The blessing of Hospitalization

The last days have been difficult in a sense that pain was very difficult to manage. First I had no clue how to lessen the pain, as I didn’t know the origin, and secondly the provided painkillers were not sufficient at night to put me asleep. Twisting and turning actually made things worse. 

Things started looking up when I found out that I had to wait until the cramping and accompanying severe pain would subside. After 3 nights of painful struggle I could finally find a position to sleep in! The next sign of bigger problems to come, was when I fell several times as my upper simply gave way. 

That’s when my doctor decided to admit me, and do a full checkup incl CT and MRI scans. Once admitted using taxi across Tokyo, and wheelchair to check me in, my body already calmed down. Not having to hoist myself up and move on hands and knees to the toilet made me relax. 

Policy is still no visitors due to lagging loosening of COVID rules. My wife therefore had to say goodbyes before I went to my room with a nice view of the SkyTree. I felt very lucky…

The scan of pelvis and head was done soon after, but the position flat on my back was very painful as my legs cramped when stretching suddenly. Even after adding a triangular pillow under my knees, it took a while for my legs and hamstrings to relax, the pain to subside so I could finally lie still. 

A relieved doctor Namikawa soon came and told me the good news that there were no new metastasis to been seen. Great! However the MRI of brain and spine would tell another story soon…

The young assisting doctor Wada told me that the painkillers were doubled to make me sleep and relax my muscles. I felt in good gentle hands, and adjusted quickly to the room I shared with three other patients. They were so quiet in daytime but I was ready for a good snoring orchestra. I had brought my earplugs!

The painkillers gave me 2 times 4 hours of healing deep sleep which I had longed for for many weeks. Yummy and healthy Japanese dishes 3 times a day! A sweet team of nurses to drive me around in my wheelchair for toilet visits and brushing my teeth. I was beginning to have a great time.

The toilet for the disabled was quite a drive and it suddenly dawned upon me that it was me who was suddenly disabled. Nurse Nakamura pushed me with great speed. The fresh wind in my short but growing hair made me laugh. I explained her that her sounds of ‘hoi, hoi’ made with her every action, reminded me of the Dutch ‘hoi hoi’, which is like a informal greeting. 

We both laughed, her English was perfect as she had studied in Canada from 9-12th grade. She had made that decision by herself! Amazing, what a challenging mind at only 15 years old!

My second day just started, and they are preparing my morning medicines. Food will come soon too, and by 10am I have to change rooms. New snoring orchestra! Yey!

Traveling pain

I kept a record for a week on pain patterns. On Sunday I raised the alarm that the painkiller wasn’t working. Pain reduced because of steroids. Today my wife visited my doctor and I was supposed to join her were it not for accidents on the stairs due to nerve pain. The doctor said that the pain was not due to cancer as it travelled up and down.

He had checked Yervoy records and there were rare cases where it had affected the nerves. He prepared a prescription for medicines to calm the nerve system, repair it, and suppress the related shooting and constant pain. I just took the pill after diner and b12 vitamin, which helps repair nerve cells. I will wait a few more hours until I can’t feel any of the pain which has ‘befriended’ me the last week.

Wish me the good fortune that the analyzing conversation between 2 angels (my wife and doctor) resulted in a clear image on which basis dr Namikawa could prescribe the right medicines. My ordeal of hopeless and endless nights in search of sleep has surely come to an end. 

Such a strong belief and conviction has helped me so may times in the lsat years. My prayers also were very specific this time. Where I usually pray for others in need, I have learned to ask for help by directly asking Jezus. That request, I believe, has giving me the power to joke to myself how many positions I tried in a night to find rest and remove the agony.

Now it’s just a matter of time and constant posture reminders. Hope has returned, not wishing for a quick recovery, but for steady irreversible healing. The light of angels protects me from gloomy thoughts and keeps me away from depression. I feel truly blessed!

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

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

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

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

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

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

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

A life of Quarterly scans

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

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

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

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

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

Being the observer, the passenger

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

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

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

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

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

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

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

The impact of facial palsy on my vision

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

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

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

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

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

Talking to my therapist must continue…

Balancing emotions with my thoughts

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

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

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

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

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

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

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

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