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!

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. 

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.

Brain fog, dizzy, disconnected

Aaah, I thought I was ready for some serious work related stress! I thought I could engage again and lead Engineering work automation change management, digital transformation, new business models, etc etc. My passion for this stuff is tremendous, as is the resistance to change in every corner of our company.

So I have strange symptoms of dizziness, disconnection, strange lapses of presence and so on. When I explained this to my oncologist he nodded and suggested that it just might be related to work stress. My resistance to continue trying to work 5 days a week from my desk, and again pull my weight everyday started to crumble. I nodded in agreement and wrote my bosses a note to have a chat about this next week Monday.

So there you have it. I am facing the reality of the imbalance between my super strong spirit and my struggling body. It sounds so simple to write, but when I realize I am in a deep dip it’s already too late. Not that the damage to my body is irreversible, no, but the damage to my confidence has been done.

And that’s where the darkness starts at the bottom of an empty well. Slippery walls surround me and there is no light up there. The only strength I have left in me is my spirit. I go on my knees again to pray and thank Him for that gift.

So, I need to climb out again, as so many times before after facing reality of my current limitations. I say current, as my hope of recovery is strong and unwavering. There is light up there I realize, as soon as I close my eyes, stop my will, and start enjoying the moment of peace. It’s not imagination, it’s real, it’s visible and I can feel the warmth of the sun shining straight down on me.

So, another setback has come and gone. Staying strong and finding strength inside in a still mind is what heals all wounds. Recovery and healing only happens in a body which is at rest and is not fighting battles which others can fight. I need to remind myself of this, and not slide down the slippery slope of work induced stress. My basic integrity to do my part at work is getting in the way again, and again.

J-class Rainbow, 1934 defender of the America's cup

The days at home recovering from treatments get longer and longer. So, as I mentioned in my previous blog, I decided to start building a model of a J-class yacht. I had been looking for a completed model in shops for many years, but always found them too ugly. I needed one with enough realism and detail to enjoy the beauty of her lines and feel the sheer size of her class.

Enjoy a short video of her history and how she has been brought back to life.

Rainbow - a J-class yacht with a past

Here are some images I found on-line which provide an example of how she was sailed and how the rigging looked like. I use this to make the model more realistic, and not just follow the instructions. 

Action on deck

Leaning in

Close hauled

It will take a year. to build this model.

The owner Vandebilt at the helm

The owner Vandebilt in port

Look at how tiny the blocks are at a scale of 1/80. This took me an hour! You can see it hanging next to Mr Vandebilt in the picture of him at the helm of his yacht.
Its really tough to get it right so I use the contraption shown below.

Not happy yet with the first mainsheet block I made

The contraption to help my eyes to focus

Blood test result

On Monday 21st May I went to hospital for the 20th infusion of Opdivo. The day before I had the pleasure to trim some of the trees in my father in law’s garden. Some muscle ache was the result but nothing serious. I had a great sense of satisfaction to have contributed with my brother in law, and felt a sense of normal life had returned.

Nothing prepared me for the bad result of the blood test on Monday, which saw 2 values come in much higher than usual. This indicated that liver and other organs had problems. The slightest hesitation of the doctor made me realize that my treatment could be stopped any moment the blood tests were too alarming.

Lucky he decided to continue as planned and I had my infusion. Instead of my usual rest day after infusion, I had planned to join a global meeting. However, I felt drained and when I reached home I knew I would not be able to work the next day. The realization of the severity of my health situation hit me very hard. Ending the Opdivo would leave me with no other treatment option.....

Today I met with old friends at work, and could reduce my worries by just being distracted by discussions and meetings. I also joined the group diner and could enjoy the time together which was the first time in more than 6 months. I do realize (again) that even though I am on a steady path of recovery, this is the last possible type of treatment for me.

Let me pray that everything goes as planned and that this was just a false alarm. In three weeks I will have another blood test followed by the planned infusion, and then I hope the blood test is back to normal.

The day after, staying the course

This morning I feel like a punching bag. Swollen inside, from being hit all night by imaginary boxers. The medicine really brings the fight to every part of my system. The results of the blood test is now near normal, except for anaemia (low level of red blood cells) and ALP (enzyme indicating metastasis).  I had woken up many times due to dehydration, to clear my nose and throat and to drink. It's a common side effect, draining much needed energy.

So I stay at home after walking my daughter to school in the fresh, early autumn wind, warmed by the pale sun, feeling lazy and let the body recover. With foresight, I asked my colleagues not to count on me, and planned back-up for critical review meetings. This makes me feel relaxed and not guilty of chickening out because of a little discomfort. 

My quietly loving wife just gave me a delicious cake with whip cream to go along with the coffee (original Douwe Egberts, hand carried by my son form Holland). Sometimes that is all it takes to motivate me to get going again and 'kick the can down the street' so to say. Like my sister Tinelies, earthly sweet comforts have always settled my mind, mouth and stomach in times of sorrow and grief.

All my life I never cared much about winning. Also now. I care about harmony in body and mind, and socially, about all who love me and who need me. For all of you I fight so that I can be with you. That is also one of the reasons why we live in Japan as this society is based on social harmony. The quiet, selfless caring for strangers heals me unconsciously. It soothes my mind, and nourishes my spirit.

That deep drive for harmony, is my Brandaris, the lighthouse on the island Terschelling where we went for holidays as kids, and where I went to school to become a sailor. My mother who instilled this passionate drive for harmony in me, painted this lighthouse and it found its place on our wall in Tokyo. The reliable flash, every 5 seconds, provides the comfort to a sailor like me, when passing the treacherous shoals hidden under the white crested waves. That is the closest depiction of what life is to me, and what guides me through it in times of trouble. 

Not having a strong will to win can be tricky, because while lying awake in the quiet solitary hours of the night, it is easy to think: 'when the end comes it comes' and let go of all gritty spirit, feel like a small blink in the nightly skies, like a tiny fish in the wide ocean.

Its therefore important to take time to recharge, to re-establish 'the why', to stay focussed, stay the course and be strong......

Beaming mask preparation

On 31 March, after the MRI, I was brought to the CT scan room.
My wife joined me as it was time to create my mask for the beaming simulation and treatment. She translated when I wasn't sure about the instructions.
I was asked to lie on the CT scanner bed and a sheet of warm plastic was draped over my face and throat. It had holes to breathe through. While the plastic was cooling down it hardened.
I could crack a few bad jokes to release my tension, and lucky enough I found a eager audience who enjoyed my jokes in the attending nurse/technicians.

I had no trouble with claustrophobia as I was focusing op deep breathing through my nose. It felt very pleasant until the moment the attendant said two fingers would be instered into my mouth to push the plastic in. This would prevent my mouth from closing during beaming.
Once the plastic was hard enough, the fingers were removed and I heard the man say that I had bitten on them. Sorry! We all laughed.

When the mask was ready, they connected it to the scanner bed so that my head couldn't move an inch. My mind wandered off and when the scan started I suddenly realized I was short of breath and couldn't move my head. I started breathing very fast through my mouth and was panicking a bit.
Only when I got my breathing under control and started deep breathing, I slowly started to relax.

This feeling which I had for a few seconds stayed with me the days afterwards. Brrrr. I woke up in the middle of the night remembering my moment of panic.

Deep breathing yoga excersizes are needed to practice during the upcoming treatments.

Permanently return to Japan

I heard today that the company decided to repatriate me to Tokyo before 1 July. This is part of standard policy when staff get very ill while posted overseas, and the other side of being an expat: you can be called back anytime! Anyway, its better then the 1 April which was earlier imposed which would have disrupted my treatment and give us tremendous (unnecessary) stress. The letter I have written to management to ask for flexibility in the return date has worked. Thank you for that.

This new date gives us time to plan the move after my treatment has been completed in April. Especially for my daughter we have to find suitable schooling, and live nearby so she doesn't need to travel by overcrowded trains. Can you imagine an 11 year old girl? My wife will have to bring her and pick her up from school, so I will gladly sacrifice 2 hours per day to make that easy and short for them.

With that 'surprise' out of the way, I can and will now focus on getting well and as a family we can settle back into Tokyo lifestyle with its pro's and con's. We will be able to enjoy the autumn and I look forward visiting the many parks for my long term recovery.

I keep on looking positively at these twists and turns in life. As my mom would have said, it's no point to swim against the current, and we will be able to make the best of it. Enjoying the ride, including the ups and downs!

New daily rhythm

Early morning:

• Wake up between 5-7am, blow my nose and flush it with saline solution
• Take a tablespoon of cold pressed sunflower oil and swish it in my mouth while smiling, meditating, preparing yoga mat, soothing music and prepare first mug of green tea.
• Spit out the oil mixed with saliva, imagine all toxins left the body with it
• Take a huge slice of japanese pink ginger (sushi)  and chew it as long as i can. The taste buds on the sides of my tongue scream but i get a deep, satisfying sense of cleansing.
• Do yoga while smiling, followed by light excersize for 1 hour. Feel exhausted and rejuvenated.
• Have a second mug of green tea while recovering, meditate and chew patiently on celery, carrot, bell peppers and cucumber.

Breakfast:

• Take with breakfast: vitamin B-complex, 2 sunflower oil tablets, anti-hystamines.
• Breakfast is a glass of fresh apple-carrot juice and miso soup with lots of tofu and boiled cabbage. Drink water and a mug of earlgrey tea with milk.

Morning:

• Cherish my only cup of caffe latte with cinamon powder.
• Snack on veggie sticks.
• Steam trough nose with tea tree oil for 15-30 minutes. Smile while doing it.
• Go to office, meet with people, have teleconferences, mimize travel, delegate clearly, let it be and depend on quality staff, let them grow by being a calm and positive radiating role-model, minimize e-mail reading. 
• Think positively on any info coming in, any opinion has good intent. Stop thinking suspicious thoughts. 
• Let others worry about their own hidden agendas and delegate the task to themselves to check if they make progress on it. Make fun of them in your mind observing their tricks as they don't bother or touch you anymore. Laugh and shrug it off.
• Stop trying to control progress in everything. Let it go and check on it once a week with the person you assigned to it.
• Walk home, enjoy the sweat, smile at people around you, enjoy nature, be happy to live.
• Cleanse the nose before lunch with saline fluid.

Lunch:

• Lunch is a bowl of yoghurt with chai seeds, honey, cinnamon and cereals, and a bowl of cut apple, chinese pear and grapes. A mug of green tea goes with it.

Afternoon:

• Take a nap.
• Work from home. 
• Cleanse nose around 4pm and take a warm bath with 4 drops of tea tree oil. Relax in the bath, not too hot, smile and breathe in the damp and oil through the nose.
• Spend time with my wife and children, joke and hug.
• Stop trying to be the perfect father and spend that time and energy being with my family. 
• Swim as many laps as possible, feel exhausted. Rest at poolside in the shade. Enjoy the warmth of the sun.

Diner:

• Diner is the same as the rest of the family. Lots of green leafy veggies, broccoli, soups, sea food, no processed meat. More fruits for desert: citrus, apple, pineapple, pomello, grapes.

Evening:

• One more time cleanse the nose (after diner) at least an hour before sleeping so the throst can re-establish mucus balance to prevent dry throat while trying to fall asleep.
• Watch a movie together or talk about positive changes and how to remove stress in life.
• More green tea.
• Before going to bed a detox glass of virgin oil, a lime, honey and hot water. It makes the bowels move smoothly and removes any toxins with it.

When waking up at night:

• Drink a cup of barley tea
• Sit in lotus pose, feel vibration through the body with 'oohm' and smile while breathing through the nose.
• Put on warming eye mask.
• Lie down, breathe in through nose (4sec), hold breath (7sec), breathe out through mouth (8sec).

Weekly/monthly:

• Every week take an oxygen treatment session (Hydrogen-per-Oxyde (H2O2) or Ozone (O3))
• Every two weeks check if anything is lacking in the diet due chemo side effects, changing energy levels, boredom with same diet.
• Review if you really let go of controlling everything. Write down which pattern you still fall back into. Try harder and smile at your silly mistakes. Never get angry with yourself. Any progress is good progress.
• Eat a cookie or favorite candies once in a while. Dont be too strict or hard on yourself.
• Talk with beloved family by whatsapp/skype and exchange views on progress.
• Plan a diner or coffee with good friends, have a glass of white wine, laugh a lot, crack silly bad jokes and enjoy conversation.

10 ways to reduce stress