The last few days were quite busy for me. I finished the roof of our small garden house which my wife and I built for the kids. They are 4 and 8 years old and finally have a small house they can play in right next to their sandbox. They love it. I also cleaned up the garage, I had my 47th birthday, and I was at the barber for the first time after about a year.
All that sounds normal, and it is - that’s why I think it is so awesome given the situation. The situation is that I have not been at the barber because I lost my hair, and it is currently slowly growing back. I lost my hair because of the therapy I got. I have cancer. I found out about one and a half years ago: a small persistent lump on my tongue that didn’t get better. At that time I have asked 4 doctors and nobody knew what it is until finally they took a sample and gave me the bad news about 2 weeks later.
On 6th November 2024 I had an operation that took about 7 hours. They cut out about one third of my tongue and replaced it with a big piece they took out of my left arm. The doctors assured me that with 95% probability I am now cancer free, but they still suggest to do radiation therapy. Which I did. They built me a cool mask to clamp me onto a table where I couldn’t move my head, so they were able to precisely radiate the cancer cells.
After that they said, again, with 95% probability my cancer is gone. A few months later I grew a lump on my neck, and doctors didn’t want to operate right away because they still believed it is something else. They pumped me full of different kinds of cortisone, and the lump was gone and everything was good. But then I grew another lump on the other side, and this time I had another operation so they could take a biopsy. This was 18th June 2025. Unfortunately and as expected, it was a lymph node with cancer cells.
There was a month when the swelling in my neck and throat got so bad that I had to take painkillers daily or else I was not able to sleep. This was dramatic for me as I have not used pain killers for practically my whole life.
Then things moved quickly, doctors were almost in panic about me, and I was a passenger for this whole endeavour: I got a stomach tube, then I got a port-a-cath in my left arm which is a small device under my left biceps. It has a long canal that goes up close to my heart, and it is where it is possible for my doctors to put in a needle easily to give chemo therapy. For some reason the doctors put that device in under no anaesthesia, and this was brutal for me - I get easily sick just from seeing a needle. I still have to thank the one nurse who held my hand and talked to me calmly for the whole operation, I wouldn’t have survived without her.
Then I started chemo therapy. First line with 2 different drugs, plus an immuno therapy drug. Doctors said that I am young so they felt I was strong enough to take such a high dose. That meant I had to get to the hospital every three weeks. That day was tough, but mostly because of the waiting: I had to be at the hospital at 7. Around 9 they took a blood sample. Then, depending on luck, eventually you’ll get to a doctor who you can talk to and who looks at the results from the samples and if all is good will give today’s therapy a go. Then, maybe around 11, the therapy actually starts. For me it meant sitting in a chair for 4 hours while a whole Christmas tree of all kinds of drugs were connected and slowly pumped into me, in some order. Sometimes it took until 6 PM until I was finished at the hospital and could take a taxi home.
Also, they left me with some kind of “pump”: it looked like a sausage full of chemo drugs, which was connected to my port-a-cath, which slowly over the course of the next 4 days pumped the drug into me. While this happened I couldn’t play with my kids because I had to take care nothing happens to this stupid pump. It was cruel.
I couldn’t eat properly because, well, a huge chunk of my tongue was gone, and radiation therapy made it a lot worse. Eventually I had to get a feeding tube into my stomach into which I could fill in water and these brown liquids that are absolutely fantastic nutrition wise. I absolutely hate them. I sat there for 3 hours while it was slowly flowing into my stomach, and that was my lunch. The worst about that was that I was not able to do anything with my kids, I was just sitting there for hours and seemingly time and life was flowing past me, as if I didn’t exist and was just a bystander. I love my wife and she was doing her best to be able to give our two kids a normal life, and I could only sit there and look how everything happened around me.
Obviously this whole thing was an enormously difficult situation. I started to lose a lot of weight, because the therapy was tough and getting calories in was just so difficult. My taste was mostly gone, and simply eating anything is a fight.
Then the 6 chemo therapy sessions were over, and the result was that the cancer has grown, at least on one side. Immunotherapy didn’t work, the 2 chemo medicines only worked partly. On my left neck I have a blob of cancerous cells around my carotid artery. Operation at this place is not possible. Radiation therapy is out too, I already had my maximum dose. So the only thing left was some 2nd line therapy. That meant I got 2 different chemo drugs, and an Antibody therapy with Cetuximab.
The second chemo therapy was really tough. I started this whole story with about 84 kg, and finished it with 63 kg. I lost all my hard earned muscles and looked like a skeleton. After the 5th chemo therapy session I had to stop, I just couldn’t take it any more. My body couldn’t take it, and my mind neither. I started to hallucinate and was not able to formulate coherent sentences. I didn’t tolerate the feeding tube brown liquids any more, I frequently had to vomit after getting them.
So I had no other option but to stop the chemo therapy, and only continue with the Antibody therapy. And this is where I currently stand. I have stopped chemo therapy about 5 months ago, and am slowly getting better. I have the great fortune that I am responding well to the antibody therapy, which means that the doctors call it a stable situation right now. I am now able to eat a lot of foods again, I even taste some of it, and my hair has also slowly started to grow back. There are other side effects though like polyneuropathy in my hands and feet, which means I have lost a lot of feeling because the nerves were attacked by the chemo drugs. E.g. it is impossible for me to properly take and hold things like nails, and getting things out of pockets is difficult because I just don’t feel if I have something in hand or not. Typing was difficult but it is slowly getting better, actually I am amazed how well I can type these lines.
My current status is that the disease is stable. The fact is that it usually takes the cancer a few months to learn how to get past the handbrake that the Antibody drug is, and it is likely that this will eventually happen to me too. Then I do not think I have any options left. Another chemo therapy will be the end of me, I just don’t have the strength for it any more. I’m trying hard to get my body back into a robust shape, but it is so damn difficult. I am now at about 66 kg, a far cry from my initial 85kg, and I just can’t put on more muscle weight. And believe me, I know everything about how to do that.
Today is my birthday, I am now 47, and my greatest achievement is that I am still alive. I love my life and still want to be there for my wife and my kids. It would be completely unfair to them for me to just die. I don’t want to die, I want to live. And the best way for me to do that right now is to simply ignore the fact that this might have been my last birthday, and just live my life. There are so many things to learn and do and feel and I just want to live a happy life with my family.