Survivor (English version)

28-02-08:

That are the questions that I get very frequently. I rather give as little as possible attention to my tumor-terrorist, because I don't want to let him rule my life as he is already taking too much control over it. But on the other site I should also (want to) ask these questions to somebody in a situation like me and that is why I will work them out for their who are really interested.

How it goes with my:
At this moment everything is excellent with me. That is also the strange, and maybe also the cruelty of this diagnose. They told you that you are terminally ill and that it can blow out your candle every moment (no matter what you will do and how carefully and good you will or have lived), possibly first with a undefined nightmare period where you will become permanent handicapped. But before they send you home they tell you that it can also take years before that will happen and till that moment of countdown you will be physical and mental as strong as you always was. It's just a time bomb from which nobody knows at what time and how it will become fatal to me. It's a terrorist straight under your nose but you can't get any clue what he is doing.

The only clear change after my diagnose is that I am enjoying, even more than in the past, every hour that is giving to me in good health and I am started to do things where I had never allowed myself to make time for. You can say that I feel myself on many points skipped from an age from 38 to an elderly old person.
Beside that my diagnose has made me a volunteer from the Foundation "Stichting STOPhersentumoren.nl", a.s.a.p. translated in English on www.STOPbraintumors.org. I had already a masterplan made till my 70th year of age. But even if I would be able to fulfill all those plans and my dreams and that made me super successfully, then it would be still the question or I, with my Christian and socially soul, might ever become part of such a nice job as the foundation "Stichting STOPhersentumoren.nl" is doing. I really think that this foundation under the driving force of their, from my point of view, genius chairman can and will make a difference on a global level. A difference on the area of human welfare and the battle against cancer which is a terrible disease that is already hitting 1 of the 3 people personally, and then specially for the Cancer-underdog, named Primary Brain tumors.

How do you life with this:
Why am I still working, study en laugh like the way I did before this terrible diagnose.

Naturally do I feel the pressure of the sword that hangs above my head and can become fatal or harm me for life at any time. But I have been a fighter all my life and this is not my first, in my eyes, unequal struggle that I have to fight. Yes fighting against it is what I will and have to do. I will never become a little dog with self-pity that will lie down on his back at the moment I am looking in the eyes of a tiger. That can even never be an option for me because of the 2 very little puppies I have just put on this world and the responsibility I have to coach them as long as possible till they become totally self-supported.

Beside all above the doctors told me that it can also last for 10 years before it will change something in my life. In 10 years there can change a lot, even in the already almost 20 years not progress making research on primary brain tumors, so maybe I still will reach my dream age of 104 years old in good condition. I am working in the banking industry and together with some of my own philosophy I want to say: In the past NOT reached results are giving EXTRA opportunities for the future ;-)

Already from my childhood I always search for song texts to cope with my feelings. That is my way to deal with emotions, appended with a very good trained way to put things into perspective.

Below I will try to give you a perception of how I am progressing this kind of things in my damaged brains. It will become al long and probably boring story, as most of my friends know me, so feel free to quit at any time. It will probably also break down my image of a few of my friends who still thinking I am clever and mature, but my hope is that by giving this soft side of me to the world, maybe I can help a partner in distress.

My song:
At this moment I am listening a lot of times a day to the same song which I have installed on my telephone and hear by an almost continue and invisible installed little earphone in my ear. The song is called "Eye of the tiger" from the rock group "Survivor" made for one of my favorite films "Rocky" (see the attached film for the accompanying pictures and sounds).
I will try to explain how I translated this song (in my mind) and why I feel myself so associated with it. Always, but especially the last month's.

It's a story about a poor boy. Born poor, never got anything for free in his life and really have to earn everything he has established with his own hands and brains as a tough and fair player with a Christian faith, taking the little changes we all get in life but most don't pick up. Money is and will also for this boy never been a motive, it's the focus on his dreams and passions that drive this man. A story of a boy that has proven that this basis in companionship with a great wife can make you very rich (unfortunately I have always searched but never got a person as his devoted coach but I am blessed that my wife has been taken that role also on her shoulders).
But if you think you are finally on the top of your happiness, and no problem can ever take you down from that anymore; Then your world explode by a suddenly very unexpected and unfair cruelty that you couldn't foresee which turns your world upside down. And then you are back on street level and you get forced to go back to the boxing ring to fight again your way upwards. But you have learned to fight. You are not the kind of person that will ever giving up. You will never pine away in self-pity. His life has transformed him to a fighter, he thinks as a fighter and that is just logic if you have the feeling that you have had to fight for yourself all your life. You learned to focus yourself on your goals, make quick decisions, take all the chances you can get and developed a giant survival power. In brief the skills that you need to become a survivor, even in battles from which most people are thinking they cannot be won. My opinion is that I have to fight this kind of battles, not only for my close family and friends, but especially for them who already died of it or will get attacked by these terrorists in the future. Not every one is blessed with survival skills and have the power like people as me. Especially also for this group I will fight, no matter what it will cost me.

If you listen to the song than it has a kind of heartbeat at the begin that stays coming back during the song. When I hear that beat than I associate and visualize it with the hartbeat of my biggest (and only) enemy, my Primary Braintumor that is weaved deeply in the rest of my life. The irregular harder bangs associate I with the beats that I am giving to my tumor when I am eating, do or refuse something which he don't like. Like working for foundations against cancer, drinking green tea and that kind of things from which is proven that tumors don't like that.

When the films continue it shows that the battle first becomes very heavy, like always with this kind of difficult to win battles. You get hit all over. It will give a lot of pain and fear to you and your nearest people. But Rocky stays focused with the eyes and instinct of a tiger on his enemy and there is nothing that will disturb that, no matter what other people say or do. At that moment you are just a man, like a tiger, with a natural will to survive and never give up for the people you really care for.


A little step sideways from Rocky, I have to emit that it sometimes needs extremely power for me to laugh with so much misery in my head. Beside I have to tell that the 3 monthly MRI-scans that I will have for the rest of my life feels like playing Russian Roulette. Every 3 months I will get very near confronted with a malicious destructing enemy, the most dreaded disease to look what progress he have made in the last months. Next to it there will be always a heavy decision moment. Even if I decide to do nothing because it looks like the situation has been stable for the last 3 months can that decision become fatal like a bullet to my brain still on the same day or short after. Another 3 months doing nothing can also with an already years stable looking tumor mean that the next MRI-scan can be far too late. Deciding well to do something like surgery can also have the same bullet like destroying consequences. It feels to me as standing with you back to the wall. You can only hope and pray for the best and a little luck at every decision you are forced to make time after time and in the meantime prepare you and your family for the worst. A fact is that there is a very malicious terrorist on my central coordination center that can hit me anywhere and anytime he want. Brain cancer, like I have (primary brain tumors) is the only form of cancer that has total control over the patients physical AND mental steering. It's for people like me unbelievable that there is so less research on that point done. Nobody knows where and how it will start his deadly attacks and or he will allow me to react after his first hit and how much time and power there will be left for me to react. But one thing I can guarantee everyone for sure. I will not show any fear and run away from it. I will try to move heaven and earth to do all I can to get him and all his following bastards (now or in the future) attacked as hard as possible till the day arrives that they are losing control over human lives. Because don't forget, this disease can really hit everyone at any time and I am just lucky that I got an early warning by having an epileptical insult. These rebels are till now never really beaten by our humans and so they became one of the most freighting disease. But there will be a day that they will be de beaten! There will come a change and hope for the people who knows they have a brain tumor. One time somebody will start a wave that will become that powerful that even the devil of the brain tumors will start running. Till death tears me from earth I will be one of the people who will try to make that change for human welfare as soon as possible. And I am more than blessed that I have finally find my dedicated coach for this battle in the Dutch Foundation "Stichting STOPhersentumoren.nl" which I will assist, among other cancer foundations, as good and as long as I can. Rocky's film is a symbolic presentation from the worldwide cold war that was actual on the time that movie starts. Now there is a new international war. A war between Primary Brain tumors and human welfare. Please help the cancer-underdogs and support the work like the foundation "Stichting STOPhersentumoren.nl" (soon translated on www.STOPbraintumors.org) is doing!

Summarized:
I have no other choice than go out and fight it. As my dear friend Thejus told me lately:"What is life without hope? Let's hope for the best but prepare for the worst!. Something good will certainly turn up!

Nico Faaij

Volunteer at Stichting STOPhersentumoren.nl
(= Foundation www.STOPbraintumors.org)