing. This got progressively worse over the next two days, making it difficult to both eat and drink, and to even swallow my own saliva. It’s been 10 months since my surgery and I am STILL losing a lot of weight (25kg lost), so being unable to eat or drink properly is a huge problem for me. I held out as long as I could, taking ibuprofen in hope that it would help reduce the swelling, but nothing helped.

We called the emergency room, explained the situation to them and was told to come in.

 

(First, we had to take the ferry to Brattvåg and drive from there)

The Legevakt was much smaller than the one in Bergen, and there was only a couple of people waiting to be seen, so I was seen by a Doctor very quickly. He checked me over and explained that my tonsils weren’t big enough to be causing an obstruction, and referred me to the hospital as the symptoms I was describing were similar to that of a stricture.

Upon arrival, I had a blood test that revealed elevated leukocytes and CRP levels – indicating a sign of infection. After a long wait in the triage area, a Doctor came to see me and explained that since I didn’t have a fever, but had swollen tonsils and had had a cough and cold for a couple of weeks, that it was most likely a viral infection in my throat that had spread down into my oesophagus.

Around midnight, I was taken for a chest x-ray, and then taken to the ward to get some sleep.

View from the Hospital

The following morning, I met with a surgeon that performed an upper endoscopy. There were no signs of a stricture, but my oesophagus was covered in white spots. They took a few biopsies and explained to me that it was likely a viral infection that had spread from my throat. They also told me that they would write to my GP in Bergen to be referred for a CT scan since I was still losing a lot of weight.

Bjørnar reading my last rites 😀

After waiting an hour for the local anaesthesia to wear off in the back of my throat, I was allowed to try and eat something. I started off with tomato soup, then a banana. Both went down fine with little pain. After eating lunch, I was discharged and could return back to Fjørtoft to enjoy the rest of the sunshine.

The closest I can get to horse without having an allergic reaction!

After a lot of rest, fluids and paracetamol, my throat is feeling much better and I can eat “normally” once again. However, in the past two weeks I have lost 2kg, and have had two episodes of hypoglycaemia – caused by late dumping syndrome. I’m less than 2kg away from being classed as underweight, and have been referred for emergency help at the hospital regarding my weight loss and diet.

So despite me looking well on the outside and being told by others that I look well, inside is a struggle. I feel physically drained very often, I get nauseous and uncomfortably full very easily, and feel that I look too skinny and bony.

Hopefully, I can enjoy the rest of my time here on Fjørtoft and gain back some of the weight that I have lost… 🤞

 

TG Recovery – 6 Month Update

Has it really been six months already?!

—

Food

One of the biggest things that I was surprised to discover, is the variety of foods that I can consume. Eating is different now (I have to take my time, take care to chew and eat smaller portions) but I’m not living off soups like I thought I would be! My favourite investment is a cast iron casserole dish. I’ve been using it to cook a lot of delicious meals for Bjørnar and myself. Things like stews and casseroles are fab, as the meat becomes nice and tender. Dumping syndrome is a bitch (since I wrote about this recently, I won’t go into too much detail) but I feel lucky that I can still eat chocolate. I still have to be careful not to overdo it though!

—

Hunger

Ahh yes… The “rumbly tumbly”. I never realised how much I would miss this feeling! It’s strange not feeling hungry anymore. It’s surprisingly easy to go without food when there’s no nagging reminder telling you that it’s time to eat.

Over the past few weeks, I’ve started to feel a new type of hunger! I can only describe it as en empty sensation inside – in the area where my oesophagus was connected to my small intestine. It could be psychological/phantom hunger, but I’m welcoming it with open arms and hoping it’s here to stay!

—

Weight Loss

This was inevitable and something I felt somewhat prepared for. I fattened myself up good and proper before surgery – I actually gained 9kg! 🙈

However, the weight loss has wreaked havoc with my emotions. There are times that I feel defeated when I step onto the scales and see that the number has fallen yet again. It’s a bit crap when your skinny jeans have become baggy jeans, and your engagement ring is too large to wear… I have an app on my phone that reminds me to eat every 2 hours (6 times a day) and I was also using myFitnessPal to track my calorie intake, but found it all overwhelming. So for now, I’m just focusing on my eating routine by following the schedule. I will focus on the calorie counting once I have the regularity in check.

19kg loss since 26.09.17

—

Hair Loss

As soon as I hit the 2 month mark, I suddenly experienced a LOT of hair loss. This went on continuously for 3 months. I would often cry as I removed the huge clump of hair from my brush every day. Since it was the most noticeable around my hairline, I cut in a fringe to help disguise it.

—

B12 and Iron

I already knew that my body would no longer be able to absorb B12 from food and supplements, but I was not expecting my values to drop so suddenly. My values went from the upper end of the scale to the lower end in the space of 3 months. My cognitive function felt massively reduced. I was misplacing things, becoming increasingly forgetful and finding it difficult to do work. I was given weekly B12 shots for 4 weeks, and felt a huge improvement just after the first.

As for my iron, I’ve been taking Floradix daily (that I started in the weeks leading up to my surgery), so I was surprised to see that the value had dropped so drastically. After doing a bit of research, I found out that iron is absorbed in the duodenum and since food and supplements no longer pass directly through mine, my body has difficulty absorbing it.

—

Gym/Exercise

I’ve only been to the gym three times during my recovery. I still don’t feel well enough to be at the gym alone yet, as I get dizzy very easily. I’m hoping to get back into a routine so that I can build up my strength and increase my muscle mass, as I have lost a lot since surgery.

One of the things I find difficult since surgery, is my intake of protein. I have tried various different protein shakes, but I haven’t found one yet that doesn’t cause me any problems.

—

Scar Update

Left 6 Weeks / Right 13 Weeks (3 Months)

26 Weeks (6 Months)

(Left: 6 Weeks | Centre: 3 Months | Right: 6 Months)

My scar is looking good! The redness has faded a lot, but the top part is still a nuisance. If I wear a bra, it gets irritated and becomes more swollen and itchy. I tried silicone gel and silicone sheets to help flatten it, but neither worked. I keep applying Bio Oil and hope that in time, the top part will flatten out without intervention.

—

For the most part, recovery has gone better than I had expected. It hasn’t been a walk in the park, some days are truly difficult and sometimes my emotions get the better of me. Even though I often feel ill after eating breakfast, and struggle with episodes of hypoglycaemia and dumping, I’ve never felt an ounce of regret. ❤

Dumping Syndrome

Most mornings, I start my day with a coffee followed by a smoothie. My usual favourite consists of 1 banana, a handful of strawberries, almond milk and a few generous dollops of coconut milk (the thick stuff from a can).

It’s my favourite because not only does it taste delicious, it is also lactose free (that’s a whole new issue altogether now), contains a decent amount of calories and goes down a treat!

However, I’ve recently started to feel a bit funny after drinking my smoothie. Breakfast has been followed with a side order of heart palpitations and dizziness.

It would pass after a short while, so I persevered. After all, I don’t have many breakfast options these days and smoothies are my “go to”.

But today was a different story altogether. Shortly after the palpitations, came the most painful cramping sensations (think menstrual cramps but in your intestines). It felt like my innards were on fire whilst being repeatedly squeezed. The pain not subsiding, I crushed up half a morphine tablet in my mouth, washed it down with some juice, curled up in a ball and waited for the pain to drift away.

The joys of dumping syndrome…

Signs and symptoms of dumping syndrome generally occur right after eating, especially after a meal rich in table sugar (sucrose) or fruit sugar (fructose). Signs and symptoms might include:

Nausea, Vomiting, Abdominal cramps, Diarrhea, Flushing, Dizziness, lightheadedness, Rapid heart rate

https://www.mayoclinic.org/diseases-conditions/dumping-syndrome/symptoms-causes/syc-20371915

It’s certainly not the first time I’ve experienced dumping. A few times I’ve overdone it with the cookies or a dessert (although it doesn’t take much to overdo it) 🙈 but the frustrating thing with this episode is that I’ve been drinking the same smoothie for a while now with no problems, up until this past week.

Days like today remind me that my body is unpredictable…

So I guess it’s back to the drawing board for breakfast ideas!

18 Kilos Later

On the morning of the 26th September, before heading to the hospital, I stepped onto the scales to find out what I weighed. The number glaring back at me was 76.8kg – the heaviest I had ever been.

Fast forward to today: 20 weeks later and I’m now 58.8kg…

For a long time, my weight was 67kg. I ate well, worked out 4 to 5 times a week and enjoyed the odd treat here and there. But like most women, I wanted to lose a few pounds. In fact, my goal weight was 62kg. However, no matter what I did, I couldn’t get the number any lower.

If only I could go back in time and say to myself, “be careful what you wish for”…

I step onto the scale weekly, sometimes fortnightly, and log both my weight and calorie intake in MyFitnessPal.

After surpassing 62kg, each time I logged my weight, the app would congratulate me with a colourful confetti filled screen; a harsh reminder as to how quickly and easily the weight was slipping away.

In recent weeks, I felt like I was doing well – eating regularly and exceeding my daily calorie intake. So naturally, I was disappointed to find that yet again, the number had continued to fall.

Winter has made it easy to hide my weight loss (even from myself) under big cosy jumpers. That was until today.

I decided to try on my bikinis to see how much my body had changed. First, I tried on a top. My boobs (that now resemble two half-deflated old party balloons) could barely hold the bandeau up. Then, I tried on the bottoms. My once peachy, round derrière, was no longer. The bottoms were hanging off me! I took a long hard look in the mirror, and that’s when it really hit me.

In all honesty, it made me feel like shit. 👎

I texted B and he was quick to reply, reminding me that “this is not a sprint, it is a marathon, and to get to where you want to be, it will take time and dedication”.

He’s totally right. ❤

For a long time, all I wanted was to lose weight, and now I would do anything to stop and start gaining. It’s funny how quickly our priorities and focuses can change – whilst still putting pressure on yourself.

I need to remind myself that it hasn’t even been 6 months yet, and my body is still adjusting.

All I can do for now is to keep doing what I’m doing, eat a little bit more, try to increase my protein intake and start exercising regularly. I might not be able to do much about the chest area, but I can aim for an ass that will turn heads again! 😜

 

A Tough Pill To Swallow…

After a Gastrectomy, it’s important to take certain supplements to help prevent deficiencies and other issues. After finding out that I’m unable to absorb calcium carbonate without a stomach, (I have degenerative problems in my lower back so the last thing I need is osteoporosis) I went online to search for calcium citrate as I couldn’t find any in the local pharmacies. I wasn’t exactly spoilt for choice, so I ended up buying some vegetable capsules.

Since my surgery, if I need to take any tablets, I break them up first into several pieces before washing them down with liquid. Partly out of fear that they might get stuck, but also to increase the surface area so that they work quicker. Since I couldn’t do that with the capsule, I decided to empty the powder contents into a little bit of orange juice and drink it. EURGH! It tasted vile! No matter how hard I tried, I could not get it down. So I gave it up as a bad job.

I decided to reach out to other members of the stomachless community to find out if anyone else had taken capsules after surgery. The response was very positive, so I decided to give it a whirl.

After finishing my morning coffee on Sunday, I drank a little bit of water and put a capsule in my mouth. I then took a few sips of water to wash it down.

Immediately, it felt stuck.

I started to panic.

I felt pressure in my chest where it was stuck and I rushed to the bathroom where I regurgitated the liquid. I took a few more sips to try and push it down, but everything, apart from the capsule, came back up and the “stuck” feeling remained.

After a short while, I told B what had happened and he began searching online to find a solution. He suggested drinking something warm to help melt the capsule, so I sipped on tea. The liquid kept coming back up. After a while, it started to go down and stay down, but I STILL had the “stuck” feeling in my chest. I also experienced extreme nausea where my mouth began to salivate. I started retching but nothing happened. My body was trying to be sick, which felt weird and was impossible without a stomach. As a consequence, I pulled a lot of the muscles in my abdomen 😦

Over the course of the day, things started to settle and I was able to drink a full cup of tea and eat a bowl of soup. I still felt the pressure in my chest, but just assumed part of my oesophagus was inflamed from where the pill had been stuck.

The following day, the “stuck” feeling was worse than ever and it was painful to swallow my own saliva. I could barely drink, so I went down to the Legevakt Emergency Room, where they referred me to the main hospital.

A few hours later, I was sent for a Gastroscopy. During this procedure, I learnt two things.

1. The pill was STILL stuck in my oesophagus (it had split into two pieces and both parts were stuck)
2. The reason it had gotten stuck was because I had a stricture! (They couldn’t even get the gastroscope any further because it was too narrow)

Image taken during Gastroscopy – One half of the pill can be seen stuck in the oesophagus. It’s clear to see how narrow it had become!

After they removed the pill, I was admitted to hospital and had to wait for a slot to undergo a procedure to dilate my oesophagus.

After spending two nights in hospital, they allowed me to go home on Wednesday evening so that I could get a decent nights sleep! I was told to fast from midnight again and that they would call me as soon as they had a slot available.

On Thursday afternoon, I received a phone call asking me to come back for the procedure. My surgeon was part of the team that did the dilation – it put me at ease seeing a familiar face! Even though I was awake during the procedure, they gave me some sedation intravenously so the whole thing was a bit of a blur! I’m not sure how narrow my oesophagus had become, but a gastroscope is 9mm wide and this was unable to fit through the stricture. They carried out an oesophageal balloon dilation to widen it to 19mm.

Looking back, I’m just glad that I didn’t take the paracetamol tablets that were offered to me the day after surgery! I told them that this would be too difficult for me to swallow, so they gave me it intravenously instead. I even asked for a prescription of dissolvable paracetamol when I was discharged from hospital, as the regular tablets are so large and round in Norway!

 

They said I may need another dilation in the near future, but if it wasn’t for the capsule getting stuck, I wouldn’t have known that I had a stricture in the first place! I’m just glad that everything is sorted, but for now I think I’ll stick to taking liquid supplements!

 

Pathology Results!

So today I met with my surgeon and received my results!

During my gastrectomy, they removed 27 lymph nodes from my abdomen. I’m pleased to report that all of these were clear! (Surprised at how many were removed – I’m actually curious as to how big/small they are!)

In my stomach, they found 2 foci of adenocarcinoma measuring 4mm each.

The margins were great too, meaning no gastric mucosa was left behind where they made the join.

YAY!

🎉 🎉 🎉 🎉

I was so relieved! Now I know for certain that everything was removed during the surgery, putting my mind at ease.

 

I showed him my incision, to which he confirmed was a keloid scar. 😕 If anybody out there has any suggestions/home remedies for this type of scarring, please let me know! I have ordered some silicone scar sheets and gel in hope that this will help, as I can’t even wear a bra at the moment because of it! 🙈

Anyway, the next step thanks to this lovely CDH1 mutation is annual MRI screenings for lobular breast cancer. (People with the CDH1 mutation are at an increased risk of developing gastric cancer and lobular breast cancer) This is recommended from the age of 30, but my surgeon has referred me now to get the ball rolling much sooner. 😊

 

 

Incision – Update

🔪🔪🔪

Proud to show off my battle scar! Healing nicely after a few hiccups along the way 🙈 The top part kept splitting open so it’s a lot redder than the rest.

I don’t think it looks bad to say it was done almost 6 weeks ago!

One Month Update

Weight lost from the 26.09 – 26.10 = 7.7kg 

My new plumbing! Before and After

Photo taken from: https://www.nostomachforcancer.org/

It’s been one month since my surgery and I’ve experienced a few hiccups along the way. I anticipated problems from my new “plumbing” but not the issues I’ve encountered…

1. Problems with my incision
2. Debilitating back pain

1. A few days after writing my last blog post, I ended up at the legevakt (E.R) and hospital for over 8 hours… I had been experiencing some stinging pain from my incision and couldn’t physically see what was going on since it was still covered with a steri-strip that I was told not to remove. Since it was a Sunday, we called the legevakt, and they told us to come in.

When I had my surgery, they gave me intradermal stitches and no staples – so I did not need to have anything removed. 

After a long wait, I was seen by a Doctor that examined the area. He could see that there was an opening in two different areas (at the top and above my belly button). After cleaning up the area, he called the hospital and spoke to one of the Surgeons. He wanted to see the incision, so off I went, freshly bandaged up to the hospital.

He thoroughly checked the openings and explained that they were superficial, so only the top layers were open. He explained that this was normal and often seen in young, active patients. He scrubbed the areas to make them bleed more before closing the areas with steri-strips, and was told to continue doing this over the next week if I saw any blood or leakage on the bandage. But since I’m a wimp when it comes to pain and blood, Nurse B watched the Surgeon so that he could be responsible for this task!

After being checked over by my Doctor a week later, the two areas were still slightly open but said that it was looking good and prescribed me some antibiotic cream to apply a few times a day. Luckily, this did the trick and healed the two problem areas nicely! 🙂 Hurray! I was so relieved! I was initially told that if it didn’t close up on it’s own, they would have to stitch up the two areas, which would mean cutting deeper and into the scar tissue. Ouch!

 

 

2. My other gripe has been back pain. I knew I would have some pain after surgery since I have degenerative discs in my lower spine, but this has been a nightmare. My back was bad to begin with, most likely caused by a combination of things; the epidural, lack of mobility and my back muscles overcompensating for my core. In the first few weeks, I would wake up multiple times in the middle of night with agonising pain and tense, solid back muscles. Then, after not being able to shave for a few weeks, I stupidly decided to shave my legs in the shower… What a huge mistake that was. After standing in multiple flamingo-like bent-legged poses, I had well and truly screwed up my back. Now, I can barely sit down (if I do, I can’t walk properly afterwards and I get pain radiating down my left leg) – so I’ve been spending most of my time propped up in bed or laying down.

I’m just hoping that I’m able to go and see my chiropractor soon as the problem is not resolving on it’s own.

–

Food-wise I’ve been trying all sorts of things! Pasta with tuna mayo, cheese on toast, jacket potato with homemade chilli, pizza… The list is endless! When my mum came to visit, we even went out for pizza on her last night, and I managed to eat half of a kids pizza! (It took me about an hour to do so, but that’s fine!)

My first outing since my surgery!

Up until the weekend, I had a great appetite and would crave almost anything. But now, even typing the above makes me nauseous. I’m not really sure what’s changed and I’m struggling to overcome it at the moment as the nausea makes it difficult for me to eat or want to eat. I’ve found that chewing peppermint gum relieves the nausea, but only temporarily. I’m just hoping I can overcome this hurdle and find some solutions to this so that I can get my appetite back. 

 

Kissing my Stomach Goodbye

On the 26th September, I kissed goodbye to my stomach. Why? Well, to cut a long story short, I inherited a mutation in the CDH1 gene – which means I have an increased chance of developing diffuse gastric cancer and lobular breast cancer. After a routine gastroscopy in April revealed one of the biopsies to show cancer, I made the decision to have a total gastrectomy. Below are extracts from my diary that I wrote during my stay in hospital.

Stomach Plush – Bought from Plusheez

 

26.09.17 Day of Surgery – Tuesday

Home

Before

In Recovery

Today is the day. Something I’ve been building towards for the past 4 months, ever since I got that phone call on the 18th May. Currently sitting in hospital in pjs and a dressing gown, trying to keep as cosy and warm as possible. B is sitting here beside me, usually sleeping as he’s shattered. We were here 8.5 hours yesterday for my pre-op so we were both exhausted! Luckily they gave me a sleeping pill to knock me out last night. Starting to get a bit nervous now. Just trying not to think about it all as I keep visualising myself in the operating room and it freaks me out a bit. It’s a long road ahead, but I have to do this. The alternative would or could be much worse…

27.09.17 Day 1 – Wednesday

So yesterday went well. The level of care here has been fantastic so far. The surgery took longer than the expected 3-4 hours. I was under anaesthesia for 9 hours! This is because they sent some tissue to pathology for testing to see if there was any gastric mucosa left behind where they made the join of the oesophagus to the small intestine. It turned out that there was, so they cut more tissue away and made a new join. When the surgeons told me this today, I thanked them massively as having stomach mucosa left behind had been my biggest worry. They allowed B to come and see me in the recovery ward at around 10pm last night. They said I would be incoherent and wouldn’t remember anything, but I was fine! Even the nurses were shocked! When they awoke me from surgery, I even asked them what time it was and was surprised at realising that I had been asleep for 9 hours!

Today I am allowed to drink 300ml of water, but it’s a struggle. When I take a sip, it feels like it gets trapped in my throat and chest, so I sucked on ice cubes instead. Unfortunately, that’s now causing the same issue. I managed to get up onto my feet with the help of the nurses, so that’s something at least! Baby steps – one day at a time. I will try again tomorrow. Apparently I look well and have no fever, so that’s a good start.

28.09.17 Day 2 – Thursday

So today, the physiotherapist got me up and walking down the corridor and back! My main struggle is the air that’s trapped in my body. A lot of it is in my chest and some further down. The pain is horrific! Turns out it’s from the CO₂ that was pumped into me during surgery. They said most of it will be absorbed by the body and muscles over the next few days. B came to visit again today, it’s really great having him here. I haven’t done much at all today apart from rest but surprisingly, it hasn’t been boring. I just need to remember that my body needs time for everything to heal, so rest is very important. I also managed to drink half a glass of saft! Small victories!

 

29.09.17 Day 3 – Friday

Sitting Upright

Walking

Flowers from Gianni

Last night wasn’t so good. I think I called for the nurse 3 times because of the pain caused by the trapped CO₂. Today was okay, I walked three times with the IV stand (no longer need the zimmer frame thing!) and I can even walk without it whilst someone else pushes it along for me! The only downside is that it’s pushing around all the air inside me when I walk. I’ve cried twice today from the pain because it’s so bad and now it’s pushing against my incision where my stitches are. If I didn’t have to deal with this, I feel it would be plainer sailing! Gianni stopped by today with Bjørnar, and brought me a beautiful potted plant. It was nice having extra visitors. It was also nice being able to catch up with him, as I havn’t seen him for a couple of months. B has been wonderful though, attending to some nurse type things whilst I’m in here, what a saint.

30.09.17 Day 4 – Saturday

My Room

Flowers from BK & Anne Marthe

Last night also wasn’t good. I called for the nurse 4 times because of the pain caused by the air. Each time, they increased my epidural and I would fall asleep only to wake again an hour later in agony. On the fourth call, they gave me morphine and I slept for 3 hours until the nurses came in at 7am.

Today has been a struggle. My epidural was removed, as well as my catheter. The pain has been the same as last night. Over the course of the day, they managed to get the pain under control by giving me morphine. BK and Anne Marthe came to visit in the afternoon, which was lovely 🙂 They brought me a beautiful bouquet of purple flowers. Weirdly enough I felt a bit guilty because I was very drugged up and still in a lot of pain, so I wasn’t much fun to be around!

01.10.17 Day 5 – Sunday

Today has been a much better day! The pain has been managed throughout the night, which meant I got a lot of sleep and some during the day too. I also drank 1.5 cups of tea, 1 cup of lemon water and a bit of saft. So I feel like I’ve managed to get a lot down today. It’s also been nice having more visitors as Linda came to spend the afternoon with me. She brought me a lovely pink lotus flower friendship bracelet, that she also has in blue. Very thoughtful ❤ B also came to visit later in the day and he’s just getting ready to leave. Later, I’ll give my mum a call and maybe try to read my book. It’s so difficult though as my eyes keep rolling around in the back of my head as I feel tired all of the time.

02.10.17 Day 6 – Monday

Me and Vigdis

Flowers from Vigdis

Today has been an interesting one. I was sent for a chest x-ray at 9pm last night. (I’ve been wheezing a little bit when I breathe in and out.) Turns out, I have a bit of fluid on my lungs. No infection though, so I have to be mindful to take deep breaths and be up and about more. B and his mum came to visit me in the afternoon. It was lovely having her here as I didn’t know she was going to be in town until I was in hospital. She brought me a beautiful bowl of flowers, which one of the nurses commented on saying how pretty it was.

Today I’ve started to eat a few things. I say eat, but it’s still liquids. First off, I tried a chicken stock cube in hot water (too salty as I used the whole cube in a small amount of water – silly me), then i had 3/4 of a high calorie berry protein shake and a bit of fiskesuppe. My appetite seems to have changed though. I absolutely loved fiskesuppe before, but once it was in front of me, the smell made me feel nauseous. I tried a couple of spoonfuls and couldn’t have any more. Today I’ve been walking up and down the stairwell! Managed to do it three times as they suggested. At the moment, I have a lot of strength as I’m given saline and glucose via IV. Tomorrow they’re planning on removing my drainage tube. That’s the source of a lot of my pain, so hopefully once that’s out, things will get a little easier.

03.10.17 Day 7 – Tuesday

Today they removed my drain! At first, the nurse removed the bandage, and then the stitches. She gave me morphine and suggested I walked around for 10 minutes to loosen the drain. I’m squeamish with needles and stuff like that, so it grossed me out to look down and see a tube sticking out of my abdomen! It was a bit painful as I was walking around and I started to get dizzy just before she came back into the room. It was painful when she pulled it out! I yelled out that loud, I’m sure the whole ward could hear me! I still have a lot of discomfort in the area, but it’s no surprise really as it was through my muscle.

It’s now 9:30pm and someone has been wheeled into my room 😦 Boo! I had it so good! I was initially sharing a room with somebody until Friday, so it was nice having a space to myself for a few days. Never mind, I should only be here for another few nights.

04.10.17 Day 8 – Wednesday

Today I’m going home! They said I could stay another night if I didn’t feel safe leaving today, but I feel ready. I still have some discomfort, but I’m coping well without morphine.

I’m still trying to eat as often as possible. I got a bit dizzy in the pharmacy earlier, and figured it was my blood sugar level. So I had a teeny bit of honey once I got home, which seemed to help. I even tried a mashed up poached egg in the evening! It’s nice to be home and trying different foods and being back with B ❤

 

 

I just want to say a huge thank you to the wonderful Nurses, Doctors and Surgeons at Haukeland that looked after me during my stay, thanks for the lovely messages of support and kind words from my family and friends, thanks to my wonderful visitors that came to see me in hospital, which made my time spent there much more pleasant… and the biggest thank you of all to Nurse B ❤

Not sure how I could have gone through this without him.

 

A Year of Knowing

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…

 

 

 

The Dreaded Phone Call

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 ring 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 could mean 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…

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…