Graduation day

Yesterday was a day to remember forever. I ran up the stairs to catch the train and felt a new level of energy. I told the nurse that I felt great, making her smile. Dr Namikawa was very pleased that my anemia was improving with the ion supplement. He continued saying that I could stop with infusions. It didn’t sink in immediately.

He asked me if I wanted to still have an infusion after the scan next month, and I slowly shook my head while thinking about that choice. This decision to stop treatment would only have been made after approval of all specialists and the head of department. That meant I was really confirmed to be clean. I wished him and the nurse a Merry Christmas and went off for my regular lunch and wait in the que for treatment.

The nurse who prepared the infusion smiled at me. Normally I would just quietly undergo the preparations but as I felt brimming with happiness I couldn't help say that this would be my last infusion. She smiled even more and said: ‘It’s called graduation day’. I repeated the word and liked the feeling it gave me. I fell asleep immediately once the anti-allergy medication started flowing through my veins for the last time, followed by Opdivo, also known as Nivolumab.

When it was all over I thanked the nurses, bowed deeply and waved at them while walking to the front desk where I thanked all as well. More then 2 years they had taken care of me... tears started welling up when I said all the sweet familiar faces goodbye. Slowly it started to dawn upon me what was actually happening to me.

Nothing happened in the bus, in the train, and while walking home. It was just as if nothing had changed. I sent messages to my family while they were still deep asleep. Friends in Australia and Singapore responded making me feel so happy. When I arrived home I hugged my wife and felt safe and at peace.

My friend in Holland who works night shifts responded and asked me if I ever thought of feeling cured. I answered him that I didn’t. It would be impossible anyway as the melanoma cells can’t be seen except for the damage they do. I told him that I have peace with the idea that I am clean on the scan, and that I patiently wait for things to happen.

I don’t need to go back to my old life. I am happy with who I am, what I can do, the regular CT scans for observation for the rest of my life.... I am happy the way I am and enjoy the small things in life. No sorrow, no fear, no desires. Just being with family and friends is what I wish. A simple life.

Looking back before infusion 53

It’s a lovely autumn morning, the sun shines and I watered the plants after bringing my daughter to the train station. Had breakfast and a coffee and all that action before 7:30. Today is a normal day after so many visits to the specialized cancer hospital in Tsukiji, the famous place in Tokyo where the fish market used to be.

I have come to approach the treatments as a meditation in itself, settling into a frame of mind which accepts and soothes any burst of anxiety. I am following after all a very new type of treatment for a sickness which was lethal only 5 years ago. No longer! Melanoma is no longer a death sentence as long as it’s found early.

I am so fortunate to live in this era and to have decided to switch hospital, country and treating doctors immediately after surgery. I read that this is not practiced in Holland. Many patients just follow the family doctors advice without getting a second opinion. My wife flew to Tokyo to visit the specialized Melanoma hospital which had access to the latest and most advanced treatment methods.

Such advice is hard to find when you are in shock with the news that you will die soon. Clinging to any advice which feels comfortable is what most patients do naturally. However, we studied and studied and asked questions until we had found a sufficient number of fall-back plans. I don’t know how to urge patients to do this as many stick their head in the sand and pretend it will all go away.

My book about my experiences is coming along quite nicely, I just wonder when is the time to get it published. Publishing itself has various possibilities, and I had no success in getting response from publishers. I will publish it myself I guess, as there are many online services these days. The decision that it’s time is not easy as I am still in the middle of recovery and my scans are not 100% clear.

I therefore hold on to it a bit longer, and add chapters during holidays and whenever I have time spare. Recovering my energy also has the fantastic sensation that I am too busy to write. What a difference with a year or so ago, when I sat in my chair thinking of activities to keep my mind distracted. Quite a tour de force to accept I will never return to the life I once lived and loved.

I listen to meditative messages which organize my thoughts. The risk of letting my thoughts run wild and play games with me is that I become depressive. It’s imperative to keep a sound and healthy mindset with a balanced and active body so that the chemistry in the brain stays in balance as well. The calmness which I feel is a result of all that effort.

Mind you, I had my ups and downs as I am super lazy and gloomy by nature. Pushing myself to find new passions other than work has been quite a challenge. Most people start doing this after retirement, so in a way this sickness is a blessing in disguise. I feel fortunate that I now have plenty of hobbies and ideas well before I will be blessed with pre-retirement next year as 60 is the age set by law in Japan.

A new phase

For a month I am taking iron supplements to recover from anemia. The low levels of red blood cells have been there perhaps even before treatment started. The result of taking these pills I s that I get more energy and am able to undertake new activities.

This gives great satisfaction as I can participate in normal family activities again. Looking back I had accepted that my wife and daughter would go for movies, follow classes, concerts etc and I opted out time and again. This has become a pattern and they stopped asking me.

Deep down I had to admit I missed the fun even though I had accepted it as part of my recovery. Going through the side effects of regular infusions I had come to dread and accept the constant lack of zest for life. Not with sadness, but with a new kind of patience.

Now I feel different, my sense of smell and taste has returned somehow and I even visited Singapore for a short business trip. It’s like I live life again without thinking about it. Of course the defrosting of my shoulders also plays a big part in this.

All in all, the change is for the better, and I am looking forward doing things together with my family during the upcoming Christmas holidays. 3 years have passed since I was getting ready for the operation to remove a polyp. 3 years .....

Stress

The week after my infusion is different than before. The Monday started with a distant headache which only disappeared after the noon nap, and a brisk walk in the cool autumn air. The days that followed were different. I felt pressure building every time I felt a tension rising either at work or simply in a movie.

The rising tension made me feel nervous in an uncontrollable way. A normal stress situation would just require a cool head, a mental decision to defuse the tension or a mental decision that it’s not my problem to fix. But this week I somehow wasn’t able to make that mental shift happen. I felt lost and worried all the time.

I had a similar experience in India where I had a type of pneumonia caused by Mycoplasma. The effect was that I wasn’t able to handle more than one thing at a time, and had to take a break from work as soon as I felt my temper rising or my mind go into abnormal overload. I took me 6 months to return back to normal.

I feel anxious and tired after a few hours of focussed work. I should remember that I have a tumor in a brain artery and that with increased stress it may cause pressure in the brain. This has happened several times and it’s not easy to predict how long it will take to recover. It may soon pass or last for another week, who knows. Working on my model yacht and working with my plants helps calm me down.

Status update

Last Thursday I went for infusion 52. As I planned to discuss when to stop treatment, I was a bit surprised with myself that I didn’t push for it. Dr Namikawa’s expression was so hesitant in agreeing, and repeated his statement that we could stop based on my request.

I listened to the detailed analysis of the scan, and it read that still several tumors where remaining albeit small in size. This report has not changed much in the last year, so I am really not sure what to do with it, other than ignore it. Tumors in brain artery, gallbladder and left-kidney are still all there.

So I told him I wouldn’t mind continuing the infusions and meeting him every month. He smiled kind of relieved, and with that I set off to queue for the infusion and have a light lunch. Somehow I felt relieved, also because stopping would be a risk after all. Having growing tumors is a message nobody looks forward to hear.

The days after the infusion were as before, dizziness, tired, sleepy, etc. Nothing to be happy about, and I am glad it’s only once a month now. Today I feel better and ready for work again tomorrow. I started working on my model Lemsteraak again, also a sign that things move on in my mind.

One thing I did ask for is iron supplements to resolve anemia. This had been persistent for 2 years and might be one of the causes of lethargy. Let’s see what the blood tests say on 12 December!

How Japan heals me deeply

In the immediate period following diagnosis everything had to make way for devising a treatment strategy. A profound insight into what surviving cancer actually means happens when you realize you need to plan again for your retirement. This covers matters relating to finances, location, activity and so on.

I still remember the moment the naked reality of dying hit me like a blow of a hammer. It felt like all protection you take for granted in life has vanished. Nothing stood between death and life as I knew it. 

We have been blessed that the treatment strategy has worked, supported by miracles and finding the right specialists. Gradually the urgency of treatment faded like seeing the sun breaking through the clouds after heavy weather. Not the eye of a Typhoon, but a change in cloud patterns and shifting winds, heralding better weather was on its way.

This week something changed when I was offered a renewable contract after reaching the age of 60, which will be in May 2020. Suddenly I felt relieved from the burden to find a source of income sufficient to pay for my daughter’s schooling. This burden had gradually and unconsciously built up in the wake of the receding storm. 

What a relief came over me in the days following that meeting. I also realized deeply that the involved Japanese manager was trying hard to resolve my plight by resolving his own lack of strategic management resources. This made me feel so useful again after a long period of sickness, pain and lack of energy. 

His exact words moved me deeply: ‘Now I am going naked...’ as he wrote the offer on the whiteboard. Being naked equals being completely honest with each other, and it’s why Japanese enjoy sharing a hot bath with others. Passion suddenly burst from my heart again when his hands closed around mine. 

Sharing such a deep sense of trust was so profound, so moving. This is a clear example why I feel so close to the people in this country. It has become a driving force in my recovery, like the light of Angels, bringing comfort, hope and guidance.

2020, a year of change to look forward to

About a year ago I made so much progress with recovery that I felt it was the right time to set a target date to be clear of all cancer. I chose 27 Oct 2019. It seemed far enough in the future to have a fair chance, and close enough to look forward to.

27 Oct 1989 was a happy day for us in a castle in Holland, where me and Yuka were married, surrounded by close friends and family.

24 Oct 2019 was the day my son received his Bachelors degree in Physics at the University of Groningen. We couldn't attend, but seeing a short movie and pictures made us feel so proud. He will continue his studies for Masters in Industrial Engineering & Management. We will travel to join him when he gets his masters degree.

Today I look back on a month where my oncologists agreed to stop the treatment in early Jan 2020. That is exactly 3 years after I was diagnosed with cancer. Stage VI used to hopeless but my case has proven that there is hope even in the final stages of this dreaded disease. 

2020 will be a year of change. The Olympics will be held here, and after retirement in June I will start my second life with work I can chose and with new motivation. 

Rewire and refire! That is what I have decided to call my retirement. Yes!