Blog ENG - Victor's blog

Blog in English 😉

I write simply, straight from my heart and without holding back about my experience of the cancer disease and my thoughts on various topics that appeared in my mind during the cancer and continue to do so.

I will try to post here regularly every Tuesday or Wednesday.

Chapter 1 - The beginning

It was June 1st, 2021. I was sitting in a dentist’s chair in the Oral and Maxillofacial Surgery Department when I heard the words that changed everything. *”Mr. Mryka, you have cancer.”* That sentence froze me in an instant. But that wasn’t all. The next sentence was even harder to hear: *”The tumor is malignant, and we need to act quickly. Unfortunately, there’s nothing more we can do for you here, so we’re referring you to the Oncology Institute. They’ll take over your treatment.”* Wait… what? How could I possibly have cancer? I was only 23 years old. How could this be happening to me? To be honest, I already knew something was wrong. I had noticed a strange lesion on the roof of my mouth, and after the biopsy I knew it was some kind of tumor. But a malignant one? Cancer? I never imagined that. To make matters worse, the location of the tumor wasn’t exactly reassuring – although, let’s face it, there probably isn’t a “good” place to have cancer. The tumor had developed in my hard palate, the upper part of my mouth. A tumor in the head and neck region is never good news, and unfortunately that wasn’t working in my favor either.
After what felt like a death sentence had been announced, the medical staff immediately got to work. They issued me a DILO card – the Polish fast-track oncology pathway – which is supposed to speed up access to specialist consultations and diagnostic tests. They explained which tests I needed, where to have them done, what the next steps would be, and scheduled a multidisciplinary medical board meeting that would decide how – or even whether – I could be treated. Everything happened at once. I had only a few days to complete all the examinations: a chest X-ray, CT scans of my abdomen, head and neck, an MRI of my head and neck, blood tests, urine tests… the full package. Looking back, I don’t even know what I was thinking. Maybe I wasn’t thinking at all. Those words – *”you have cancer”* – just kept echoing through my mind. At some point—and it’s probably better to realize it sooner rather than later – you understand that all those tests are not just there to get a better picture of the tumor. Of course that’s part of it, but their main purpose is to look for metastases. And if they find too many, treatment may no longer be possible – or worthwhile. In that case, the only option left might be palliative care. That realization is terrifying. Suddenly you understand that your life depends on the results of a series of scans and on decisions made by people you’ve only just met. And where am *I* in all of this? It’s *MY* life. How could I lose control over something so fundamental? Whose fault was it? Cancer supposedly doesn’t choose its victims. Why did it choose me? In moments like that, finding someone or something to blame isn’t easy. But another question quickly follows: Do I even need someone to blame? Would it change anything? Those thoughts kept racing through my head as I sat in the hospital waiting for all the appointments to be scheduled. Looking back, I don’t think I noticed the people around me, the hospital corridors, or even the world outside. For a moment, my entire world collapsed. How are you supposed to react to news that sounds like a death sentence? When you think about cancer, you think about suffering. People lose weight. Their hair falls out. They’re in pain. Some of them die. Was that going to be my future too?
Eventually I received all the paperwork and was allowed to leave the hospital. I got into my car and called my mom. That’s one of the hardest phone calls anyone can ever make. *”Mom… I have cancer. It’s malignant… We’ll talk when I get home.”* I didn’t make any more calls. I just needed to get home. I wasn’t in any condition to talk to anyone. By then, I wasn’t asking as many questions anymore. I was angry. Angry at life. This wasn’t how things were supposed to be. I was young, full of energy, with dreams, ambitions, and plans for the future. And none of that mattered. Disease doesn’t care. It simply doesn’t. That evening I had some time to think. And I made a decision. I decided that I would keep living exactly as I had before. I would treat this disease the same way it treated me. I would stay true to myself. No matter what lay ahead, I would keep moving forward. This disease would not stop me.

I wasn’t going to give it that satisfaction.

Chapter 2 - First troubles

I don’t want to bore you with every detail of my story, because at this point it becomes quite complicated. But I do want you to have a general idea of how everything unfolded. About six weeks passed between my diagnosis and my admission to the hospital. During that time, I underwent almost every diagnostic test imaginable. As planned, I was also referred to the Oncology Institute in Gliwice. There was a bit of luck involved in that as well. A nun who was a family friend happened to have an appointment there. A few days earlier, my mother had told her about my diagnosis. During her visit, she mentioned my case to the doctor who was examining her. As soon as he heard that I was only twenty-three years old, he didn’t hesitate. *”Tell him to come here next Tuesday.”* Every Tuesday, the team of surgeons met at the outpatient clinic. That’s why I was asked to come that day. Thanks to that conversation, I was able to bypass a great deal of paperwork and was seen immediately by the very doctors who would eventually operate on me. It wouldn’t be the last time my age played an important role in this story. The surgeons saw me almost immediately. I sat down, and within moments three doctors surrounded me and began assessing my case. They carefully reviewed every scan and test result and, of course, examined the tumor in my mouth. Their conclusion was unanimous. There was no time to wait. I needed surgery. They called in two more surgeons, who examined me as well. Together they decided that the operation should take place within three weeks. In the end, the surgery was scheduled four weeks after that appointment, which was still remarkably fast. During those four weeks, I visited the surgical team every week to discuss my condition and monitor the tumor. I also met with anesthesiologists, an internist, and underwent additional examinations, including an ultrasound, more CT scans, and X-rays. Then the surgeons explained what the operation would involve. *”You need to be prepared for a procedure lasting between six and eight hours. We’ll have to remove a significant portion of your hard palate. It will be a deep resection – we need to remove everything down to the sinuses. We’ll reconstruct the resulting cavity using tissue taken from your leg.* *We’ll rebuild your palate as well as we possibly can, but there will be consequences. Your voice will change, and there’s a chance you’ll have difficulty eating because food and liquids may pass into your nasal cavity.* *We’ll most likely have to remove most of the teeth on the right side of your upper jaw—probably five or six of them. We’ll do our best to reconstruct that area using bone from your leg, but how much we can rebuild depends entirely on how far the tumor has spread.* *As a result, the shape and contour of your face may change.* *You’ll probably stay in the hospital for eight to ten days. After surgery, you’ll spend at least one day in the ICU (Intensive Care Unit), and you may need a tracheostomy. You’ll also be fed through a stomach tube for at least seven days.”* Another doctor, this time from the reconstructive surgery team, added something I have never forgotten. *”You need to understand that what we’re about to do represents the very best modern medicine can offer. This is the absolute maximum we can do for you. We can’t guarantee anything.”* Those weren’t words anyone could simply accept without fear. I began imagining what I might look like after the surgery – assuming of course I survived it. And I didn’t like those images at all. What do you mean I might lose my teeth? What does it mean that my voice will change? That speaking and eating could become difficult? Was I really supposed to live the next forty years like that? Surely there had to be some mistake. And on top of everything else, I might end up with a breathing tube in my neck? The price was beginning to feel incredibly high. But then another thought crossed my mind. This was the price of staying alive. How much is my life worth? The only problem was that I didn’t have a choice. I had to pay that price. Because I wasn’t going to get another life. At moments like that, fear comes naturally. You simply don’t know what lies ahead, and everyone is afraid of the unknown. But you can’t allow fear to take control. The moment fear becomes stronger than you is a terrible place to be. Remaining trapped in that state slowly destroys a person from the inside.
This is also the moment when I’d like to mention the people who helped me overcome that fear. Of course, my family was there for me. But it was an incredibly difficult time for them as well, and I’m sure they were every bit as frightened as I was. Then there were my friends. Even today I remember some of the messages they sent me. *”I don’t know how I can help, but if there’s anything at all I can do, I’m here for you.”* *”I’ve arranged a Holy Mass to be offered for you. We’ll all be praying for you on Saturday.”* *”Don’t give up. We’re praying for you.”* *”Always stay positive. And if you ever lose hope, let me know. I’ll remind you that you can get through this.”* *”You’re in my thoughts, and I have no doubt that you’ll overcome this.”* Those may seem like ordinary messages. Nothing extraordinary. But they meant far more than the words themselves. They reminded me that I wasn’t facing all of this alone.
I am a Catholic, and one of the most important moments during that time was receiving the Anointing of the Sick. Praying wasn’t easy. It was difficult even to focus. I never blamed God for what had happened to me, but I also couldn’t simply trust that everything would somehow be all right—that everything already was all right—and that I would make it through. I had never turned away from Him. I had always tried to stay close to Him, and I believed He remained close to me. But everything had happened so suddenly. It was simply too much to carry all at once. I needed time to make sense of it all. Although I continued to pray faithfully and believed that God would help me, it was also one of the most spiritually demanding periods of my life.

But that’s a story for another time.

Chapter 3 - Before the surgery

At the beginning of July 2021, there was only one thing left to do – prepare for surgery. By then, I knew almost everything there was to know about what lay ahead, and the doctors knew just about everything there was to know about me. I had gone through lengthy pre-operative consultations with the surgeons, anesthesiologists, and an internist. Every test had already been completed. The doctors reviewed my blood work and all of my imaging scans. Thankfully, everything came back normal. Everything except the tumor on the palate in my mouth. This is a moment for a small anecdote. After seeing all the specialists, I had one final appointment with the surgical team before being admitted to the hospital. I was seen by one of the surgeons who had been involved in my case from the beginning – a relatively young doctor, probably in her early thirties. Looking back, I was actually very fortunate. Many of the specialists who treated me were young, around thirty to thirty-five years old. Our conversation went something like this. *”So, have you been everywhere you needed to go?”* she asked. *”Yes. All the tests are done, and here are the reports from all the doctors,”* I replied, handing her a small stack of papers. *”And what did they say? Everything looks good? We’re cleared for surgery?”* *”Everything is fine. There are no contraindications for the operation.”* *”Well, of course everything is fine – you’re young, you’re healthy…”* She suddenly paused and looked at me with a slightly embarrassed expression. It was obvious she had just realized that calling me “healthy” wasn’t exactly accurate. *”…apart from the reason you came to see us, of course.”* She smiled at me uncertainly. I smiled back and said, *”Exactly! Other than that, I feel perfectly healthy myself.”* She laughed. So did I. Oddly enough, that’s one of my favorite memories from the weeks before the operation. It’s also a reminder that doctors can be incredibly human – kind, compassionate, and genuinely caring. Looking back, I’m deeply grateful that so many of the people I met along the way were exactly like that.
Eventually, the day came when I was supposed to be admitted to the surgical ward. I arrived at the hospital early in the morning. I had already gone through almost the entire admission process when the doctor received a message saying that I couldn’t be admitted after all. The reason? There wasn’t enough blood. My blood type is A negative, which is relatively rare. Unfortunately, the hospital didn’t have enough of it available, and they couldn’t obtain more quickly from nearby blood banks. Their standard practice was to operate the day after admission, and there simply wasn’t enough time to secure the blood that might be needed during surgery. As a result, my admission was postponed by a week. That gave me one more week to think about everything that was about to happen. Honestly, it was probably better not to think. Every possible scenario my imagination came up with only led to fear. It was much better to spend that time with my family. The doctors had told me I would probably be in the hospital for around ten days, so I was grateful for every extra moment I could spend with the people closest to me.
The second attempt at admission went as planned. This time, my mom and my brother came with me. After changing into my hospital pajamas, I was given a few minutes to say goodbye. Looking back, I think that was one of the most emotional moments of the entire experience. I third to hold my tras back and I know they did the same. None of us had any idea what was about to happen. Then again, perhaps not knowing was, in some strange way, a blessing. A nurse took me to the ward. When I entered my room, there was already one patient there – my roommate, although only for one day. He was due to be discharged the following morning after spending three months in the hospital. He had undergone several operations and, as a result, had lost his tongue. He could barely speak. Even so, we managed to have a conversation, using pen and paper whenever words weren’t enough. He was almost seventy years old, and the thing he looked forward to most was finally going home to his wife and grandchildren. Remember, this was during the COVID-19 pandemic. Hospital visits were strictly prohibited, especially in departments like ours. Imagine not seeing your family for three months. Even phone calls were almost impossible. I’m truly grateful that I had the chance to spend even a short time talking with him.
Later that day, I still had to prepare for surgery. Since I was going to receive a tissue transplant, the surgeons planned to reconstruct the part of my palate they removed using tissue from my leg. That meant I had to shave both of my legs. The doctors also wanted to insert a central venous catheter before the operation. It’s not exactly a pleasant procedure. The needle is fairly large, and it has to be inserted deep beneath the skin, just below the right collarbone. It’s challenging for the patient. And it’s challenging for the doctor as well. Sometimes it simply doesn’t work. As you might have guessed, it didn’t work in my case. After placing the catheter, they routinely performed an X-ray to make sure everything was positioned correctly. It wasn’t. The catheter had to be removed, and the doctors decided they would place another central line in my groin once I was already on the operating table. After that, there was nothing left to do except eat my last meal and wait for the evening so I could try to get some sleep.
The next morning, I was woken up early. I washed, shaved, and put on the surgical gown the nurse had brought me. Then they gave me a sedative – in Poland it is a pill that calms your nerve, and I waited on my bed to be taken to the operating theatre. Was I nervous? Surprisingly, I don’t think I was. And I don’t believe it was because of the medication. The fear had come much earlier. By then, I had already faced it. I had learned to live with it. When the nurses arrived to take me to the operating room, my roommate looked at me and said, *”Good luck.”* Yes… The man who could barely speak managed to say those two words to me. Finally, I arrived at the operating suite. I had to wait there for a short while. A nurse came over to insert two IV lines. The first attempt failed. She looked at me apologetically and said, *”Something didn’t go right. I’ll have to try again.”* I laughed. *”Don’t worry. I seem to do everything twice these days.”* She laughed too. Then she wished me all the best and told me to keep looking at everything the way I was looking at it right then—with optimism. A few moments later, I was wheeled into the operating room. That was the first moment I truly felt uneasy. This was it. Something enormous was about to happen. Something that would change my life forever. What condition would I wake up in? What would happen afterward? Would I still be able to speak? Would I survive? The anesthesiologist placed a mask over my face and said, *”I’d like you to count backwards from ten.”*

*”Ten… nine… eight… seven… six… five…”*

Chapter 4 - That one f***ing night

*”Wiktor, can you hear me? Wiktor, it’s time to wake up. It’s all over now. Your palate has been reconstructed.”* I heard the words. But I couldn’t open my eyes. For a while, I had no idea what was happening around me. My mind simply wasn’t working. The words blended together into meaningless sounds, and opening my eyes—let alone looking around—felt almost impossible. Eventually, I managed to focus on the anesthesiologist standing to the left of my bed. *”The surgery is over. Everything went well. We’ve left a breathing tube through your nose as a precaution, just in case your airway swells.”* Almost instinctively, my right hand reached toward my neck. Even that tiny movement demanded more strength than my body had left. The moment my fingers touched my neck, every bit of energy drained away. *”You don’t have a tracheostomy,”* she reassured me. *”There was no need for one.”* Then she smiled gently. *”Now tell me your full name.”* *”Wiktor Mryka.”* The moment I heard my own voice, I froze. What… was that? That didn’t sound like me. It wasn’t my voice. On top of that, every word felt like an enormous effort. My lips, my mouth, my throat—nothing seemed to work anymore. Then the doctor said, *”Try swallowing your saliva.”* I couldn’t. Or rather, the swallowing reflex was still there—which, I imagine, was exactly what they wanted to check—but most of the saliva simply stayed in my mouth. *”You’ll have trouble swallowing for now. You have two tubes going through your throat—a feeding tube and the breathing tube. We’ll remove the breathing tube tomorrow. The feeding tube will stay for about a week.”* By then, her words were already beginning to fade. I only had enough energy for those few minutes. My eyes kept closing on their own. *”The operation lasted eight hours. Get some rest now. You’ll stay in the ICU until tomorrow morning, and then we’ll transfer you back to the ward.”* And I drifted away again. I woke up several times during the night. Once because I threw up. Once because a thunderstorm broke out. A tremendous clap of thunder pulled me back to reality for a brief moment. It must have been an incredible storm if I could hear it so clearly even from inside the intensive care unit. Another time because the monitors never stopped beeping, buzzing, and sounding alarms. One of the patients had some sort of emergency, and suddenly the entire room came alive with unfamiliar warning tones. Then, just before dawn, I woke up again when two nurses came to wash me. I can’t even describe how humiliating that felt. When you’re so weak that you can’t do absolutely anything for yourself… when two people have to wash you, lift you, and turn you over because you simply don’t have the strength… No matter how hard I tried to help them, I was barely able to contribute. That was also when I realized I was covered in saliva, blood, and sweat. It felt awful. I had never felt so helpless. Or so embarrassed. At that moment, I honestly thought nothing worse could possibly happen. I was soooo wrong. I should also say this. The nurses were incredibly kind, patient, compassionate. They never once made me feel uncomfortable or ashamed. That might not sound like much, but at the time it meant everything. For the next several hours, I simply lay there listening to the rhythmic beeping of the machines. There were, I think, eight patients in the ICU. Those sounds came from every direction. I know that during those hours I wasn’t really thinking. I couldn’t. My mind simply wasn’t capable of it. I stared blankly at the ceiling. Or at the wall. The only thing I prayed for was that no one in that room would go into cardiac arrest. That nothing would happen to any of the other patients. Eventually, one of the doctors came over and told me he was going to remove the breathing tube from my nose. *”You don’t need the extra oxygen anymore,”* he said. *”You’ll feel much more comfortable without it.”* What I didn’t know was that removing the tube simply meant pulling it out. I could feel every inch of it. It slid up through my throat… through my entire nasal passage… until it finally came out. The whole thing only lasted a few seconds. For me, it felt like forever. All I could think about was trying not to gag. Some time later, the nurses transferred me back to the surgical ward. Ever since the operation, I had remained in bed the entire time, so I was wheeled back exactly the same way. The very first thing I did after arriving in my room… was vomit. Everything that was still left inside me came back up. The doctors and nurses described it as bloody secretions and assured me it was a good thing that I had managed to clear them. They were right. At least medically. Unfortunately, I didn’t feel any better. Once everything had settled down and the doctor was satisfied that nothing else was going to happen, he told me to get some rest. *”You won’t be eating until tomorrow,”* he said. Eating. That word had a completely different meaning now. For the foreseeable future, every meal would be delivered directly into my stomach through a feeding tube. They adjusted my bed into a semi-upright position. Partly because it was more comfortable. Partly because I had spent more than twenty-four hours lying flat, and my body desperately needed a different position. Then everyone left. My previous roommate had already gone home. The next patient wasn’t expected until the following day. For the first time since the operation… I was completely alone. The only thing I managed to do before putting my phone away was send a short message to my parents. *”I’m back on the ward.* *I’m alive.”* It was sometime around three o’clock in the afternoon. Later that evening, one of the nurses came in with my medications and injections. There seemed to be countless of them every single day. Shots in my abdomen. Another in my arm. Medication through the central line. And two IV drips—one for pain relief and one with antibiotics. Those few minutes were the only human interaction I had that entire evening. Apart from that… I was alone. Just me. And my own thoughts. That was when the longest night of my life began. It didn’t take long to realize that I couldn’t lie down. Every time I tried, I could feel the feeding tube in my throat, while bloody discharge or mucus from my nose ran straight down into it. My sinuses were completely blocked, and although it wasn’t pleasant, it was much better when the blood and mucus drained out through my nose instead of flowing backward. I also began to *feel* my new palate. It bothered me constantly. A transplant is something completely foreign. Something your brain doesn’t yet recognize as part of your own body. Mine certainly didn’t. It quickly became clear that there wasn’t a comfortable position anywhere in that bed. Lying down was impossible. Sitting wasn’t much better. I tried to sleep. I really did. But for the first time since the operation, my mind was no longer clouded by medication. I could think again. And that turned out to be the worst part. I tried speaking out loud. Just a few words. My voice sounded awful. Every single word exhausted me. Blood dripped from my nose. Saliva kept running from my mouth. That was when it truly hit me. I was drooling. Because, damn it… I couldn’t swallow my own saliva. **WHAT HAD THEY DONE TO ME?** I couldn’t open my mouth properly. I couldn’t swallow my own saliva. My voice sounded terrible. Every word was exhausting. There was a tube in my nose. A surgical drain in my leg. A urinary catheter. This was ridiculous. I was twenty-three years old. Twenty-three. At that age, I should have been traveling the world. Finishing university. Looking for my first real job. Earning money. Living life to the fullest. Instead… I was lying in a hospital bed, barely alive. Blood was dripping from my nose. Saliva from my mouth. I couldn’t sleep. My head hurt. My leg hurt. My back hurt. Even sitting had become painful. What kind of life was this? What was the point of suffering like this? What would any of this achieve? What would any of this bring me? What was my future supposed to look like? Because if this… if *this* was my future… I didn’t want it. At that moment, it felt as though I had already been excluded from normal life. How do you start a conversation with someone when you can barely speak? How do you walk up to a girl and compliment her when every single word has to be forced out, one syllable at a time? Was that it? Would my life now be limited to social isolation… and a handful of friends who, hopefully, wouldn’t walk away? I couldn’t live like that. Would I ever be able to do anything again? Would I ever run? Play football? Do sports? That night… I couldn’t see my future. I couldn’t see anything beyond that hospital room. None of it made any sense anymore. I wanted to believe it was all just a nightmare. A horrible dream that I would eventually wake up from. I had to. Because a life like this couldn’t possibly be real. Was I supposed to suffer for the rest of my life? How much more would I have to endure? How long would things stay this difficult? Tears streamed down my face. For as long as they could. Eventually… there weren’t any tears left. By morning, I was covered in saliva. My face was stained with tears. There was dried blood around my nose. Altogether, I think I slept for no more than forty-five minutes that entire night. I didn’t want morning to come. I wasn’t waiting for a new day. I already knew it wouldn’t change anything. It would only bring another day of pain. Another day of struggling. And for what? Then the door opened. A nurse walked into the room with a warm smile on her face.

*”Good morning! Time to wash up and start a brand-new day.”*

At the bottom you can find two pictures – one of me before the surgery and the second is the day after the surgery.

Chapter 5 - 1st day of indepencendce

Around six o’clock in the morning, a nurse walked into my room and cheerfully announced, *”Good morning! Time to start a brand-new day!”* A new day? I could barely stay alive. Only a few hours earlier, I had been lying awake wondering why I hadn’t simply left this world behind – and whether, in some ways, that might actually have been easier. This wasn’t a *good* morning. It was just another day when I wouldn’t be able to stand myself. The nurse, however, was completely unfazed. She was full of energy. She handed me a basin of soapy water and a sponge, then rolled my bed closer to the sink. I still wasn’t allowed to get out of bed. I’d spent nearly two full days in it by then, and everything hurt. Literally everything. *”Wash yourself nicely,”* she said. *”The doctors will be here for rounds in a little while, and then you’ll have breakfast. We’ll show you how to use that tube in your nose.”* And with that, she left. I stared at the basin, the sponge, the soap, and the sink, wondering how exactly I was supposed to wash myself while sitting in bed. Somehow, I managed. I washed my face, my hair, and as much of my upper body as I could. And, surprisingly, I didn’t soak the bed. That counted as my first success of the day. Shortly after seven, the doctors came in for morning rounds. The head of the department was with them, along with several other surgeons. He turned out to be an incredibly kind man. He examined me carefully, asked how I was feeling, and even offered a few words about the future. *”You’ll see – it’ll all happen before you know it. In a week we’ll remove the feeding tube. After that, you’ll spend a little time on a liquid diet, you’ll learn how to chew again, and eventually you’ll be eating everything.”* *”What about my voice?”* I asked. *”Unfortunately, there isn’t much we can do about that. A speech therapist will work with you. She’ll teach you exercises to strengthen your speech muscles and help you make the best possible recovery.”* He was very pleased with the outcome of the operation. He said the reconstruction had gone exceptionally well. Apparently, my palate looked exactly as they had hoped. Too bad it felt nothing like that to me. Everything inside my mouth irritated me. Everything felt foreign. I couldn’t swallow. I couldn’t speak. So how could anyone say everything had gone well? His words gave me hope, of course. But at that moment, my own experience told a completely different story. The doctors left, and for a brief moment the room became quiet. Not for long. A few minutes later, a nurse came in with the physiotherapist. The first thing he told me was, *”Let’s get you standing.”* After spending two days in bed, even that became a process. First I had to sit up. Then lower my legs over the edge of the bed. Finally, he handed me a walker and helped me to my feet. Then he asked me to walk down the corridor. With a walker. A urinary catheter. And all the other tubes still coming out of my body. There I was. Twenty-three years old, walking through the hospital with a walker, one step at a time. And every single step cost me a lot. Thankfully, I managed the short distance much faster than anyone expected. The physiotherapist smiled and said I probably wouldn’t need the walker again, although I should still take it easy and avoid walking too much. In fact, I should have been out of bed the previous day, right after returning from the intensive care unit. But because of the vomiting – and because I hadn’t eaten anything – the doctors had decided to keep me in bed a little longer and wait until the next morning before getting me back on my feet. Being able to walk also meant I no longer needed the urinary catheter. After all, I was now expected to make it to the bathroom on my own. The nurse came in to remove it. Another one of those moments when embarrassment completely takes over. Before leaving, she smiled and said, *”You should be able to urinate within the next two hours. If you have any trouble, I’ll help you.”* I had absolutely no desire to find out what that help might involve. So I made sure I managed on my own before those two hours were up. Little by little… I was becoming more independent again. Around the same time, breakfast was served. Mine consisted of two bowls of soup and a syringe. The nurse gave me a quick lesson on how to feed myself through the tube as efficiently as possible. It sounded simple enough. Until I actually had to do it myself. By the time I was finishing the first bowl, I managed to spill soup all over myself. Wonderful! Fortunately, it wasn’t too much, and I had a spare pair of shorts, so the damage was minimal. With a feeding tube – and a brand-new palate – you experience thirst very differently. I had to remember to flush water through the tube regularly to stay hydrated. Around ten o’clock, the speech therapist came to see me. From that day on, she visited me every single day. As far as I could tell, she stopped by to see every patient on the ward, even if only for a few minutes. She gave me a list of simple exercises. Although she admitted that rehabilitating a reconstructed hard palate wasn’t easy. *”Your voice probably won’t return to what it used to be,”* she said honestly. *”But we can definitely work on eating and swallowing.”* Well… Out of all the problems I was facing, even that was a little ray of hope. Another wonderful thing about those sessions was that we simply talked. Since speaking itself was part of the rehabilitation, we’d sit there chatting for ten or fifteen minutes every day. It became one of the nicest parts of my routine. Another daily ritual was my visit to the treatment room. That’s where the bandages were changed, the wounds cleaned, and everything was checked to make sure it was healing properly. One wound was on my leg. That wasn’t too much of a problem. The other one was inside my mouth. Combined with the fact that I could barely move my jaw, it made every dressing change difficult – for both me and the nurse. There was no way I could keep my mouth properly clean by myself. Brushing my teeth was difficult enough. So those visits were absolutely essential. In the end, the nurse and I developed a really good cooperation. That made everything much easier for both of us. The rest of the day passed quietly. I rested, read a book, watched a few TV shows. Slowly, I could feel my strength returning. That evening, after dinner, I asked the nurse if I could take a shower. A proper shower. Just stand under warm water and let it run over me. She agreed. The wound on my leg was well protected. I simply had to be careful with the dressing—and with myself. And you know what? After that shower… something changed. For the first time since the operation, I felt that I could actually get through this. That it was possible. That I was going to make it. I still don’t know exactly why. But when I looked at myself in the mirror afterward, I saw someone who wasn’t going to give up. The day had been difficult. I had been forced to adapt to countless new things. But that evening, I finally believed I could do it. One step at a time. I’d get through all of this. If I could manage in the hospital, then I’d manage once I got home as well. What I didn’t know then was that many difficult moments still lay ahead. And perhaps that was for the best. Because I still had hope. And hope kept me moving forward.

That night, I went to sleep believing that tomorrow might just be another good day.

Chapter 6 - Hospital monotony

The next day – and, in fact, almost every day after that – was rather monotonous. You could say they were all practically the same. There was one routine: everything happened before noon, and after that you were left to take care of yourself until the evening. The nurses would wake the patients around 5:30 a.m., sometimes closer to 6:00, to change the bed linens. While they were doing that, I used the opportunity to freshen up, shave, and wash. Around 7:00 a.m., the doctors began their morning rounds. They carefully checked how every patient was doing and whether everything was progressing as it should. You have to remember that everyone on that ward had either undergone some kind of reconstructive surgery, had severe wounds or organs removed, or was simply in very serious condition. The head of the department was an extraordinary doctor. Seriously. He always came in with a smile, a kind word, and a bit of small talk about absolutely anything – favorite books, movies, travel, sports. He always devoted at least a minute to talking about something other than illness. At the time, I was reading a book about Richard Feynman, and it turned out that he not only knew the book but was also familiar with Feynman himself. We ended up talking about him and about science for a while. I had the impression there wasn’t a subject he didn’t know something about. After the doctors’ rounds came breakfast. For me, breakfast meant two bowls of soup, delivered directly into my stomach through the feeding tube. Then came two IV drips and another handful of medications. After breakfast, the speech therapist would visit me. We worked on exercises to gradually restore the mobility of my speech muscles, practiced speaking, and later also swallowing. But she also came simply to talk. In my case, conversation itself was part of speech therapy. We talked about everything imaginable – my interests, my passions, my past, my achievements, and, most importantly, my plans for the future. Because the future was coming. And I had to be ready for it. We agreed on one thing: *”Dreams don’t come true on their own – you make them come true. Nothing happens by itself. If you want your plans to become reality, you have to act.”* It sounds like one of those clichés everyone already knows, something so obvious that it hardly seems worth saying. But in moments like these, when everything feels as if it’s falling apart, when the future seems impossibly far away, even the most obvious truths have to be repeated. After the speech therapist left, it was time to visit the treatment room. It was one of the less pleasant parts of the day. The nurse had to clean my reconstructed palate and disinfect my wounds. The palate was by far the worst part. But there wasn’t much either of us could do about it. She always smiled and said that we didn’t really have a choice, and I would smile back and tell her that torture was simply part of her job. Every visit also ended with what I called „restocking.” I don’t think I’ve fully explained what it was like not being able to swallow. Your body produces saliva constantly, and under normal circumstances you never even notice it. But when swallowing isn’t possible, you quickly discover just how much saliva accumulates in your mouth. On top of that, whenever I tried to speak, some of it inevitably ran out. I always needed sterile gauze pads and sheets of medical tissue (based on cellulose) so I could wipe my mouth and take at least a little care of myself. For several days, there was also discharge coming from my nose – a mixture of blood and saliva that somehow found its way there. I constantly needed something close by to wipe my face. So every time I left the treatment room, I was carrying a pack – or sometimes several packs – of gauze and a handful of medical tissue. It looked a bit like paper towels, except it wasn’t rolled up. By around 11:30 a.m., all of these daily routines were over. Then I had the rest of the day free. Far too much free time. From noon until evening, only three things remained on my schedule: lunch, dinner, and my evening medications. Apart from those – and the occasional IV drip during the day – nothing was happening. And let’s be honest… you have to find something to do with that much time. So I read books. I watched movies and TV series. I walked up and down the hospital corridor – because I wasn’t allowed to leave the ward at all. I talked to other patients. Even then, I still had endless hours left to think about my future. Thankfully, the Olympic Games were taking place at the time. At least every now and then I could feel emotions connected to something other than another syringe piercing my stomach or my arm. There is probably nothing worse than complete idleness. I tried to keep myself occupied in whatever ways I could, although there wasn’t much I was actually able to do. I’ll tell you another time about the day I ended up completely alone in my hospital room. For now, let me just say this: being alone for too long can slowly drive a person insane. That’s why it’s so important to learn how to live with yourself, to take care of your mind and your mental health. Because of the pandemic, visitors weren’t allowed at all. The only contact I had with my family was over the phone. We texted each other or talked over video calls. Every conversation was difficult because there was nothing either side could really do to make the situation easier. Most of our conversations revolved around what I needed and what they could bring me. My parents were allowed to leave a package for me at the hospital reception, and one of the orderlies would deliver it to the ward. It was hard. But I had known it would be. After eight days, one of the doctors told me it was finally time to go home. It was Thursday morning, and he informed me that I would be discharged on Friday. That Thursday evening, during the nurse’s routine medication round, she checked my reconstructed palate as she always did. She suddenly left the room. A moment later, she returned with the doctor on duty. I saw fear in her eyes.

*”Doctor… I think we may have a problem here.”*

Chapter 7 - On a leash

What do you mean, a problem??? What’s going on?!” The doctor looked inside my mouth. He checked everything carefully and asked the nurse for a needle. “I need to prick the transplant flap (the reconstructed palate) to see if any blood comes out. It won’t hurt because there’s no sensation (the nervous system does not respond yet) in this area yet,” he told me. He pricked it and watched. The tension was reaching its peak. Just that morning, everything had been going perfectly, and I was supposed to be getting ready to leave the hospital the next morning. And now I already knew that wasn’t going to happen. What I didn’t know was what was waiting for me and what all of this was going to mean. The doctor didn’t really tell me anything. He simply turned to the nurse, and I heard that the blood was coming out very slowly and that I needed to be given heparin. Heparin is a medication used to thin the blood and improve its flow, but the dose and rate at which it is administered have to be carefully adjusted, and its effects have to be monitored regularly. Within a few minutes, I was connected to a machine that would administer the heparin. Professionally speaking, it was a syringe infusion pump. You put a syringe filled with medication into the machine, set the flow rate, and connect it to an IV line. The machine then delivers the same dose of medication continuously, hour after hour. And yes, I was given heparin for almost 40 hours. That’s right. I spent 40 hours continuously connected to a syringe. Every few hours, I also had a blood test. You know, the standard kind – the one where they stick a needle into your vein and draw a vial of blood. I had these tests twice during the night and then every four to five hours for the entire time I was receiving heparin. At night, I kept waking up because I had to sleep in an uncomfortable position, I had blood tests, and every time anything blocked the flow of the medication, the machine started beeping. Of course, most often it was my own hand blocking the flow. But at night, even the slightest involuntary movement of that hand could slow down or completely block the medication. I managed to sleep for maybe two or three hours in total that night. In the morning, the doctors were not happy during their rounds. It was Friday. I was basically ready to go home, and instead there was something worrying happening with the transplant. For one thing, the doctors had already been planning to discharge me. On Thursday evening, they had removed my feeding tube, and I was supposed to start learning how to eat. I had already been practicing with water and everything had been going well. And secondly, there were probably already other patients waiting for my bed. The doctor said: “This really doesn’t happen very often—having problems at such a late stage. This is already the eighth day after the operation, and transplant failures most commonly happen on the second or third day after surgery. We’re not talking about a transplant failure yet. We’re giving you heparin and we’re fighting to save it.” Well, by that point I had already gotten used to unusual things happening to me. We’re fighting… Except that my own “fight” consisted of eating breakfast. With a teaspoon. It took me about an hour and a half to eat that little bowl of soup. That was my great “fight.” I couldn’t fight on my own. All I could do was hope that the doctors would somehow fix the situation, that the medication would work, or that the blood supply to the transplant would somehow be restored. But in all of this, I was completely powerless. Once again, the disease was making decisions for me. I couldn’t decide anything. Apart from that, I had a fairly standard day – dressings on my wounds were changed, I had IV drips, and I did exercises with the speech therapist. And I was still connected to that syringe the entire time. At that point, every meal took me at least an hour, and I had to eat with a teaspoon, literally a few drops at a time. Learning how to eat was tedious, and the results might not have mattered anyway, so I wasn’t even trying particularly hard. Honestly, I spent the entire day not knowing what to do with myself or what might happen next. I knew that if the transplant didn’t start working, I would have to undergo another operation. The problem was, I didn’t really have any hope that it would suddenly “start working.” The moment I heard that “there was a problem,” I already understood the consequences. There is no easy way through a fight against disease. Every path, every step is difficult, and every one of them requires an enormous amount of patience and strength. The blood tests every few hours showed that I was tolerating the heparin well. But what did that matter? My palate hadn’t “woken up” by the morning. In the morning, the doctor came in – one of my favorites – very straightforward, very direct, the kind of doctor who didn’t sugarcoat anything.

“We need to operate again. I’ll put you on the surgery list.”

Chapter 8 - Without the palate...

What??? Another surgery? That’s impossible… Everything had been going so well. I was supposed to be going home… “But what happened?” I asked. “It’s hard to say, but the flap is no longer viable. It’s starting to separate at the back, it’s turning blue, and there’s no blood flow. I think it was already too late with the heparin anyway,” the doctor replied. “And when will I have the surgery?” “I don’t know that yet. I’ll put you on the list, but the earliest it could be is Wednesday or Thursday. I’ll let you know.” And he left. Somehow, deep down, I knew that with my luck, the surgery would definitely be on Thursday. That meant that the next five days in the hospital would basically have no meaning whatsoever, because they would simply be spent waiting for the surgery. Great… I had almost made it home. I was already happy that I would soon be back there. But no, apparently things couldn’t be that easy. My body had decided to test my mental strength. Because how on earth do you explain the fact that my body was rejecting a transplant that came from MY OWN LEG, from MY OWN BODY? What could possibly be more compatible with my body than a piece of my own body??? Something was clearly working against me. And on top of that, I now had an injured leg for no reason, because that piece of it was supposed to become my new palate, and now – well, apparently we could just throw it away. After the doctors left, I called home. The news about the second surgery hit my mum especially hard, but the rest of my family was shaken too. I couldn’t talk for very long, but we stayed in touch quite frequently that day, either by texting or calling each other. The prospect of the surgery not happening until Thursday wasn’t exactly pleasant for them either. After all, they were also living with a lot of uncertainty, while at the same time being unable to visit me. The roommate I had shared the hospital room with had started being able to speak the day before. He had a tracheostomy and hadn’t been able to speak at all for several days, but now his voice was slowly coming back. He also tried to cheer me up during that time. “I’ve been lying here all week, and all I’ve been hearing is that everything is going well with you, that everything is healing nicely and that you’re making progress. And then today, this happens… But don’t worry. I’m sure it’ll work this time, and you’ll end up with an even better result than before.” I hoped so too, although that hope was pretty badly dimmed. And the next two days in the hospital dragged on unbearably slowly. I think I watched about two seasons of a TV series. I even read a book, and somehow I was still unbelievably bored. On top of that, problems started appearing. The dying transplant flap was “detaching” from my palate. This mainly meant problems with eating and drinking, because food and liquids were getting into my nose and leaking out. By Sunday, dinner had already become very difficult to eat. That, combined with the fact that the dying transplant could potentially cause inflammation in the surrounding tissues, led the doctors to take some rather drastic steps on Monday. They asked me to come into the treatment room and then told me they were going to remove the flap and insert a feeding tube. Wait a second—remove it? Just like that? What about anesthesia? Any precautions? What if it started bleeding??? What exactly were you planning to do to me? “Don’t worry. The flap is already dead, so there’s no nerve supply in it anymore. We’ll cut the stitches and the flap will come off. Then we’ll remove it and carefully make sure everything in your mouth is secured. After that, we’ll insert the tube. This way, everything will have some time to heal before the reconstructive surgery on Thursday.” They didn’t exactly reassure me, but there wasn’t much else I could do except trust them. So I put myself in their hands. They told me to open my mouth, and the doctors got to work. And sure enough, cutting the stitches itself was completely painless. But I was absolutely terrified when the doctor told the nurse to hold the scalpel over a flame. “Just in case there’s heavy bleeding.” Oh, of course! Go ahead, burn me! As if a tiny mistake wasn’t enough to mean cutting into my palate – or, well, whatever was left of it – and now they also wanted to treat me with a piece of red-hot metal? Fortunately, the whole “operation” lasted only a few minutes and ended completely painlessly. Afterwards, I was actually full of admiration for that doctor. He wasn’t afraid to make a difficult decision, and he carried out the entire procedure efficiently and carefully. It was quite an interesting experience. But things got really interesting afterwards. It was Monday, and the surgery was supposed to take place on Thursday. That meant I was going to spend the next three days without a palate. And it turned out to be a perfect opportunity for the doctors, the nurses, and me to see what was actually in there – or, more precisely, to see how you can look into your nose through your mouth… Pretty much everyone who had the chance took advantage of the opportunity. I was clearly something of a curiosity on the ward at that point.

But oh well, apparently, being the star of the ward was another role I was destined to play for a little while 😉

Chapter 9 - What with the future?

You would think that waiting for something you’ve already been through once should be somewhat easier. After all, I knew what was waiting for me. If it had been something good, I would probably have been looking forward to it with excitement. Here, I knew that I was about to go through several more difficult days, full of pain, exhaustion, and discomfort. Come to think of it, I probably should have been afraid of another surgery. After all, I had already been through it once. On the other hand, one surgery had already failed, so there was no guarantee that the next one would be successful either. But somehow, I wasn’t afraid. I pretty quickly decided that we are only afraid of what we don’t know, and I already knew everything. So, really, it would be fine. It had to be! Because what other option was there? Different scenarios kept running through my head, and they weren’t always particularly pleasant. Apparently, there is such a thing as living without a palate. A person can supposedly function normally, while feeding can be done either through a tube directly into the stomach or with a special insert placed in the mouth while eating, so that food doesn’t get into the nose. I decided there was absolutely no way I was going to live without a palate. Eating was only one of the problems anyway – what about speaking? Without a palate, conversations were more like my loud attempts at blowing my nose. There was no way to direct air into my mouth – it would always escape through my nose. Even now (spoiler – I have a palate), some of the air escapes through my nose, and there isn’t really much that can be done about it. So the surgery had to work. That was my final conclusion. The only question was: what was I supposed to do with all the time until the surgery? The thing that bothered me the most was boredom. Yes. I was simply incredibly bored. I was given various medications, the doctors came in every morning, the speech therapist came to see me, and my dressings were changed. But even with all of that, most of the day was completely empty.The time between lunch and dinner was enough to literally fall asleep from boredom.Okay, I read books. I watched TV series. I think I even watched a few movies. None of it helped.You know it’s bad when you can watch two entire seasons of a TV series in one day and still have some time left over.I tried talking to the other patients. We didn’t do it very often, because those conversations sounded more like a deer rut.After all, we all had damaged speech apparatuses… Everyone’s voice was distorted in one way or another. Someone had no teeth, someone had part of their jaw removed, someone had limited jaw mobility, swelling, no tongue, or something similar. It was difficult to talk. But we tried anyway, just to do something with that time. There was no chance of going outside anyway, because the ward was closed. And there was one more thing – the other patients were all at least 30 years older than me. Most of them were around 70, which meant that there could be as much as a 50-year age gap between us. Each of us experienced the disease in a completely different way… The vast majority of these patients had, in a way, come to terms with their fate. They would say that everyone has to die of something eventually, and that this disease was as good as any other. They often pointed out that, really, they had already lived through everything they were supposed to live through. Sometimes one or another of them would mention their grandchildren, saying that it would be nice to see them grow up a little more. You might have thought that maybe, sometimes, they actually wanted to die. And yet, somewhere deep inside, there was still a little spark keeping their hope for life alive. Somewhere inside, they still wanted to fight. And sometimes all it took was a little conversation for them to remind themselves of that. I often heard them say that maybe they could keep going for a few more years, that maybe something good was still waiting for them. At that point, I didn’t know what to do. For me, life had always seemed almost obvious. I was still young, after all. I hadn’t achieved anything in life yet, and in reality, I hadn’t really experienced much either. I couldn’t exactly tell myself, “Well, I’ll get through the disease somehow, hang on for a few more years, and maybe I’ll even go on another trip.” No. I wanted a clear plan. Finish university, find a job (or continue developing academically), and live life to the fullest. It would also be nice to start a family. But should I? I could get sick again myself (I wasn’t even fully recovered yet!), and cause a great deal of trouble for everyone around me. And on top of that, although there isn’t much strong scientific evidence for it, my genes could potentially cause problems for my future children. The future didn’t look particularly bright. Actually, nothing looked particularly bright. I eventually came to the conclusion that I had to take everything one step at a time, and the first thing was to finish university. At that point, I had one year left until graduation, and I was going to start working on my master’s thesis soon. That was a clear goal, and I intended to achieve it. So the surgery had to work, because I had a thesis to defend. Actually, first I had to write it. And before I could write it, I had to conduct the research for it. So there was no time to waste lying around in the hospital. The surgery would be successful, then I’d have a week to recover, and I’d go home. There, I’d continue my rehabilitation and then go back to university to finish my degree. That would be the first, very simple step toward getting my life back.

With exactly that mindset, I woke up on Thursday morning, just before the surgery.

Chapter 10 - Ah shit, here we go again...

I’ve already told this story – well, I mean, I told it when I had my first surgery. Once again, I was lying on a hospital bed with my legs and face shaved, completely washed and disinfected, wearing that little green gown that tied up at the back. Once again, I was given a pill – the little pill that was supposed to reduce my stress. Except there wasn’t really much stress this time. Okay, that’s not entirely true. It wasn’t that there was none at all. The most important thing, however, was that I had finally made it to the surgery, and that eliminated – or perhaps more accurately, reduced – the stress. Yes, exactly. I was actually **waiting for the surgery**, even though I knew exactly what it was going to be like. Living without a palate was horribly exhausting for me, and I just wanted to get through those next eight days after the surgery, finally leave the hospital, and recover at home. At around 7:30, the nurses came to get me. “Alright, we’ll just turn you around nicely here and take you to the operating room. You definitely won’t be leaving this place feet first.” Here’s a little fun fact: at the hospital in Gliwice—and probably in many other hospitals in Poland – a patient is never wheeled (on the bed of course) out feet first. Only the dead leave feet first. I wouldn’t say I was superstitious, and I’m still not, but I didn’t want to tempt fate. Looking back on it now, I laugh about it, but at the time it made me start thinking again – as I had often done over the last few years – about the ultimately unavoidable possibility of death. This time, though, I quickly pushed those thoughts away and told myself: “Not today, and not anytime soon. Let’s do this.” Just like before, an anesthesia nurse was waiting for me outside the operating room. She put in two IV lines and chatted with me for a moment. This time, I didn’t have to wait long at all, and soon I was being wheeled into the operating room. And at this point, I already knew everything. Well, almost everything. I was prepared. The surgeon had come to see me the day before the operation to explain everything. He prepared me very well and went through the entire plan for the procedure in detail. Of course, some things can only be decided once you’re actually on the operating table, but even so, I felt comfortable in this surgeon’s hands. That conversation helped me mentally prepare for the surgery. Thanks to him, I also knew that my new palate would be made from a piece of tissue taken from my right leg, from the thigh area. I also learned what the possible consequences for the functionality of my leg could be. Of course, the doctor assured me that he would always make decisions based on what was in my best interest. And that should be a given – I trust that this is always the case – but hearing him say it was somehow reassuring. Lying on the operating table and watching the team organize everything around me and prepare for the surgery, I kept thinking about that reassurance: that they were doing all of this with me, my health, and my life in mind. The anesthesiologist came over and began preparing me directly for anesthesia. Here’s another little fun fact: the last person you see before you “fall asleep” on the operating table is the anesthesiologist counting down: “10, 9, 8, 7…” And then you wake up in the recovery room. Or, in my case, in the ICU. When I woke up in the ICU, I felt like I had been run over by a bus. Completely powerless. All night, I listened to the sounds of the medical equipment around me. On top of that, I was drooling and had to have these little pads filled with absorbent material changed every few hours. I was also told not to turn over and to keep my head turned to the right on the pillow. I didn’t have the strength to turn over even if I had wanted to, so at least that problem took care of itself. After the second surgery, falling asleep somehow came more easily to me, although, all things considered, I think I had slightly more problems this time around. Morning came fairly quickly. Once again, the nurses washed me – without any help from me. I simply tried not to get in their way. After some time, they took me off the oxygen, and later the anesthesiologist also removed the breathing tube from my nose. After that, I could finally return to the ward. And there, I managed to get the entire ward on its feet almost immediately. As soon as I returned, one of the nurses helped me sit up. That change of position made my insides decide they wanted to come out. Within seconds, I had two nurses, a doctor, and another hospital orderly around me. Very professional service. Now I can talk about it casually and laugh about it. Back then, though, I was **mortified**. I was so embarrassed because it looked like I was about to breathe my last right there, when in reality I had simply thrown up a few times. Nevertheless, I couldn’t eat anything else that day—which was fairly understandable. The nurses, however, presumably after consulting the doctor, decided that there was no point in just lying in bed. So, later that evening, a physiotherapist came with them and got me out of bed and into the corridor. I managed to walk about ten meters with a walker like it was nothing. There was no chance of going any further, but at least I could walk to the bathroom by myself. That was already a huge plus. Oh, and most importantly – the doctors told me that because the veins and the entire blood supply of my new palate had been connected to the main jugular vein, I wasn’t allowed to turn my head to the left for the next three days, and I also wasn’t allowed to make any sudden movements with my head. “For three days, you’re only allowed to turn your head to the right.” Well, that’s great… “And after three days, will it already be healed?” “We hope so. The surgeon will come and see you again to assess it.” It wasn’t exactly optimal, but I could function somehow.

It was only after some time that I started to realize that the thing I now had in my mouth was beginning to annoy me a little…

Chapter 11 - Let's get out of here

By evening, I started feeling the effects of the surgery. Well, technically, I started feeling the effects of my new palate. It was somehow so big, so different, and it was starting to cause problems whenever I tried to speak. I just couldn’t get used to it. It felt as though my mouth was constantly full, and I had this strange feeling that the palate was going to fall down into my throat. A doctor came to check on me and told me that this was a normal sensation. She explained that the palate had deliberately been transplanted slightly larger so that it would properly fill the space left by the tumor. The following day, the surgeon who had operated on me came by as well. He explained that the larger palate provided better coverage, better blood supply, and that during radiotherapy it would shrink as a result of the radiation. So it was better to leave it slightly larger from the beginning. As he put it, you can always reshape it later, and it’s better to have more tissue because that gives you some room to work with. I wanted to tell him that I’d be more than happy never to lie down on an operating table again, but, to be fair, he was right. And what’s more, his explanation really reassured me. As it turned out later, he was absolutely right. That larger palate – with more tissue – was going to come in handy. The hardest part after the surgery was once again the first night on the ward… I couldn’t find a comfortable position to sleep in, and my options were pretty limited. I had to keep my head turned to the right, which ruled out sleeping on my left side. But my right leg had a fresh wound and a drain in it, so turning to the right wasn’t exactly an option either. I had to lie on my back. But then secretions from my nose – basically a mixture of blood and mucus – would run down into my throat. Several times I had to cough it up and spit it all out, but whenever I did, I felt like I was disturbing my roommate’s sleep. So that left me with a semi-upright position. It wasn’t the most comfortable, but it was the least problematic of all the available options. This time, I slept a little more. Sure, I woke up frequently, covered in drool and blood, and I was uncomfortable, but in the end, I managed to get a few hours of sleep. In the morning, I still felt like I had collided with a bus, but at least I had enough energy to function. It was the weekend, and I knew that, realistically, everything depended on me, because the speech therapist and physiotherapists didn’t come in on weekends. So I decided to walk around that day and talk to whoever I could. There weren’t many opportunities, but I talked to the nurses while they were changing my dressings and giving me medication, and I also talked a little with the people around me. In the meantime, my roommate had changed. The previous one had left the hospital on Thursday, the day I had my surgery, and the next one joined me on Friday. We didn’t really have a chance to get to know each other better, but we talked for a little while. I got the impression that the man didn’t really want to talk to me or open up to me. He was probably stressed about his upcoming surgery, and I probably hadn’t made the best impression the day before either. I didn’t push him too much into having longer conversations, because it quickly turned out that they weren’t exactly comfortable for me either. Because of my new palate, my speech muscles got tired very quickly, and I could feel them starting to ache. And to make matters worse, my tongue was constantly irritating the new palate, which caused an unpleasant sensation – something like constantly having something stuck in my throat but being unable to swallow it. I tried to walk around a little, but all I could really do was walk back and forth along the corridor of our ward. I did a few laps and decided that it was just as boring as lying in bed. Oh well. I’d have to wait until I got out of this place before I could really spread my wings again. Ah, right – on Sunday, a psychologist came to see us. That was quite a surprise. First of all, because she came at all. For two weeks, the only person who had been coming to see me regularly was the speech therapist. And secondly, because it was Sunday. But I guess our ward was simply on her schedule for that day. She went from room to room, talking to the patients. She spoke to my roommate first, who was waiting for surgery on Monday. But once again, he wasn’t particularly talkative. Well, perhaps he was simply the kind of person who preferred to keep everything to himself. I was in quite a good mood at the time, although I still didn’t have much energy. The psychologist asked me a few questions about what I did, what I was involved in, and what my plans were. I told her a little about university and my plans for the future. “And do you like any sports? Skiing, football – did you play anything?” she asked. “Nothing professionally, but I liked playing football and volleyball. Whenever I had the chance, I’d run around on some field somewhere and play. Now we’ll see what happens…” I replied. “You’ll play again. You’ll see.” “Of course I’ll play. There’s no other option. I’ll be back to full fitness,” I said, flashing her a big grin. She smiled too and told me that this was exactly how I should think. I simply pushed all the other thoughts out of my head. Apart from that, Sunday was mostly about resting and regaining my strength. I knew that Monday would be a little more interesting. There would probably be more activity, more people around, and maybe something to do. And sure enough, on Monday morning, more doctors came around for the morning rounds. They checked everything carefully. They were very pleased with the results of the surgery and said that everything looked even better than last time. “Last time everything looked good too, and then it went wrong… What are the chances of that happening again?” I asked. The doctor replied: “Well… Risk is an inherent part of this. But you have to stay positive. It will be fine. And if anything does happen, you still have plenty of places we can take another graft from – for example, your arms.” And he winked at me! Of course… I had seen one woman whose graft had been taken from her arm, and I had seen the contraption she had to walk around with so that her arm could heal properly. No chance. There wouldn’t be another repeat of this. Friday. I’d be out of here by Friday. I didn’t dare ask about actually being discharged, of course. But the hope of leaving on Friday was strong. This time, we were finishing this adventure. All that was left was a few more days for the wounds to heal.

The goal was simple: I was going home.

Here are some photos of me after second surgery. You can see the stitches on my neck, my big, swallowed face and the bandages and the drain in my leg.

Chapter 12 - Day of loneliness

Once I had set myself a clear goal, I decided to start working towards it immediately. I wanted to leave on Friday, so I had to do something about it. I was already sick and tired of just sitting around. But how was I supposed to make sure I got out? It wasn’t my decision, after all. It was up to the doctors. And I couldn’t exactly make my wounds heal faster by myself. Okay, surely there was something I could do! First of all, I decided that the most important thing was to keep a positive attitude. Everything would be fine. End of story. Surely things couldn’t go wrong twice in a row, right? It would be fine because it “had to be”! And this wasn’t about manifesting things or anything like that. As I’ve mentioned before, I’m Catholic, and when it comes to things like that, I only have one person to turn to: God. So all my prayers were extremely repetitive: “Lord God, I want to leave this place on Friday.” It was my faith that kept my hope alive – and it still does. And that hope was immediately put to the test. On Monday, my roommate was taken away for surgery. I was left alone in the room. I’ll probably talk about loneliness in more detail another time, because there were quite a few lonely moments during my illness, and there will be plenty more of them in this story. Generally speaking, I actually like being alone sometimes. You can do things your own way, you don’t have to worry about disturbing anyone, and nobody disturbs you either. When I’m alone, I can basically do whatever I want – I can arrange everything exactly the way I like it. Except that only really works when I’m in my own environment, in my own home, in a space where I feel comfortable. And I was in a hospital. I had already spent two and a half weeks there, and for most of that time I had been essentially alone. The wards were closed because of COVID-19, there were very limited opportunities to talk to other patients, and on top of that, there was a huge age gap between us and – fortunately! – no one my age. All of that made my sense of loneliness enormous. In the morning, the speech therapist came to see me, and later I had my dressing changed. And that was basically it. About fifteen minutes of interaction with other people. I had the rest of the day to myself, and I had absolutely no idea what to do with myself. I had already read my books anyway, and it was difficult to read for more than an hour at a time. The silence was starting to eat its way into my brain. There was nobody around. Nobody to talk to. Nobody to help kill time. I tried drowning out the silence with TV series. It worked for a little while. Two episodes later, it was only noon! Lunch hadn’t even arrived yet, and evening was still hours away… I didn’t feel like watching anything anymore. Or reading. Or doing anything at all. I walked around the room. I sat on every chair, on the bed, on the windowsill. I stood on the balcony. I walked up and down the corridor. And there was literally nothing else I could do there. Eventually, lunch came. But that didn’t mean the torture was over. When you spend that much time alone, you have an awful lot of time to think. And what exactly do you think about when you’re sick? I had my phone, and sometimes I would scroll through Instagram. I saw pictures of my friends on holiday. I saw people my age travelling, enjoying life, having fun – in other words, doing exactly what students are supposed to be doing during their summer break. Something that I was supposed to be doing too… Everyone had started making the most of the time after COVID. Travel had opened up again after more than a year, so I couldn’t blame anyone for going away. I would have happily gone somewhere too. If only I hadn’t been stuck on that ward. If only I had been physically capable. If only I had been healthy. I suddenly realized that life was starting to pass me by. My best years were slipping away. My biggest opportunities, adventures, and possibilities were passing me by. How was I supposed to fight that? Once again, I realized that I had no control over my own life. And yet, that morning, my attitude had been perfect. I knew exactly what I wanted, and I had a clearly defined goal. Only now I realized that simply leaving the hospital wouldn’t solve all my problems. In fact, it would solve only one of them: being stuck in the hospital. I realized that I would go home and, essentially, things would be almost the same. I wouldn’t suddenly have a lot more things to do. I couldn’t do very much back then anyway. I’d watch my TV series on the television instead of on my phone or laptop, and I’d read my books in an armchair. Basically, I’d only be changing my surroundings. But no. That wasn’t true. My family would be waiting for me at home – my parents and my brother. And that was the crucial difference. I would be surrounded by the people I loved, and I would have someone to spend time with. That was what mattered most. Would that solve all my problems? No. But it would make them easier to bear. And eventually, I realized something. I had somewhere to go back to. And, more importantly, I had people to go back to.

There is nothing better than that.

And there is nothing more important.

Chapter 13 - No more of this hospital!

Every day when I heard, “It’s healing well,” or “Everything is going well,” was filled with a certain amount of tension. After all, everything had been “going well” last time too. Until it suddenly wasn’t… I really wanted things to actually be fine this time. Or even better. One of the nurses came back from vacation. As soon as she walked into my room, she said: “You were supposed to be gone by now!” “I thought so too! But it’s still nice to see you,” I replied. “This time I’ll definitely be leaving on Friday.” “Of course you will. You must be getting bored here by now. It’s about time you went home. That’s where you’ll really get better.” That thought of home, and of finally getting better there, stayed with me over the next few days. And this time, I really did feel a kind of positive tension. I was waiting for permission to leave the hospital. It was a little like waiting for some kind of reward – you know you’ve earned it, but you don’t know exactly when you’re going to get it. And I felt like I had earned my way out. I was feeling better with every passing day. The doctor who had operated on me came to see me and said that everything was healing properly. I don’t think I’ve mentioned yet that every morning and evening, one of the nurses would come in with a little microphone and place it against my palate. Why you ask? Well, to listen to my heartbeat. Okay, maybe I should explain that one from the beginning. The blood supply to my palate had been connected slightly differently this time – it had been connected to the jugular vein somehow (I don’t know all the details; you’d have to ask the surgeon), and the blood was flowing through larger vessels. This created a noticeable pulse in my palate. The little microphone placed against my palate picked up those tiny pulsations and converted them into sound. And you could actually hear it. It was the best sound I heard every single day. Literally. Every time we could hear that pulsation through the speaker, it was an experience for me – and probably for the nurses too. I would always get excited together with them when the sound came through. That way, we knew that the new palate was working properly. On top of that, we kept an eye on its colour and on how the stitches along the sides were healing. I was constantly living in this strange mixture of uncertainty, tension, and anticipation. I walked around the ward, looked out the windows, stood on the balcony, and stared at the boring cityscape. But the tension never really left me. I prayed desperately that there would be no repeat of what had happened before, that this would finally be the end of the hospital, and that I would be able to spend the rest of my recovery at home. I was already tired of the hospital. Oh yes. A hospital can wear you down. And it does it brutally. And I don’t mean because of the staff. I’m convinced that the people who work there – doctors, nurses, orderlies, simply everyone – want what’s best for their patients. Sure, there will always be exceptions. That’s normal. But in general, they really do try their best to be there for their patients. But even the most wonderful care and the best people in the world can’t make a hospital a pleasant place. It just happens on its own. The space itself makes people gloomy. It makes them long for something they’ve left behind. Many of the patients told me that maybe their lives weren’t perfect, maybe they weren’t happy all the time, but at least outside the hospital they felt happy. That was what I could see in them – and in myself too. A longing for happiness. In a way, a longing for freedom. And above all, a longing for the people they loved. Patients told me about their grandchildren, their children, their friends – all the happy moments. Some of them had come from very far away. As it turns out, not everyone has access to the equipment and treatment methods needed to treat these patients. So in Gliwice, there were patients from Szczecin, Karpacz, or Sanok. They were hundreds of kilometres away from home. And even if their families were able to visit them, they often simply couldn’t make the journey. That’s why I think every act of kindness and goodwill from the hospital staff deserves even more appreciation. They really did try to give us the best conditions possible and create a positive atmosphere. I think that thanks to them, every patient could at least smile once a day. My biggest smile probably came on Thursday morning, when the doctor came around during the morning rounds and said that this time everything looked great and that I could leave the hospital on Friday morning. He told me directly: “Time to go! Tomorrow morning you’ll get your discharge papers and go home.” And he gave me a genuine smile. I couldn’t stop smiling. I knew that everything I did that day, I was doing for the last time in the hospital. The last time changing my dressings. The last time doing speech therapy. And I no longer had to “eat” through the feeding tube into my stomach. I was given very precise instructions on how to change my dressings from then on and how to continue exercising my speech. I was also given information about my diet and what I needed to pay particular attention to. For the next few months, I was supposed to stick to a liquid or, at most, semi-liquid diet. I had to take very good care of my new palate, and there was no question of chewing anything, at least for a while. At that moment, I didn’t care. I didn’t care that I had to adjust my diet to my new circumstances. Because I was finally leaving the hospital! In the afternoon, I had quite a lot of free time. My roommate had another procedure, so I had the whole room to myself. And this was a completely new and different kind of loneliness. This time, I knew it was finally coming to an end. The next day I was going to be home. I could count the hours. And suddenly, the time felt good. I could peacefully watch my TV series. Well, I even played some computer games. I also read my books, and basically, I didn’t even notice how the time between lunch and dinner had passed. In the evening, I had one last quick training session on how to administer my medication and injections. For the next six weeks, I was going to have to give myself injections because that was what the doctor had prescribed. I learned everything pretty quickly. After all, sticking a needle into your stomach isn’t exactly rocket science. Although you do have to be careful and make sure you do it at the right angle. Anyway, I was leaving. And I think the nurse noticed my change in attitude too. She smiled at me and said – completely sincerely: “I’m so happy that you can finally go home! I wish you lots of health!” I actually felt a little embarrassed. But it made me really happy. That night, I fell asleep very quickly and slept pretty well. Funny, isn’t it? In the morning, as usual, the nurse came in. But this time she said:

“You can keep sleeping! You’re going home today, so you don’t have to get up until seven, before the doctors come around.”

Chapter 14 - At home

Oh yes! Finally! After almost four weeks in the hospital, I heard the doctor say, “You’re going home today!” Of course, a few more hours passed between the morning rounds and actually leaving, but this was already a time for great joy. I calmly had breakfast, took a shower, and packed most of my things. I was only waiting for all the paperwork and instructions, and there were quite a lot of them. The instructions were mainly about what I could eat, how I should eat and drink, how to exercise the mobility of my jaw and speech apparatus, as well as what kind of physical activity I could undertake and how much of it I was allowed to do. Oh, there was a lot to keep track of. On top of that, there were regular check-ups at the hospital. First every week, then every two weeks. I was also informed about the next phase of my treatment, which was going to be radiotherapy. It was supposed to begin at the end of September. I had almost six weeks to rest. I gathered all the documents into a folder and called my dad. Finally, he could come and pick me up from the hospital. In fact, I was already waiting for him at the ward entrance. One, because I really wanted to get out, and two – there was already another patient waiting for my hospital bed, so I had to vacate the room. That was also when it really hit me that I looked pretty miserable. By the time I left the hospital, I had lost around 15 kilograms. My trousers were hanging a little loosely on me, but I tightened them with a belt. My face was swollen, but by then I had more or less gotten used to it. What I didn’t know at the time was that the swelling would stay with me for another five months and would only really go down in January of the following year. Finally, I saw my father, who had come up to the third floor to pick me up. The hospital’s policy at the time – it was the COVID-19 period – was that you couldn’t just wait anywhere, and sitting around in the corridor wasn’t an option. We threw our arms around each other and hugged as tightly as we could. That time in the hospital had been a challenge for me and had been terribly difficult, but it had also been incredibly demanding for my loved ones. I can only imagine what those days must have been like for them while I was in the hospital. They sometimes told me a little about it, but I know the most from my brother’s stories. I knew it had been hard – for all of us. I was going home, but that didn’t exactly mean things were going to get easier. In some ways, yes, things were supposed to get better, but they still weren’t going to be good. Now we were going to be together. I was going to be in a more supportive environment, and in a way, we could work together on getting me back on my feet. Only it wasn’t that simple. Even as I was leaving the hospital, walking down the stairs and getting into the car, the scars on my legs were starting to make themselves noticeable. That had been the biggest effort for them in the last few days. And they expressed their opinion about it through pain. I couldn’t fully bend my knees – and that was going to take quite some time. In general, I had a lot of limitations. On the way home from the hospital, we went straight to the pharmacy. I needed to stock up on medication. For the next few weeks, I was going to have to take various medications, get injections, and take care of my scars and stitches. After almost a month in the hospital, I was finally home! I could finally sit down with my dad, talk, and rest. Dad made us some coffee and we sat down together. He drank his coffee, while I mostly sipped mine with a teaspoon – well, drinking still required quite a bit of practice from me, and taking a bigger sip was not yet an option. Fortunately, I mastered that skill within a few days and was very quickly able to handle drinking liquids without much trouble. Dad and I simply sat there and talked, not necessarily about anything particularly meaningful. Just football, sports, cars. Later, we just sat quietly, only to talk a little more again after a while. Mum was still at work, and my brother was away and was supposed to come back the following day. We were already planning a trip to go and pick him up. While we waited for Mum to come home, Dad started preparing lunch. I was still recovering. Mum came home not long afterwards, and the reunion was just as warm. We had missed each other. We sat down for lunch together. For the time being, my main tool – and my basic piece of cutlery – was going to be a teaspoon. Unfortunately, that didn’t exactly turn me into a speed demon… I ate my portion very slowly and carefully. Talking while eating was out of the question. The risk of choking was simply too high. I had already choked for much more trivial reasons, like having a little bit of water in the hospital. It was better to take things slowly. That did mean, however, that I would always be the last one to finish eating. I decided I could live with that. After lunch, exhaustion hit me immediately. The hospital routine completely won that battle. There, after lunch, I didn’t really have anything else to do anyway, so I would take a twenty-minute nap. At home, I had to do the same. Still, before evening, I went for a short walk – just to get my muscles moving a little. And that was when I got a bit of a shock, because it turned out that walking a few hundred metres was a marathon for me (with all due respect to people who actually run marathons). So I quickly turned around and went home. And once again, I had to rest. That evening, I was looking forward to spending the night in my own bed. It was supposed to be peaceful, comfortable, and pleasant. Unfortunately, it wasn’t. What had worked in the hospital simply didn’t work the same way at home. After falling asleep, I quickly started drooling. I couldn’t find a comfortable position where neither my legs nor my neck hurt, and I couldn’t lie on the swollen side of my face. As a result, when I woke up in the morning, I discovered that my bedding and pajamas were ready for the washing machine. This couldn’t continue. I came up with a plan: starting the following night, I would sleep on a towel and put a cotton pad in my mouth to absorb some of the saliva. There were still many problems ahead of me.

Things were still not good. Oh no, not at all.

Chapter 15 - "Normality"

It was only after coming home that I truly realized just how terrible a shape I was in. It was difficult to say that I had actually slept well. I got up sore, exhausted, and completely unfit to function. My pillow was covered in drool, and so was my pajama top. It took me the entire morning to recover enough to feel like myself again. Suddenly, it turned out that the hospital had somehow been “masking” certain difficulties of everyday life. They only became apparent when you tried to return to your daily routine. I wanted to write “normality,” but things were not going to be “normal” for a long time yet. The day after returning from the hospital, my parents and I were supposed to go and pick up my brother, who was finishing his retreat. It was meant to be a little road trip, a chance to get out for a while and leave all of this behind for a moment. An hour in the car is neither a long nor a short time. However, it was difficult to last that long in the car. I couldn’t keep my legs in one position and had to shift around a little. My left knee probably suffered the most. They had taken not only soft tissue from there, but also a fragment of bone from the femoral condyle. The wound was deep, and although it was already healing nicely, it was still fresh and I could feel it. For a long time after the surgery, I experienced that knee as if it were some kind of movable shell. It was incredibly difficult to describe the sensation, but I couldn’t feel the entire outer part of my knee. At the same time, I could feel the scar and the area around it very clearly. The other leg was somewhat better. The wound on my thigh was healing faster and was less exposed to all kinds of movement. I couldn’t feel the entire front of my thigh, but the pain only really bothered me after I had been still for a longer period of time, and it was mostly around my hip. There was also the wound on my neck, but I moved my head quite regularly – turning it and nodding – so that part of my body suffered the least. Nevertheless, I was happy that I could go somewhere and spend some time away from everything. After all, I had spent the previous few weeks in the hospital, with a rather boring view outside the window… That was when I noticed how deeply the hospital perspective had become ingrained in me. Already on the second day after leaving, I felt something changing inside me. I started noticing and appreciating many things that had previously seemed like mere additions, things of little importance, or even optional parts of life. Good weather, sunshine, the garden, flowers, plants, or birds chirping – all of these things suddenly took on a new meaning for me. There were more and more of these little things. After all, what surrounds us very often becomes ordinary to us, and we stop appreciating it. I suppose that is a topic for later. The question of appreciating all the different parts of my life would certainly come back again. For now, though, I would like to focus on something perhaps more important. We went to pick up my brother – Mateusz (Matthew). Matt and I hadn’t seen each other for almost four weeks. A lot had happened during that time. We had spoken on the phone several times, so he already knew what the effects of the surgery looked like. But finally, we were going to see each other in person. In his eyes, I saw what I had seen in the eyes of every person who met me for quite some time afterwards. There was always that initial assessment of me, that uncertainty, maybe even some fear, a little pity, sadness, compassion. But I think that only with Matt did it disappear so quickly. He looked at me the way he had before – as a normal person, his brother, the person he knew, the person who had not changed. And I think that was the most important thing. A lot had happened, and a lot had changed on the outside. And the people who knew me seemed to assume that I had changed too. That I couldn’t possibly still be the same Wiktor. That the illness must have changed me, that nothing could ever be the same again. But that wasn’t true. Of course, difficult events and experiences affect everyone. We change somewhat because of what we go through. But it is a mistake to assume that this person is no longer close to us, or that they have become a completely different person, or that they no longer need us. I changed too. I evolved. Many things stopped being obvious after the illness, and there were still many difficult moments waiting for me. Was I still the same? Probably not. Was I still myself – am I still myself? I hope so. I needed normality, even though I was still a long way from that very “normality.” I wanted to get back to life. I didn’t want to wait and see what would happen, what fate would bring, what was waiting for me. No. I was going to be responsible for my own life, my own choices, and despite the illness, I didn’t want to wait. But I needed people around me. Matt was the one who broke through that barrier the fastest. He started with the simplest everyday things – let’s watch a film or a series together, let’s play some games, let’s go outside, let’s talk. Of course, some things had to be adapted to me, such as food, because everything had to be liquid. I also took much longer to eat than everyone else, and physically, there were many things I simply couldn’t do. But we should always look at what we *can* do. We should look beyond the limitations. We should look at ourselves more broadly. After my brother, my parents gradually started looking at me in the same way, although for a long time – and probably still – they worried about absolutely everything. Only after some time did more of my friends slowly begin to get “used to me” again. Here, I also want to mention a few friends from high school and university who simply accepted everything and moved on. They supported me, but at the same time, I was still the same Wiktor to them – and I appreciate that very much. I know that I’m treating this topic rather chaotically here, because it is also very complex and difficult to assess or define clearly. At the beginning, I usually encountered these two extremes. Some people treated me just as they always had, while others seemed to think that everything I had gone through must have changed me and that I was no longer the same person. The transition from the “old Wiktor” to “Wiktor after the illness” was not obvious to everyone. That was when I started seriously wondering – and worrying – about what would happen when it came to meeting new people. People who didn’t know the “old Wiktor.” Would this “Wiktor after the illness” – perhaps one day the “new Wiktor” – be someone they would like? Would I still be able to make new friends?

Would anyone even want to get to know me?

Chapter 16 - Ceaseless struggle

The days after returning home passed by in a rather monotonous way. My life mainly consisted of eating, sleeping, resting, and occasionally trying to exercise, have conversations, or do something – anything, really. Eating took an incredible amount of time. When you eat a plate of soup with a teaspoon and have to be careful not to choke (which still happens anyway), unfortunately, a single meal takes more than an hour. I only got the hang of it much later, and even then, I barely managed to get below the one-hour mark. Sleeping was a whole different story. The nights were quite difficult. Something always hurt, and sleeping on my left side had caused some small pressure sores to develop. On top of that, I was drooling, so managing to sleep for several hours straight was always some kind of achievement, while getting a proper night’s sleep was a luxury. Because of that, I often had to take a nap during the day simply because I was running out of energy. And back then, I could fall asleep anywhere, in any position. I dozed off several times while watching a film or a series with Matt, and not because it was boring. My eyes simply started closing on their own. I managed to fall asleep on a bench in the garden and even at my computer while taking care of some ongoing university matters. Reading books was incredibly difficult, too, because I never knew when sleep would take over. In fact, I wasn’t doing much of anything, because I wasn’t allowed to do much. I was supposed to take it easy. The only problem was that while I was taking it easy physically, I somehow had to keep my mind occupied. You can’t just leave your head doing nothing. The brain doesn’t take well to that kind of idleness and starts looking for things to do on its own. And why waste time thinking about random things when you can actually do something useful? So I didn’t give up on books, films, or conversations. Still, I also needed some kind of space for being *active*, something that would allow me to get my body moving a little. Otherwise, if I became completely inactive, my home would eventually start to resemble the hospital. After all, even there, I had only been walking a few dozen metres at most along the corridor. The only activity the doctors were willing to approve was walking. I was allowed to go for a walk every day, as long as I kept it to a “reasonable amount.” How much was reasonable? I had no idea. My legs knew, though. After two kilometers, I was always completely done with walking. Don’t worry, it’s not as if I immediately set out on a two-kilometer route. It took a whole series of preparations, during which I didn’t even leave the garden for an entire week. I started slowly, walking back and forth along the length of our yard a few times. Later, I ventured out onto the road. After a week, I managed to walk a little over five hundred metres, perhaps. And it took me almost three weeks of practice to finally drag myself through those two kilometers. Those two kilometers became a kind of barrier that stayed with me for quite a long time. I don’t even know exactly when I finally managed to cross it. About a month after coming home from the hospital, my family and I went on a trip to Ojców. It’s a beautiful place in Poland, close enough that the journey isn’t too long or tiring, and the area itself – Ojców National Park – is absolutely lovely. One of the attractions there is a castle. A path leads up to the castle, climbing uphill along a series of stone steps. There are perhaps forty steps or so, and the total elevation gain is maybe fifty metres. But at that point in my recovery, it was Mount Everest. I climbed my way to the “top” completely sweaty and exhausted. I had to rest on a little bench in front of the castle. I felt as though I wouldn’t be able to do anything else. The weather was beautiful. It wasn’t too warm, but the sun was shining wonderfully. The surroundings were absolutely stunning. And there I was, sitting on a bench, sweating because I had walked a few metres. It was devastating. Because how could this even be possible?! Yes, yes, I know… you have to be patient. But my patience was already running out. I just didn’t know how much more I still had to go through. And I didn’t want to give up on life. I didn’t want to sit at home and wait. I wanted to finish my studies, look for a job, travel, enjoy life… And here I was, defeated by a hill. I wasn’t giving up. Not yet. Never.

Although the next stage of my treatment was going to put me to an enormous test.

Chapter 17 - Beginning of the radiotherapy

In September, I began preparing for the next stage of my treatment. This time, I was facing radiotherapy. This form of treatment is used both to treat cancerous tumors and to secure the areas from which such tumors have been removed. So, what exactly is radiotherapy? It’s a very broad and equally complicated subject. One day, I’ll devote more time to it and explain it from a professional and scientific perspective. For now, I’ll try to keep things a little simpler. The goal of radiotherapy is to deliver energy to the right place – the diseased area. We want that energy to destroy the cancer cells. When we’re dealing with a tumor, cancer cells make up the entire mass of the tumor, but they can also spread into the surrounding tissues. In cancer treatment, it’s extremely important to eliminate all the diseased cells. If even a single one survives, unfortunately, there is a chance that the cancer will return. Even surgically removing a tumor completely doesn’t guarantee that every cancer cell has been eliminated. And this is where radiotherapy comes in. Radiotherapy most commonly uses photons – these are our little packets of energy. Some of you might remember photons from physics lessons, particularly from optics and the subject of light. That’s actually a fairly accurate association, because light is made up of photons too. However, what we call visible light is only a tiny part of the entire electromagnetic spectrum that we work with. So, we use these little packets of energy and essentially “shoot” them at the tumor or the area where the tumor used to be. This allows us to destroy any cancer cells that might still be left in the patient’s body. And this is where some of the problems with radiotherapy begin. After all, we’re dealing with radiation. That’s why the entire process has to be extremely precise, carefully planned, and properly carried out. The radiation passes through healthy areas as well, and we absolutely have to spare those tissues as much as possible. Before planning the treatment, the patient needs to be placed in one fixed position that they will maintain throughout the entire course of therapy. Usually, the patient lies down — but they must always lie in exactly the same position. There are various methods used to keep the patient immobilized. Sometimes, a so-called thermoplastic mask is moulded to fit the patient. In other cases, a special mat is used, one that adapts to the patient’s body shape and then retains that shape. On top of that, various markers are often used, either on the skin or on the masks themselves. Treatment planning begins with a CT scan and, very often, an MRI as well. These scans are used to determine the area that needs to be irradiated and to plan the dose distribution. In my case, both CT and MRI were necessary. I also had a special mask fitted over my head, which was attached to the table and prevented any movement of my head and shoulders. The treatment itself usually consists of around 30 sessions. Why so many? Of course, it has to do with how our bodies respond to radiation. Radiation can damage healthy tissues, so we need to protect them. By dividing the entire course of treatment into short sessions, one per day over six weeks, we give healthy tissues the time and opportunity to recover. Unfortunately, that doesn’t mean the treatment comes without problems. Patients undergoing radiotherapy experience a form of radiation sickness. It usually manifests itself as general weakness, fatigue, a lack of energy or motivation, pain of varying intensity depending on where the radiation is directed, skin irritation, and sometimes even burns. Most patients tolerate radiotherapy reasonably well. Very often, their condition allows them to live at home and simply travel to the hospital for their treatment sessions. I was one of those patients, too. Except that during one of my appointments before treatment began, my doctor made one thing very clear: “It will hurt. It will hurt a lot, because unfortunately, the oral cavity and the mucous membranes are extremely sensitive, and the radiation will destroy them. However, we will continue the treatment for as long as you can tolerate it, and we’ll simply give you painkillers. You have to get through this, because interrupting the treatment and then restarting it are rather complicated and difficult processes.” So, I had been warned about the entire course of treatment. I knew what was going to happen, how it would happen, and when. Now, all I had to do was get through those six weeks. And that was exactly what it became: a fight for survival. The irradiation itself takes just a few minutes – somewhere around seven to ten minutes, and you’re free to go. Everything runs smoothly. You lie down on the table, the staff check your position, perform a quick CT scan to confirm that everything is aligned correctly, and switch on the radiation beam. Afterwards, the staff simply release your mask, and you can leave. You can’t see the radiation. You don’t know exactly when it’s hitting you, and you can’t see the effects straight away. But the effects do come. My doctor had warned me that the problems would start after a week. And right on schedule, after exactly one week, a fungal infection developed in my already somewhat damaged oral mucosa. That was the beginning — the first stage of the problems I was about to face. Suddenly, I started feeling a burning sensation in my mouth. It was a little like having some kind of hot, spicy seasoning on my tongue all the time. But the breaking point came the following week. The infection had cleared up, but by then, the treatment had already taken its toll. One morning, as usual, I was taking my pills. I wanted to wash them down with some water.

I put the pills in my mouth, then took a sip of water and… I burst into tears.

Chapter 18 - I reached the bottom...

After two weeks of radiotherapy, I was no longer able to swallow water. My entire oral cavity hurt. The radiation had destroyed my mucous membranes and salivary glands. What did that mean in practice? My salivary glands started producing what is sometimes called “bad saliva” – a thick, cloudy, mucus-like secretion. This kind of saliva doesn’t moisturize the mucous membranes and is also difficult to swallow. As a result, my mucous membranes started drying out, while the radiation continued to damage them. In the end, my mouth was constantly drying out. Every morning, I woke up with chapped lips, a dry and stiff tongue, and a horrible burning sensation in my throat. It was a little like having chronic pharyngitis. The pain was with me from the moment I woke up. Every movement of my tongue, every word I spoke, every sip of water caused pain. How can I describe it? I’d compare the pain to having burnt hands with the skin peeled off, then rubbing those hands against each other. Something like that was happening inside my mouth. The pain grew stronger with every passing day. I was taking increasingly powerful medication and constantly increasing the doses. Halfway through radiotherapy, I already had to take opioids. Of course, everything was done under strict medical supervision. My doctor himself advised me on what to take and when. He only made it clear that I must not exceed two doses of opioids and two doses of ketoprofen per day. On top of that, I was also taking medication to protect my stomach and liver. Large doses of painkillers and anti-inflammatory drugs could damage my internal organs, and there was no point in giving myself even more problems. I tried to take just one dose of opioids in the morning and save the second one for an emergency, in case things became unbearable. Nevertheless, I was aware that I was right on the edge, and I had no idea how much more pain I would be able to endure. My last resort was to go to the hospital, but I didn’t want to do that unless it was absolutely necessary. Because physical pain wasn’t the only problem. There was also the mental side of things, and I felt that if I had to spend entire days in the hospital, I would probably go insane… At least at home, I could spend that time in a familiar environment. I could find something to occupy myself with in a place I knew. In the hospital, I would have been left alone with my thoughts. I felt that would be a straight road to a nervous breakdown. Things were at least a little better at home, and the doctors also advised me to stay with my family if my condition allowed it. They kept repeating that it was definitely better for me, especially since I lived relatively close to the hospital and could easily travel there for my treatment sessions. Because of the pain, I decided not to speak unless absolutely necessary. The movements of my tongue and the way it rubbed against the roof of my mouth caused so much suffering and discomfort that it was simply more comfortable and safer to remain silent. I communicated with my family mostly through gestures, by signing things out, or by writing words down on a piece of paper. What else could I do? At least that made things a little easier. My days became incredibly monotonous. I would get up in the morning and go through what was essentially a ritual of masochism, having to rinse and moisturize my mouth after an entire night of it drying out until it felt as hard as stone. Then I had to eat breakfast and take my medication as quickly as possible. I took the first batch of tablets before eating so that I could somehow get through the meal. Breakfast had to be prepared with milk. Those were the only kinds of dishes I could somehow manage to swallow, because the milk eased the pain ever so slightly. Eating was also made much more difficult by how little I could open my mouth. After the surgeries, I had managed to work my way up to opening my mouth about two centimeters between my teeth. Most people can normally open their mouths to at least three centimeters. The treatment, however, causes the muscles to contract. As a result, I started losing that ability very quickly, and before long, my maximum mouth opening was no more than half a centimeter. At that point, I couldn’t even fit a spoon into my mouth. Everything I ate had to be slurped straight off the spoon. My meals took longer and longer. First, there was the pain. Second, it was exhausting. Breakfast could take me more than an hour, and lunch sometimes took as long as two hours… Well, somehow, I had to get through it. After breakfast, I took my medication and used the brief window of relief to do something useful. Sometimes I worked on university assignments – October had begun, and with it came classes. Sometimes I read a book or went for a walk. Around midday, I would usually start reaching a breaking point. The pain would return, and at that stage, all I could do was try to manage it with weaker medication. The pain also brought exhaustion with it. I tried to lie down for a while and, if possible, take a nap. It didn’t always work, but lying down made the whole situation a little easier to bear. After lunch, I would try to read books or watch something useful online – not necessarily a TV series. Then came my treatment appointment. Every day, except for weekends, I would report to the treatment room at 6 p.m. Or rather, to the bunker housing the radiotherapy accelerator and gantry. “Gantry” is the technical term for the rotating arm that allows the radiation beam to be directed at the appropriate place inside the patient from different angles. Ten minutes of being “roasted” on the treatment table, and I was free to go home. I would spend the evening back at home with my family, sometimes watching a film together and sometimes simply enjoying their company. And then night would come. It had to. There was no other way around it. I had to go to bed. But, as if to spite me, that was exactly when everything hurt the most. That was when sleep refused to come. I could fall asleep at almost any point during the day, but at night, I simply couldn’t. On top of that, the autumn weather and the effects of radiation sickness made the pain in other parts of my body worse, especially in my legs. My scars were really making themselves felt. It might sound funny, but at that point, I was functioning a little like a barometer. Every change in the weather affected me. I could tell when the pressure was dropping, when rain was approaching, when it was going to be windy, and when I could expect nice weather. There were nights when it was raining outside, and I was writhing in pain in my bed. At certain moments, the physical pain wasn’t even the worst part anymore. All of this was carving deep wounds into my mind. I wanted to sleep. I was bloody exhausted, and on top of that, opioids cause drowsiness. And yet, sleep wouldn’t come. It hurt… Finding a comfortable position seemed impossible. I would quietly walk around my room. Then I would sit on the bed. Then lie down again. There was no relief. I knew I would feel the effects of another sleepless night the following day. And then another night, almost identical to the previous one, would follow. And so it would continue until the treatment was over. One night, I simply couldn’t take it anymore. In tears, completely exhausted, defeated, broken, and worn down, I fell to my knees. The only thing I could say was:

“God, I don’t know what’s going on. I don’t know what You want. I don’t understand. But I can’t do this on my own anymore… I need strength. I need You. Give me the strength to get through this.”