Coming home

The first things you cherish once back home are sooooo many.
Washing your hair properly while taking a hot shower is close to the top.

Being discharged gives a sense of progress hard to find so clearly elsewhere.
Planning treatments now gives way for a period of rest. Recover, reconsider, remember and forget.

Even a positive and powerful spirit I have found myself to be needs to be realistic this journey has just begun. It's a new journey which one could give names related to what started it all.

Going through so much in such a short time, sharing it all with friends and family.... I am grateful for being loved for who I am and love unconditionally. Thank you all for your support. I love you.
Especially I love my wife who pulled me through and planned everything. I love you. There are no other words to express what I feel.

It's all destined to be. The specialists, the available technology, the connectivity, the Hand of God in all this, and most of all, the grace of how it is all orchestrated by Him, and brought to the best possible end imaginable. How blessed we are.

So I rest to begin a new day refreshed, and refresh my love of life. Rest to plan schooling for my daughter, starting a new life in Tokyo, have a relook at how I approach the challenges at work.

And yes, I rest until the next scan and following treatment.
But that's just part of life....
Enjoy the ride!

Post-operation

The surgeon explained that all left sinuses were filled with tumor, pushing against the eye and punctured the brain fluid.

Just in time. He prayed and thanked Jesus that he could clean it up. My nose was pulled open to be able to reach it. Also he had to fracture the eyesocket to reach the upper sinus. A small plate is put in place.

The neuro surgeon said he lives Holland and visited me explaining how he is draining the fluid from the spine to prevent brain infection.

The anestesist came to say hi, thanking me for being such a kind patient to treat. He commended the surgeon cleanup job.

The special online hystopathology mobile lab helped check what he scraped was melanoma or healthy. That way he kept on scraping and stopped when he reached healthy tissue.

Now its up to my body to stop growing new melanoma. Healthy life style is key and regular checkup.

Permanently return to Japan

I heard today that the company decided to repatriate me to Tokyo before 1 July. This is part of standard policy when staff get very ill while posted overseas, and the other side of being an expat: you can be called back anytime! Anyway, its better then the 1 April which was earlier imposed which would have disrupted my treatment and give us tremendous (unnecessary) stress. The letter I have written to management to ask for flexibility in the return date has worked. Thank you for that.

This new date gives us time to plan the move after my treatment has been completed in April. Especially for my daughter we have to find suitable schooling, and live nearby so she doesn't need to travel by overcrowded trains. Can you imagine an 11 year old girl? My wife will have to bring her and pick her up from school, so I will gladly sacrifice 2 hours per day to make that easy and short for them.

With that 'surprise' out of the way, I can and will now focus on getting well and as a family we can settle back into Tokyo lifestyle with its pro's and con's. We will be able to enjoy the autumn and I look forward visiting the many parks for my long term recovery.

I keep on looking positively at these twists and turns in life. As my mom would have said, it's no point to swim against the current, and we will be able to make the best of it. Enjoying the ride, including the ups and downs!

4 days to go to surgery

I went to Church with my daughter. I didn't feel well due to nose bleeds, coming from the upper left sinus. It makes me feel weak and not confident, and many times during the service I fell silent. Feeling the hand of my daughter made me recover and together we enjoyed singing.

My wife is still in Tokyo, wrapping up her visit to the Cancer Center. She will arrive at Changi airport at midnight.

Friday I talked to my brother, who likes to visit me after surgery. I told him that it took 2 weeks after the last surgery to recover sufficiently to receive visitors. So he will plan a visit in early March. That will be nice, depending of course how fast I will heal.

Yesterday I talked to my son. He plans to visit me in Japan during the treatment preparations but has to return before April, as he will have exams. I will discuss with my wife how to plan the preparations in the latter part of March and treatment in April. Language is really an issue as the complex terminology and unexpected questions give me lots of anxiety.

My mind is playing games with me, fear for the surgery is sometimes stronger than my will power to stay positive and healthy. I wake up in the middle of the night worrying not being able to talk to doctors in Japan .....

Proton beaming is possible!

My wife received good news during her visit to National Cancer Center in Chiba (Japan) yesterday.
The proton beaming treatment provided there is available for me. However, surgery is first required as there is too much tissue in the sinuses.
This is the latest plan:
- 16 Feb surgery in Singapore
- 4-6 weeks recovery in Singapore
- 2 weeks beaming preparation in Japan
- 2 weeks beaming in Japan
- stabilize and return to Singapore

The doctors in Japan are very confident. 1 May all treatments will be complete.
The body then can become healthy naturally.

Lets not get too excited, and consider that not everything can be removed, or beamed away, but treatment without chemo or X-ray radiation with it's side effects is what I was hoping for.
Now I need to get myself ready for that drastic surgery.....

I go to work in the mornings and see what I can do. I notice I am not interested in the details, but do enjoy reviewing progress, and getting up to maintain a certain rhythm. My staff and boss appreciate me showing up and this gives me strength.

Be strong, be positive and think about that it will clean-up what ever is remaining. It's not removing anything I might need in the future like other patients have to undergo.....

Confirmation

Today the following reports came in:
1. C-kit and BRAF mutations are not present in my genes.
2. Biopsy of nose tissue samples are positive on Melanoma
3. MRI show many pockets of unusual soft tissue and mucus. Eye socket is not penetrated.

This soft tissue can be there because of
- buildup due to blockage of nose by removed polyp,
- current inflammation,
- other polyps,
- tumor etc.

Recommended action:
Recommended cause of action by surgeon is to perform a cleanup operation. Incision from eyebrow to bottom of nose.
- This should be done now in Singapore and there is without waiting list.
- The operation can also be done in Japan, but after visiting and confirming how to clean the sinuses, there is a waiting list of about 2 months.

2nd opinion:
The surgeon agreed to get a second opinion from melanoma specialist in Japan.
My wife made an appointment and will fly there next week. Probably they will not treat me due to the fact that an operation is possible as first course of action. We will seek their opinion on follow-up treatment after operation.

Tomorrow

The strong wind,
feels different.
Rays of the sun,
warm deeper.
The gentle river,
flows smoother.
A taxi driver's smile,
appears beaming.
The day is just brighter,
my step is much lighter.
Happiness explodes,
erasing dark episodes,
Waiting, blocking, no more
let my laughter roar
A radiating smile I feel,
hoping to end this ordeal,
tomorrow....