Choice of location for the clean-up surgery

When my wife visited the National Cancer Center in Chiba for a second opinion, she was very pleased with the well organised method of cooperation of specialists as a team.
Our experience in Singapore was that we had to get ourselves educated quickly in order to be able to ask the right questions to reach the best conclusion.

In Japan, the specialist were all gathering and openly discussed the options with my wife. They concluded that the cleanup operation was not possible due to size of the tumour.
The proton beaming would be possible once the tumour had reduced in size by medicines.

The new immunotherapy drugs from the US were judged 'killer medicines' but the top oncologist present. He stated that the publications were not giving a true picture of the effectiveness of the new drugs as they were administered in conjunction with surgery. The effect of the surgery would have influenced the outcome, and he also questioned if all non-successful cases were included in the results.

So we were left with no choice then to proceed with the clean-up operation in Singapore and hope for the best. The proton beaming could then follow in Japan after 4 weeks of healing to minimise inflammation which had proven to make it impossible to discern malignant melanoma from inflamed tissue in the PET/CT scans.

Recovery Blues

The first days recovery were difficult. My body had not moved much in the hospital bed for 5 days due to the spinal fluid tap. This caused muscles in my neck and shoulders to spasm resulting in headaches and impossible for me to sit up. Anything in a sitting position had to be avoided.

So I went to see a physiotherapist, but the taxi ride was a hell. Immediately after being treated, the sitting in the car threw me back to pre-treatment status, so frustrating. So the next day I walked, which was good exercise but left me exhausted, not exactly what the surgeon had advised me.

The second major trouble was lack of sleep due to throbbing pain in the nose. It had been fractured to reach the upper sinus, and the pressure of thick fluid coming down to be drained were forced through the healing bridge of the nose. Painkillers (panadol) were not sufficient to make me fall asleep. After getting agreement from the anesthetist, I returned to the painkiller of the previous operation. He responded on Sunday morning within a couple of hours. Such a reliable and great guy.

After stretching regularly and sleeping perhaps too much in daytime, I had enough courage to go for a massage on day 5. This turned things around. All knots in my back were addressed and I could start enjoying the time at home. With the pain coming down and 5 hours sleep I suddenly felt things had turned around. I worded this feeling to my son as follows:
"I feel i am healthy again deep within. Its great to feel this confidently. I have thanked my Father for this. He worked with the surgeon, provided the tools, gave me a strong spirit, a smile on the face again to make you guys feel happy. Its done. From now its following the path we prepared. Great! And I love you for helping me get through this. Together we are strong!"

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.....