Purpose of this blog

My name is Cor and this is my story dealing with mucosal melanoma (MM) in my nose which was diagnosed on 10 Jan 2017. I am married and have 2 kids. I write and update this blog to reach out to all my loved ones far away with updates and my state of mind and also to share information with other patients.

Sunday, June 25, 2017

Life is beautiful

Life has returned to normal. Health is great, work is back to normal, I swim again and enjoy The small things every day.

The nerves are all growing back, the hardness in nose and sinuses due to radiation is reducing as the body heals itself. Even the tube draining tears from the eye into the nasal cavity has somehow grown back. The body is beautiful and I love taking care of it through a healthy lifestyle.

The last week in Singapore brings emotions and the hassle of packing. My wife will handle the moving as I shift a month early. We found a lovely house with lots of space (for Japanese standards) and she has a million ideas to decorate it.

Amazing how flexible we all are in accepting change.

Sunday, June 04, 2017

Change of perspective

I enjoy the last few weeks in Singapore, going for walks, reading in the shade on the balcony. Have a glass of wine with Dutch cheese, watch a game of soccer in the hollow night when sleep doesn't come. Go for a massage undoing all knots, both physical and mental. Communicate with all loved ones and share my tangled emotions with my loving wife at 5am until they unravel and the emotional knots come undone.

My ship of life appears to have come in calm waters, shielded from stormy weather by His ring of reefs, like the American cup trials where super yachts lifted by foils zip around on mirror-like waters in Bermuda. I watched the cup defenders train in the early 80s in the very same spot, arriving from New-York after days of stormy weather.

My Captain has handed me many new sets of sails and a steady hand in the voyage of life. While next generations get on the water and practice, it's time to accept a new role and become one with the ring of reefs. To enjoy the honor of shielding those spotless white sails from tricky winds and keep their gleaming hulls away from the blunt energy of blue water waves.

Let them zip along on mesmerizing foils, at speeds far exceeding that of the wind. Callous skin grows where blisters pop, breaking backs straighten and stiffen. Let them taste the salt, feeling the wind in their hair, singing songs in their ears, sensing the sting on their skin. Laugh with them feeling a deep sense of pride.

Change becomes constant

On 21st August I will undergo a full scan of my body. In the run-up there are quite a few things going on.

My health has recovered from a terrible cold which I caught during my first business trip after treatment. After 2 weeks without medicines, struggling stubbornly, I was 'coincidentally' called by my surgeon for a checkup. He said he missed me, and so I went. Upon entering the treatment room, we embraced and greeted like old friends. He checked my nose and found it to be perfectly in order. He asked about the radiation treatment and found I had a swollen lymph node in my neck. It could be because of the cold so he prescribed antibiotics which I took like a lamb. He prayed for me and said how wonderful and trusting patient I had been. It had made is work so easy. Others showed glaring mistrust with family members interrogating him every step along the way, suing him for millions when things go wrong.

I took a day off to recover from dizziness and a swollen cheek.
Stupid to be so stubborn in searching the new limits of my health. But, as I written to my siblings, I had reached a point where I had to decide (at least I thought I had that choice) between taking it easy and go with the flow, OR push the limits, start new activities and give myself tangible proof that I was healthy. So I found out it was not a choice, I had to go with the flow but not be scared to try new things and enjoy life and eat it's sweet and sour fruits.

At work I am preparing for a make or break presentation and workshop in Bahrain about Agile Project Execution. This is the transformation in engineering, which started about 2.5 years ago. The result will be presented in a Global Sales meeting in mid August in order to get support from all sales managers, followed by their sales staff and when they sell the concept, all engineers. It's quite a mental pressure so I delegate.

Moving house in two steps is a test of how I can let go of it, and leave it to my wife and son to manage. I will have a quiet time in Tokyo while they handle all the logistics. The thing I can do is to make sure the housing is decided early, so that will not keep on haunting me at night. An example how crazy my mind works is that I worry about where I can do my laundry while camping out in an empty house. I found a coin laundry down the road. My wife will order rudimentary furniture and futon on-line, to be delivered on the day after my arrival. Let it go.

While this is going on, I need to keep my mind from falling into the trap of thinking too much about the MRI result last month where suspicious activities were found. This dark cloud in an otherwise rather clear sky can easily grow into a huge cumulonimbus. Live in the now.

Thursday, May 25, 2017

Checkup

I went to the hospital in Chiba for an MRI of my back. I was surprised how calm and composed I walked around in the hospital. Actually I had strange thoughts as I walked around for an hour, waiting for the result. I looked at all those patients, from primary school to retired, and I kept on thinking that I was the only one without cancer. Very strange and not logical. Was it a defense mechanism?

I enjoyed sitting in the hospital garden, next to a waterfall, recording short video messages to my family. The sun felt warm on my face, my skin completely healed from the radiation burns. That's when I was called by the doctor's office and I walked slowly along the flower beds and greenery, greeting a young couple with a bald child in their arms. Our eyes met, and we shared so many emotions in that split second.

The doctor received me with his usual smile and showed me images with a small grey shadow. He said it had grown since the MRI last month. It was suspicious activity, the description I had come to dread since I had heard the same about my hip bone in Singapore in January. That suspicion had turned out to be nothing. As I had no pain symptoms the doctor said we would wait with next MRI's until August. 3 months...

Dr Zenda explained that he would then decide to start Immunotherapy, Nivolumab, to stop and reverse POSSIBLE spreading of melanoma and seemed happy that my wife and son would join then so he could explain more details. He had informed my wife that he had confirmed that the melanoma had not spread to lungs, liver, prostate or other organs. So starting with medicins would have to be based solely on the result of another set of scans of my back and head.

Relieved yet concerned, smiling and wondering to be alarmed or not, I shook dr Zenda's hand and thanked him. I took a picture of the screen where the blip was highlighted. I felt peaceful and reassured. Back on the bus to the station, I felt healthy, calm, serene..... I smiled at my fellow passengers as they changed seats, complaining about the hot sun, grilling us in our seats.

Wherever they moved, the sun would find them again as the bus turned and turned through the narrow streets of Kashiwa. Sweet afternoon sun, thank you for warming me, making me feel alive!

Tuesday, May 23, 2017

Dark clouds

Dark clouds afloat,
Cats n dogs soak me?
Lightning will strike?

Shadow shields the baking sun
Silver linings give me hope
Drops nourish the greens

Its how you welcome,
the role they play,
how nature's design,
created them, perfectly.

Saturday, May 20, 2017

The river carries me along

After spending a few months lying on the river bed, the current of life has lifted me again. The blessings of regular life make me float, light in the head. A cold comes and goes as the freezing water  tests my body, builds my resistance. How simple the rules of nature are....

Follow the rules to sustain the earth and that behavior will sustain you. Love with all that's in you and love will carry you to your destiny. He may at times leave you alone, struggling with the currents and the coldness, but surely His hand will lift you when you get stuck.

There is no loneliness when all you have, is received to help you along, to feel whole and worthy. Finding the path is not through choosing, but to surrender to the eternal flow. So it was, and so it will be. Learning from elders and passing on to children is fulfilling.

Tuesday, May 02, 2017

Day 19: change for the better

I have been going to the office for a week now and enjoyed a long weekend. The itching cheek has healed and the itch shifted to the eye lids and eye. Putting eye drops in helps for 20 minutes and then I really have to rub the eyelids! So I put Vaseline all over and this eases the itch. It enters the eye, but that is easily washed away with drops.

Another side effect is the pulling eye, which was bad after the operation and returned. It's bearable and with sleep the pulling reduces. The heavy feeling in the nose and the brain behind the eye are probably also side effects, which is worst when I move my head quickly. Just taking it easy therefore and a day at a time. Accoriding to the doctor all these side effects will reduce with time.

This is the radiation at work in healthy cells. Just need to be patient. A colleague shared his experience today: After an operation his doctor said: the trouble with engineers is that they think the body is like a machine: just open it, take something out, and it will just continue as it was.

Exactly! That's how I want my body to recover. But obviously it takes a lot of time, the wiring has changed and the body will recover in a new way. That's the miracle of being a living organism. Nerves do grow back, but in a different way with new sensations! My nose doesn't itch on the skin, it itches deep inside where 6 weeks ago I felt nothing. It's hard to scratch deep inside your flesh.

I started doing light excersize to improve blood circulation and this raises my energy level. It feels great to do push-ups, work out on the rowing machine in the gym and walk up the steep hill in Fort Canning park. Life needs to be lived, action!