In this post, I will share the bizarre week that lead from having no idea, to getting a diagnosis and prognosis.

Tuesday the 24th of September

Today is the day I get an ultrasound of my liver, after months of declining health, blood tests, antibiotics, and a possible long covid diagnosis. The last round of bloodwork showed my liver values were off. My doctor reassured me “I don’t think anything will come out of it probably a response to an infection, just a precaution to rule out other things“.

My wife and I joked that it was only fair I got to have an ultrasound while having lube spread all over my belly. She got them every week in the later stages of our twins’ pregnancy. I chatted with the radiologist about the same fact and had some nice chit-chats on having twins. Until she stopped in the middle of our chit-chat.

“I have some bad news, I see spots on your liver. I can’t see what the root cause is. it could be metastases or benign. but it’s there. I’m going to get you a priority spot at the hospital to get it checked”.

A complete shock. I was under the assumption I would hear the results from my doctor at a later moment. She was very kind asking if she needed to call anyone and if I was okay to drive home. I said the news hadn’t registered and I was probably okay to drive the 10 minutes home. I was at first, but with every red traffic light that came closer to home, I started sobbing.

When I came home through the front door, I started a big ugly cry. My wife was in the kitchen, and my twins noticed Dad was crying and came to give me a big hug. After a few seconds, my wife noticed that the weird sound was indeed me making a big ugly cry. We hugged and the news slowly started to settle.

I always say if you have to wait at the hospital/doctor it’s a good thing because if they rush you it’s probably bad. Within 30 minutes of returning home, I had several phone calls from my doctor and the hospital confirming a CT scan the next day at 9, and a follow-up appointment with the gastrointestinal liver doctor at 11.

Wednesday the 25th

One of my favorite quotes is from Seneca: “We suffer more in imagination than in reality“. It’s pinned on my Notion board as a reminder to get out of my head. And surprisingly I wasn’t nervous at all for the CT scan. I realized that I had zero influence on the results. It was weird to get the CT scan done. The contrast fluid felt like drinking gluhwein that spreads through your entire body and makes you feel like you peed your pants. I was in and out in about 10 minutes.

And that is where the nerves started. 2 hours of waiting time until the meeting with the doctor. As a tradition with my wife when she was young, we got a Sausage roll at the hospital to kill some time.

I was afraid I had to wait a long time in the waiting room, as I’m usually used to appointments running late. This one was right on the dot. Another giveaway.

The doctor immediately shared the heartbreaking news. They found a tumor in my colon rectum (Endeldarm). Which had metastasis in my liver, and possible longs (later confirmed). A total and unreal shock. We chatted about possible symptoms, how this could be missed, and what the next steps would be.

The best outcome would be that my tumor would be fit for immune therapy. A therapy that only tackles the bad cells and can have spectacular results, but unfortunately not all types of tumors are suited. That’s why they want to do a colonoscopy to get biopsies of the tumor to run tests on. The results hopefully will be in before Monday, when there is a big meeting with several hospitals to discuss my case.

They scheduled the colonoscopy for the next day, and I need to get some additional blood checked. I recall completely breaking down at the blood station over my date of birth. Luckily all hospital personnel were very sweet and made me feel okay with crying in front of the entire waiting room. We had to wait another 30+ minutes at the pharmacy to get medication, and finally, after a very long morning could go home.

And that is where for me the hardest part of today started. If I think about the fact that I have cancer I feel empty, and still has to sink in. But having to call my parents, sister, inlaws, etc with the news broke my heart. Seeing so much pain in people you love is indescribable.

Everyone rushed over for hugs, tears, good conversations. And already started helping with a ton of things to arrange. Like a proper guest bed so they could stay over any time we needed it.

In all the chaos I forgot to check the instructions for the laxatives for the colonoscopy. I missed my last eating moment and needed to remain sober for the next day. I already needed to be sober for the CT scan. So in total, I ate one sausage roll in 2 days.

Thursday the 26th

It might have been the combination of the laxatives, the shocking news, or any other I mentioned above. But I did not sleep at all. The colonoscopy was the procedure I dreaded the most. But in hindsight, it was probably the easiest one of all the procedures this week. The people in the hospital were very understanding and even made some rearrangements for my wife to be with me sooner than normally allowed. They gave me a sedative and I awoke after the procedure completely tripping. My wife made some videos where I’m saying some funny stuff I don’t recall at all.

After I was feeling a little bit awakened, we had a debrief with the doctor who did the colonoscopy. The tumor was the size of a golf ball, which really shocked me. And grew inside a polyp. And it was hard to get samples of the tumor, so she took as many as she could. She hoped it was enough, and otherwise, a new colonoscopy or liver punction would be an option.

My wife asked if there was any mental help available, and an appointment was made for that afternoon. Due to the priority job of my tests, not all meetings were planned in the proper order. We drove home, with me still tripping. And I finally fell asleep.

The meeting in the afternoon in the hospital was very reassuring. A lot of stuff comes your way, and it was nice to have a central point of contact you can always call. She made sure I got prescriptions for sleep medication and other things that would make me feel better.

I also missed my 10-year anniversary at Drukwerkdeal! They already ordered the cake, and I hope everyone enjoyed it!

Friday the 27th

The first day without a hospital visit. I felt exhausted from the colonoscopy. I lied on the couch with no idea what to do, what to watch. Several calls came in for things to get started. From a dietician to make sure I regain some weight, to people to visit us at home to check on us. In this chaos, I forgot my painkillers and started to feel like shit. Understandable if you have been on 6 paracetamol and 3 ibuprofen just to get through the day.

Saturday the 28th

I awoke around 2 o’clock at night feeling even worse. It felt like a high fever and the short walk to the bathroom for the thermometer left me completely out of breath and my heart pounding. My temperature was 39,1 degrees and one of the things we were warned to immediately call the hospital for. They wanted to see me, and luckily my mother-in-law was staying with us so the kids could stay home.

They ran several tests on me, and the main thing they wanted to rule out was if I had an underlying infection that they could not “see” because my bloodwork was already off because of my tumor. That did not seem the case, and they thought my shortness of breath could be caused by either a collapsed lung or thrombosis. The high fever by something called ‘tumor fever”.

They gave me some blood thinners as a precaution, which is a great combination if you just had a colonoscopy where they took samples of you. And admitted me to the oncology ward to run more tests in the morning. Around 5:30 in the morning, my bed was rolled into a room with a few other folks and I tried my best to get at least a little bit of sleep.

Around 9 I got another CT scan, this time for my lungs. And got introduced to the nurses. It was a mentally tough day. Not just slowly realizing the reality of the last few days. But because of the IV line in my elbow, I couldn’t use my left arm. Which is hard for basic things like eating or going to the toilet.

I had to accept I was no longer the fit and healthy half-marathon runner, but the guy who needed help eating a slice of bread. A little while later, they ask me if I want to get freshened up and take a shower, and I say I’m not able to. They wanted to help me but I completely had a breakdown that I didn’t want help getting a shower. Luckily my wife just came in. She was allowed to come before visiting hours due to the situation, and to drop off some stuff. She notices me struggling and we compromise where she washes me with a washingcloth instead. Which feels better than to have 2 nurses help you shower.

The doctor visits with some good news. I don’t have a collapsed lung or thrombosis. “just” the tip of my lung was a bit pushed inside, and it could be relieved with some hard coughing. Nothing serious. They want to keep me in the hospital to keep a good eye on me, and to make sure any further diagnostics they need to run on me can be sped up. A bit of a bummer but I notice the rest and quiet in the hospital is doing me well.

During visiting hours my twins visit. They got to pick out a card for Dad from the gift shop and they picked a blue card with “its a boy” because it had a train on it. And trains are awesome. We had a good laugh, and several nurses came by to check how cute my boys were. They definitely noticed something was going on, and Bram asked if I was coming home.

I get to order one of the hospital dinners. It reminds me of the 3 weeks we spent in the Neonatology ward when our twins were born prematurely. And had a little game to try all the meals. I received stomach protectors a few days ago and I was pleasantly surprised this was the first full meal I was able to eat in at least a few weeks without stomach pain or feeling full after a few bites.

The lady that brought the food and drinks was very sweet. I’m on a high-protein high-calorie diet to make sure I gain back some weight. She tried her best to get me anything I liked. Those little moments meant a lot. My wife made a comment I liked chocolate pudding? Guess what I got 30 minutes later.

Sunday the 29th

A slow day in the hospital. Some folks got discharged, and I was left with one male who was about to turn 60. We had a nice chat, and he asked if he could play some music because his headphones were empty. I did not see coming that he liked Normaal and other artists in that genre.

Taking a look at the oncology ward made me realize I’m by far the youngest. A pattern that would repeat itself in the future.

I started to get a little bit more settled and made my first walk outside of my room to get a hot chocolate. I took benefit of the fact I wasn’t going to eat with my Wife who’s allergic to nuts, and ordered a dish with peanut sauce.

In the evening my wife came to visit and we discussed with the nurse we were nervous about the next day where we would get the results. We discussed that the timeline would be a bit different now that I was at the hospital, and not coming in for an appointment. And that it would be a good idea for my wife to be there early to also see the general round of the doctors.

After my wife left I had an emotional night, luckily my twins brought me two of their favorite stuffed animals to keep me company.

Monday the 30th

D-day. Or so it felt. My wife was there bright and early. to not miss the rounds. Well, it turned out, that Monday was the busiest day for rounds, and they did not show until 12:30. During the day two new people joined my room who were starting a round of chemo. Still not knowing what came my way, this made it confrontational.

When the rounds came, it was anti-climactic. The resulting meeting was canceled as the results were not in yet. They however could see that there wasn’t enough material to run all tests and that I needed a liver punction. And that we might get more news the day after. After being so nervous for the entire day, this frustrated us.

The positive thing was that the lady of lunch came to me, and whispered in my ear “I only have one croquette left, and I want you to have it so keep quiet that the rest of the room won’t hear it“.

Because I was in the hospital they could squeeze me in any slot. Within an hour of the rounds, I was called away for my liver punction. Just before that the oncologist came and shared that we would have a meeting at 9:00 tomorrow to discuss the results. And after that, I could be released. A relief to speak to my oncologist, and that they shared our concerns. And the good news, a private room cleared up, after the punction I would have my own room!

The liver punction was a weird procedure. The local anesthesia was a nasty one. And while you don’t feel a thing after that. A surgeon is taking samples from your liver with a very big needle, and an audible “click” sound. The staff was very understanding and did their best to make sure I was completely comfortable and reassured. It really surprised me how sweet and caring all the nurses were. Some even had watery eyes when we discussed my case, and how touched they were. I had to lie completely flat for 3 hours after the procedure, but since I was in my own room was much more manageable.

They gave me some extra medication to make me feel a bit better, this gave me a ton more energy and reduced some of my pains. Apparently, I got a double dose to speed things up, and one of the side effects was high blood sugar levels. And today I got my first shot of insulin.

Tuesday the 1st of October

The first birthday of my wife we shared was almost 10 years ago. I had a nasty stomach bug. I spend most of her birthday vomiting, and she calls it “her worst birthday ever”. After today I’m not sure if that’s still the case.

When my wife came in, I put on a happy birthday song, we laughed we cried. But mostly nervously waited for 9 o clock. Which was exactly one week since the ultrasound of my liver.

The oncologist, nurse, and co-assistant came into my room. The oncologist was the good combination of hard on the details, and soft and caring on the rest. You don’t want false hope. You want to know what’s coming.

She immediately shared that she did not have good news. Not all tests were in, but enough to share that the type of tumor I have is not suited for immune therapy. And as a result, they can’t cure me. The best they can offer is a treatment to increase my quality of life and prolong my life. Ranging from the worst case a few months, to a few years. Enough to make some lasting memories.

The treatment will be at first 4 rounds of chemotherapy. Aiming to get as many benefits from the chemo, without too many side effects. Then a CT scan to see if it helped. I’ll be at least occupied until Christmas.

I got a short course on how to measure my blood levels and give myself insulin. And we rush home to have a meeting with a specialist who will help us at home.

Even after this lengthy journal, it’s impossible to put into words how I’m feeling. I’m feeling a ton of love around me, and a fire within to take on this fight.