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!

Implementation of the plan

It is 22nd of June. The longest night in the year has passed, and we feel it’s a turning point as so many things will happen today. I restart Opdivo IV once per month, 5 sessions radiation of brain and neck will start, and long awaited rehabilitation of my legs will commence. In parallel we are waiting for confirmation of my visa extension. It expires end of June…

Actually the day didn’t go as planned at all. All morning I waited for the Opdivo, after they inserted th IV needle. Also the radiation didn’t start. So I had to cancel 2 business meetings which were planned on the basis that I could cancel them with an hour notice. Anticipation…

Then, after lunch, things started to move in parallel. 1.5 hours of Opdivo started. I thought I could sleep through it but the rehab guy decided to appear unannounced. Between the ECC cables and IV tube he began to check on my muscles, asking me to stand etc, the nurse was watching, keeping the tube out of the way. 

He nodded a few times, and agreed to provide a walker for practice after I had visited his shop on the 5th floor. His English was 0, and used google-translate as I have been doing. He was very professional and asked the right questions. He would visit me the next morning and drive me to the 5th floor. I am making sure there is no business meeting planned in the morning… Anticipation.

The radiation for today is not scheduled, making me worried about as I have a critical meeting at 17:30, which we worked on the last 6months. Yesterdays radiation was at 16:00 with a duration of 30min so it should alright. It’s ‘just’ the brain and neck which are radiated with precision… Well, looking forward to a well planned day, which hopefully will go as planned. 😂

About my visa cliffhanger; I asked my wife to follow the example of an Indian diplomat, who visited a special booth in the immigration office to get an extension of 5 days on his son’s visa. First he got a stern NO, but after continuing to insist and repeat the exact same request in English 5 or more times, they swayed and allowed the extension on condition of some more documentation. 

We had a time shift experience as if we were back in Bangalore Immigration where this kind of behavior and asking for an exception was normal. My wife and me had never imagined the officer would give in to this diplomat, but learned a thing or two on his approach of repetition. When she wakes up I will discuss it with her, as she is getting burned out of waiting without knowing how close to expiry the confirmation will come. Taking possible actions prevents the stress of waiting.

Another rollercoaster day ahead of us. One which we will take a step at a time, and enjoy small things and jokes with the well trained, polite, supportive and untiring hospital staff. I feel so blessed being here, and enjoy the deeply engrained culture in everything going on around me. People, systems, methods, and above all patient first mindset! 

Planning the way forward

My right leg has stopped responding to my needs to walk with it. My left leg can still carry my weight, and I use it to pivot my body when getting in and out of my wheelchair on my own. This chair is brought to me by a nurse, who is on-call 24/7. In principle, I could return home now, if we can provide similar circumstances, in a sustainable way. 

Conditions we can observe to make my return home a success are:

1. Radiation treatments have to be finished. 
2. Rehabilitation expert of the hospital has to observe progress in recovery of muscle functions in both legs.
3. Social care workers of the local city Hall to visit our home to.support me and release my wife from that primary care burden.
4. Arrangements to be made for a hospital bed on the ground floor in the house.
5. Easy access to toilet and bathroom is to be provided by temporary disability equipment like. crutches, narrow wheelchair, bathroom chair etc.

This requires quite some arrangement with local City Hall, and a discussion was held with the ward nurse which support the hospital could actually provide. My wife was more or less in shock after understanding the complexly of this task, even with full support from Hospital and local City Hall.

The option at the other end of the scale of things, is to consider moving back to Holland alone, settling in as a resident over there and make use of the Dutch social insurance benefits. As per experience of my disabled aunt, all services and equipment will be provided and financing is covered by the local City Hall. This includes making necessary changes to the house.

Quite a big change it will have our lives, as we need to split up and retire completely. Part-time work for wife is is a option as she still has several years to go till the Japans.pension kicks in. Also my visa in Japan needs to be changed to Permanent Resident so that I can return in case my body recovers. This is ongoing at the moment.

Either way, arrangements need to be made for me to return home first, and study the process to shift to Holland in case the situation becomes unsustainable. The arrangements in Japan can only be coordinated by my wife, so she needs to have the time, energy and support required to complete them. For the arrangements in Holland, my brother has confirmed his support and his planned visit to Japan will help to finalize this plan.

As far as I can judge, she is ready for this task as long as she has sufficient support from all government services. An action plan needs to be made, supported by a budget. This needs to be validated with the local City Hall person in charge. This all needs to start while waiting for my release from hospital. 

It’s doable, but the single point of possible failure is my wife. If she burns out at any point, or has another bike accident and breaks a bone like she did 5 weeks ago, we are back at square one. My son and/or her brother could provide a supporting role to my wife in planning. We also need to get commitment from the social services provided locally, to support and take over the coordinating role when required.

We obviously have no choice to move forward with planning all this, as my release from hospital will happen soon. We are talking about a period of 2-3 weeks. Quite a daunting challenge for the family as a team. My wife is the only person who can decide to start with this, and we have to pray that all will go as planned, and hope for the best!

Hospitalization, flashback

Now it’s day 4. Saturday has arrived. The past days have been a roller coaster of new information, complex decisions, confused emotions and a great briefing by dr Namikawa for me and my family.

Scans speak a definitive language which cannot be translated easily, but with the help of my doctor my wife and children could also understand the implications of a large white spot midway my spine. Also a small grey spot in the center of the brain could be seen, which was worrying and still under investigation. It might be the cause of my facial palsy (paralysis) …

Kaishu (27) was there. He had come by Shinkansen from Nagoya where he works for ASML. Marika (17) was there as well, coming straight from her High-school. I suddenly remembered our first family meeting in Paragon, Singapore. It was January 2017 and had called them together with my wife Yuka to break the news of my Melanoma cancer diagnosis. 

We decided then that we would continue with our lives as before, accepting the situation. We broke up continuing with our appointments and making the diagnosis part of our lives in a natural way.

5 years had passed by like a blur, they had grown up so fast without a father to do fun things together like hiking, sailing, Roppongy nights. Kaishu had broken off his master’s study Physics in Eindhoven to get a job during COVID times. I had given him an introduction in the business aspects of Manufacturing which he had absorbed like a sponge. 

Marika had started midway primary-6 after moving. Quite a shock after exciting Bangalore and Singapore… Luckily, after trying so many school entry exams, she had secured a spot and was admitted in the strict and old fashioned Ochanomisu Middle-school (7-9th grade), followed by Hiroo private High-school (10-12th grade)

Yuka had been their anchor and had organized every aspect of their education and mental growth in such an amazing way that they had been shaped in caring, smart, exploring young adults. Finding their way in the digital world with a healthy balance between on-line and off-line worlds and friends. Amazing… 

Lessen the burden (Mar-2022j

I wrote this 3 months ago, and it applies again on what is going on right now so this I will share it with you.

God tests me beside blessing me,

It shows how strong he thinks I am.

I long to reduce the discomfort,

and ask Him quietly in prayer.

Jezus listens and comforts me, 

Peace returns in His presence.

Being heard by Him is enough,

a smile returns, my body relaxes.

He teaches to enjoy small things,

everyday the world smiles at me. 

Through the happiness of my child,

by the color and song of small birds. 

Listening with my ears and heart,

what life provides enjoyable feeling.

That soothes my small discomforts,

and brings me hope of final healing. 

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!

Traveling pain

I kept a record for a week on pain patterns. On Sunday I raised the alarm that the painkiller wasn’t working. Pain reduced because of steroids. Today my wife visited my doctor and I was supposed to join her were it not for accidents on the stairs due to nerve pain. The doctor said that the pain was not due to cancer as it travelled up and down.

He had checked Yervoy records and there were rare cases where it had affected the nerves. He prepared a prescription for medicines to calm the nerve system, repair it, and suppress the related shooting and constant pain. I just took the pill after diner and b12 vitamin, which helps repair nerve cells. I will wait a few more hours until I can’t feel any of the pain which has ‘befriended’ me the last week.

Wish me the good fortune that the analyzing conversation between 2 angels (my wife and doctor) resulted in a clear image on which basis dr Namikawa could prescribe the right medicines. My ordeal of hopeless and endless nights in search of sleep has surely come to an end. 

Such a strong belief and conviction has helped me so may times in the lsat years. My prayers also were very specific this time. Where I usually pray for others in need, I have learned to ask for help by directly asking Jezus. That request, I believe, has giving me the power to joke to myself how many positions I tried in a night to find rest and remove the agony.

Now it’s just a matter of time and constant posture reminders. Hope has returned, not wishing for a quick recovery, but for steady irreversible healing. The light of angels protects me from gloomy thoughts and keeps me away from depression. I feel truly blessed!