My life with cancer.
Living with cancer… is not easy. And this is my story so far. I have had cancer for over 20 years now. Today I ask for your help, not just for me, but for my family too. My story is a long and painful one.
It all started in 2001 I was diagnosed with a very rare type of cancer, thymoma. It is a slow-growing cancer and affects approximately 1,5 people out of a million.
My life was about to change without me even knowing it. In 1999 I was exhausted all the time and so I went to see a doctor. The doctor diagnosed me with depression. Months later the situation got so severe that I could hardly do my job.
In 2000 the tiredness became worse and worse and again I went to see a doctor. The doctor took an x-ray and saw a very big mass. (tumor). It was located between my chest bone and heart. They had to operate and identify what it was before finally diagnosing me with thymoma. Hearing that I have cancer made me feel as if my whole life ended. The feeling overwhelmed me. I cannot explain how it felt, it is even hard to put it all in words. Shock and disbelieve surrounded my whole family, although my kids were still too small to know what was really going on, I knew that it was going to affect them so much. Our lives changed forever. In an instance.
In 2001 we had the tumor removed. At that time it was the size of an ostrich egg. We were unaware that the tumor had burst open and so (I never knew what lay ahead), it spread to my right lung tissue, and eventually to my whole body. I never realized that things were going to get worse from thereon. When we discovered that it spread and started growing in my right lung, it was too late. They had to cut the tumor out again.
This is the first time that I received chemo. At that time the doctors weren’t sure how to treat the cancer and so I received multiple types of chemo, one of which was the red devil. (It has that name for a reason.) I received so much chemo that I felt like I want to die. But I was determent to stay strong.
I was 31 years old at the time and I really recovered well. I continued working full-time, but at the back of my mind, there was always this little voice telling me... I have cancer! The fear of it returning was always lurking on my mind. Tearing me up inside. As time went on everything seemed to be normal and life continued as usual.
In 2006 we discovered 3 smaller tumors in my rib cage and so I prepared myself for my second operation. After the operation, I had to receive chemo treatments for 6 months. The first two sessions didn't affect me much, but after the third session, I didn't want to continue. It was hell itself.
A lot more trouble started in 2011 when I started getting serious back pain. After the doctor took a scan of my back, it was determined that the cancer had damaged two of my vertebrae. Most of the tumor could be removed and the vertebrae were replaced by using ox bone. They stabilized the bone by implanting eight pens and two screws as well.
After the operation, I received radiation instead of chemo. I had to undergo a six-week radiation treatment on my back. Every time I had to go back I knew how it would feel, the pain, the feeling of death lurking, it was terrible, but yet I did not give up. After all of that, I still kept on working although it became much more difficult. This was at that time that I realized that the road I’m walking with this cancer will be extremely difficult. Everything that I have been through had started to spread seeds of emotional and psychological distress. Depression started to show its ugly head too. I was still fairly lucky as I did not have that much pain compared to the pain and suffering I have now.
In 2014 a big tumor appeared on the right side of my rib cage. The first step was to try and shrink the tumor with chemo, but to no avail. That is when we realized that the chemo was never going to work for my type of cancer. The tumor was removed in 2015 with almost a third of the rib cage as well. They implanted a titanium net to keep my rib cage from collapsing. Still, after all this, I never stopped fighting! I was determined to see my kids grow up, my wife happy and my family together. I will show no mercy towards this cancer.
Three months after the surgery I started having trouble breathing, at times I would just completely stop breathing. During this time a strange thing started to happen. Big blue veins appeared all over my chest and stomach. A scan revealed another tumor inside of my heart and the heart's main artery. The tumor was so big that it covered the whole heart chamber. My body made new pathways for the blood to travel around within my body. The doctors were baffled, to say the least. The new veins was a really strange sight to behold, they were as thick as pencils. And then it came. The sentence that no one ever wants to hear. I can not explain what it feels like when a doctor tells you that there is nothing that they can do for you.
One day a cardiothoracic contacted us and proposed an experimental surgery. It was a big risk that I took. I had a 10% chance of surviving. The doctor blocked off the main artery and removed the tumor from my heart. He had to cut a hole in my heart and mend it with the heart tissue of a cow. I was kept in a coma to give my body a chance to start repairing itself. The operation was an amazing success, but with every positive comes a negative. I became more emotionally unstable and hurt, it felt like God was just punishing me. I felt cursed.
Waking up in the morning and going to work to support my family was still always my top priority and for some reason, it motivated me even more to work harder even though my body would not allow it. I knew I had to work hard for my family. They were my motivation and rock that I could hold on to.
One night I went to bed and the next morning when I awoke I was shocked! I could not walk and my whole body was paralyzed. I could only move my head. Another scan revealed a tumor located at the back of my neck. Once again I received radiation and luckily the tumor shrunk, but I still could not walk. The doctors told me that I will never walk again. On top of the bad news, I was laid off at work because of the cancer as well, but I still had my family and I was determined to keep fighting. One day a miracle happened when I realized that I was able to move my toes. I saw this as a chance to show the cancer who’s boss. I am now walking again.
In December 2015 I started working as a contractor, but the cancer kept returning. At this stage in my life, I was already drinking very strong pain pills to keep the pain at bay. Then there is the burning sensation that I have in my feet. It feels as if I am standing in boiling water. The burning sensation is caused due to nerve damage from all of the radiation and the thymoma. The burning pain never goes away. And then there is also the back pain that never ends.
In 2016 they removed a small tumor that was at the side of my neck. Luckily the tumor was very loose and it was easily removable. In 2017 they removed a tumor that grew inside my airway just where the airway split into my lungs. The same doctor that removed the tumor in my heart removed the tumor in my airway. Once again I received radiation. The pain that comes with the cancer is unbelievable. I even had to stop working because off the pain pills. It started to affect me up to the point where I started making mistakes. The pain gets worse and worse. I am only human. How can one person endure so much yet not give up? I will not give up.
In 2019 we found that I have a 10 cm tumor in my liver. I already know what lays ahead, radiation and more radiation. I spend my days in bed, because of the pain. Recently they found new tumors that can easily be seen from the outside of my body. There are two tumors on the left side of my back. I still need to go back to see my doctor. COVID and funds have stopped us in our tracks. I’m now 50 years old and no man should ever go through what I go through every day. We have exhausted all of our options and we are all emotionally and psychologically tired. I ask that you please find it in your hearts to help me and my family. Even the smallest kind act will be appreciated. I also want to say thank you to everybody willing to help me and my family. I wish I could shake you all by the hand and thank you. I just want to say… Thank you so much.