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. 

Putting things in perspective

We visited dr Zenda (my radiologist) at the Kashiwa National Cancer Center, specialized in Proton beaming treatments. During the last visit in Sept’19, he was so happy to see us as he had been very worried about me. 

Now he told us that I am only the third patient still alive of all patients with metastasis. An old timer of 80 yrs, lives 7yrs, and another patient lives 5yrs. I am no 3 with 3yrs survival! 

He continued to explain that I was/am the first and only patient where the decision was made to stop immunotherapy treatment. At first they had doubted due to the many metastasis, but they are now studying why my miracle happened and how to repeat it.....

Dr Zenda hoped that I would set a record like getting older than 80. I smiled confidently and told him that I no longer felt being a patient. His jaw dropped hearing about my Mt Takao hike the week before. He laughed when my wife said that I would become 100! 

So we had a great time. Friday’s is not for outpatients but he had accepted our appointment today by exception, to meet us as friends, and so would he do at our next appointment in 2021! What a great feeling that the medical team is counting my years of survival. For them I am such a special breakthrough case study.

Yesterday I was happy with a clean scan, today I am happy to be a miracle, tomorrow is a gift, like every day to come!

55th visit

Today is the 55th visit to hospital In Japan for checkup and treatments. The blood sample was taken and then I realized how time flies (when you have fun....) My experience is that when the mind has found peace and there is hope (perhaps because of) that there is no time to worry. All that is left to do is to enjoy all small things that happen everyday.

I believe that hope is the start of healing and recovery. The will to survive provides the energy to the body to kill cell after cell. Thinking about that makes you marvel at the wonderful mechanisms at work in the human body called immunity. It’s worth realizing and reminding that the power of self healing requires a lifestyle that supports it.

The speed at which society resumes rushing, worrying, selfishness, and other habits I have come to avoid is really beyond my comprehension. To start  a sustainable lifestyle requires apparently more than life threatening disease of oneself, family and friends. One thing is clear, it will never happen by free choice.

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?

Cancer and Corona

The immune system of cancer patients is the topic of many discussions nowadays. How will it react to Corona infection during and after immunotherapy? No clear answers except that there is a an increased risk of complications.

Cancer patients can’t get their regular treatments in Holland and are also cut off from the assurance of regular checkups. Lucky my last checkup 2 weeks ago in Tokyo continued as usual. Somehow Japanese react differently this pandemic.

I read that a Japanese flu medicine worked well in China and Japan to reduce the effects of the new Corona virus. It’s under trials now to validate it’s effect and to release if to all patients. This same medicine is used for regular flu jabs, and maybe the reason why there appears to be more resistance in Japan.

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.

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. 

My message

I have received much feedback on this blog, how honest I am in writing down my experience and feelings. When I read how other patients and their care givers are struggling, I always wonder how my experience can help them.

A blog is one way to reach out as well as participating in a Facebook group. Each has a target audience and thus a clear objective. The blog is to keep family and friends informed, the commenting function was used by some and others responded personally by mail. The Facebook group is to share experience among patients and caregivers.

A book has the potential to reach a wider audience. However, if the goal of the book is unclear, the message and appeal to the audience is missing and nobody will be interested to read it. My experience will only be of value if there is a compelling message for that wider audience.

So who are these possible readers? What is their motivation to read my book? I have learned that patients and close family want to have information on the latest treatments and their side effects. Friends and distant family are interested in which support and actions are valuable and most appreciated in each stage of sickness.

General knowledge on cancer survival can also be a motivation for readers who are not directly related to a patient. Also, the earlier cancer is diagnosed the higher the chance is of survival, so it’s valuable to know which symptoms can predict cancer in an early stage. Once cancer is diagnosed, it’s valuable to know what to do (and what not to do) to increase the chance of survival.

Nowadays cancer is no longer a death certificate. This is very different than even 5 years ago. There are so many new treatments emerging that it’s important to get oneself informed about it. Knowledge of the possible treatments increases the chance of survival. Going for second opinions and learn about possible treatment options reduces stress.

Reducing stress increases the chance of survival. A positive mind searches for a way out. Having options reduces the chance of depression when a treatment doesn’t work. It sounds so logical, but when the first tell-tale signs of cancer appear, a typical human tends to ignore it and think that it will disappear by itself like a flu or a cold.

Cancer doesn’t go away without treatment and therefore requires an active and hands-on approach. Read up, get yourself educated on the latest treatments, and of course, live a healthy and preventive lifestyle. This is the message I want to share with you. My book should encourage and convince the reader that now is the time to start.