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… 🤞