My message

I have received much feedback on this blog, how honest I am in writing down my experience and feelings. When I read how other patients and their care givers are struggling, I always wonder how my experience can help them.

A blog is one way to reach out as well as participating in a Facebook group. Each has a target audience and thus a clear objective. The blog is to keep family and friends informed, the commenting function was used by some and others responded personally by mail. The Facebook group is to share experience among patients and caregivers.

A book has the potential to reach a wider audience. However, if the goal of the book is unclear, the message and appeal to the audience is missing and nobody will be interested to read it. My experience will only be of value if there is a compelling message for that wider audience.

So who are these possible readers? What is their motivation to read my book? I have learned that patients and close family want to have information on the latest treatments and their side effects. Friends and distant family are interested in which support and actions are valuable and most appreciated in each stage of sickness.

General knowledge on cancer survival can also be a motivation for readers who are not directly related to a patient. Also, the earlier cancer is diagnosed the higher the chance is of survival, so it’s valuable to know which symptoms can predict cancer in an early stage. Once cancer is diagnosed, it’s valuable to know what to do (and what not to do) to increase the chance of survival.

Nowadays cancer is no longer a death certificate. This is very different than even 5 years ago. There are so many new treatments emerging that it’s important to get oneself informed about it. Knowledge of the possible treatments increases the chance of survival. Going for second opinions and learn about possible treatment options reduces stress.

Reducing stress increases the chance of survival. A positive mind searches for a way out. Having options reduces the chance of depression when a treatment doesn’t work. It sounds so logical, but when the first tell-tale signs of cancer appear, a typical human tends to ignore it and think that it will disappear by itself like a flu or a cold.

Cancer doesn’t go away without treatment and therefore requires an active and hands-on approach. Read up, get yourself educated on the latest treatments, and of course, live a healthy and preventive lifestyle. This is the message I want to share with you. My book should encourage and convince the reader that now is the time to start.

What a week!

You know me; once my passion is ignited I cannot stop until it’s done. This week started with renewed passion at work. I felt great and healthy so nothing would get in the way to work the whole week and push the limits. Everyday I felt exhausted, needed my lunchtime power nap, but I could initiate pending stuff and get myself involved in a new initiative.

I told everyone that I had recovered, and it truly feels like I am telling the truth! My energy is back at levels not felt for a long long time. I went with my family to see the last episode of STARWARS and I drove back after the exciting 4DX experience, with actual wind, rain, rocking chairs and being punched in the back. I had enjoyed it with all my senses!

Having so much energy left on Friday night at 23:00 after a long week makes me so intensely happy! Gone are the days of energy draining side effects. No more hospital visits every other week. No more. Just live a normal life, week in week out. Wow, I had forgotten how it was. Will I really be able to pick up my life from where I left it 3 years ago?

It sounds like a miracle, something cancer patients cannot dream of. Patiently and gratefully I accept every day as a gift, as life is given back to me. One day at a time, no plans, no wishes. Christmas carols all around and I feel reborn. Hallelujah!🙏

Updated history

6 Jan'17 : surgery in Singapore to remove a polyp, Melanoma is diagnosed

16 Feb'17 : maxilliary sinus and nose surgery in Singapore to remove Melanoma from nose and left sinuses

1-19 Apr'17 : proton beam radiation (5 sessions) in Kashiwa Cancer Center Tokyo

1 May'17 : starting work again (part-time)

25 May'17 : MRI scan finds possible metastasis in the spine

1 July’17 : Move permanently to Tokyo for treatment.

7 Aug'17 : MRI/PET scan, cancer in sinus and nose is gone! Melanoma has metastasized in the spine and other bones

9 Aug'17 : Melanoma specialist in Tsukiji Cancer Center proposes treatment for bone metastasis: one-shot strontium drip, followed by check-up after 3 months and then decide on Opdivo. Admission tests: blood, X-ray, CT-scan, ECG test.

14 Aug'17 : Strontium IV is not suitable for me as I have no pain. Also because the short/long term side effects are bad for the bone marrow.

21 Aug'17 : Start 3 months immunotherapy. 6 infusions of Nivolumab (Opdivo)

30 Oct'17 : CT scan, priliminary diagnosis of treatment effect, continue with Opdivo as there are many tumors in brain artery, liver, left kidney, spleen, spine and other bones.

1 Nov'17 : Decided to start a new life. Erasing the past in my mind and focus on living life as it should be lived: once. Enjoy the small things.

13 Nov'17 : CT-scan shows all tumours have reduced in size: brain, liver, left kidney, spleen, spine, etc. Start 2nd set of 6 infusions.

25 Jan'18 : CT scan shows shrinking tumours, ongoing repair in bones and a new swollen lymph node. Start 3rd set of 6 infusions.

1 Feb'18 : Start working 6 hours/day, 4 days/wk.

5 Apr'18 : The detailed report of the CT-scan is not in yet but the oncologist said it looks good.

10 Apr'18 : My radiologist is very positive that primary site is clean. Metastasis is also shrinking continuously, so he is convinced I will make it. 

19 Apr’18 : Detailed CT-scan report, infusion no18. Continue infusions for another 1.5 year (probably).

11 Jul’18 : CT-scan looks great. My radiologist is so happy to see us and says a miracle has happened.

18 Oct'18 : Blood is normal. CT-scan shows continuous shrinking of tumors, infusion no30. Keep on going!

Jan'19 : Blood is normal. CT-scan shows continuous shrinking of tumors.

Apr’19 : Blood is normal. CT-scan showing same continued progress. Some spots in the lung will need confirmed in the next scan.

May’19 : PET/CT scan shows that all activity in the body has cleared except for a spot in the maxillary sinus.

Jul'19 : CT scan shows all is clear. The detailed report is also all clear, only some remaining traces in the bones.
Sep'19 : Start Opdivo with 4 weeks interval. Next scans in Oct'19 and Jan'20 to check the impact.
Oct’19 : CT scan shows all is again clear. The detailed report talks about remaining traces of tumors but not if they are active or not.
Nov’19 : Blood test is normal, infusion #52. Start taking iron supplements to recover from chronic anemia.
Dec’19 : Doctor decides that infusion #53 is the last one. Next CT scan in planned in Jan’20. Anemia is recovering.

The impact of graduating

No more treatments..... I woke up with that thought and felt a surge of energy. The next thought was to fly to Holland to see my father. A desire, a longing, suppressed by a disciplined mind which focused on recovery. Three years ago I had stopped with every activity which might have a worsening impact on my cancer. One after the other started to surface: travel, alcohol, stress, Dutch candy, cookies....

What a change in viewpoint, causing an earthquake in my psyché. I am surprised that this predictable decision has such an impact on me. I can understand that my strict control now will be challenged by the well known return to old bad habits. But I have been working on that the last year, and I permitted myself at times a cup of coffee, tried to travel, and enjoyed dropjes and cookies with a healthy restraint.

The result of giving myself some slack, and learning to enjoy small things in life again, had also reduced the stress of dealing with the treatment. I now realize that this discovery also gives me confidence since restarting some ‘bad activities’ didn’t have any impact on the scans. It will be ok to loosen the reigns a bit more. Yippie! I can enjoy life more without having to be afraid it will cause the tumors to grow again.

I realize while writing that last bit that I have learnt a huge lesson in life: have the courage to describe my fears clearly. Honestly though, I had no idea I had this fear until I wrote it down just now. That is also something I confirmed: my writing is much clearer than my thinking. The 10 essays I wrote to analyze my self are proof of that.

I fell down one of the deepest wells in life called cancer, and climbed out with loving help and care. What lies ahead now is to draw a plan how I want to make best use of this second chance, this second birth, this second life. It will certainly be a life of moderation, careful (and I hope wise) choices and prioritizing the future of my loved ones over my own.

I have been on the receiving end of so much love the last 3 years and I guess the time has come to ‘pay forward’. Beside being my ‘cure-manager’, my wife contributes so much to the underprivileged in the neighborhood. To support her with that will be my most obvious and rewarding task. To support her will not only help others but also show my respect and love for what she did for me.

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 .....