What treatment was really like
Taking happy pills and gambling
In July 2021 I flew home to the Netherlands to visit a doctor for a knee injury I had sustained in a brawl with a friend some months before that. We had been in contact and talked about this lump sitting some 15 cm above my knee. I thought the “muscle knot” originated somehow from this knee injury - he obviously didn’t understand the size and seriousness of this thing. The moment he put his eyes on it he said: “this is abnormal”. I was put through a machine and waited for the results.
Me and my dad got called into the doctor’s office. Next to the doctor sat a woman, they both looked at me really seriously. He started talking, I just remember him using the words: “It is something malignant” while pointing to a screen with pictures of my leg. What the fuck was he talking about? I really didn’t understand what he was saying. He followed up with: “It could have originated from the lymph nodes or somewhere else, I can’t tell”. I looked at the women sitting next to him, the moment we lock eyes she immediately looks away - that’s weird I thought. He told us he had contacted a hospital for an appointment the next day because this was urgent, sure thanks. Me and my dad left that office and took the elevator upstairs, as we walked to the door I slowly realized what had just happend: I got fucking cancer.
Everybody knows a version of the story I am telling here: a (healthy) person visits a doctor with some mysterious lump, pain, itch or whatever and leaves with a cancer diagnosis that flips their world upside down. Here, I will honestly to tell you what treatment really did to me and how I handled it, it is not a pretty story.
Everybody around me remembers where and when they heard the news. It ruined my friends vacation, my mom’s trip, job opportunity, and is etched in the minds of others. I on the other hand barely remember anything, from the moment I left that office all my memories are scattered.
In one of the first appointments at the hospital I told a version of the story How my instincts killed me, where it became evident that I was in pain. The doctors put me on the opioids oxyNorm and oxyContin, respectively the short and long working counterparts of the same medicine that is a derivative of opium. The small dark and - light blue pills worked, really well.
The chemotherapy I’d receive is called VDC / IE, the letters standing for the names of the substances they’d pump into my arteries. I started with 9 rounds of chemotherapy: 5 times VDC (2 days at the hospital) and 4 times IE (5 days at the hospital), one round is a total of 2 weeks. This means that after those 5 days of chemo I would have 9 days rest and then start the next cycle. After these 9 rounds, they would operate and remove what was left of my devil mango and then resume chemotherapy (5 rounds) combined with radiation (25 rounds). The goal of the treatment: cure.
During one of the first rounds of chemo I had a talk with a young lady doctor, I admitted that the opiates did a lot more than relieve my pain, I said something like: “They don’t just help with the pain, they make my day better”, she answered: “But isn’t that nice!?”. What I was actually trying to say was that I liked them a little too much, the pain killing effects were becoming secondary.
The truth is that if I look back on the last 4 years, that year of treatment was emotionally the easiest for me. Having the structure of the rounds of chemo, surgery and radiation always gave me sense of direction. I knew what I had to do and why: do what is needed and not die.
Besides this guiding light, I was now in total survival mode. Somewhere between getting my diagnosis and starting treatment a button switched. I had the extreme conviction that I was going to survive, I just knew it. I remember looking at old photo’s of myself from Florida and thinking: “that doesn’t look or feel like me at all”. My identity had shifted completely, I was now survival Hidde.
The treatment was done in unit 3C. The place smelled like you’d imagine, sickness with a hint of death. I mean maybe it wasn’t that bad, but they tell you about life to smell the roses, don’t smell 3C. I wish I could give you more insight into what was going on in my mind at the beginning of treatment, but I think I just made the best of it.
After the first round of chemo I felt so sick and kept puking at night, if this was going to happen every time I was in for a treat. Luckily, that night was the first and last night I ever puked - I probably forgot to take the anti-nausea medication.
I remember after one of those first chemo’s it felt like gravity had shifted and increased by 50%, it was a very uncomfortable feeling. While laying on the couch I was trying to keep my head above my body, which felt like a workout. That scared me a lot: how can I endure this? I did find a solution to it: the small blue pills.
After another round of chemo I couldn’t sleep because my heart was beating so fast while I was laying down. The continues fast rhythm of my heart in my ear worried me so much. We called the hospital and they asked us to call an ambulance. I was brought to the ER (Emergency Room) where they tested and checked everything - the conclusion: it was just my body responding to the chemo. They gave me some sleeping pills and after that it never happend again.
Looking back on these incidents, I now see the first signs of the anxiety coming to the surface. I was so scared of the shit that was happening to my body and I didn’t know how to handle it. I was focused on finding solutions to my problems, but it wasn’t the symptoms that were the problem, it was the emotions I was repressing.
I think if somebody told me to deal with my emotions, it wouldn’t have mattered (and maybe someone did, but I can’t remember). In my mind it was all about the next day, the next treatment or how to entertain myself for the next couple of hours, feeling my emotions never crossed my mind.
My survival mode had already kicked in in Florida, but now it was different. I was at home with my parents and under treatment in an excellent hospital, in some way, my situation got much better, even though I had cancer. In Florida I was dealing with the unknown, now I knew what it was and what I had to do. The downside was that I never really processed anything that had happend up to that point and wasn’t planning on doing that with the stuff coming my way, I just doubled down.
One day one of my friends showed up with a little glass bottle of “CBD Oil”. His girlfriends mom had used this so called CBD during her treatment. We found out very quickly it wasn’t just CBD, it was straight up weed. I added this to my now growing medicine cabinet.
Besides all the drugs I now possessed to keep me busy, I was also constantly distracting myself by learning and watching stuff about cryptocurrencies. Later I started trading them, and I can tell you, somebody undergoing chemotherapy is probably not levelheaded enough for that. Combine that with taking opiates, weed and being in total survival mode, makes for the perfect cocktail to make terrible decisions. What did I think?
People often talk about “battling cancer”, I never felt this way. In my opinion its about enduring, suffering the mental and physical (side)effects. In a battle I am able to fight back, that definitely wasn’t the case at all. Its the way back, the uprise after treatment that is the real battle. Your life got wrecked - are you going to feel like a victim or get back on the saddle? That is the battle, there is your choice.
The chemotherapy did its job, the tumor started shrinking significantly and as rounds continued my mango was becoming an apple, a kiwi and eventually the doctors would be able to operate me and get rid of this terrible disease. Weirdly enough, I wasn’t all that happy about positive news like this. Firstly, I knew this is how it was going to play out, when I left an appointment and they said: “it shrunk” or “we will be able to operate in x amount of weeks”, I was like: that went according to plan. Ofcourse, there was relieve, but that didn’t last long - I had more shit to do. Secondly, I was so focused on that magical point: the end, being done with chemo and then being able to go back to real-life. Just leave all of the bullshit in the past and live, but I was so horribly wrong, nothing was further from the truth. As I am writing this, I am still dealing with what happend, it changed everything.
During chemo I actually gained a substantial amount of weight. My friend used to bring kapsalons with a crazy amount of sauce - during chemo your taste buds get nuked, one time I sipped a coke and thought it was sparkling water - I would decimate the kapsalon within minutes (maybe less) and then put a snus in my mouth, those were the absolute highlights. The weight gain revealed one character trait I call a skill now, I can eat a lot when I am not hungry. The Japanese have word for this: Kuchisabishii which means lonely mouth, I had a lonely taste deprived mouth.
Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. - Sunsan Sontag
At this point I deleted all my social media because I couldn’t stand looking at other people’s lives. I felt like I was missing out on everything that life had to offer and they just threw that in my face. Sometimes I could envision other people having fun and get angry by staring at the window of my hospital room, because that was the border between the kingdom of the healthy and kingdom of the sick. The reality is that this anger came from a place of sadness and fear, the people in the kingdom of the healthy did nothing wrong.
One special mention is for the pole that (cancer) patients are attached to during treatment. It has some kind of fluid constantly dripping while you are the hospital: chemo, salt water, medicine or all of them. That thing made me piss (at least) every fucking 2 hours, no joke. I was walking on crutches at the time, so I had to maneuver this cancer Christmas tree while on crutches while being absolutely drained. Just thinking about it makes me feel uncomfortable. Therefore, I just wanted to say: dear pole, fuck you.
I always looked forward to leaving 3C, and when that moment came it was always anti-climactic. On the ride home I realised how worn out and depressed I was. Looking out the window of the car, into the normal world of healthy people, being free, I wanted to curse at all of them. Ofcourse I kept all of this bottled up, and to deal with this I probably just ate some pills when I got home. At home I got better, to do it all again 1,5 week later. At least now l wasn’t attached to this pole anymore, that was the biggest win.
It was now time to remove the tumor for good. I went into surgery with 9 rounds of chemo behind my belt, but for some reason my body took it quite well. We celebrated Christmas in the hospital and I left the 29th of december to start chemo again the 7th of January - the train kept going. Checkout the physique update in the picture below - I remember the nurse asking me to take this picture to sent it to my parents, which I ofcourse never did. Back then, I resented her for even asking, but now I am glad she did, its definitely a sight to behold.
The round of chemo after the surgery was the hardest one I ever done, I had absolutely NO energy. I was always in this subliminal space between being awake and being asleep. Besides that I don’t remember much, but it sucked.
One of the side effects of opiates (and chemo) is strange dreams, nightmares and hallucinations. As treatment furthered, the dreams and nightmares turned more into hallucinations. One night in the hospital I woke up feeling like I was tied to my bed, I was convinced I couldn’t move and had to stay laying exactly as I was. After a while, I came to consciousness and realized nothing was going on and proceeded to move.
Another side effect of chemo I’d like to mention is mouth sores. Chemo can cause damage to the cells that line the mouth and throat, causing sores. I had a bad case of this after one of the last rounds of chemo, it hurt so bad that I stopped talking altogether for some time. Another girl that started treatment at the same time with me had it even worse, her sores had turned black. I mean the side effects sucked, but not being able to talk, what the fuck is that. (If you have a strong stomach, Google: mouth sores after chemo, have fun).
At some point I started to talk to myself incessantly at night. I felt like I couldn’t get my inner narrator to stop talking, it had so much to say. If I didn’t stop myself I think I could have stayed up all night just talking and thinking about everything that happend to me, what was going to happen and how the world would react. One of the things I thought about a lot was dying; what my funeral would be like, who would talk and what they would say. I fantasized that people would say good, inspiring things. Make of it what you will, but that’s where my mind was at.
It was now time to start the radiation therapy. The radiation therapy was done 5 days a week, from Monday to Friday. Before they could start, they had to make a mold of my leg so they could position my leg the same way every time during radiation. This process sucked because I had to lay there naked, completely hairless and absolutely depleted while people are treating you like an object, I felt so so vulnerable. Also, much of the staff there was women and my age, nothing more confronting than that. Then therapy started, combining chemo with radiation and adding the vulnerability of it all really took its toll, writing about it still hurts. Lastly, the radiation area was close to my genital area, therefore they tape a big spoon called “scrotum lepel” with your jewels to your leg to keep them from getting radiation. Sometimes it wasn’t aligned properly and they had to come in multiple times before we could start, often a girl my age would walk in to re-align it, yeah not great. I remember they had a picture of beautiful tree on the ceiling to look at, that was the only comforting thing that place had.
As chemo continued I was being placed in a room with another guy a couple years older than me. They put us together to safe up space for other patients, 3C was getting busy - cancer doesn’t take days off I guess. We liked each other, so from that moment on we almost always slept in the same room. He thought the cancer in his foot had developed due to a too narrow safety shoe he had been wearing. I don’t know whether it was denial or that he really believed it - maybe I should have skipped the skinny jeans after all.
The opiate use started to ramp up during this time. I actually would take them to the hospital with me during chemo and take them secretly, not really ofcourse because I would just say I was in pain, which was true, but it wasn’t physical.
One of these last rounds of chemo they brought me downstairs to the ER to make an ultrasound. The Doc did his thing, and after the check-up, left me alone waiting for someone to pick me up and bring me back to 3C. I waited, and waited, and after a while I figured they weren’t coming. I felt odd sense of excitement coming over me, finally something happend - now I was all alone in the ER at night. I couldn’t really do shit, I was tired and stuck in a wheelchair but I loved being down there, forgotten.
Like I said, at some point I started trading cryptocurrencies. I don’t remember exactly when or what, but it did happen and I figured out months later I made a huge mistake. I wouldn’t really call it trading to be honest, it was more like playing with money while saying “I know what I am doing”, thats what all gamblers say. I was just high on opiates drawing some lines on a screen pretending to being good at it and acted like I was doing something productive. It did distract me from everything that was happening around me and gave me an obsession to focus on, that’s something right?
My arsenal of weed drops, opiates and snus actually made me feel quite okay during the whole treatment. Judge me all you want; this was how I coped with emotional distress. Ofcourse I don’t advise anyone to handle difficult times like this with substances and gambling, but here is the kicker: they work! In the short term they actually help you, that is why people use them. In the long term you should find other coping mechanisms, actual fulfilling ones that might also bring you closer to yourself and your feelings. This is something I learn at a later stage and will benefit from forever (writing, maybe?).
Treatment striped away my health, school, work, confidence(in myself and in my body) and ability to blow off steam, and what was left was a pill addicted gambler looking to get feel good emotions to get through his day, that was the reality of treatment for me. You might think this is harsh, but as I have learned: the truth hurts. Being a human being means that sometimes you fail miserably and I got exposed for what I am. And while it hurts to put this out there, I have also learned that is part of the human condition and that the only way forward is to take responsibility and learn your lesson.
Biographies should show people in their undershirts. Goethe had his weaknesses, and Calvin was often cruel. Considerations of this kind reveal the true greatness of a man. This way of looking at things is better than false hero worship! - C.G. Jung
Humans have an amazing capacity to survive or rather, not die, and will go any lengths to do it. The fact that I didn’t recognize myself in pictures, have difficulty remembering stuff and did debatable things is evidence of this survival mode, but it isn’t an excuse for what I did. Like Navy Seals say: “We don't rise to the level of our expectations, we fall to the level of our training.” And my life hadn’t trained me for these circumstances, to deal with these things in a healthy manner, but its my task to take these experiences and transform.
As I am writing this, I am still dealing with having been in the survival mode I have been describing. All the built up fear, anger and sadness repressed from treatment and before found its way out eventually. I pushed down so many emotions, but like a balloon you try to keep underwater, it will always find its way to the surface. My balloon unleashed hell on my mental state - it made me hit bedrock. I will talk about this in my next essay.
I don’t want to come across like mostly negative stuff happend during treatment. Friends, family and medical personal played a huge part during my treatment, I would have never made it to the end without them. They helped me tremendously, which I am very grateful for. This is something I have difficulty expressing at times. I have to admit, I feel guilty for not including more in this story about those magical, positive moments of treatment, but this story is not about that, this is about coming to terms with myself.
Take care & talk to you soon,
Hidde