Staying in a Japanese hospital

I have been writing about hospitalization in Japan, and I am sure there are so many differences with Singapore and India. I never stayed in Hospital in Holland, I leave that to the readers to fill in. I guess language is biggest issue for foreigners, so it’s confirmed that all instructions are in Japanese. English indicators were added during preparation for the Olympics, so it improved somewhat. 

You will find a mixed bag of fluency amongst the doctors and nurses. Lucky for me, I have a perfect English speaking dermatologist, and the same for his assistant, who monitors my symptoms. Most specialists like pharmacists and physiotherapist are trying their best, so when you try  and speak a bit of Japanese and use the imiwa? App or Google translate, you’ll come a long way.

Next the hospitality and training of the staff comes to mind. It’s without doubt the best I know. They never  tire of the happy banter with mostly old guys around me. They do indicate clear limits, and provide room for patients to do things themselves in a very natural way. 

For instance, the first day they did everything for me to get me in and out of the wheelchair. Now they wait just a bit longer to reach for my legs, or shoes to be put on. I gradually become more flexible and can do more things, so it’s very welcome to make me do it. In India my wife was forced to do things she couldn’t do. Pain was something you had to endure as a woman the nurse said. We were shocked. In Singapore they would repeat things like a drill, polite but never changing.

Systems and procedure are honed to perfection, especially the menu. You can choose everyday between 2 options, great variety of veggies and meats, fish, spaghetti, fried noodles. I was given daily Yakult I asked for. My neighbor undergoing chemo, was given nice jelly’s. Another was given gratin after an inquiring discussion with the diëtist. Amazing such personal care for chemo patients. Their daily suffering was made bearable.

The rooms are for 4 patients and the curtains are drawn permanently as a remnant of COVID policies. As these policies also include no visitors, the place is super quiet except for serious and long wet or dry coughing episodes, and the ever present snoring orchestra. Enduring the side effects of the treatments is handled by sufficient painkillers and the provided individual care. 

The nurses provide individual warning that they will switch on the lights at 6am, the same cheerful announcement visit happens at 21:15 to herald the darkening of the room. Without exception I am left with a smile on my face. 

Washing is done by hot wet towels and assistance is provided except for private zones, and she will disappear when you wish to wash yourself further. A small shower room is available in each room of 4, as well as a toilet and washing area. A small fridge is provided near each bed, together with the usual but very spacious storage cabinets. A bath and coin washer is available as well in each ward of 10-15 rooms. 

Lastly they assigned me to a bed in the ‘English room’ of the floor, named 14A5. This is a small joke playing with words: in Japanese A5 is pronounced as A go. English is pronounced as E-igo. You get the drift. Sorry. Kudaranai is the Japanese name for a bad joke in Japanese. My son really doesn’t like them, but my daughter still smirks sometime.

Enjoy your stay in a hospital in Japan!

The blessing of Hospitalization

The last days have been difficult in a sense that pain was very difficult to manage. First I had no clue how to lessen the pain, as I didn’t know the origin, and secondly the provided painkillers were not sufficient at night to put me asleep. Twisting and turning actually made things worse. 

Things started looking up when I found out that I had to wait until the cramping and accompanying severe pain would subside. After 3 nights of painful struggle I could finally find a position to sleep in! The next sign of bigger problems to come, was when I fell several times as my upper simply gave way. 

That’s when my doctor decided to admit me, and do a full checkup incl CT and MRI scans. Once admitted using taxi across Tokyo, and wheelchair to check me in, my body already calmed down. Not having to hoist myself up and move on hands and knees to the toilet made me relax. 

Policy is still no visitors due to lagging loosening of COVID rules. My wife therefore had to say goodbyes before I went to my room with a nice view of the SkyTree. I felt very lucky…

The scan of pelvis and head was done soon after, but the position flat on my back was very painful as my legs cramped when stretching suddenly. Even after adding a triangular pillow under my knees, it took a while for my legs and hamstrings to relax, the pain to subside so I could finally lie still. 

A relieved doctor Namikawa soon came and told me the good news that there were no new metastasis to been seen. Great! However the MRI of brain and spine would tell another story soon…

The young assisting doctor Wada told me that the painkillers were doubled to make me sleep and relax my muscles. I felt in good gentle hands, and adjusted quickly to the room I shared with three other patients. They were so quiet in daytime but I was ready for a good snoring orchestra. I had brought my earplugs!

The painkillers gave me 2 times 4 hours of healing deep sleep which I had longed for for many weeks. Yummy and healthy Japanese dishes 3 times a day! A sweet team of nurses to drive me around in my wheelchair for toilet visits and brushing my teeth. I was beginning to have a great time.

The toilet for the disabled was quite a drive and it suddenly dawned upon me that it was me who was suddenly disabled. Nurse Nakamura pushed me with great speed. The fresh wind in my short but growing hair made me laugh. I explained her that her sounds of ‘hoi, hoi’ made with her every action, reminded me of the Dutch ‘hoi hoi’, which is like a informal greeting. 

We both laughed, her English was perfect as she had studied in Canada from 9-12th grade. She had made that decision by herself! Amazing, what a challenging mind at only 15 years old!

My second day just started, and they are preparing my morning medicines. Food will come soon too, and by 10am I have to change rooms. New snoring orchestra! Yey!

The breakthrough

My strong recovery will, fuelled by love from all who prayed and cared for me, pulled me through, forced me up me up so many times to drink. The facial palsy I had developed in September was the cause of for my dry mouth we found later. Saliva supply had been reduced to only the left side.

The complexity of root causes made me loose my confidence in applying what I had learned in my previous battles of recovery. I felt lost en desperate, but then again this new peace came over me, even deeper and more comforting every time I felt unsure what would happen next.

This couldn’t be a coincidence and I started thinking and came to the happy conclusion I was no longer talking to myself but to a new friend inside me. My talks to pep myself up, to analyse and find ways out became prayers. And how Jezus answered!

I was saved! Forever! Where I had struggled with my trusted but distant Lord, my Father in Heaven all my life, suddenly I had a personal friend to help me with my recovery. So close, so easy to reach, so helpful, so soothing. I felt so happy. Wow! I had been reborn. I wrote it down in a testimony and sent it to my brother. It was 2Dec now.

Something happened

My heart started beating very irregular and very hard till it simply stopped for seconds and seconds. I cried out to my wife who sat next to me holding my hand, so worried. ‘I don’t want to go yet, I can’t go yet! I closed my teary eyes and then a deep peace came over me…

Something had happened but I could understand what. My heart beat had recovered and I lied in peace in my pillows again. My head was spinning, but I had made it somehow. The worst was over and a blissful sleep came over me. Blissful, because Jezus had entered my heart!

The next day I felt completely different. Not better but different. I couldn't put my finger on it… When I shared this with my siblings, my brother said: Jezus’s spirit was in you, just talk to Him.... I felt so peaceful, all fear had gone from my heart, and all thoughts were quiet and organised.

My body felt weak and frail. Every move took so much effort. I was put on stronger steroids to get the side effects under control but couldn’t visit the hospital for the much needed blood checkup.

So I struggled day after day to deal with nausea, broken nights from steroid side effects which made my heart race and kept me awake. I was unsure when I had to go to toilet because of swellings everywhere. I felt completely exhausted with all organs being affected by the rejection effects.

Bad side effects

After returning back to normal life, my body didn’t feel right and my nausea didn’t go away. It started getting worse until I also started loosing appetite and loosing weight. After 10 days my hair started falling out, except for my white ones. I suddenly was nearly bald…

These side effects were all pretty normal, just a bit annoying as I had prepared myself mentally. The bit I couldn’t understand why I felt so weak and why my weight kept falling. We contacted my doctor, who prescribed stomach relaxant and steroids to reduce the side effects.

They helped and I could join for breakfast again, even going out to a coffeeshop and have a first latte in 2 weeks. Ah it tasted so good. The accompanying orange juice was the killer of the fun as I felt my stomach complaining.

That breakfast was the last normal thing I ate from then on. My body went into lockdown. I mean multiple organs started to be affected by my body’s rejection of Yervoy, the new type of immunotherapy given to me on 22Oct.

The total rejection was a surprise of my doctor. I was the first. When looking in the reference book, I had now developed all possible side effects in the list, and was rapidly loosing all muscle strength till I couldn’t get up anymore in bed.

A new chapter

My hope that the good progress made in the April scan would continue has been dashed. 

The follow up scan in July was all clear, and it felt like a new life had started. The decision to stop Opdivo was made and after 6 months of infusions I was free from regular hospital visits. What a relief that was in the heat of the summer.

The scan made in October showed that a bunch of tumors had reappeared in the fluid inside the ventricles of the brain. This fluid, also known as cerebrospinal fluid (CSF), flows through the ventricles, around the brain (meninges) down into the spine. 

As I explained in previous blog posts, the tumors in the ventricles were removed by pinpoint precision using the cyber-knife. This time this method is not an option due to the size and multitude of tumors. The only remaining treatment is full-brain radiation, combined with immunotherapy to prevent possible growth of spreading melanoma cells in the rest of the body.

Sounds like a good plan right? It does to me, were it not that this the last possible treatment. If the melanoma cells don’t react to this… This thought haunts me at night... Peace of mind comes soon after as I trust in God to guide me and make it work as he did so many times before. Let’s pray for that.

The treatment goes as follows: 

• Starting tomorrow noontime I will get a daily dose of radiation of 10 minutes, for 10 days. Friday 5th November is the last day.
• Tomorrow I will also get an cocktail infusion of Yervoy/Opdivo, lasting 2 hours. It is stronger than Opdivo alone, and is followed by a second infusion on November 15th. Ipilimumab and Nivolumab. Beautiful medicine names… patients call it Ipi-Nivo for short. 

Side effects are probably mild for me, including stomach upset, nausea, loss of hair, and tiredness. I plan to work in the morning to keep my mind occupied, and visit the hospital in the afternoon. Previously I stayed in a hotel nearby but that didn’t exactly cheer me up, so I will travel up and down this time (approx an hour from our house) 

The next scan is planned in January, so we’ll have to sit tight till then. Christmas will be a time to reflect on the gift of life. Wish me luck, and let’s pray together for easy side effects and good results! 

4th spring has come

Wondering and struggling to come to terms with pain,
medicine just fixes the effects of what I carry deep within.
This repeated threat is a reality that fighting is in vain,
life is full of love and dreams, and such destructive sin.

The cross was explained, as a symbol of resurrection,
our sins are forgiven, eternal life is what Jezus died for.
This deep and renewed hope provides fresh direction,
I feel still and in peace, knowing that death is just a door.

Eternal life for all I love is tied to me with endless rope,
trust and confidence in Him radiate the seeds I sow.
How I pass on what I learn about love and new hope,
writing and living is example enough of what I know.

In solitude I realize my life is meant to serve to set me free,
soulmates nourish when I can no longer walk a single mile.
No longer do I miss the sense of smell cut right out of me,
flowers bloom around me, providing fragrance and a smile.

Radiating goodness

I wondered how my brain would react getting beamed over and over again with healing yet harmful radiation. The deep realization that radiation is a mixed blessing made me get mentally ready for the worst. Was it a coincidence that the atomic weapon agreement became active while the same principle was used on me for medical purposes?

The week that followed was dreadful. Eating the delicious Japanese food was work, as my body was resisting it. A weeklong seasickness was accompanied by inflamed intestines and other side effects of Opdivo. Quite a mix but my mind was ready for it, trying to stay active and changing my eating habits. This flexibility and resilience made me aware of the happy moments that my book was an inspiration to other patients.

The church community in Tokyo prayed for me, as did my family and friends everywhere. This is His power which I have come to trust and rely on. As always He will not react immediately, but His love will show me the way to deal with all the side effects and be patient. Everything heals over time. Time also helped me to lead a new initiative at work by fully depending on the team. I felt really blessed.

The weekend started very tough, and I could hardly walk. I promised myself a massage if I could reach the shop which is about 2.5km away. Somehow I made it, and enjoyed the relaxing treat. I applied what I had learned earlier: know what your mind and body needs and take time for myself. Yesterday night something clicked in my brain. It was like a veil was lifted, the dreaded weight in my intestines had disappeared.

This morning I woke afresh, brought my daughter to the station at 6:40 and felt happy when she reminded me that Thursday would be national holiday. Yes! A long 4 day weekend. Such a present relaxed me instantly and now I am ready to start the new day, forgetting everything that happened the last weeks. 

A new day, what a blessing...

Cyber knife after restarting Opdivo

 On Monday we went to see my oncologist to discuss the findings of the MRI. He had made an appointment for us with a radiologist to discuss the path forward with radiation. Like a lamb ready to be slaughtered I followed my wife to go and listen to the dreaded side effects. 

I listened and watched the screen. The friendly radiologist used his best English, and when it became difficult he switched to Japanese. The location and exact size of the tumors (the big one is 13mm) would require 5-7 treatments, and we should start as early as possible. The big one was next to the brain stem, and if it grew further it would start to affect my motion. (Throat, tongue etc.)

We agreed to start on 25 Jan, even though is would coincide with my daughter’s High-school entry exams. When we asked if we could start a week later, he became evasive and looked at the dates of the scans. The tumors had grown from nothing to this size in only a few months.

We went for fitting of the mask to position and keep my head still during treatments. I had done this also for Proton beaming, so I breathed consciously and opened my mouth as it was all covered with thermally hardening warm plastic. The claustrophobic moment passed, and a CT-scan was taken to mark both head and the mask to achieve 100% precision with the ‘knife’.

The nurse whispered sweet English words in my ear to relax me, which was so sweet. I thanked her when we left to meet up with my oncologist to decide when to restart with Opdivo. He had confirmed the year before that restarting had proven to be effective, so I wasn’t too concerned. 

To keep the story short, I restarted with monthly Opdivo infusions on 22 Jan. What we learned from my first clean-up surgery and Proton beaming treatment, is that melanoma is very aggressive and spreads immediately through the blood stream when being treated. Preventive Opdivo will prepare the immune systems for that and kill the melanoma cells before they can do harm elsewhere in the body.

The infusion always leaves me groggy due to the preceding 50ml anti-allergy infusion. After the bus and train ride home, I went to sleep early as my body showed signs of fever and other side effects like racing heart beat and lack of appetite. 

A rough night followed with short waves of sleep and I hit my head looking for something in the kitchen. The unforgiving kitchen cabinet door left a bleeding mark on my head. Why now I thought.... I imagined vividly that the cyber knife will be positioned exactly over that red marked spot.

Now that I am writing this, I had a nice coffee and will go for a walk soon. As always a new day has come, new treatments and new energy is flowing through my body! Thank you all for the great support and love. It really helps me through these difficult times...

The book is published! (+ less happy news)

Today my oncologist showed me the CT-scan and pointed out a grey spot, approximately the size of the tip of my finger. He also showed me the same spot on the scan of 3.5 years ago for comparison. It’s smaller now but he explained that it’s not clear if it’s still shrinking or that it’s growing again.

Following the visit to my oncologist, the MRI was done and the results will be out next week Monday (18 Jan). In case it’s growing again, there are two options:

1. Start with radiation treatment. Discuss with radiologist if proton beaming is still possible.
2. Restart with immunotherapy before or after radiation treatment.

Pretty straightforward isn’t it? No panic, no gloomy moods, just restart treatment again after a year of hope that it was gone. Melanoma is known to stay dormant in the body and become active again. It all starts to sink in now.

The good news is that my publisher informed me that my book is ready! It can be ordered now by clicking on the image on the right bottom of this blog. I am told it can be ordered in any local bookstore using the ISBN number. This will save you the shipping fees. Let me know what you think of the book. Also you can let me know if you prefer the ebook version. 

Small things like my book make me happy. This new development is obviously a setback but I learned the past years to stay positive and keep hope. This phase will pass, with treatments and side effects etc. One day at a time...

Putting things in perspective

We visited dr Zenda (my radiologist) at the Kashiwa National Cancer Center, specialized in Proton beaming treatments. During the last visit in Sept’19, he was so happy to see us as he had been very worried about me. 

Now he told us that I am only the third patient still alive of all patients with metastasis. An old timer of 80 yrs, lives 7yrs, and another patient lives 5yrs. I am no 3 with 3yrs survival! 

He continued to explain that I was/am the first and only patient where the decision was made to stop immunotherapy treatment. At first they had doubted due to the many metastasis, but they are now studying why my miracle happened and how to repeat it.....

Dr Zenda hoped that I would set a record like getting older than 80. I smiled confidently and told him that I no longer felt being a patient. His jaw dropped hearing about my Mt Takao hike the week before. He laughed when my wife said that I would become 100! 

So we had a great time. Friday’s is not for outpatients but he had accepted our appointment today by exception, to meet us as friends, and so would he do at our next appointment in 2021! What a great feeling that the medical team is counting my years of survival. For them I am such a special breakthrough case study.

Yesterday I was happy with a clean scan, today I am happy to be a miracle, tomorrow is a gift, like every day to come!

55th visit

Today is the 55th visit to hospital In Japan for checkup and treatments. The blood sample was taken and then I realized how time flies (when you have fun....) My experience is that when the mind has found peace and there is hope (perhaps because of) that there is no time to worry. All that is left to do is to enjoy all small things that happen everyday.

I believe that hope is the start of healing and recovery. The will to survive provides the energy to the body to kill cell after cell. Thinking about that makes you marvel at the wonderful mechanisms at work in the human body called immunity. It’s worth realizing and reminding that the power of self healing requires a lifestyle that supports it.

The speed at which society resumes rushing, worrying, selfishness, and other habits I have come to avoid is really beyond my comprehension. To start  a sustainable lifestyle requires apparently more than life threatening disease of oneself, family and friends. One thing is clear, it will never happen by free choice.

Semi-retirement

The 1st of June has passed. May was the month I became 60 and in Japan that’s the age companies can legally send you into retirement. However pension payment starts at 65. Right. Many ask themselves should I start living from savings? After many many years, the government has recently issued a guideline that companies should offer the retirees a contract and make use of their experience.

We decided to set up our own company which meant that a huge number of forms had to be filled in. Japanese forms are ingenious, cramming so much information on a single page, so many things to repeat, and submission in so many offices which are not exchanging any information; company registration, tax offices, insurance, bank etc. I am my wife and brother-in-law forever grateful.

So here I am now, happy to work 4 days a week as a consultant, but mentally struggling to come to terms with what this change actually means. The first few days of work was exciting, full of good news but my heart was not in it. Somehow I was exhausted at the end of each day. Everyone just carried on with their work like nothing had changed....

The first Friday off was therefore a huge milestone and I was looking forward to doing something completely different. I had planned to visit Mt Takao for a long time since my first surgery, 3.5 yrs ago to be exact, and I was looking forward hiking in the forest, and doing some climbing. I felt great, mentally refreshed and the aching muscles were proof that I had pushed my limits.

There are many plans for the Friday’s to come: hikes, playing golf, community services, study, and just lazing around. I am now looking forward to the change in my life.

Cancer and Corona

The immune system of cancer patients is the topic of many discussions nowadays. How will it react to Corona infection during and after immunotherapy? No clear answers except that there is a an increased risk of complications.

Cancer patients can’t get their regular treatments in Holland and are also cut off from the assurance of regular checkups. Lucky my last checkup 2 weeks ago in Tokyo continued as usual. Somehow Japanese react differently this pandemic.

I read that a Japanese flu medicine worked well in China and Japan to reduce the effects of the new Corona virus. It’s under trials now to validate it’s effect and to release if to all patients. This same medicine is used for regular flu jabs, and maybe the reason why there appears to be more resistance in Japan.

Patience

Life feels great after my treatment has be stopped. I enjoy planning concerts, work on my model yacht, go for heathy walks and think about everything but the past. Living in the now is what I learned but there is this big looming thing called retirement.

In Japan its the rule when you become 60. Its not law, but companies follow their own judgement. It's only 4 months away now, so close. I have started preparing about a year ago to make a plan and map options so I can't say i come unprepared, but still.

The tough thing is to provide a choice for my daughter who is going for the entry exam for high school. Its a big thing in Japan, and the kids are all stressed out. Parents perhaps even more so as the entry exams means lots of preparation and ferrying them from school to school.

I thought the end of treatment would bring simple peace and happiness, but now the risk of not having a good contract with International school tuition looming make me stressed out. It's coinciding with new fiscal year planning and budget approvals at work. I feel burned out.

I realise that my capacity to handle stress, other than that related to cancer, has evaporated. It's as simple as that. When survival has top priority nothing else matters. Now that survival is secured, everything else asks for my attention and requires loads of energy and focus which is in short supply. 

I have to find the patience to deal with selfish people again. Accepting that everyone has priorities which are hard to negotiate is not easy.  That is the shock of working life after becoming healthy and everyone around you needs your full attention and support. 

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.

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.

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 .....

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!