Staying positive by living in the now

Finding my way through the dips is the right way to describe what I am going through. The dips are caused by the slow loss of sensation in my leg muscles. The peaks come from all the loving care I receive. Especially Yuka gives me hints how I can make her support easiest. In other words, how to be an easy patient. First and foremost it’s always a request whatever I need.

This requires some basic rules of behavior for me, which we set in motion before the wheelchair became my mode of transportation. Please, followed by request and ending with thank you. Yuka is doing her best coaching Marika on her summer project with a student from Malaysia. My sickness has become a fact which have to live with while their lives continue.

Small irritations will always be there, and we have found a happy mood to freely speak out on anything. Kaishu also stated that he should more upfront, and voice out whatever he cannot deal with. An example was the remote walk around using the wheelchair in the house. I got too excited at times, when he couldn’t take turns, and I asked him to try different things. He wrote that in my excitement I started sounding bossy unintentionally.

Now he is more pro-active, and we set-up a small ‘medical status’ group. I update in the morning what has changed since the day before. This way dealing with growing paralysis doesn’t cause an emotional charge when we discuss simple things like calling after Yuka for a forgotten spoon. Just wait for her to return first is what she prefers. 

Finding my daily rhythm includes rehab exercises in morning and evening. I can’t sit longer than an hour on my super bed or on my wheelchair, so keep the habit of shifting back to chair and have a short drive through the kitchen.

My work from Mon-Wed provides a good incentive to keep busy. I wake up and eat before 9am. Morning meetings start after 10am, so gives me time to prepare. I then wait for Germany to wake up as I do several projects with Thomas. 

During quiet moments I follow sail races of skûtsjesilen. Of course I root for the skûtsje Snits, which the Frisian name for my hometown Sneek. Enjoy! It’s all on YouTube.

https://www.skutsjesilen.nl/competitie/wedstrijdverslagen

Life at home, finding a new rhythm

Coming home and settling in was a thrill at first. Great relief came when trying out the access to toilet and bathroom. It was all possible with slight adjustment to the wheelchair chair. The level difference is possible and good for upper body strengthening. I need to look at the positioning of my feet to see where they are as sensation is almost not existing.

Mentally I was happy with immediate start of rehabilitation, which gives me daily things to do beside my 3days a week work. All in all a smooth arrival and start of life at home. When I asked the Physio about her experience for duration of regaining strength the answer made me realize it will time: up to 3mth to restore muscle strength and 6-9 month to regain balance and control to walk. Learning to walk again.

Daily routine starts with stretching and balancing lifted knees in the bed. Shifting from lying on my back to tummy and then rise to hands and knees takes effort every step of the way. 15 minutes later, I lie panting on my back again, resting to go sit up and do the next upper leg lifting routine. You can imagine it’s going to be a long road of recovery…

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.