Julika

Published On: 2021/12/22

I’ve been writing and rewriting this blog post for exactly two years now.

No matter how often I tried to find the right words, I just couldn’t.

Sometimes I would try to appear strong and make sarcastic jokes — sometimes I sounded too whiney (especially in comparison with the global sh!tshow that the last two years have been with so many people going through so much tough stuff).

But my emotions were (and still are) all over the place. Oscillating in-between sarcasm, self-pitying, and recounting traumatizing experiences with a hard-nosed neutrality is probably the most authentic I can be. So, let’s get this blog post over with after all.

I thought the first half of 2019 had been tough.

I thought having your husband get diagnosed with stage three colon cancer at age 31 must be the hardest moments of 2019.

I thought it couldn’t get worse than watching your spouse fight their way through chemotherapy and radiation, very much on the edge of breaking.

But towards the end of the year, when everyone else was decorating their Christmas trees, cheerfully looking forward to the festive season, I was experiencing a point of mental and physical exhaustion I didn’t know existed.

I probably won’t find the right words to describe 2019 properly, I certainly don’t have the right photos to accompany my words with. All of 2019 I felt like I was faking it, putting concealer on my swollen eyes, laughing away the exhaustion, keeping up the good spirit, pretending I not was plagued by nightmares and utter exhaustion.

So, I might as well fake my way through this blog post.

I’ll start chronologically, in early July, where my first 2019 review ended. Back when Steffen and I were still YOLO-ing knowing there was a big surgery happing soon that would change our lives drastically.

I’ll do the “snippets”-aspect in this blog post title justice, because even years later I can’t form a cohesive story out of 2019’s events. I have blurry memories of a summer spent in the hospital, overwhelming images from the ICU and the emergency ward, and a lot of indistinct months spent mostly at home.

July

My birthday is in early July and we started the month with ice cream and a fancy dinner with friends.

Chocolate ice cream for my birthday

Tempura veggies

… and more sweet birthday treats!

My birthday present was one last hike before Steffen’s surgery: We rented a car and drove to our backyard national park, the Harz region, to embrace central Germany’s prettiness and our hiking selves (that we didn’t know we could return to).

Gazing over the impressive Bode river canyon

They are crazy for devilish things in Harz National Park

An actual witch house!

This restaurant down in the Bode river canyon supposedly has one of the most beautiful beer gardens in Germany… 

and this is what that beer garden nestled in the canyon looks like!

Three days after celebrating our last big outdoor adventure in Harz National Park, Steffen underwent surgery to have the tumor removed.

The surgery took about eight hours. I didn’t know what to do with myself as I anxiously waited to hear from the hospital. I planted rosemary on the balcony and starred at my phone, barely daring to go to the bathroom to miss that important call. 

Steffen was brought to the ICU after the surgery. Seeing him there, with multiple intubations, surrounded by cables and blinking items I had only seen on TV shows before was an image that will haunt me forever.

I spent every possible second next to his hospital bed, while still going to work and trying to look after myself. High on morphine and pain, Steffen was barely able to speak for the first days. The doctors and nurses quickly pushed him to move again, though.

Seeing my husband, who had hiked 20 kilometers with me the week before, struggle so immensely to take just 20 steps in the oncology ward hallway, was one of the painful lowlights of July 2019.

Besides working and spending time in the hospital, I didn’t really know what to do with myself. I went for walks to calm my nerves, and took photos. Editing these photos was a welcome distraction on those evenings spent alone while Steffen was still in the hospital. 

In late July, Steffen’s steps slowly accumulated day by day: From the ward hallway he made it to the foyer of the hospital. From the foyer to the little park area outside.

Steffens slow post-surgery strolls around the hospital

After a little over two weeks, Steffen was released from the hospital, although he couldn’t even put on his own socks, yet. I had to hand in a sick leave at work to look after him at home.

We had to eat our dinners in bed, because Steffen couldn’t sit on a chair, or the couch even. A two minute walk to the supermarket was a challenge he had to recover from for hours.

We had to go back to the hospital regularly, because Steffen was in so much pain. Even though he was technically released from the hospital, we still spent hours there every other day with all the check-ups and complications, once even waiting for nine hours to have him looked after.

The summer of 2019, when our kitchen looked more like a pharmacy

I think it was beautiful summer weather outside in July and August, but I don’t remember anything about that. I was too exhausted to even clean up the blood stains on our bathroom floor.

I attended a wedding on one of the last days of July — obviously without Steffen as my plus-one. It was the only time I left the city that month, the only night I spent in a hotel room that summer.

My personal favorite wedding guest

My mom jumping in as my plus-one as Steffen couldn’t be there

August 

Steffen’s four rounds of follow-up chemo started in Mid-August. His surgery scars had barely healed when his body was again flooded with 2.5 liters of poison once per month.

What chemo days looked like in the summer of 2019

Steffen sporting the this-sucks-but-at-least-the-chairs-are-comfy attitude

Looking back, I feel like there were only two days in August that weren’t about cancer treatments: A work field trip to a medieval nunnery (I didn’t bring my camera, but posted some beautiful brick Gothic architecture on Instagram).

And a bachelorette party, which I was also booked as a photographer for.

While I was glad to spend a light day drinking fizzy drinks on picnic blanket in the sun, it was hard to switch my constant worrying off. Listing to a bride-to-be and her friends chat about wedding dresses and future babies is quite tough when your own husband just finished his fifth round of chemo the day before.

One of Germany’s newest UNESCO World Heritage Sites: The Herkules and the surrounding park in Kassel — quite the backdrop for a bachelorette picnic!

Flower crowns in the making

Photo sessions with the bride-to-be

September 

September was slow. We sometimes managed to walk across town to the farmers’ market, although Steffen was always in more pain afterwards.

Our adopted home city Göttingen celebrates its mascot, the Goose Maiden, every September. We could briefly attend the festivities to add a little highlight to our weekend, which otherwise mostly centered on staying at home. 

A September tradition in Germany: Drinking partially fermented young wine, the first (and incredibly sweet) first wine of the season

Göttingen’s Old Botanical Garden in September 2019 — photography still being my favorite distraction tool

October 

October was slightly more eventful, but not necessarily in a good way: Construction workers supposedly found a WWII aircraft bomb in close proximity to our apartment so we had to be evacuated for an undefined time slot.

You know what’s not fun? Being forced to leave your house by five police officers at 8 am on a Saturday morning — when your husband can’t really walk, sit, or stand, and needs tons of pain meds.

We fled into my work office with cereal and an air mattress for Steffen to wait until the bomb squad was done. It it turned out, the “bomb” was just an old barrel covered in clay. This is how they keep life exciting in a small town (insert eye-roll emoji here).

At least there was a street food festival in town on that same weekend and we could go on a little culinary trip abroad. 

Steffen and I also decided to go out for dinner for our wedding anniversary for a change. We’re usually not into celebrating anniversaries, but we figured we could splurge on a nice meal to commemorate the shittiest year of our marriage yet.

The second event that shaped the fall of 2019 was one of the most terrible days of the entire year: It was the first day of Steffen’s seventh chemo round. I was at work when he texted me to come home quickly. I knew this wasn’t good and ran home from work to find him in so much pain he could only nod when I asked if should call an ambulance.

A couple of minutes later, two paramedics stood in our bedroom asking questions like what meds Steffen was on, but I didn’t even know because there were too many.

They took us to the hospital where we waited for hours in the emergency ward. Steffen was hospitalized again for a couple of days, the chemo was postponed.

That Monday evening really showed me how you can eventually just go numb when it’s all just too much: Although I usually feel everything to intensely (meaning: I’m a major crier), on this day I just functioned without showing any kind of emotion.

Normally as an introvert, I’m terrified of making phone calls and small talk makes me anxious, but I made an emergency call and chit-chatted with the paramedics on the drive to the hospital.

It was like my body switched off any feeling to protect me.

November 

I kept going: I pushed through at work, even though my last proper vacation had been our trip to Montenegro in 2018. I even accepted more obligations to keep myself busy, although I already felt like I was drowning.

I was invited to present my research on late-medieval devotional manuscripts at an evening lecture in Rostock, meaning I got to spend a night in a hotel, in a new-to-me city right by the Baltic Sea. Although this trip was exhausting work-wise, a longer train ride and the feeling that I was actually going somewhere new helped me to feel a little more like myself again. 

Other than that, I mostly went for walks in November of 2019. Sometimes accompanied by my camera. 

December 

For the first time since Steffen’s diagnosis in February, I managed to do something for myself in December of 2019: Meeting up with friends in Frankfurt on two weekends in a row.

Big city vibes, Christmas markets, broader culinary options, and of course seeing friends I hadn’t seen in forever certainly helped me to very slowly get into my grove again. 

Downtown Frankfurt — Germany’s only proper skyline!

Skyscraper fun with my fabulous friend Jessica (long-time readers might remember our trips to Madrid or Jordan together!)

Thanks to Frankfurt, I could drink at least one flat white in the second half of 2019

Finally in a big city again, finally getting Vietnamese food again

I also brought my camera to Göttingen’s Christmas market in December and took photos of my baby nephew experiencing Christmas market treats for the first time. 

The Christmas market in front of Göttingen’s old town hall

I know, the photos in this blog post might tell a different story, but I mostly took them to focus on random small pretty things in order to distract myself from what was actually going on.

For the most of 2019, I was just functioning. 

My held back emotions obviously manifested in other ways: I developed mysterious rashes and a heavy cough I couldn’t get rid off for weeks. 

At the end of the year, I thought I could finally start feeling the feelings to eventually overcome them.

But I also sensed that people were expecting something else: Steffen’s tumor was completely removed, his chemo treatments were finished in late November. And we were supposed to be in a good mood again. I however was mostly got frustrated with being subtly expected to end conversations on a positive note.

Of course, I’d prefer to be happy. Of course, I was extremely relieved and thankful that everything turned out supposedly okay considering we were dealing with a deadly disease. Of course, I’m very aware of how insanely privileged we are to have access to medical care.

But I also wanted (more) time to grieve my old life when my husband was not severely disabled and not having children was at least a choice we could have made on our own. 

Although we were surrounded by people, the holidays of 2019 were probably the loneliest ones I had yet experienced. Even our families only saw about 30% of what we actually went through during the year (this blog posts contains about 5% of what was actually going on). 

I’m ending this blog post like I ended 2019: Exhausted, unable to tell a cohesive story. Refusing to use common tropes, but lacking words as a result. Suffering, but still keeping up the outward appearance. And knowing that 2020 had to be about healing.