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. 

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!

Nerve pain: sciatica, herniated disc, or something else?

Pain. Nerve pain has been bothering me since March. The root cause seems to be the pinching of the sciatic nerve, running down the legs. It started on the right, burning pain in the lower back, shooting pain into the leg. About 2-3 weeks from no start to end of pain. Then the other leg started and after 2-3 weeks back to the right leg. I was getting tired of sleepless nights, happy relief, and then torment all over again.

When the right leg started playing up for the third time I informed my oncologist, as this might have a relation to the allergic side effects of Yervoy. Dr Namikawa nodded, and was unsure about nerve related issues with Yervoy. I shared that I have numb spots on my arms, and that my facial palsy is not recovering (8 months now) 

He gave me the strong painkillers which I asked for. After coming back home I studied the possible root causes again and found the sciatic nerve passes through a muscle called Piriformis. A herniated disk might not be true root cause? 

As the pain could not get any worse (I thought), and sleeping at night was now done in a chair, I followed exercises provided by a website. Some were mildly increasing the pain, others made the pain unbearable... I tried the mild stretches a little longer and took painkillers. Walking was now also painful! 

I joined a meeting from work and forgot all about the pain, and just relaxed on a chair from where I work remotely. After an hour the pain was nearly gone… what a mystery. The stretching, pushing through excruciating pain had helped. Now I regularly stretch the hip, and let it be with light walks. 

Let’s hope I can sleep on my bed again tonight. I will not take the painkillers at first and only take them as a last resort. 

A life of Quarterly scans

The scan results were discussed with my 2 oncologists. The Radiologist was happy to tell that nothing was growing. No new metastasis and nothing else to worry about. The Dermatologist reduced my steroids by half a pill for the next 3 weeks, and probably half a pill after that. At last… after 3-4 months I can confidently say farewell to organ swellings.

The coming years I will have to show up for an MRI scan every 3 months. It is minimizing risk that uncontrolled metastasis goes unnoticed. My mindset is to look forward to the given care and know that nothing is escaping the attention of my doctors. Monthly blood tests will keep an eye on any unexpected reactions of my body. Reassuring.

Knowledge of the test results is providing me confidence. Confidence brings hope, which in turn brings happiness. Enjoying the things I can do in life, ignoring loss of clear vision caused by facial palsy which continues for 8 months now. Annoying. Keeping my body and mind occupied is made possibly by my work 4 days a week. I am blessed with that.

So many blessings have come my way since I felt Jezus entering my heart in October. I wrote about it, and must say it’s wonderful. Life is not the same as before. Peace is always there in my heart and prevents me worrying too much, focus on the beauty of life, and share love whenever I can. It always flows both ways and the invitation to share sorrow is now so natural.

This is the life I look forward to experience in my silver years. Full of sharing and love. Join me! 

Being the observer, the passenger

 Lately I feel more than I think. It is a result of feeling out of control. My body is affected by so many things that I can no longer rely on my good old willpower. I have to surrender as I have experienced when I let Jezus into my heart. Habits return, and I tried to stay positive by finding ways to enjoy life, through activities and walks. 

However, this old tried and tested approach has its weakness in that it relies on my mind. My thoughts need to lead, motivate and urge myself to go out and walk! This sense of urgency is fading however, feelings of doubt bubble up. Patience is required to let the body lead, and decide when is the right time to get stronger. 

Emotions also get stronger, specifically about some body signals are related to getting older, not just a sickness. Somehow the confidence is fading that everything will return to what it was... An acceptance is growing that I am getting older while dealing and accepting my cancer and palsy. This is the patience I am sensing. 

Patience comes from changing position in the car of life, from the steering wheel to the passenger seat. I am no longer the driver, literally also. I have to accept this. I am accepting this. It’s a grieving process, it’s painful, as it affects my nature to stay in touch with nature, to draw from its raw power to feed me. The passenger seat is a relaxing place… I have experienced it during our last trip to Izu.

Finding my way through the maze of emotions and feelings requires learning a new language. Not of words, but of the flow of life. Observing the play of life, the events that happen to me, relationships that change, influence me, provide me joy and grief. Accepting it without having to describe them is a relief. Accepting the feelings that come with experiences without thinking of words to describe them…

This is new to me… it is providing me a new perspective in life. I try to describe it here and realize it is nearly impossible. Anyway I wish to share to share this method as it makes my patience grow. And that is what I need most now, acceptance of my situation, emotions, fears, my being as am, as am becoming…

Allan Watts has this to say about overthinking. https://youtu.be/uiXTSmdSBpo

The impact of facial palsy on my vision

Since September facial palsy has set in and has not improved much. This has been a worry of course, which I have tried to ignore in order to focus on the cancer recovery. Now that side effect repression medicines come to an end, we paid a visit to an eye specialist to check up on my double vision. 

This is causing dizzy spells while walking, and makes watching TV impossible. Reading and work using the PC is going fine as reading glasses keep things sharp. I have to limit the hours of course. Walking outside is not relaxing as I will have have to wear an eyepatch to prevent dizziness. Anyway, it’s not life threatening but simply annoying.

Studying available reports, palsy may cause the weakening of involuntary muscles which can results in (temporary) diplopia. The eye specialist was unsure and referred us back to the cancer hospital to be able to combine all available information from MRI’s. We will take it up with my treating oncologist and get an appointment with the resident eye specialist there.

All this makes us unsure and makes me emotional about the possibility that facial palsy is not recovering at all, that it may be permanent… I wrote earlier about emotional challenges. I changed from planning a trip to Holland to living day by day. Enjoying small things is not a simple task, but reading magazines which arrived by post are a welcome change.

It’s important to stick to the basics: have patience, ask advice from my trusted oncologist and stay focussed on what can be done. Feelings of desperation are inevitable but require a positive mindset to prevent depressive cycles. Not easy, but awareness is the first step. 

Talking to my therapist must continue…

Balancing emotions with my thoughts

Starting counseling has made me aware of my habit to drive progress through the mind, by thinking things through, study the options and get educated on side effects. This has somehow been balanced with the emotions as a result of my social interactions. The safe distance by wearing masks all the time gave me a cushion to deal with the changes.

My eye sight has become worse because of diplopia: parallel vision. It’s related to the facial palsy and caused by the relaxing muscles around the right eye. I can’t do much about it except facial massages and waiting for the medication to end. Confidence that it will pass is declining, which is emotional. It comes and goes in waves, and patience to finish the medicines appears endless.

My contact with family is not constant, and I wonder how to keep communicating without shock waves. It’s hard to be honest with myself all the time as I can’t understand the emotional changes. I just go with the flow for a while and see where this counseling brings me. Surely it is releasing something for the good, something is flowing which I wasn’t aware of.

Channeling my emotions has never been my strength, especially now my temper has my focus to be under control. I am trying smoothen out the pent up bursts of energy, released by the continuous need to be patient. I can’t enjoy taking a bath anymore due to the weakened muscles… any movement requires a burst of energy which I am short of. It’s so frustrating. 

Sleeping a whole day is not making things better, but at least it gave my mind a break to deal with the emotions and just relax after having ramped up my activities the last 2 months gradually. Increasing the number of steps everyday has become a subconscious effort beyond healthy exercise. So my mind is tired? I am getting confused and setting priorities of what is a must do to recover has become a maze…

I switched on Spotify this morning and listen to classical music. Now I feel at peace. The pastor also talked about relevant topics in dealing with daily life and challenges like health. I leave it alone for a while until I feel like facing it again. Speaking the words: Let it be… 

Travel to Europe feels like a needed escape but I can’t escape dealing with recovery of facial palsy first. Step by step. I can’t rush things suddenly, as also COVID restrictions will nog disappear overnight. 

I also realize it’s the first time I use the label emotions….

Improving my mental health

After a clean scan, it’s time to switch my mindset to being healthy. I went through this process before in early 2020 and thought it to be easy enough. However when I went into remission, and the scan was showing traces of metastasis, I realized that switching is still temporary. I already knew I had to learn to live with this disease and not spend time on wishing and conquering it. There is no cure… 

General behavior counseling was what I opted for, remaining very cautious not to be too optimistic.  

• Resolve short temper, be a better listener.  
• Deal with retirement. Already through Beecon, and BKCF. 
• How to deal with my 16yr old daughter as she is self centered at 16. 
• Support my wife more, be less of a burden. Do house chores. 
• Learn to accept her lead in the house.

Christianity:

• How to share the experience of Jezus with my family?

Cancer:

• Expectations to get better soon 
• Dialing with chemo side effects, fears, sudden weight loss
• Resolve conflict with ‘Gaman suru’
• Fear for pain management in Japan
• Reduce stress for family

Well, I started hourly counseling, and find it easy to relate and share openly with my counselor. She is 80 yrs old, and also has cancer. At first I felt a bit strange to be in the same boat, but when sharing experience became easy, I also felt talking to a fellow patient in full confidence was very calming.

I am looking forward to next session!

2022: Take care of yourself

What does that mean? For 3 months now I depended completely on my wife to arrange everything around me.  For me, hospital, house, mental, etc. All this while she was running the house and everything else.

On New Year’s Eve she asked me to open her door, to be free of being responsible for my care. I was a bit sudden, but I could see how tired she was.

I am trying to figure out what she did which I can do:

• Prepare your own meals. OK
• Take  medicine on time: OK (forgot on 1Jan)
• Increase stamina: go for daily walks and exercises: OK
• Go hospital.  for blood checks: OK
• Clean the bath, do chores in the house: OK

OK, actually not so difficult. I am actually ready, I just need a push to go for it. In all her wisdom she knew this, as she observes me everyday. OK, now the action is on me. Show time!

My appetitive is back, my body is getting stronger, my mind is stable, so here I go and enter 2022 as a mentally fit patient, ready to be healthy and ready for work. It’s so easy to keep on relying, and not have a breakthrough.

My son is coughing, is it COVID? Test this morning. My wife’s best friend needs brain surgery. It’s time for me to get strong and healthy. A mental click. Now! Get up and make breakfast.

My wife is smart and supportive, there is no need for longer patient care, as long as I am not alone to make decisions with the doctor. So Kaishu will join the next visit on 6-Jan.

Positive results after chemo

A will of Steel is born. That’s how my steel will was born and shaped during the 60 infusions over the past 3 years…. There is no escape from cancer, you have to learn how to trust your body, rely on your hope, and live another day to enjoy the choices your kids make and have learned to make because you showed them through your lifestyle, your examples, your meager fatherly advice, followed by sound motherly advice, hitting all the right buttons, making you smile, why. You can’t says things so clear and to the point, suitable just to execute into success… hey, that’s being a dad. Did things right. Mothers say the right things, to the kids at least :-)

My relationship with my wife and children is changing. Because I know I have to change into a person, who is always grateful for having been supported so well, so careful, so heartwarming. My son stands up to take his place in the family, to represent me when I am not able, to support my wife mentally and with the chores. Now my daughter starts doing to same with such a quiet brother doing the things he has decided to be his contribution to our team.

A new mindset. That mindset started in January 2017, upon hearing the diagnose that I had a very rate type of cancer. We decided to get on with life, confuse our appointments, not pretend nothing was wrong, but continue with normal,life. Prevent it from becoming a trauma, in the same manner as we had dealt with the aftermath of the Tsunami on the beach of Koh Lanta in 2004: stay and help with the clean-up, while seeing the waters reside, run back into the ocean, fishing dead fish from small ponds, clearing the mud from our chalet, where the rising water had just covered the floor. The designer must have had instructions from Heaven to pick the exact right stilt height to keep us safe, until we decided to evacuate to the hills.

That’s how circles come round, and good decisions can become a life skill for your children. The day of the Tsunami made us realize that having one son was not enough. We decided then and there to have a second baby… Marika was born 10 months later on 25 October 2015…

Coming to terms with anger, acceptance:

• My radiologist is a great technician, but emotionally has to stay completely detached from his patients feelings. This view about him has endeared me to the tough job of making radiation decisions, irrespective of what the patient will have to endure. The same is the case for the dermatologist, chemo oncologist, and other treating oncologists. Cancer is lethal until its under control…
• Coming to terms with the role everyone plays, also makes you control your anger why this has to happen to you, that nausea is not a result of one of the treating doctors not willing to alleviate it with medicines. 
• They will!, once the cancer cells have been hit hard enough and are dying. That is the point where side effects can start to be treated with the available medicines. 
• The period before that point it’s sure chemo has done it’s job, one has choice than to endure it, with ones extended life as a reward. It may not feel worth it, during the deepest phase of darkness and mystery, but it will in the end when relief sets in.

My experiences after the first chemo

[(WARNING)] this blog tells my actual experience with chemo and related allergic reactions, and may be experienced as shocking. 

Life in space

I have always wondered why writers block happens, and to describe that sense of sheer desperation.

Then suddenly there is inspiration and writing starts again in bursts. Every once so often, these bursts start to melt together and then magic! You’re in the flow! You simply can’t write fast enough, afraid you forget everything that’s bubbling up in your mind. You’re going crazy and time simply stops.

My sister expressed her doubts that words have limitations to capture intricacies of feelings, relationships, and the various nuances of interpretation of each participant. She believes in the flow without words, not linked to time and space that is Eternal between linked souls.

I answered that I deeply believe that everything is connected, from trees sharing roots, to connected and communicating souls (soulmates), to quantum particles intertwined across universes, and ultimately one Holy Spirit connecting all spirits of all that lives.

This set me thinking how words are always followed by spaces. The relationship between the word and the following space has always intrigued me. To be more precise, what is the space expecting from me to type next. As if it keeps asking me: Which word will follow? It urges me on, as if that space is a living thing, an blank organism.

It becomes a play, a game of connecting words without words, and the best starts when the space starts telling me what will follow, so fast and intense that you can hardly keep up with typing, you go into a kind of trance, it’s like a rush, and then suddenly everything flows…

Wow, that is the most addictive aspect, the most beautiful moment of writing, that flow without words…

Space then drives me on, and on and on, and then suddenly the cursor blinks next to space, and blinks again… and then life disappears from space. It simply dies. Writers Block! Aaaargh!

Time for a break, coffee, walks, anything to bring back inspiration. And then one day you open your laptop, sleepy, drowsy, grumpy… and a smiling space is looking at you with an eagerly blinking companion next it: Where were you! Sit down, I’ve got so many ideas!

Hahahaha! That’s why I love to write, and actually don’t mind writers block at all. Even space needs a rest…

Jezus came into my life, my testimony

My life as a Christian started when I was baptised. I had a happy and protected youth, believing was following patterns and I confessed my belief in Him as adolescent as was the custom.

At 17 I moved to a dorm in a nautical college to start a career as a Merchant marine officer. For 7 years I lived a Godless life as sailors live a lonely life for months on end and have few limits when going ashore. I started building walls around my heart to protect it from harm.

At 27 I found a life more suitable for my gentle character as an automation engineer. I met my lovely wife in Japan who started removing the walls, and we lived in many countries while raising our 2 children. We encountered many events in our life but were always protected; riots in Jakarta (1998), tsunami’s in Thailand (2004) and in Japan (2011) including the black rain that followed.

I always searched for God but had a distant relation with him as I had when I was young. I read all Bible stories to my children, they were baptised but I couldn’t instil my deep founded trust in God in them. This troubled me a lot.

Then, at 57, I was diagnosed with cancer. It strengthened my anchor in Him as I put my hand in His. He provided me the shelter of hope I needed to weather the storm for years to come. The surgeon he sent on my path was a Christian, and so was the rest of his team. During the complex clean-up operation he kept praying out loud his assistant told me. The meninges was pierced and a brain surgeon was called in to manage the damage. Also he was Christian. God had taken care of everything and I recovered. When all scans were clearing I prayed long to thank Him.

All this time I had never personally met Jezus though, but my brother did, and how! I was amazed with his experience. My sister told me about her experiences with the angels, providing her protection and comfort. I realised something was missing in my life as a Christian. Something more personal.

Then cancer metastasised in my brain water, and I had to undergo radiation and immunotherapy. Fighting the side effects made my heart beat out of rhythm. While holding my wife’s hand, I was waiting every time when the next beat would come. I cried out and said I don’t want to go, I am not ready… We waited patiently until my heartbeat recovered. When I shared this with my siblings, my brother said: Jezus’s spirit was in you, just talk to Him…
And so I did from then on.

Jezus listened and responded by strengthening my spirit and hope, helping my body recover. He helped my wife care for me, visit the hospital so often to get the right medication. He made the doctor always respond promptly and help her mentally to push me forward. Who could wish for a better nursing team!

So I realised Jezus had been with me all those years, always, also at sea during all those terrible storms. Had I only realised this earlier…

I wish to radiate this awareness that Jezus is in all of us. It’s so easy to talk to him and get his help. It makes me so happy. Now I understand the happiness of my brother. I start at home so that my wife and children can hopefully experience the change in me as he guides my path and actions.

I have to start at home, get help in taking on this task and work tirelessly to succeed. Not with the objective to convince or convert, but to share the peace he brought me.


Cor Arie Beetsma, 21 Dec 2021