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! 

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… 

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! 

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….

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. 

The breakthrough

My strong recovery will, fuelled by love from all who prayed and cared for me, pulled me through, forced me up me up so many times to drink. The facial palsy I had developed in September was the cause of for my dry mouth we found later. Saliva supply had been reduced to only the left side.

The complexity of root causes made me loose my confidence in applying what I had learned in my previous battles of recovery. I felt lost en desperate, but then again this new peace came over me, even deeper and more comforting every time I felt unsure what would happen next.

This couldn’t be a coincidence and I started thinking and came to the happy conclusion I was no longer talking to myself but to a new friend inside me. My talks to pep myself up, to analyse and find ways out became prayers. And how Jezus answered!

I was saved! Forever! Where I had struggled with my trusted but distant Lord, my Father in Heaven all my life, suddenly I had a personal friend to help me with my recovery. So close, so easy to reach, so helpful, so soothing. I felt so happy. Wow! I had been reborn. I wrote it down in a testimony and sent it to my brother. It was 2Dec now.

Day by day again

The 10 radiation treatments spread over 2 weeks are done! It’s all a blur now that I look back, but I do remember the desperation I felt every morning. Getting up and eat in time before nausea would stop me. Work became harder and harder, so I stopped in the second week. The trip to the hospital by train lasted more than an hour and being stuck while feeling sick was stressing me out.

I managed except for the near last day. Just before I had to leave home I became so sick, I cried while waiting for it to reside. Our sweet cats visited me and their loud miauws really pulled me out of my misery. I rushed to the hospital where I realized I had to overcome nausea while being pinned down by my face mask. Man, I have not felt more miserable ever…

Now that it is all over, I can deal with my cooked brain, red burnt skin, humming ears, falling hair, and annoying dancing black spots in my right eye. Appetite is gone, so I find relief in Japanese powders to kickstart my metabolism. I need that to make the immunotherapy protect me from spreading metastasis, like it happened in 2017 after Proton Beaming. Fear is hiding everywhere…

Living day by day has returned, and is saving me mentally. I remembered how I had worked my way through the nights after surgery, dealing with pain and fear of the unknown. No need for scenarios, just one: make it through this day, enjoy small improvements, laugh when I can, make bad jokes when I can, enjoy breaks in sleeping at night and be happy when daybreak comes…

Dealing with fear is easy now. I pray for help, easing of fear and nausea, and it works! I feel so blessed with all support I get, apps of support, mails, lovely prepared meals, smiles… There is no other outcome than peace, and enjoying having my loving family and friends around me. I just need to know it and be aware of it. Not shutting them out and try to do everything by myself. Let love flow both ways…

Doubt

It’s a month since the radiation treatment. The ups and downs were expected, and the confusing combination of side effects and after effects is hard to handle. I am used to the pattern of Opdivo side effects. Having the after effects of radiation added to them makes me confused. I lost my anchor which predictability provided me.

I realized (again) that information of what to expect is so critical in being able to prepare myself mentally. So why is this? Why isn’t flexibility enough? I have a mind trained in dealing with repeated setbacks, handling the inability to go out and enjoy nature. Doubt that treatments may not work cause periods of sadness and depression. Doubt can’t be stopped.

I wrote a poem about mental fatigue and feel it’s the reason why doubt has started. I can get used to a lot but I have reached a limit. I wonder what is happening in my head, the damage radiation has done while killing the tumor. Another 6 weeks before the next MRI scan....

I like to be in control of my life and I don’t have feelings of being a victim of an unknown force. I feel no anger nor do I have feelings that life is unfair. Somehow I accept whatever is thrown at me, the inevitability that nothing is sure in life. During my life, at sea and moving from country to country, I have learnt to prepare for the worst, both practically and mentally.

Deep solid self confidence originates from authenticity and trust in God. Where would I be without trusting a higher force guiding me wherever I go and protecting me? The reassurance that everything will be fine is not matching how weak my body feels. I need to sleep every 5 hours or so, as my mind and body simply can’t continue. 

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.

Adopting healthy habits

Eating healthy is the first thing that comes to mind when thinking of healthy habits. This is common sense when thinking about what the most common cause is of sickness: being overweight. Deciding which habits keep you healthy and happy is not reserved for cancer patients with a pandemic on our hands.

I listen to people who don’t want to adopt change, don’t want events to be postponed, who don’t believe closing schools is a good idea. To me it’s all the same: nobody likes to change their comfy lifestyle, especially not because of a government decision. But what if you decided for yourself what is the right thing to do?

It’s everyone’s urgent decision. Why not start with healthy habits suggested by medical experts instead of worrying, watching media, staring at trends and stockpiling? I remember the period after hearing I was diagnosed with cancer clearly. It forced me to rethink my life, my habits, my stress patterns and come to terms with my deepest fears.

So why is having cancer so different from deciding to start living a healthy lifestyle as a healthy person? Why is the lack of urgency such a recipe for repeated delay? Because cancer gives you a clear deadline. Not by choice but by nature. Nature provides us many such signals, if only we would listen and act.

Feeling blessed

The last months have been different. The treatment has killed the cancer cells, and I constantly think that I should feel healthy. This belief appears logical right? I have been fighting for more than 2 years for clean scans. Then why does my body hurt all the time? I never felt this way the last 2 years.

As I wrote, I have to accept it, be patient and be confident in my recovery. Unexpected pain is apparently part of recovery. This acceptance is the basis of finding purpose in life as a cancer survivor. Side effects of radiation and immunotherapy can be permanent. The effects are not documented as the treatment is too new.

One way to help accept that I need time away from office to recover is to find the benefit of taking a step back. Work provides me a chance to forget about the recovery process, and time off is obviously meant to enjoy my hobbies. The mind never stops, and I have learned to direct it at useful things instead of trying to make it stop.

Work has provided me the much needed change of focus for my mind, a change of mind so to say. The same is now happening at home when I need a break to treat my pain and do the strengthening exercises. I think over the difficulties I face at work and the solution presents itself and I write mails immediately to share the idea. The mind then loses interest in work, and I can enjoy my time off.

That’s it! I now enjoy the time to recover at home, and many a times need it to resolve complex issues. I have to admit that I was able to do this at work before I became sick, and miss that professional capability.

I am mourning the loss of my health and my energy at work. I feel depressed and tears come when the endless pain is keeping me awake at night. But when the sun rises again, I learn to appreciate this new balance. It’s what motivates me to become strong again and get ready for a beach holiday with my family and play in the breaking waves.....

Pain, pain....

I now have 2 months of severe pain in upper arm muscle and shoulder joints. The nights are the worst. I don’t know how to sleep. Turning and twisting unexpectedly sends jolts of pain. 

It’s written as being a side effect on Opdivo websites, confirmed by my oncologist.

As do other patients undergoing the same treatment as me, I am taking hot baths, visiting my chiropractor/physio to correct my posture, stretching, yoga, take walks, go cycling, go for massages. I do anything that keeps me moving. 

I stopped pain killers and pads as it’s just not helping enough. I stay active❤️ and hope it doesn’t spread and above all that it’s not permanent. 🙏 sigh....

Arthritis and muscle pain

Arthritis .... I have heard about it, my mom had it in her fingers, my sis is getting it in her fingers too. Now I suddenly have it in my shoulders. I can’t put on a jacket without jerking pain. Sleeping on my shoulder is history as I simply can’t fall asleep. Jolts of pain in my upper arms, like knives....

I read the message boards and find many patients with the same side effects. Opdivo, while killing metastasized Melanoma everywhere in the body, it can infect all joints and muscles. My wife said that more of my hair is turning white. I wonder what will happen next. My intestines play up after every infusion, but I now have the medicines to control the worst.

Headaches come and go, my strength is waning and I felt sad to go home early on the sports day of my daughter. I need to estimate how much energy I need to get home and leave in time. I found myself sitting on the station platform, eating and drinking as I simply could not continue in the afternoon heat.

This afternoon I went cycling for an hour, and it felt wonderful. I am tired now and hope sleep will come. These days I take a painkiller before I go to bed, just to get some rest. My daughter suggested I should try to sleep sitting up. Love continues to pull me through! ❤️

5 things to be reminded of not doing

I came across this quote, of things to quit doing:
- Trying to please everybody
- Fearing change
- Living in the past
- Putting yourself down
- Overthinking
As I run out of energy so easily at work, I ask myself what applies to me these days.

Trying to please everybody is creeping back in, as I have expectations of myself again. Leading and managing a team has been put on hold last year, and I miss the thrill of achieving goals against all odds. So I am keen to prove myself to others that I haven’t lost it, that I am still capable of moving mountains. This is not realistic as I am not able to handle adversity, conflict and stoneheads anymore. Pleasing myself is a trap I realize as my expectations are too high. I need to step back and let next generations handle things even if they don’t go perfect and don’t meet my high expectations. Let it go!

Fearing change is lurking around every corner. The change I have come to fear the most is not being able to enjoy doing stuff. I need to rest more and more, and spend lots of time NOT doing anything. It leads to overthinking and I will come back to that later. Another new fear is that of irreversibility: that I will not recover to who I was, both physical and mental. I have not come to terms yet with my body aging so rapidly due to the medications. I have learnt to face and handle fear by admitting it and analyzing it. Time will find a way to deal with it. It’s important to not worry about the future, and enjoy what I have and what I can do.

Living in the past is what I referred to earlier as irreversibility. Not being able to enjoy sailing anymore, nor travel, nor testing my limits makes me feel depressed. Having heavy headaches and stomach pain is not easy to deal with when memories pop up out of nowhere, longing for being one with nature and the world. I then need to force my mind to be present in the now, which takes tremendous and continuous reminding and redirecting during meditation. To stay in control of the mind and enjoy what I experience everyday requires conscious living.

Not being an able bodied seaman anymore can easily result in a downward spiral, which happens when I feel sick and my mind gets a free hand. I am not satisfied then with what I am able to do and put myself down. I am glad I am aware of this thought pattern and am able to pull myself together once side effects of treatment fade away. Literally pulling myself up as many times as I can every morning helps me recover my self esteem and my self confidence. It requires lots of mental effort after every bi-weekly treatment.

Overthinking the life I live is an easy pitfall, including the chances of recovery, the financial risks and so on. Meditating in order to get this sticky mind of mine under control has become a good habit. The rhythm of work has become a blessing with a downside though and that is: it requires focus and thinking deeply about all possible business scenarios. I read and analyze many reports, resulting in new habits of thought and honing thought processes. The pitfall is to let this busy mind of mine continue after I come home and relax. It requires discipline to tell myself to stop and enjoy time with the family.

Thank you that my son came over and that we can spend time together. I am so fortunate that my family provides me the motivation to stay focused on recovery and be happy with every little  progress I make. Saying ‘Thank you’ as often as possible and necessary is important.