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…

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)

TG Recovery – 6 Month Update

Has it really been six months already?!

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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!

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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!

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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

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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.

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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.

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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.

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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.

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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. ❤

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.

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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.

 

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.

 

 

 

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)!

(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