Stefan's story

August 3, 2020

Stefan's story

I want all cancer patients to have access to the privileges that I have experienced – to the expert treatments, to being given a new lease on life after standing on an abyss. To be able to go beyond saying ‘I am a survivor’ to saying, ‘life is a precious gift and it’s great to be alive’.

I’m Stefan. I’m a co-founder of Digestive Cancers Europe and was the organisation’s CEO from 2019 to the beginning of 2021. I would like to share my story with you.

I would describe myself as a happy metastatic colon cancer survivor who had the luck to have access to the best treatments. True, I still have limited feeling in my fingers and in the soles of my feet, and I am very sensitive to gastrointestinal infections, but these are just minor things. Many other survivors face more challenges than I do. I can live my life as before. My quality of life has not suffered, despite the heavy surgery and complications and the miserable six months of chemotherapy. I am alive.

For me being a survivor is more than just survival. You have looked death in the face. You have stood on the abyss, with half your feet above the void, and then you got pulled back. Despite the fact that you had already calmly accepted the inevitable, reconciled yourself with it, considered the fate that gives you now the ultimate peace of mind. If it happens, it happens. This is a moment of bliss. The acceptance of death. This beautiful calm feeling. You worry about your wife and children and how they will live without you. You feel sorry for them. You know you’ve given your best for them. You wish them well. You’re not concerned about yourself anymore.

But then you survive – you are privileged. You have some minor consequences, such as neuropathy explaining the loss of feeling, and sure, your system does not work as before, but soon you’re back on your feet. The twenty-centimeter scar in your abdomen closes, the severed pieces of your colon grow back together and you wonder about the actual healing power of the body itself.  I can play sports again; I have gone back to my volleyball team for competition games every week. I now play tennis every week as if nothing has happened. I can work like before, possibly with even more energy than ever.

And this is despite the cancer always being present. When you feel bad, it may be a recurrence. There is some lingering nagging minor pain in my belly that never leaves. I am sick more often, with the stomach pressure building up like in the worst of chemotherapy moments.

Any minor issue upsets my wife. Anything that we do not disclose to the children enrages them. They have a right to know. They say that “we’re in this together”. They want to know – good kids. We can travel (under normal circumstances, without this pandemic), but even then. How far do we go? And where is the nearest good hospital? Complications may happen.

There are also of course the quarterly medical checkups. The moments of truth. The CT and MR scans, the regular colonoscopies. I have the additional gastroscopy every six months, which I dread even more. These are also moments of anxiety for my wife. Are you still OK? Are you hiding the pain? Sometimes she questions my honesty. She suspects that I’m trying to protect her and the children by not saying everything I feel.

But as I said I am one of the privileged ones. The physical consequences are minimal. I have no professional consequences (yes, I changed my career, but that was my personal decision). That is not the case for many other patients in my situation. They suffer financially and professionally. They wrestle with their self-esteem and as a consequence, they suffer in their relationships and in their social lives. The clinical aspect is such a small part of the illness and I am convinced that survivors live better if both their physical and psychosocial conditions are nurtured toward better health at the same time.

Twenty years ago, or even ten years ago, I would have been dead. Today, I am alive. I’m a survivor (medically speaking only until the end of this year, the term is only applicable to those up to five years after the end of their treatment). But I’m so much more than just ‘a survivor’. I have my life. And it is more valuable to me than ever before. Every minute is important. Every person is important. Every situation is precious. Every friend, every member of the family. Everything is more intense. More rewarding. I want all cancer patients to have access to the privileges that I have experienced – to the expert treatments, to being given a new lease on life after standing on an abyss. To be able to go beyond saying ‘I am a survivor’ to saying, ‘life is a precious gift and it’s great to be alive’.

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