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

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!

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!

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

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…

The other side, sooner or later…

It was a special day, celebrating the end of the week while lying still. Pinned down by the mask has become a comforting feeling. They know what they are doing, with pin-point precision. Radiation 6 is done, and only four to go. My oncologist said that I could get steroids to ease the nausea, but it would affect the effectiveness of the immunotherapy. What a choice…

After having diner on the way home, just in time to suppress the nausea, I took a bath to wash away the hospital. I wonder now why my appointment with God is again delayed. Everyone has an appointment at the end of life, and mine has been postponed several times. It feels good of course, to be able to spend more precious time with my loved ones.

Deep inside I wonder what the end will be like. It has been postponed with surgery, medicines, radiation, and will continue to be postponed using latest developments still to present themselves. Gratitude is what I feel, and humility. This is not a test of willpower, no, it’s a test of patience, trust and spirit. Walking to the radiation room, makes me feel like a lamb, ready for the end. Everything is ready, because the end is near.

But, Everything is also very ready to continue... I am ready to continue for certain! So what will it be like when the tide turns, when the scan in January shows that it hasn’t worked? What will we do? Or not do? I believe it’s time to consider deeply how I will deal with that news, 5 years after the first diagnosis. 

It’s like the old cliche: ‘What would I do if I had 3 months left to live?’ Perhaps a storyboard would help me put these depressing thoughts to rest. His Peace is stronger than my fears!

Halfway point

The last 6 days were like an experience with a slow ticking clock. The Ipi/Nivo infusion was doing its job in killing melanoma cells but at the same time caused bad nausea, intestine trouble and jolting backaches. Everyday was a different combination, with radiation headaches coming and going. It seemed it would never end. 

Today I am going for the fifth radiation, and my body feels slightly better. Halfway point! Anything positive to hang on to…

Taking part of daily life by visiting the hospital somehow grounds me in reality; sitting in crowded trains, running to catch a bus which closes its doors in front of my nose... Life continues, peoples lives continue around me. So much news appears to me completely meaningless when I see the suffering in the eyes and posture of patients and caregivers. Everyone is bravely carrying their own hidden cross.

What is this type of cancer difficult to handle, both mentally and physically. It’s sleeping for months and catches me off-guard when it appears again on scans. I somehow came to terms that this is a companion for the rest of my living days. The amazing immunotherapy developments to inactivate the melanoma cellular attack mechanism is saving me time and again. 

But still… it requires a special mindset, patience, while letting Peace of God overcome my fear for the unknown. It provides for a safe haven, where I am blessed with hope. This hope is the shelter for the storm I am in.

Prayers from all of you have helped so much, and I want to thank you for that. Without you, my loved ones, it would be impossible to get through this with a stable and strong mind. I feel strong because of your continued support. 

Today is the birthday of my daughter, and I feel ok enough to join the diner to celebrate. Next week my son will start work after he halted his master studies. Startup engineer for ASML, covering all semicon factories in Japan. A bright future lies ahead for both of them, and I feel so blessed to be part of it…

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...

Alarm after a year of peace

It's been 4 years since I was diagnosed with Melanoma. I enjoyed a peaceful year on the cancer front while getting used to no travel and social distancing. 'Getting used to' is better described as 'living with'. The emotions which I feel while staying away from family, friends and colleagues are not a preference or choice, and will be temporary.

It came as a surprise to me that the regular scan showed something suspicious and worrisome. I didn't feel the blow of the sledgehammer that came with the first diagnosis but still... We all hope of course it's a false alarm. I have to put it away somehow, to find peace of mind till the next scan on 14 Jan.

It requires mental discipline to keep the door of that storage compartment in my mind closed. The prize of success is spending nice holidays, enjoying family outings during peaceful winter days. The result of opening that door is sulking in a depressed state.

A healthy resilient mindset... I often wonder how to strengthen the resolve not to think about worst case scenarios. Trust in His presence provides peace. In moments when my mind unknowingly wonders off into the dark forest, I find peace in solitary walks and keeping my brain occupied with writing and working on the model yacht. 

The second state of emergency in Tokyo encourages solitude in me, which has become my mental medicine, my way so to say. Being happy with what I have removes the urge and impatience to want more. 

I feel great sorrow for the young people who are at the start of their lives, and have to accept it has been put on hold. I pray that they are given some of the healthy resilient mindset I have found.

Living day by day again...

Feeling guilty or grateful

I read and heard several patients who feel guilty that they are survivors. They have difficulties dealing with patients who are suffering. Only a short a while ago they were living day by day, and now they are carefully planning again. After COVID-19 these survivors are hesitant to go out and express their feelings of happiness openly.

Somehow I can understand this, but when I reflect deeper I feel it has to do with maintaining a healthy mindset. I have always made great effort to sanitize my mind by stopping downward spiraling thoughts. Discipline in sanitization has also been key in identifying and freeing me from hidden fears. 

It is important to manage the level and effect of empathy for fellow patients. I believe it is a building block of a healthy mindset. Other examples of building blocks of a healthy mindset are: don’t try doing everything alone but ask for help, express love and gratitude openly, humility, keep hope and use it as a shelter, accept what you cannot do anymore, focus on what you can do, enjoy small events etc.

For that purpose I have written every experience in my book. I hope it will help patients, their families and friends. 

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.

Easter

When I first heard about the Corona virus related social distancing I didn’t give it much thought. All I thought that it was good to reduce the chance of infecting others, good to make us all aware that this pandemic requires changes in our lifestyle.

What happens to humanity when whole cities are taken hostage and hospitals are flooded by patients who can’t breathe. People in the countryside feel protected by distance, living their lives in touch with nature away from the rat race of city life.

The inability to visit elderly parents (to prevent infection), makes me painfully aware and reminds me of what isolation can do to people. Isolation has many forms. When any of the senses is not working, we feel deprived of sensations that make us happy.

Touch is just one of these, and many experience lack of touch through social distancing for the first time. But what about smell, hearing, seeing? What about people who don’t have the strength to go out, travel and stay in touch with their loved ones and nature....

My recent experience with losing much of my muscle mass during 6 days recovery from surgery is described by Corona patients after leaving the IC unit. Inability to move around freely due to other reasons than a pandemic is also ‘normal’ for chronically ill.

Let’s be mindful of this experience and not forget these lessons after life returns back to normal. We can continue to care for our fellow man, forget our differences or not let our ego or nationality get in the way. We could make some drastic survival decisions because its good for our planet as well.

It’s Easter. It’s a time to remember He who died at the cross for us. We are asked by Him to carry the torch and spread the light. We are all capable to radiate care, warm the hearts of those in need, and reach out to the ones who feel isolated.

We are capable to change our lifestyle when the reasons are compelling enough, or.... when change is brought upon us by nature. Those no longer strong enough to fight new and old diseases pass on. We know this, yet, why are we caught off-guard?

The life after?

It’s been a while. Work has been keeping me busy. Things are not going the way as planned which is hard to handle. My body gets stronger and I can take the pressure. But I also feel that something is changing inside me. I can’t put my finger on it, but I live like I am no longer sick.

My batteries are charging constantly, not only when I am resting. My mind is busy finding solutions in ways I haven’t done in more than 3 years. I feel fresh and tired at the same time. Tired of getting back into the life I left behind, a life of endless stress and planning and surprises.

When I was down and battling in survival mode, I never thought about this. Now that I am able and motivated I think back and can’t find the meaning of getting back into who I was. I am no longer that person, it simply doesn’t feel like me anymore. Who have I become?

Of course I continue to fight for the right things, for the team, for our goals. I want to build something, something lasting. But due to constantly returning limits, it doesn’t come to fruition. The vision we have is not becoming real. And I am loosing control over it.

I realize that my identity has blurred. I want to identify with a good cause, with a great purpose. What if that is not my work as I always thought before I became sick? It’s so obvious that going back to what I was at work, is not the answer to fulfillment. It’s staring me in the face.

I need to let it go. Control is for the next generation. I am ready to advise, consult and make way. This is what I have to learn, how to practice it and not fall back into old patterns of being in charge. I need to learn to let go. Find, or make my own new spot in this world.

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. 

The impact of graduating

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

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

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

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

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

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