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.
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:
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…
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!
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!
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.
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. 😇 🍀
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 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!)
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.
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.
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.
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… 🤞
At 22:15, I had some mild deep abdominal pain (right side under my ribs). Initially, it felt like sore muscles but I couldn’t sit comfortably anymore so I got up to get ready for bed. In less than five minutes, the pain went from 0-100 and it felt like I had been winded; kicked both in the ribs and my back (but only on my right side). I was writhing about on the bed in pain – unable to breathe, or talk. I’ve honestly never experienced pain like it.
B called the hospital, and I took 10mg of morphine so that I was able to get up and walk outside for a taxi (I still have some tablets left over from my surgery). Luckily, the morphine really took the edge off!
A surgeon came to examine me and suspected it was a gallbladder attack. Gallstones are common in gastrectomy patients due to rapid weight loss. They gave me 2 shots of Buscopan (one in each ass cheek) to help stop the spasming in my gallbladder. They explained that stopping the spasming may help the gallstone pass through the bile duct.
Resting bitch face + Pain + 10mg Morphine 🙈
I feel like this may only be a temporary solution 😕 I guess time will tell.
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!
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!
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.
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.
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.
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. ❤
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:
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!