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

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! 

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.

The last treatment

 I had a chat with dr Igaki, my radiologist for the cyberknife treatment. Muscle pain, nausea, and questions about having a haircut were all answered. Got some medicine to keep the nausea at bay, and some reassurances all side effect would disappear in a few days. He chatted in English, and made me feel very comfortable. I now eat 5-6 times a day, as my wife said, it’s the same remedy for morning sickness.

I will have to come back every three months for MRI, and every month for Opdivo infusion. They expect the tumors to be gone in 6 months so let’s hope for the best! Life will continue as before, with a positive mindset and living day by day. No long term planning anymore, as this melanoma will stay with me forever. It just sleeps.

30 minute radiation, lying still while listening to the piano play. The robotic arm makes funny sounds while repositioning itself to beam another precision shot. It sounds reassuring, my eyes closed, having trust in Japanese technology and the beautiful mind of my radiologist.I am in good hands.

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?

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.

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.

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.

Looking back before infusion 53

It’s a lovely autumn morning, the sun shines and I watered the plants after bringing my daughter to the train station. Had breakfast and a coffee and all that action before 7:30. Today is a normal day after so many visits to the specialized cancer hospital in Tsukiji, the famous place in Tokyo where the fish market used to be.

I have come to approach the treatments as a meditation in itself, settling into a frame of mind which accepts and soothes any burst of anxiety. I am following after all a very new type of treatment for a sickness which was lethal only 5 years ago. No longer! Melanoma is no longer a death sentence as long as it’s found early.

I am so fortunate to live in this era and to have decided to switch hospital, country and treating doctors immediately after surgery. I read that this is not practiced in Holland. Many patients just follow the family doctors advice without getting a second opinion. My wife flew to Tokyo to visit the specialized Melanoma hospital which had access to the latest and most advanced treatment methods.

Such advice is hard to find when you are in shock with the news that you will die soon. Clinging to any advice which feels comfortable is what most patients do naturally. However, we studied and studied and asked questions until we had found a sufficient number of fall-back plans. I don’t know how to urge patients to do this as many stick their head in the sand and pretend it will all go away.

My book about my experiences is coming along quite nicely, I just wonder when is the time to get it published. Publishing itself has various possibilities, and I had no success in getting response from publishers. I will publish it myself I guess, as there are many online services these days. The decision that it’s time is not easy as I am still in the middle of recovery and my scans are not 100% clear.

I therefore hold on to it a bit longer, and add chapters during holidays and whenever I have time spare. Recovering my energy also has the fantastic sensation that I am too busy to write. What a difference with a year or so ago, when I sat in my chair thinking of activities to keep my mind distracted. Quite a tour de force to accept I will never return to the life I once lived and loved.

I listen to meditative messages which organize my thoughts. The risk of letting my thoughts run wild and play games with me is that I become depressive. It’s imperative to keep a sound and healthy mindset with a balanced and active body so that the chemistry in the brain stays in balance as well. The calmness which I feel is a result of all that effort.

Mind you, I had my ups and downs as I am super lazy and gloomy by nature. Pushing myself to find new passions other than work has been quite a challenge. Most people start doing this after retirement, so in a way this sickness is a blessing in disguise. I feel fortunate that I now have plenty of hobbies and ideas well before I will be blessed with pre-retirement next year as 60 is the age set by law in Japan.

Doing the right things

Last week I caught a cold which turned into something nasty and infected my lungs and sinuses. Having lack of sleep from pain in my shoulders, I thought can it get any worse? Barking away all night with a deep dry cough caused painful spasm jolts in my shoulders. I just had to get up and walk around until the itch dissipated.

I listened to soothing music and listened to talks of Sadhguru. One talk caught my attention as he answered questions on how to fight cancer. He turned the question around deftly and said why fight? When you want a flower to bloom, do you fight the earth to make it grow? Take the fight out of it and make the experience pleasant.

It reminded me again that the goal is not to get better, or to be cured. The goal is to have a pleasant experience in whatever you do. So make the struggle with pain and recovery a pleasant one, as much as you can of course. Pain is never pleasant. Do the right things, have patience in continue doing them. Time passes, and the body heals itself with help of medicines.

This message needs repeating. It’s important to apply it in all aspects of life, not only when you’re sick. Practice it when you feel well and it’s easier when you don’t have the energy or will due to pain. Doing the right things sounds so simple, but it is the foundation of happiness.

Patience and confidence

In April I had a sudden attack of muscle cramps in my arms and shoulders. That’s now almost 5 months ago. What started as a painful nuisance, slowly deteriorated in frozen shoulders. Everything I tried made it only worse. Small accidents reversed progress, sleepless nights became the norm and made me loose confidence.

As I wrote, my oncologist wasn’t sure about the cause and gave me painkillers. Confidence however didn’t return, and I lost strength and resilience. My mind lost its edge and soon I was visiting a physiotherapist and a chiropractor. Medicines to help recover from nerve pain and muscle cramps just suppressed symptoms.

Only during the holidays in August did I feel something change. I was able to stretch more and more. I felt lucky that I had been able to establish regular yoga sessions after I became 50, which I started using as a benchmark. I could kind of sense how far away I was from my normal full stretch.

Both in the clinics and at home I gradually pushed myself through the pain. Muscles had become weak and stuck, and needed a change of posture to get them operating again. Not pleasant, but the result was that I could find better positions to sleep, followed by better rest.

I am now resting one or two days before I exercise and stretch again. The intestines and sinuses are still regularly inflamed by Opdivo, which makes me extend the period of rest. Work stress mixed with the summer heat which feels like 35-40° makes progress very slow.

My body needs time to recover. All I need is patience and confidence!

Making sure

Yesterday I went to hospital to meet my oncologist and get my regular Opdivo infusion. It’s already #43, and it’s comforting to feel that my immune system keeps getting the support it needs to fight Melanoma. The Melanoma Facebook group family keeps loosing members who I shared fear and hope with.

This is a difficult sickness to fight, that is clear, but hope is growing as there are also cases of up to 7 years survival. I am now in the ‘2 year survival team’, and can be of help to many newly diagnosed patients. This family feeling helps so much, because what is shared is latest information and first hand experience.

My oncologist decided to take a PET scan and I opted to get it done ASAP, meaning today. The scan will be clear if the spots in my lung were a normal infection. It will also provide information on why the pain in my shoulders is not going away. Let’s see.

I started fasting 4 hrs before the contrast fluid will be injected at noon. The scan will be taken 90min after the injection, so that the cancer cells will have had ample time to munch on the sugar, and as a result will light up on the scan.

I will meet with my oncologist after that to discuss the result, and he informed us yesterday on the options available if it appears to be metastasis in the lungs: switch drug to YERVOY by end May, join a clinical trial with a new drug, or increase frequency/dose of OPDIVO.

I am grateful to live nearby the hospital with the best specialists and the most advanced treatments. Early diagnosis increases survival rate drastically. Pray for good results today!

Wisdom of a teenager

I am now 16mths on intensive and aggressive treatment which has reversed the damage of metastasis.   On NewYears morning, I was hit by the fact that the year ahead would be completely filled with hospital visits, infusions, side effects and regular scans. Another year of survival existence was a depressing thought.

I discussed this with my daughter over breakfast and she answered she had not enough wisdom, as she was not old enough. I didn’t agree with that, and said she had lots of experience living in Singapore, India and Japan, and that I would very much like to hear the wisdom of a 13 year old.

So she thought a bit and answered: survival is like bland tea. You need to add sugar and milk to make it tasty. So why don’t you live life a little by spicing it up and overcoming your fears? I wrote our conversation down, for her to keep, and to appreciate her support to me, and being my motivation to become healthy again.

That loving and wise advice is pulling me out of a bout of depression. Action is the only thing I believe in, so I started my 10,000 step walks again, visited my in-laws to help pruning the garden and had a movie night with my daughter. I feel exhausted, but more alive than in a long time. Thank you Marika!

Stages of battle and recovery

Before I was diagnosed with cancer, I led a normal life. A definition for normal cannot easily be given other than itt describes the state of mind you are in. Activities are planned, delayed, enjoyed and remembered. All without any sense of urgency or time constraint because why worry? There is so much time to enjoy life isn’t it?

Well, that phase came to an abrupt end when the surgeon said that Melanoma was found in the tissue removed from my nose. Slowly I started to realize that a phase of my life had come to an end. A phase which everyone takes for granted and which one only appreciates fully once it’s gone.

I entered a phase of survival. Everything I did, every plan I made had this singular goal. All socializing, enjoying, loitering, etc had suddenly gone. Something had come in its place, and that something was completely new. When reading experience of other patients, it can be read that life is never the same after diagnosis.

A year of studying options of treatments, undergoing treatment, fighting and recovery passed by without realizing it. Everything was happening in a blur, a fog, and without many memories. Somehow the immunotherapy treatment worked for me and when 2018 came about, I felt a deep sense of relief. I had never thought I would be able to think and plan beyond the next week and month.

Survival made place for hesitation to plan a trip, a short holiday, a meeting and so on. I realized i had enough energy to work almost full time again. Survival faded out , moved to the background very gradually, unnoticed and a new phase started where I found purpose in work again. Passion did not return but at least I could feel a sense of satisfaction I was contributing again. Good days came and went, and I started to get used to longer periods of well-being.

I still did not have enough energy to enjoy socializing, travel and hiking. All that had to wait another 9 months of recovery. But, like today, I realize that I start to feel bored with reading, painting the model of a yeacht, walking and work. I need more. I feel the sense of hunger for adventure again. Not the passion to change the world like I had felt in my travel and work, but a need to achieve a deeper sense of fulfillment.

A new phase has arrived. A phase of returning back to normal life. This time normal has a completely different meaning. Normal has a dimension which is linked to the passing of time. Normal now means living in the moment and enjoying everything I will undertake. This new phase brings the urge to study Japanese, to go watch a movie, to go to concerts, go hiking, and so on. It’s a very big relief again that I am given the chance to give normal life a new start!

The dilemma and green valleys

Yesterday we visited dr Zenda, the oncologist responsible for my Proton Beaming Therapy. It’s the regular checkup every 6 months. He is a gentle giant in his field and we shared the joy of Dr Honjo’s Nobel prize. He informed us smilingly that my miracle had made the department decide to treat all Melanoma stage VI patients, followed by Opdivo treatment. Until now they had only treated patients without metastasis. Yippie!

He went on to say that since the treatment was working, that the next phase of treatment had to be carefully considered. There is still no success reference which can be followed. Tomorrow I will visit dr Namikawa, the oncologist responsible for my Opdivo treatment, and I hope to hear a bit more about the actual healing progress in the detailed CT-scan report.

I was informed yesterday that my body cannot handle continuous Opdivo infusions for many years. Starting Opdivo again after treatment has ended may result in a different reaction in my body like acute organ failure. (Diabetes, Hepatitis etc). So there are 2 possible scenarios to end the treatment: reduce the amount of medicin per infusion, or increase the period between infusions. Tumors may start to grow again when the infusions are reduced to fast, so the progress of healing will continued to be monitored using CT-scans every 3 months.

Survival rate of Proton beaming is 1 in 2. Success ratio of Opdivo is 1 in 3. A new treatment is becoming available now in my hospital. It’s personalized gene mutation analysis, with targeted enzyme treatment for mutated genes. It looks very promising. Hope of full recovery is ever growing. It’s still a long and winding path on a narrow mountain ledge, but I can now see the green valleys on both sides.

I trust in providence and the protection of my God. Thank you for all the prayers, thoughts, wishes, words of support, sending dropjes with colleagues and all messages. It all helps me to stay flexible and resilient. It’s been 1.5 year since proton beaming, and more than a year of Opdivo infusions. As they say, I am living on borrowed time, and owe my life to Dr Honjo’s discovery.

Life is good

I was shocked with the news that I would have not been around if the medicines hadn't worked. I still don't know how to deal with that. Strange enough we were all not surprised with the news that the tumours are dissapearing. This is similar when in mourning; its hard to come to terms that a loved one is gone.

I have changed completely. I enjoy every morning waking at 5 o'clock, preparing breakfast with my wife and bring my daughter to the station, followed by a brisk walk and exercise. My son arrived form Holland and we spend time talking, eating, walking. Its just great how content we are as a happy and loving small family.

My second life has started, and I am aware that every moment is important and can be cherished. It can also be lived as before though, and time slips me through the fingers again way too easily. This is normal and human, as I agreed with my sister. Being honest and realistic with myself is what I gained, and when I open my mind and heart a new mission in life will come to me.

My cousin's visit

My cousin visited even though I was very worried about it!

I had delayed visits since my brother's visit as I was not fit enough for planning and supporting. I agreed to go ahead on the condition that he would plan to go sightseeing in case I would not be fit enough to see him.

He arrived on time to join me on the visit to the hospital and support me when the result of the scan arrived. He was so glad to hear that the tumours had shrunk. I was slow to accept it, and just nodded. The infusion followed and after that I realised that I was making real progress.

We walked my favourite route to the park and enjoyed the winter cold. The visit was a great success but I was exhausted everyday. I told my siblings that he would share his experience and prepare a document to help others to visit me in the future. Knowing how much energy it required to meet him everyday I asked them not to consider visiting me soon.

I am now getting mentally ready for the next 6 month treatment followed by a trip home to see my father. The planning of meetings would have to be very flexible with enough time to recover.

Planning such an event so far ahead is new and makes me excited I am able to do it. It is proof of my recovery as a year ago I wasn't able to plan a week ahead.

How to use returning energy?

It’s been a year since I was diagnosed with cancer.

Physical treatment has had several distinct phases which has a lasting mental impact: investigating so many options, deciding on sequence of treatment with highest probability of survival, planning location and timing, undergoing and recovery.

All this seems sequential, but we had to constantly go back to the drawing board and restart the investigation phase whenever complications arose. Flexibility and resilience were tested time and again. Every time the dreaded nights were long when pain and deep fears would well up from my subconsciousness.

Over time the predictable effects of treatment healed, and the unpredictable side effects took their place. These were mixed up with pain from unknown metastasized tumors. It was impossible to discern what was after-pain from surgery or radiation, what was a side effect of therapy, what was pain from a new tumor and what was a normal muscle pain or sickness related to lack of resistance.

Every time the mind had to be forced to accept by pure mental effort that what I felt was a recovery related pain, that it was getting better. I started looking for positive signs or media news even when there were not really any.

It was and still is a mental tour the force. This now affects my return to normal life. I find that my mind is easily distracted. I have difficulty to focus on my regular work and forcefully block work related stress from my mind. I am struggling how to stay alert and be ready for sudden growth of previously shrinking tumors.

I find that I am still in an alert state of preparedness for the worst. This is a fear which disappears most of the time into my subconscious. I become conscious of this fear when I have pain in places where I know tumors exist. The same is the case when I catch colds in the hollowness where surgery removed tumors from nose and sinuses. I now know that the damaged nerves and mucosal tissue will never fully recover. Simultaneous jaw and toothaches hit me very hard as a result of this as it turned out to be because of the damaged nerves.

The good thing is that the immunotherapy appears to work. Side effects are reducing, blood test results become normal and healing of radiated tissue has stabilized. Fatigue is fading and my old energy levels are returning in waves. Using this energy for recovery of mind and body is critical. I take long walks when I feel like it followed by a day of recovery from the exertion. I always go through a mental dip when I find out that such bursts of energy do not last.....

During the recent two weeks holiday I had no guilt feelings of spending energy on fun things like hiking and playing sports with my daughter. Recovering from it was a natural part of holiday laziness and my mind rested. No mental dips for two weeks, it felt great!

When I went back to work yesterday I tried to put in a full day of work and felt exhilaration that I accomplished it. However..... now I lie twisting and turning in my bed at night, writing this reflection. I must have the discipline to reserve my energy for healing and recovery. It’s a must in order not to give my cancer a chance to return.

This is what I have to use my returning energy for.

a plan has come to me

Today is the rest day after infusion. As per my experience, I have to be ready for any side effect. This time the fatigue isn't that bad, the fever isn't coming, the headaches are minor, the rashes stay away, the itching eyes are bearable and the stomach is as always noisy and painful. If ever I will be able to overcome the emotional shackles that come with this sickness, I will have to take a bold step mentally. A step to decide enough is enough.

I therefore decide now that I believe I will never be cured and that I stay chronically ill. I will take infusions the rest of my life and scans every 3 months to keep an eye on metastasis. As part of the bargain, I will resume a normal life now, return to work and I stay aware of fatigue attacks and other side effects of Opdivo.

This new lifestyle is wonderfully different from what I went through the last 9 months. It is the way to live life again as it can be, and should be lived: Enjoy every moment and be happy with what I have. Live life as if it can be lived only once! Thats my renewed goal in life.

Join me!

Good news about Opdivo

This article was published on Sept 12.

• European Society for Medical Oncology (ESMO) 2017 Congress 

News > Conference News

Clear Benefit With Adjuvant Nivolumab in Resected Melanoma

Liam Davenport

September 12, 2017

MADRID ― Patients with melanoma who have successfully undergone resection but who are at high risk for relapse have substantially better outcomes with nivolumab (Opdivo, Bristol-Myers Squibb) than the current standard-of-care ipilimumab (Yervoy, Bristol-Myers Squibb).

The new results come from the phase 3 CheckMate 238, which was stopped early owing to benefit. Adjuvant nivolumab increased relapse-free survival by a significant 35% compared to adjuvant ipilimumab while also reducing the rate of grade ≥3 adverse effects by approximately a third.

Speaking at an ESMO press conference for the study, Jeffrey S. Weber, MD, PhD, deputy director, Laura and Isaac Perlmutter Cancer Center, and professor of medicine, NYU Langone Medical Center, New York City, said: "Nivolumab clearly showed a very clinically and statistically significant improvement in relapse-free survival vs high-dose ipilimumab for patients with surgically resected stages IIIB, IIIC, and IV melanoma.

"The benefit for nivolumab was observed for virtually all of the prespecified subgroups, whether you look at stage, PD-L1 staining, BRAFmutational status, age, ulceration of the primary tumor, etc."

Dr Weber also highlighted the superior safety profile of nivolumab in comparison with ipilimumab, saying: "In my opinion, nivolumab provides a very acceptable benefit-risk ratio as adjuvant therapy for high-risk resected melanoma and I think has the potential to be an effective treatment option for patients with resected stage III and IV disease."

Commenting for ESMO, John Haanen, MD, PhD, Division of Medical Oncology, the Netherlands Cancer Institute, Amsterdam, said in a release that data presented at the ESMO 2016 Congress showed that although ipilimumab offered "a survival advantage over placebo, it was highly toxic."