To the end

Sometime in the next few days I am going to be allowed to leave my body, my prized but faltering airplane, behind and swing in a big arc to the loving beyond. I can feel the thick swinging cables on either side, with which I remain connected to you. I look forward to meeting you there again someday. Hopefully, just as I have had the privilege of doing for 50 years, you will continue to enjoy the many beautiful things this life has to offer with all your heart, soul and mind.

As this blog stops, the final date of my death will be announced on this web page.

All Dutch blog posts have been compiled into a Dutch booklet that, for those who want a copy, will be available during my farewell service. This booklet will also be available for download as a PDF later on the same web page mentioned above.

My parents gave me the beautiful names Ingeborg Pauline Margarethe van Dijk. They chose the name Ingeborg because they wanted to name me after my beloved Frisian grandmother Iebeltje. In a book about the meanings of the name Ingeborg they had found the beautiful description ‘fighter for the noble’.

My youngest brother, then just five years old, thought the name was too long for such a little baby. He successfully advocated calling me Inge first. So my birth announcement card had ‘Inge’ on the front and the full names on the inside. When I was seven years old I decided that from now on I wanted to use my full name, Ingeborg. Anyone in the family who accidentally called me Inge paid a penny. After a few weeks we got used to it and ate cake bought from all the pennies.

In the name Ingeborg I have always heard two sounds: on the one hand, the playful Inge, the creative, discovering girl, always full of fun plans and optimism. On the other hand, Borg, the part of me that dared and wanted to take responsibility for actually realizing plans in order to make the world a more beautiful place: the planful, down-to-earth and analytical side of me. At the age of seven I apparently felt I was ready to make that side known to the world as well.

Sometimes the two sides competed with each other in me and then I was usually unintentionally inaccessible to the outside world. If they work together with mutual respect, beautiful things can happen, as I learned by trial and error.

Before we got married I lived in a cozy student house. There was a gray telephone in the hallway; cell phones had not been invented yet. If someone called and it turned out to be for a roommate, it was customary to make a short note of the conversation and place it on the roommate’s desk, with a mention of your name underneath. Repeating myself has not become one of my strongest traits, so when I wrote my name for the umpteenth time under such a note, one day I decided to stop at the b: ‘Your mother called again, Ingeb’. From that day on, my housemates and then more and more intimates started calling me Ingebee.

At the start of this blog, I wanted a blog name with Ingebee in it, to remind myself not to lapse into just an analytical enumeration of medical facts and treatment steps, but rather also to openly show the personal side of my journey to those who wanted to follow me on my journey. In other words: a little b (of Borg) and a lot Inge. Dear Friend came up with the brilliant, sounding names ‘leefmeemetingebee.blog’ as well as the English variant ‘allthewaywithingebee.blog’.

The effect was so much greater than I could have imagined. Because how much and how warmly people sympathized with me and how good that did me! The two swinging cables connected to me show me their full strength, ready to bring me to a new phase in permanent connectedness with you. Just as will happen to you one day with the same cables in your swing ropes, cables which are also permanently connected with me, among others.

In my student days I met Wouter and instantly fell in love with him. For more than half of my life I have also been allowed to bear his beautiful surname: Griffin, the sturdy lion, with the sharp head and wide wings of the independent eagle and the sensitive ears of a horse.

I am Ingeborg Griffioen.
Beautiful people have loved and carried me from childhood.
I have lived, loved, enjoyed, carried, fought for the noble, made mistakes, made excuses, always been allowed to try again, and I have been allowed to learn abundantly and with great pleasure.

An important lesson turned out to be that I, like the other seven billion people on earth, am most beautiful when I am myself, as created by God, i.e. in love.

I was allowed to get to know myself and -how incredibly beautiful that was- you too! I discovered how wonderful it is to be allowed to see people without prejudice in all their beauty and value. To be allowed to feel all their beautiful intentions.

A rich life. I used my little airplane, my little school uniform to the last fiber. Connected forever in enduring and ever enriching love.

Preparing

In the distance, the runway begins to glow, though I don’t know how long I’ll be on my way. As a result of the necessary, heavy medication I’ve been taking for a surprisingly long time, my lower body from my waist down is now quite uncontrollable. That front creeps upward quietly but unceremoniously. Talking is also becoming more difficult and takes energy. When I want to move forward, my brain is particularly busy with coordination, balance and muscle strength. Silently in my office chair, the bucket seat in my car or music-making chair, the flexibly functioning part (my head, heart and arms) is given free rein and I can be myself again for a while.

It is only 3,5 years ago that my sweetheart died of a serious form of cancer. Right now I realize that I have gained a bizarre collection of knowledge and life experience that is quite useful. I know what it is like to be the caregiver of a serious cancer patient and what you need to have in place. I have seen with my own eyes what it can do to a patient. I can now see when something might be too risky and when I should call for help. I love to fly, but I also understand that I shouldn’t be the reckless accident pilot in my last few weeks. As of today, a dear brother-in-law is coming to live with me and I had already called in help for things like the double check of medication and nutritious meals.

It feels beautiful and valuable to help where I can to pass on as much as possible of the ideas behind my work and doctoral research, so that they may sink in a little better – even after my death. Or how I can give meaning in conversations with others. Although I notice that the number of people I can talk to is rapidly diminishing and it saddens me to have to disappoint so many people.

With my four hats of patient, caregiver, researcher and entrepreneur I try to hold on to the levers and inform those close to me as well as possible. Of course, everyone’s information is given in slightly different words, but the main message over the past few days has always been the same: “Cabin crew, prepare for landing”.

Beyond

Although my fingers are a bit stiffer and thicker, there appears to be no muscle loss. Despite the process of landing and when I have enough energy, I can continue typing and blogging for a while.

My ever curious brain continues to participate as usual and can not resist regularly asking the question: what actually happens to me after my death? I’m the type that likes to prepare a little bit for new adventures. In addition, some readers now regularly ask me – understandably – questions about it, which I appreciate. I admit that I hadn’t thought much about it until now for the sake of convenience, so I still have some knowledge to catch up on. Moreover, as a designer and scientist, I know that finding good, reliable information is a great art and effort in itself. A surprising advantage of poor sleep and limited mobility is that I am finally taking the time to read a lot, including on this subject.

To my great joy, on the day of the diagnosis (January 10), in addition to receiving the disastrous news, I had also received a calmness and peace, which have remained with me ever since. Both help me see things in a clearer perspective, without being able to rationally explain it. I can sense things better (which in itself is quite a discovery for a technician like me) and apparently also select information sources better based on that feeling or even awareness. It feels like God (love) is helping me through this realization to better navigate this phase. I understand that I still have a lot to learn.

It gives me these first discoveries:

• This earthly existence is an often difficult and very challenging, but also a wonderful opportunity to acquire important life lessons. Everyone has the free will to use them.
• Condemnation, punishment and damnation are typically earthly, human-described (not Divine) concepts and do not exist beyond.
• Our fears are often linked to our physical body and not to our soul, so apparently I don’t suffer from that anymore after death.
• After death everyone is lovingly received, first by loved ones and then by good teachers and fellow students (these are my words to keep it practical) to critically evaluate the life lived, to make plans again for further learning and new adventures in any form whatsoever.
• Fortunately, there also seem to be humor and beautiful music on the other side. I hope to come across descriptions of cats…
• The ultimate learning goal (I call it the ‘final exam’) is agape, or living from unconditional love and in connection with everything and everyone. For me that is God’s love, which others call Tao or something else. I’m looking forward to learning that and I understand that I still have a (exciting) way to go in this. In my opinion, this love is also beautifully described in the Bible, in which the two main constitutions are mentioned “which are equal to each other” and “on which depend all the laws and the prophets”.
• Fortunately, the strong realization that I immediately got that I remain connected with all those who are beloved by and dear to me, in short you, is also fully confirmed. That goes much further than a good memory.
• By the time you ever make the transition, I expect, after what I have now read, to be in your loving reception committee. Together with others I’ll do my best to show you around. I would almost seem like I’m looking forward to make the transition myself if I describe it like that, but that statement absolutely does not do justice to reality: the fact that I often find it so nice and beautiful here and with you. However, it does make it clear to me that death is not something we have to fear.

In the absence of a bucket list (after all, I always immediately planned and did what seemed meaningful and fun) I have still been able to add bonus days to my already very rich earth life. That my life is rich is of course thanks to you and in that thanks to (the/God’s) love. That just got even clearer to me!

2CV-walk

One of the standard works for secondary school students in my time was the Dutch book ‘Kees de Jongen’ written by Theo Thijssen¹. I have vivid memories of Kees strolling through the streets with his self-developed Swimming Pool Pass-walk, hoping that everyone would see what a special boy he really was. Although I do not share that last hope, I can talk about a self-developed walk. As a result of the Dexamethasone, my walking could most adequately be described as ‘walking through soft snow with cold, numb feet’. I have to watch where I put my feet and keep lifting them consciously. Because this is not always accompanied by a neat straight line and I sometimes seem to wobble a bit, a good friend, who like me is a Citrophil (a Citroën-car enthusiast), soon christened it the much nicer sounding ‘2CV-walk’.

I get by with it, because although the cancer is in my head, it currently seems to be the body part that cooperates best and comes up with creative solutions every day. As a result of the required Dexamethasone (not the cancer), the rest clearly require a different control than I was used to. Sometimes it takes some getting used to, for instance although I no longer feel my buttocks (I do feel my knees), thanks to the same brain I can still cycle just fine. Although my brain suddenly finds it very important to keep a good distance from other road users. Rightly so.

While I compliment my brain for its adaptability and ingenuity, it’s already having to come up with solutions for the next challenge the Dexamethasone presents. My fingers are now getting stiffer and sometimes cramp. I find that disturbing because I’m quite hands-on. The functionality of my hands is worth a lot to me, for the pleasure of making music, of course, and certainly also for being able to type. It remains to be seen how this will develop.

1) The book ‘Kees de Jongen’ appeared in 1923. I probably read it when I was thirteen, in 1984. In 2022, almost a century later, not only his Swimming Pool Pass-walk is vivid memory in my mind, but it has become a well known name in Dutch literature, and we even have had a Dutch Swimming Pool Pass Championship. In short, I admit: Kees was just right. Perhaps some readers of this blog will be standing on the sidelines in a few decades, encouraging the 2cv-walk champions…

Prioritize

After the fantastic six-week milestone passed, it suddenly felt a bit unplanned which flies a bit unfocused. I decided to offer myself a new perspective. I know, of course, that any plan for the future is completely unfounded, because no one knows how many days or weeks I still have ahead of me. Yet there is also added value and pleasure in the anticipation of fun plans, whether they go ahead or not. I decided to symbolically choose Ascension Day (May 26th) as the new deadline. Enthusiastically, I have planned all kinds of beautiful and useful plans and appointments in my agenda until that date. If something had to be booked, this time I opted for the cancellation insurance….. It also helps me to prioritize in my fascinating work: what might I still pick up and what should I immediately leave to someone else.

But suddenly at the end of last week my plane made a dive down and started flying lower. The largest tumor manifested itself by delivering a large number of pain stings last weekend. Suddenly my hips, knees and ankles can no longer move smoothly, walking is hard, the lack of sleep is really starting to bother me and my boundless energy seems to have halved. It scared me and I tried in vain to suppress the headache with paracetamol, but when that also offered too little relief, I increased the dose of Dexamethasone again by half a pill a day. Some time later the headache was under control again, although the energy remained annoyingly low. Reason enough for me to request a consultation with my GP, because I have no idea how I can fly more stable again: should I take more Dexamethasone or not?

The three conclusions of our conversation that took place today are simple: (1) Keep dexamethasone at this new level and only increase it in case of increasing headaches, provided I cannot suppress them with paracetamol. After all, all other discomforts are the direct result of this horse remedy, not of the cancer. (2) My lifestyle and especially the pace associated with it do not do justice to the fact that my body has to fight so hard against both the effects of the Dexamethasone and the cancer. I really have to plan fewer appointments per day immediately and give my body and head a rest more often. Hmmm, okay. (3) It’s good that I don’t fall into the role of an apathetic cancer patient, but that I manage to continue to behave like the old Ingebee. Apparently I accept the cancer, maintain control and deal with cancer in my daily life.

I take the first two conclusions to heart as important new rules of life, the third I happily put in my pocket as a compliment. One of the pockets of my brand new pants to be exact, because the Dexamethasone also made me a lot thicker and therefore I treated myself to some nice and again comfortable clothing. Now I can fly again!

Understanding

On a cold evening I had stayed a little longer at work. Under the window hung a bunch of youngsters. One of them suddenly saw me, probably to his shock. He decided to yell CANCER WHORE very loudly at me and ran away. I joked to my colleagues that I assumed it was slang for “Oh wow, there’s that nice lady who puts her heart and soul into a PhD program to help cancer patients and their loved ones”. I absolutely did not feel addressed, because I am 100% sure that I am not a whore. Plus, I completely assumed I didn’t have cancer. That was a year ago. Less than three weeks later it became clear that I had a tumor of 9 cm in my chest and multiple metastases in armpit and bones.

If there’s anything I’ve had to learn in the past year, it’s that I’m apparently a poor predictor of whether I have cancer and if so, what it’s doing to my body. On January 10th. there was also such a complete surprise when suddenly my whole head turned out to be full of cancer.

With gleeful glee in my eyes, I recently realized that this doesn’t necessarily mean that I am always overwhelmed by bad news. After all, the fact that I don’t understand anything can also offer unexpectedly favorable insights and outcomes. Like that the increasing package of physical discomfort I experience may not be the result of cancer or the inflammation around the eight major tumors and damaged membranes in my head. Perhaps those discomforts only come from the drug Dexamethasone and from the short nights that I always make. After all, for two months I have been sleeping on nights at most 4 to 6 hours.

I love experiments and so – completely against my own expectations of a terminal trajectory – I am now weaning off the Dexamethasone. This has to be done slowly and in very small steps, otherwise my body will rear up. I am now on a clearly lower daily intake than when I started two months, without the predicted functional impairment and without an increase in headache. My plane is flying well.

Maybe I started January 10 with too much Dexamethasone that my head doesn’t need yet. Or maybe the inner peace I have experienced since then has a positive effect on the inflammation sources around my tumors. In short: the fact that the reduction is successful says nothing about the amount of cancer in my head that can simply have increased in the meantime. When I finally understand in all modesty that I don’t understand cancer, I better be consistent. And enjoy all the days that are much better than I had dared to dream on January 10.

As of today, again half a pill less!

Health

On January 10, I heard that I still had a few weeks to maybe months to live, during which (mainly) physical failure symptoms could start to appear every day. The doctors hoped for me that I would respond well to the Dexamethasone and fortunately that appears to be the case. That could possibly offer me a few more weeks to two more months. It then occurred to me that I would be very grateful if I were given six weeks. I am now six and a half weeks further. Without noticing any failure symptoms! Six and a half weeks while maintaining quality of life, which is much more important to me than extra time. The pain I had can be taken away with medication, so that I can think, communicate, be meaningful and enjoy myself. In short: pretty much living the life I had being healthy. I don’t mind to accept the many side effects of the Dexamethasone for such a life.

It makes me think about that special concept of ‘health’. The World Health Organization (WHO) has stated since 1948 that “Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity”. That set the bar rather high. A research group, led by Machteld Huber, has proposed a new definition in a publication in BMJ (the leading scientific journal British Medical Journal) as “Health is the ability to adapt and self-manage the social, physical and emotional challenges of life.”. That makes me happy. I really like to keep that self management, which turns out to be completely possible. In that sense, I feel pretty healthy at the moment.

I got three new levers in my faltering plane: Dexamethasone, sleeping medication and Paracetamol. As I go along, I’m learning more and more how the fine-tuning of each lever works. The headache at the location of the tumors sometimes increases a bit and then there is also a bit of energy loss and nausea, which is all immediately under control with a small increase in the Dexamethasone. The result is that my plane will now and then fly a little lower, but that I can immediately stabilize the plane with those levers and then apparently fly straight for a long time again. This offers great opportunities for exciting, meaningful and pleasant days – without pain.

Tonight I’m going to have a delicious glass of wine to celebrate the beautiful six weeks that I have in the pocket and the tentative suspicion that there will be some more to follow. For those who want to participate remotely: tonight I make a toast to your and my health – of course in accordance with the beautiful formulation of Huber and her team!

Pinball machine

After seeing the MRI scans of my head, I wondered if my head would function as a kind of pinball machine in the near future. With unrelenting enthusiasm I launch a plan that then bounces off one of the eight large tumors or damaged membranes and then I just have to wait and see what becomes of that plan. Common effects of the so-called ‘Leptomeningeal metastasis’ that I have are loss of speech, double vision, loss of facial muscles, the ability to hear, swallow and it will be noticeable in muscle strength and control of arms and legs. The sequence and speed of these effects are unknown, but it can start any day, as I was clearly told a month ago.

My brain, relieved of inflammatory fluid and pain by the Dexamethasone, appears to have opted for a different approach completely autonomously. The brain cells behave like a well-attuned self-managing top team, whereby they apparently attach great importance to creeds such as ‘Substitutes for each other’ and ‘If we can’t go over left, then we just try to go over right’. I have gained great respect for the human brain.

It is sometimes a bit confusing, both for myself and those who meet me. Apart from my puffy face from the Dexamethasone (which would currently make me look good in the famous hamster commercials of one of our rural grocers), sometimes a slight headache and sometimes a bit of fatigue, I am mostly still fully Ingebee, with all my actions, ideas and intensity. That is not in line with the average picture you might have of a terminal in her last weeks. Last Sunday I really wanted to play some beautiful pieces of music with a good friend, including Telemann’s viola concerto. I had to study for a few days and even that turned out to be quite fun for my brain. An ascent in the midst of descent.

Of course I am especially grateful for it. My brain offers me the opportunity to do what I always love to do: being meaningful with others and trying to make the world a little more beautiful. With designs, making music together, valuable conversations, making project plans, recording a beautiful podcast or just the warmth in a shared silence. Apparently I get time to be able to carefully transfer my role in what I have been building up in my life together with others, which feels great!

In the short nights (also an effect of the Dexa) I enjoy reading books that I have come to call my ‘Landings manuals’ and from which I learn a lot. Wonderful books such as ‘The Book of Joy’ (about a five-day meeting between the friends Dalai Lama and Desmond Tutu) and books that attempt to give an insight into the adventurous and loving world that awaits me after my death and of which I now – very special – clearly already feel a thing or two! In short: I learn to live each day -be it by trial and error- and thereby I receive the great gift of peace, trust and connection with love beyond the boundaries of earthly life. And that great gift is beyond even my top team of brains…

Wind

Thanks to the Dexamethasone I currently go through the days almost without a headache, because it reduces the swelling around the tumors. This drug is not without side effects, which can turn out differently for everyone. Fortunately, the effects it has on me are very well tolerated: less sharp vision in the distance, sometimes a hunted feeling (only physically, not mentally), sleep worse and therefore tired, chubby cheeks and an uninhibited appetite. Overcoming Obstacles.

With a wonderful, clear head and open mind I see and experience intensely the special phase in which I have now ended up. I really had no idea what such a final phase would be like and whether I would feel a struggle or confusion or desolation. Fortunately, that turns out not to be the case at all. Instead, I feel an abiding calm and wealth that overwhelms me at times. I would have liked to have lived longer and I also see that sadness in the people around me, but it is a sadness that has connection and love as main ingredients. I realize that I know a lot of wonderful people. Not a word is wrong anymore. I would have loved to contact you all, my fingers and mouth are itching to respond personally, but it’s way too much. Thanks! Shy and intensely rich, I sit on my swing whose thick, braided ropes assure me of their enormous strength every day.

I’ve never mind if I lie awake at night, because that’s usually when I gain the best learning points and insights. Over the past 50 years I have taught myself to look at my own actions in the peace and warmth of my bed from different angles. I analyze my emotions, choices and mistakes with mildness, knowing that making mistakes is part of life’s training. The next day just wanting to do your best to add something beautiful to the world is enough. Even now I think at night what, within the limitations of a dying body, I might be able to contribute with my talents and knowledge the next day. That’s a nice feeling.

Through the process that I went through with my Love, I was already aware of the fact how much dying is part of life and that there is no guarantee of getting old. And also that I have a choice in how I deal with that knowledge. Without the feeling that I still need to do something in this life, I now let myself be carried away with confidence on the wind that sometimes lifts my faltering plane for a few days and or makes it fly a little bit lower again. I look around me, can enjoy the view and do what my heart tells me with the same passion as always.
Dear people, I am doing well and that is certainly also due to your warmth that I feel in all expressions, tonalities and silences.

Swing set

On Wednesday, the internist oncologist explained my dear brother and me that he had discussed the scans with various specialists in his hospital and beyond. Hoping for a counter voice. The conclusion was always the same: there is no medical treatment that can combat the violence of my cancer. On the scan images, my dear brother and I saw the cancer bulbs in my head. It is going wrong and that is probably not a matter of months, but weeks. At any moment the cancer can shut down functions, such as being able to walk, talk, use my hands. A difficult message, honestly, respectfully and warmly brought to us.

Immediately from the results of January 10, gratitude for my rich life, inner peace and love predominate, about which I wrote in my previous blog post. My feelings and thinking have remained in complete agreement about this ever since, with a surprisingly powerful clarity. More than ever in my life, I now realize how much that love has always been there in my life. Love that I may call God.

My body, my student uniform, about which I wrote before, is rapidly breaking down. I feel it and also know that I can let it go. My life, my work, my hobbies, my dear house with nice things, I can let go of everything, I now realize. Everything, except the one thing that really matters to me: my connection with all who are dear to me. If I have to miss that connection, I break and I am no more. However, as my body begins to tumble down like a faltering plane, I see a new image emerge. I realize I’m in that little plane sitting on a swing seat I’ve never seen before. A thick, rock-solid rocking rope to my left is composed of wires through which my love flows for all I hold dear. That cable, of God’s network, splits into countless wires, running to each of them, to you. Through the right-hand cable – just as thickly through wires coming from you and gathered together beside me – the warmth, the love flows back to me. I can already feel the enormous power of the flow through that right-hand cable, not only in the many beautiful cards, letters, text messages, flowers, gestures, encounters, memories and gifts, but just as strongly in the silence of those who do not know a reaction and monitor remotely. I can now hold on to those thick cables that will soon swing me up in a great arc, once I’m detached from my body. Cables that will continue to keep me connected in love even after my death with all who I love and love me.

I have fought hard with love in my life sometimes. My heart has been under pressure from a bulging motherly love that I thought I couldn’t get rid of because of my unwanted childlessness. To eventually find her way again through other routes and to make new, unimagined connections. Or love that I felt so strongly in my heart for loved ones, but completely unintentionally and with all my strength I restrained and held in a convulsive grip – pinching the cables already in my heart. And people at the other end have felt that. After all, I study the study of life and had and still have so much to learn. I feel like a diligent, eager to learn student and I now understand that I am allowed to make big mistakes by trial and error – as well as wonderful progress along the way. Just because I’m a student, just like the other 7 billion people around me. Nobody has yet graduated.

I experience each of my treatments of the past year as study subjects that, in retrospect, I have fully utilized to learn from them. The first AC courses of chemotherapy have taught me that I can still be myself if I can only function at a fraction of my always nice high pace. The second, specifically the Carboplatin, taught me bravely to crawl forward through dark, erratic mental tunnels and ask for help. The baldness and the preparation for the surgery taught me to look at my body differently and finally to fully accept it. A tough study module, but – again with help – we managed to complete it in time. Immediately after the operation, I looked at the result and embraced my adapted student uniform. Finally I see the beauty in every body I see. The radiations, for which I sang “My Shield and Trust” 154 times, was a useful lesson for me in surrender, trust and perseverance. Right through all the treatments, I learned through trial and error not only to remain a patient but also to remain myself, to commit myself to design for care, to make music, to meet, to enjoy.

In my life I have often struggled, especially after my Love’s death, with an ever-undermining sense of loneliness. That feeling is completely gone now. I now know myself permanently connected, even through death. As a richer person I will soon continue to swing, hanging on God’s cables of love, with which I also remain attached to you.
Thank God, and I mean that literally.

Descending

When my Love spoke about the day when he would be told that he could no longer heal, he was talking about the day when the descending (as of an airplane) would start. Image thinker that I am, I saw that before me. Unexpectedly that day broke for me Monday.

After waking up last week with headaches and other complaints that I saw as the effects of very intensive years, vomiting was also added on Monday morning. The radiotherapist decided to pick me up by ambulance. Just to rule out doomsday scenarios. A sweet neighbor came to my aid and went with me. That same day a CT and MRI were immediately made and they showed without a doubt that, despite all the heavy treatments, my head is now being taken over by a very aggressive cancer. Eight bulbs of cancer, spots of cancer in the meninges and also cancer in the cerebrospinal fluid. An overwhelming amount, which made it immediately clear that my body can no longer be saved with chemotherapy, operations or radiation. The intense results clearly also affected the people who brought it to us, they know me a bit by now. The doctor found it difficult to give a prognosis, but expects me to live a few more months.

The remedy Dexamethasone that I was given immediately does wonders: the headache and nausea are gone again. Besides the realization that various plans are no longer going ahead (and I always have plans) and the deep sadness that I also felt among the people I called, I was first struck by a fear of what was to come in the short term. The neurologist was able to reassure me: the cancer is not at the front of my brain, which determines my character and my thinking ability will last for a long time.

I felt and feel no anger. In addition to the sadness, a bizarre sense of resignation came over me and a great realization of what really matters to me. Resignation because I experience a deep sense of gratitude for my almost 51 years of life. Goodness, I have fully lived, fought for what I believed in and enjoyed it to the fullest. I have experienced enough for a lifetime and I know that. In doing so, I realized that I have always been able to love a lot of people incredibly and also felt loved by a lot of people. Once again – and I realize that even more now – that is the most important thing. I would have loved to have lived longer, but I cannot be angry, because I feel like a rich person and have already had a full and precious life.

Holiday

The company doctor sees my treatment process as a full-time job. That feels a bit crazy, but it turns out to be true: the many hospital visits and the hassle around it keeps me busy. Although I did not send a letter of application with CV, when the results of the scans became known, we immediately agreed: I was instantly accepted as a patient. The problem is that I don’t like this job at all. All the more reason, after three quarters of a year of non-stop hard work, to start talking about one of the fringe benefits: holidays!

I have fond memories of holidays. My love and I were a good holiday team. In the early years of our marriage, we still had to learn each other’s basic rules. It turned out to be very important for a pleasant time with love that he got food and drink on time and that there were enough licorice. Black, because those are the real ones. In order to keep up with me for a long time, the humidity should not be too high and we would do well to build in a moment of rest every now and then to read. Once we got the hang of these ground rules, it was a blast. Love arranged an old barrel with two or four wheels, screwed on his toolbox and bought a telephone card so that we could call the local roadside assistance when needed. I took care of the fun routes, lists of sights and places to stay. Once on the road, we usually decided to largely deviate from this and left the route for the beautiful discoveries we made along the way or the necessary visits to foreign garage companies.

Since his death, I had to reinvent the holiday. In addition, I discovered that the best leisure activity at the moment seems to me… to be able to work again! I suddenly realized how much I missed that: spending days delving into fascinating assignments and collaborating with others to my heart’s content.

The radiation oncologist was immediately open to my wish. He let me choose when I wanted to undergo the next radiation course. I opted for two weeks because I did not dare to postpone the chemotherapy for longer. It is a dangerous disease. He added that he knew from experience how wise it is to plan a two-week break. And also that the skin damage will increase for another week and then start to heal again. I am now halfway through my first ‘holiday week’. I soon found out that I really needed the enormous plasters that the hospital gave me. In the mornings I feel paralyzed by a severe headache and the rest of the day I am quickly tired.

Obviously, being a ‘cancer patient in the midst of treatments’ isn’t even a full-time job; you are a patient 24/7. Without holidays. And because it has to go on like this for quite a while longer, I decided to set aside some holiday money with which I just ordered nice holiday books and a present for my garden.

Morale

It’s accomplished and I was looking forward to it: the first series of radiation treatments. 22 x 7 times I was able to hold my breath, singing the same verse in my mind each time. The skin in my armpit is broken, a large patch of skin next to it is threatening dark red and I am tired.

A mask has now been created that fits tightly around my face, in preparation for the next short series of radiation treatments in the new year. These radiation treatments are given in very high doses on my vertebra and chaining my face and neck to the treatment table with the mask can prevent the radiation from accidentally hitting my spinal cord. After that, a course of chemotherapy will follow for at least six months. All in all, a fairly clear treatment plan, but with a life around it that now consists of chunks of uncertainty, held together with ‘subject to change’ adhesive tape.

For the first time in my life I do not look forward to New Years eve. I don’t really know what to do with my relentless flow of great ideas and plans for the future. The new year scares me sometimes and it’s harder for me to keep my morale high despite the pain and fatigue. My brother decided to change his plan and will guide me through those two days. A comforting thought.

These weeks, many sweet films are shown. Seeing the happy ending always makes me happy. I wish that happiness to everyone wholeheartedly. While zapping I recently ended up in the film Cinderella, made in 2005. I had missed the first hour, but luckily that is no problem with this story. In the last half hour, I was not only impressed by the special effects, but also by the moral that Cinderella brought to the viewers’ attention three times: “Have courage and be kind.” A resounding moral that wouldn’t look out of place on an adhesive or in brightly colored letters on a princess dress in the Disney store. As is so often the case with these kinds of sentences: only when they fall into a container of life experience can you measure the enormous size and the weight resounding in a heavy splash. It is indeed very valuable advice, but at the same time it also proves to be quite a challenge to stick to it.

To me it means the courage to face reality and to do the right thing diligently, even if it scares me. Having courage also means recognizing that sometimes I have to step outside the boundaries of my comfort zone. And not only realize that, but also dare to do it. In addition, the courage to continue to contribute to improving healthcare, as a designer, from the role of a patient’s wife and now also as a patient myself.

Kindness can be just as challenging, especially now that most of the lovely people around me (thankfully!) can’t feel what I’m going through. By the way, actress Lily James puts down a Cinderella in the film who is certainly not a wimp. Her inspiring interpretation of being friendly is trying to positively touch everyone she meets. She appears to be an enterprising type. In addition, she also chooses to be kind to herself.

I’m still a bit cautious with new plans, but I do have a good morale already. Or maybe it’s a good resolution: Have courage and be kind.

PS: Thanks for the cards with sweet wishes, very nice. Wishing everyone a good new year!

Treasures

On vacation or in my spare time I like to go geocaching. For those who do not know it: on the website you select a nice geocache -preferably a multicache-, take the description with you on a printout or in the special app, you enter the first GPS coordinates in your mobile, drive or walk there and the treasure hunt can begin. I have discovered many surprising places and wonderful stories through it. This free game has been played all over the world for years. It is also excellent for playing together with a fellow player in covid-19 time. I still remember how surprised I was when I was first introduced to geocaching. Especially because I realized that treasures were hidden all over the world, including in my neighbourhood, by fellow players with respect for nature, the neighborhood and history. For years I had walked, cycled and driven past hundreds of those treasures, not knowing they existed.

I got the same feeling when I started looking into lingerie for women with breast prostheses. I immediately thought of a tiny shop in a back alley where I would be taught about flesh-colored, boring corsets. That image was based on nothing and turned out to be meaningless. Ordinary, typical department stores and well-known lingerie chains that I have visited regularly in my life sell prosthetic bras in all kinds of sizes, colors and designs. In addition, many stores sell double-layer sports bras, with a special opening between the layers through which you can easily stuff a prosthesis. All just at the front of the shop on the rack: countless treasures, hidden from those who are not initiated into this matter.

Completely surprised I discovered that this also applies to prostheses. There are of course also flesh-colored silicone look-a-likes, which are still clearly different from the original. But for those who can think a bit ‘out-of-the-box’ and ‘into-the-bra’, there appears to be much more fun to be had. Curious, I became acquainted with a very nice company that makes alternative prostheses (ps: you can contact me for name and address). Actually, until the end of the radiation treatments I should use the temporary prosthesis that I got from the hospital, because the radiotherapy can still change my body. During my visit, however, I fell head over heels for a beautiful item with a gorgeous and chic fabric. It turned out to be a special for the holidays.

In the meantime I walk around with a treasure that remains hidden from everyone, only to be spotted by my happy, proud smile above it. I am already curious which fabric they will include in the assortment for Easter.

Pattern

Half of the first series of radiation treatments is completed! I have been going to the radiotherapy center every afternoon for the past 11 working days.

The first few days I was amazed and felt a bit lost in that special room full of technological highlights. Although the time in the afternoon and the team of healthcare providers varies every day, the actions invariably follow the same pattern. As soon as my name is called, I am invited to step into a small room containing a chair, clothes hooks, a mirror and another door. I get rid of some clothes, wrap my shawl around my shoulders and wait in front of the second door. As soon as it opens, a healthcare provider takes me past the control room, down a corridor to a spacious room where a second caregiver is already waiting for me next to the impressive radiation machine. The treatment table is adjusted to my body measurements. I climb on it. A foam block fits just below my knees and my head is in a foam holder. I stretch my arms above my head and place them in the holders positioned for me.

My date of birth is checked and a rod is fitted just above my ribcage. First the breath test is started: two short breaths in and out and then one deeper and longer breath to make sure that I can touch and feel the rod while holding my breath.

The irradiation is most effective at about 1.5 cm depth. That works out well on my sternum, but the radiation has to have effect on my skin at the site of the amputation. A mat the size of an A4 and little over 1 cm thick is therefore taken from the tray with my name sticker on it and placed on my skin. One of the healthcare providers reads aloud the position indications from my file and together they carefully determine where the mat should be placed based on those indications and the tattoo dots in my skin.

They withdraw, test from the control room whether I can hear them properly over the intercom and start the program. ‘Breathe in, breathe out …. breathe in, breathe out …. breathe in DEEPLY and hold on’ I hear over the intercom and I dutifully follow the voice of one of the two healthcare providers. I lie as still as possible and the arms of the device slowly rotate around me. The first round is to make a CT scan, because this device can do that too. This scan checks whether the calculated radiation plan can be carried out: Am I positioned well again and has my body remained unchanged since the previous session. “And breathe out again.” This is followed by the six radiation treatments where each time I am asked to hold my breath.

I don’t feel the radiation which makes it seem like we are all actors in a strange scene. A scene which we rehearse every working day. In the meantime, however, I see that two new patterns have emerged: circles are beginning to emerge under my eyes and a tanned surface on my skin. The latter exactly on the spot and the size of the mat.

Monkey

Since my love’s illness, in addition to undiminished enthusiasm, I also sometimes have to deal with gloomy thoughts. My own illness has unfortunately aggravated it. For the sake of convenience, I describe those thoughts in this blog as if they were the words of a monkey sitting on my shoulder. The monkey comments on everything that happens and only I can hear it. Fortunately, because it is not pleasant. I deliberately don’t say monkey’s words out loud.

That monkey has studied the statistics of ‘Triple Negative Breast Cancer – with some metastases’. When I want to buy something expensive monkey says: “Would you do that? Most patients like you die within three years of diagnosis, a large part already the first year and how much use is this thing if you are sick in bed. Isn’t that a shame?” If I put papers in a folder: “Shouldn’t you make an instruction with that, so that your next of kin know what to do with them?”. Or if I want to book a holiday because I want to get out of the malaise for a while: “Up to and including the summer months you will probably be nauseous and weak due to the next chemotherapy. The next summer vacation will probably be sick again due to new metastases. Can you also cancel this holiday home? And how should your fellow travelers do that, if you are already dead?”. For this monkey, the glass is always half empty.

Of course I tried to get rid of monkey. I’ve sent it away, slapped it away, ignored and reprimanded it, but it all turns out to be counterproductive. It only makes Monkey more annoying and angrily wagging his tail. I also entered the discussion with good arguments. Explained that maybe I belong to that small group that will survive. I couldn’t convince monkey. Because monkey is nothing but my own, logical fear and you can’t get rid of that so easily. I then tried to take monkey into account and made an effort to prepare everything for relatives as best as possible – in order to hopefully be able to switch back to fun things when I’m done with the preparations. But it was a lot of work and because of that my glass kept getting emptier….

Fortunately, I have found a good solution: I call it ‘listening and dosing’. When the monkey sets off again, I answer: “I hear you, but I’m not going to do anything with that for a while, because now I’m focusing on activities that give me energy. But check my calendar: there is a moment booked soon in which you can expand your point again. Then I decide what I’m going to do with your point.” I have found two lovely people willing to always make sure that there is always an appointment in my agenda with one of them within one or two weeks. A contact moment in which they listen to me and my monkey. They don’t have to come up with a solution, just listen, even to those negative words (and, if desired, I to theirs). So that monkey can speak and those words don’t stick around. That works. Sometimes that comfort is enough and I don’t even have to do anything with it after that.

Knowing that the next redeeming moment is already planned, monkey rolls up his tail, settles on a comfortable spot on my shoulder and falls asleep relieved and exhausted.

Prudish

Yes, I am prudish. In fitting rooms of clothing stores I always check whether the curtains are properly closed. Anyone who knows my clothing style a little, knows that after the loss of a charming décolletage, I hardly have to buy new clothes. My dear love has often joked about my prudishness, although his twinkling eyes always contained pride and relief about the exclusivity that comes with it.

Anyone who develops a condition that manifests itself somewhere between shoulders and knees, would do well to leave prudishness at home. I also have to take off my clothes almost every working day for radiotherapy. In front of a changing team of healthcare professionals. Of course, they no longer look surprised. They are clearly used to it and that makes it a little easier.

It is more difficult for me at ultrasounds, that have already taken place several times during this long treatment process. An assistant calls my name, asks me to change into the dressing room between the hall and the consultation room, invites me in and makes me lay down on the treatment couch. A shabby towel is draped over me and before the assistant leaves the room through another door, I’m told the radiologist will be there soon. Shivering I wait alone – what feels like quite a long time – with my eyes fixed on that other door that apparently can open any moment. Secretly longing for a combination of a burqa and a quilted ski suit. Only when the specialist comes in, greets me warmly and starts working professionally with the ultrasound device, do I relax a bit.

I admit that during that waiting time I once quickly jumped off the treatment couch and sprinted back to the dressing room. Just checking whether the door through which I entered and which opens onto the public areas is really locked…..

Different

The radiotherapy, the fourth treatment, started today. A different building on the hospital grounds, a different team, different actions, different words and customs to learn and probably different side effects. During the first three treatments (two series of chemotherapy and an operation) it quickly became clear how my body responded and it had to recover again and again. For the time being, I don’t feel anything from this radiotherapy myself, but it will probably quietly pile up in the coming weeks to a lot of fatigue and damage in my body.

There is no reason to delay, as occurred with the chemotherapy, or accelerate as with the surgery. That is why I already have a neat list on my desk with all the dates for the first series of radiation treatments up to and including December 29th. It is a very welcome thought that I can finally plan something in my agenda again. Ice, weather and decrease in energy serving of course. In fact, the physiotherapy department has already adjusted their team’s appointments with me so that I don’t have to go to the hospital grounds twice in one day and don’t have to wait long on site between appointments. Until just before the first radiation treatment, they helped me wonderfully with training, deep relaxation and stretching. Apart from their always beneficial listening ear. The result was impressive: I could clearly lie better stretched and relaxed on the radiotherapy treatment table.

Perhaps the biggest change is mental: there is no longer a desired result to look forward to immediately after radiotherapy. There was no cancer visible on the latest scans and we will most likely not be able to see anything on new scans. So we rely on research on other people and don’t really know what it’s going to do for me. Bomb attacks on peaceful-looking body parts, because there may still be some small insurgents secretly waiting in a trench somewhere. We never know….

By holding my breath during radiotherapy, a protective air buffer is created between the radiation and my heart. Today it turned out that I didn’t have to hold my breath as long as I thought and had trained. For that reason, I quickly decided to do one other thing in a different way: holding my breath, I decided to sing only the sixth verse of the anthem Wilhelmus in my mind. I may already exhale after those impressive closing verses of verse 6: “Dispel the tyranny that wounds my heart”. That seems more appropriate to me in this situation than to reaffirm my lifelong tribute to the King of Spain for the umpteenth time (see below for the translated verses). This time, moreover, in a somewhat disrespectful position. That man probably isn’t hoping for that either….

First and sixth verse of our national anthem ‘Wilhelmus’
Wilhelm of Nassuwe
am I, of German blood,
faithful to the fatherland
I remain until death.
A Prince of Orange
am I, free, undaunted,
the King of Hispania
I have always honored.

My shield and the trust
art thou, O God my Lord,
on You I want to build,
Never leave me again.
That I may remain pious,
your servant standing tall,
dispel the tyranny
that wounds my heart.

Calculated

The accurate calculations and simulations indicate that it is possible to irradiate my body without exceeding the allowable limit on the heart. The radiation oncologist showed me the images with colored lines that, like geographic contours on a map, indicate how much stress each part of my body will be under. My sternum is going to get a high dose of radiation, the rest a lower one. A piece of my lungs will unfortunately also break as well as a piece of my skin. With the first, one seems to be able to live well and the second fortunately recovers itself.

The therapy can be given in my local hospital, so luckily I don’t have to travel for five or six weeks to one of the three hospitals in our country where proton therapy is given. Also great news for my cats.

The hard treatment table has already been precisely adjusted to my body and I seem to be able to sustain it long enough to lie with my arms slightly above my head. That was a challenge because the skin of the armpit on the side of the amputated breast is still under considerable tension since the surgeon had stitched it together forcibly. Physiotherapy is therefore now focusing on creative stretching exercises. I have also been instructed to train at home to be able to hold my breath for a long time in this position, so that the air in my lungs forms an extra buffer between the radiation and my heart. In my mind I sing the two verses of the Wilhelmus (our nation anthem) at a respectful tempo that I have learned by heart since childhood. I am often allowed to exhale somewhere in the second (for those who had the same Christian childhood, you know that it concerns of course verse number six).

The first therapy (of five weeks) will start next Tuesday afternoon and I hope to be able to complete it just before New Year’s Eve. The second, extra high dose, radiation (for my vertebra) will be given in the new year and a new calculation will be made for this radiation.

All in all, an intensive process with daily hospital visits. I hope (and expect) that the medical imaging and radiation experts will not be snatched away to help in the ICUs for the treatment of people who have not wanted to be vaccinated (Covid-19), but do like to be treated when they get sick.

Heart

Pointing to the CT scans on his screen, the radiation oncologist explains what the main plan is to do as much damage as possible to the possible remaining metastases. The main plan, because the detailed plan will be based and calculated on the basis of the planning CT scan that will be made this week.

Most likely I will receive 22 low dose radiations on my armpit and chest wall (where the amputated chest was) combined with as many high dose radiations on the sternum. Then 3 more highly concentrated radiations – very precisely aimed at the affected vertebra. Each radiation treatment means a separate visit to the radiation center. I will have to go there almost every working day for almost six weeks; on weekends there is no radiation therapy and every now and then the device is given a day off for maintenance. If all goes well, I’ll be done with all the radiation just before New Year’s Eve. Results achieved in the past (in other patients) offer no guarantee for the future, but they do provide the substantiated expectation that the cancer will not appear ever again in those places.

The radiotherapy may damage the skin, although that skin will probably recover nicely within a few weeks. The radiated bones can be permanently weakened, but the scans clearly show that my bones are strong now, so apart from some stabbing pain, little lasting misery is expected. I have to count on considerable fatigue and that can last for a long time afterwards.

With a lot of knowledge and expertise, a radiation plan is developed that is mainly aimed at protecting my heart, which is close to the irradiated areas. My heart is pumping excellently and everyone wants to keep it that way. However, my heart does not feel completely healthy and pain free. The raw mourning for the loss of my man who was always on my side and I now need so much, the imposed small world in which I have been living for so long because of the treatments and Covid-19, the loss of energy and the lost faith in a future, they pressure my heart. Unfortunately, radiotherapy cannot radiate that problem and pain away. But the sympathetic, well-listening radiotherapist-oncologist and his cordial colleagues clearly want to do everything they can to pamper my heart in every way.

Facebook

It may sound a bit strange when, after blogging for half a year, I mention that I don’t really have much with social media. I don’t know what to do with Twitter and I’m one of those people who usually don’t find out that congratulations can be found in Messenger until three-quarters of a year after my birthday (sorry folks!). I only have my Facebook account to read how my family is doing in the USA, Canada and Australia.

Yet I now have a reason to visit Facebook often. There appears to be a private group on Facebook for women with Triple Negative Breast Cancer. In other words: fellow sufferers. There is another group, which is meaningfully called ‘Flat and beautiful’. And one for women with Triple Negative Breast Cancer with metastases, to which I am of course immediately admitted with my diagnosis. But with my ‘limited metastasis’ I would rather not be part of that group yet. First I want to go for a curative route. I can always switch if the cancer turns out to be spreading further, I decided. Apparently there are some stories I don’t want to hear too soon.

From ‘my’ group of Triple Negative Breast Cancer patients, I’ve already got several good tips. About what you can expect from the chemotherapy. What you can do about nausea. Or about how long it takes hair to grow back after chemo. Topics that nurses also address, but it turns out to be nice to read from a group of no fewer than 779 fellow sufferers about their broad range of various experiences, fears and achieved results or about handy tips. I am finally feeling wonderfully fit again, but visit Facebook anyway to read about experiences with radiotherapy, which I will probably undergo soon.

At the beginning of this year, I had never heard of Triple Negative Breast Cancer (TNBC). However, one in seven women will develop breast cancer. 15% appears to be TNBC, in short about 2% of the women in the Netherlands. Walking down the high street on any given Saturday, I probably pass dozens of women who now have or have ever had breast cancer, some who are “flat and beautiful,” and possibly someone with TNBC, too.

I resolved to look even more kindly at all the women I meet on the street. Also the men, because they might be very sweet carers.

Flexible

“Congratulations!” the surgeon concluded after summarizing the findings of the lab study:

• In the removed breast, the samples they examined contained less than 10% of the original massive amount of cancer cells.
• The cut edges turned out to be cancer free, which means enough was cut away by the surgeons.
• The excised axillary lymph nodes showed the same result.
• The cancer cells that were found were still of the same type, so fortunately no mutation of cancer cells had occurred.

It feels like I can continue on the winding path right along the ravine that may lead to healing, and that I’m actually a bit further from the rim by now. Brother who was with me reacts just like me with relief and joy. Let’s get ready for the next treatment!

Tonight these lab results will be discussed in the multidisciplinary medical team, but this will probably lead to the advice to start radiotherapy in a few weeks, then rest for a few weeks and then chemotherapy in the form of pills for six more months.

Since the day after the surgery I feel fit again. It is impressive to see how my body has apparently quickly and flexibly found new ways to drain the fluid now that two lymph nodes have been removed. Surprisingly, I have no pain. Very special because the surgeon had cut away a lot of skin and tissue just to be safe and had stitched the remaining skin together with force. Apparently my skin is also flexible enough to absorb that.

The true work of art that the surgeons have done, the good conversations I had with many including the social worker, the beautiful lingerie that I received as a gift from my dear friend and the beautiful prosthesis that I received from the hospital the day after the surgery, they help me tremendously. Missing my breast actually turns out not to be as hard as I expected. Maybe I am flexible enough for this process myself.

Surgery

A little earlier than announced I was picked up from the nursing room, bed and all. Dear friend was allowed to walk up to the doors of the OR complex. In the elevator, looking in the mirror, we both thought of a selfie that my love once had once taken through the same mirror, when he too was taken to the OR in a hospital bed. He was then given a nerve block to counteract the severe pain attacks caused by pancreatic cancer. In that photo I am standing next to his bed.

At the holding, the preparation room for the OR, an operating assistant introduced himself to me with the same first name as my love and therefore received a full smile from me. While waiting for the surgeon, I chatted with the team in the OR about innovations in healthcare and we forgot the time. As a result, he had to wait for us again until I was well positioned on the table.

Back in the nursing room, my new scar was inspected. I had already been able to imagine it for half a year and in my fantasy it had taken on anything but beautiful forms. Happy and very relieved about the result, possibly also a bit euphoric from the painkillers, I chatted a bit later to my visit. It was done, I had taken another hurdle. One more night to recuperate and possibly go home tomorrow.

My roommate needed to talk to me that night, and I was soon surprised to discover that she had recently been diagnosed with pancreatic cancer. She discovered that I knew more than average about it and was happy with the tips I could give her. Suddenly her pain increased and I had the nurses alerted, aware of what might happen. It was already too late: she started to spit up, forced to let everything go, and lay writhing and moaning in pain. Like just a few years ago, I sprang into action, trying to comfort, and counting the minutes until the pain relief finally started working. Powerlessness and raw memories pounded inside me – against my brand new scar.

In the hallway I waited for the nurses to help her and told them why I cried.

I’m a pirate-with-special-needs. One that has recently learned thanks to many lovely people that it can be important to indicate what you need. I had a wonderfully peaceful night in another hospital room, all to myself. Now home again.

Image

Once, my colleagues and I were commissioned to design ‘something fun for children’ for an event. “As long as it wasn’t a bouncy castle, because all the others did that.” We thought it was an opportunity to change the minds of the hundreds of children who would attend the event. We wanted to give them the idea that disabled children are actually super cool and tough.

We designed a real pirate island, with a treasure. On the day of the event, we dressed up as pirates and drew scars on our faces. We invited children to come and find the treasure. They would have to work together in small groups to build a bridge to the treasure chest full of tasty cookies. Soon the children were lining up.

We looked at them sternly one by one and said, “We don’t think you can handle this, because you’re not real pirates at all, everyone can see that. Real pirates have already had adventures. As a result, they have a handicap: a patch for an eye, or a wooden leg or a hook instead of a hand. We don’t think you’ve experienced anything yet.” Then they looked very taken aback. “Or do you also want a handicap?” Yes, they desperately wanted that. Some received a splint around the arm or leg from us, others special glasses that made their vision blurred or another ‘disability’. They proudly showed it to their parents. Then they were dressed up like pirates and were allowed to get to work. They discovered that it was quite challenging, but also fun to build a bridge together. Many immediately lined up after finding the treasure to be allowed one more time.

At one point a boy stood in line who turned out to be blind. The other children looked at him in admiration. “That’s a REAL pirate!” one whispered.

Tomorrow, when I lose my breast and gain a long scar, I’ll be a true adventurous pirate, too. But fortunately a peace-loving one, who is already perfectly happy with her own possessions.

Experts

The last few days I enjoyed that wonderful feeling of freedom. My condition and strength increased again and the silent hope blossomed in me that the cancer might be out of my body. My own immune system might be able to clean up new bad cells again. Perhaps new heavy treatments could be spared, based on the latest scientific insights. I started seeing people again, making appointments, making plans. One of those postponed plans was to collect the most beautiful photos of my sweetheart to make a collage for in my bedroom.

Peace to mourn
Time to build
Daring to trust
A future again

Hope had given me energy. But I had given the experts I had consulted in the other hospitals last Friday and yesterday the thankless task of having to put my feet back on the ground. They’re probably trained in it, but it’s not fun for them. Despite the fact that I am walking on clouds because of my neuropathy-affected feet, the blow was hard. Complete unilateral amputation is required, as is radiation to sternum, one of the vertebra, armpit and chest. And even then, there will still be a high chance that the cancer will come back afterwards. The results of the scans are certainly wonderful, because that gives a chance to survive. But there is absolutely no reason to think that all the cancer is now out of my body. They urged me to have the surgery as soon as possible. It is important to take a moment to be well informed, but if that comes at the expense of extra time for such an aggressive cancer to grow, it is also very dangerous.

We listened to each other sadly. The experts understood why I had felt such a need for rest after all the intensive years. I asked for supporting facts and got them. My dear friend was there, helped me ask questions and held me tight afterwards. Even before I got home, I had already contacted my own hospital again.

Early this morning I received a message: I will probably have my surgery next Monday 25th.

From 1991 to 2017, this October 19th had always started so differently: with breakfast in bed and presents for my birthday sweetheart.

Opinions

Prior to the fine result of September 28, the surgeon had already said that if it turns out to be a ‘radiologically complete response’, this is the best news. But also that the decision about the follow-up procedure will then be difficult. And that is what it turns out to be. Not difficult because we disagree, on the contrary. We are all in agreement that we will do everything we can to cure me of cancer and make me grow old happily. The problem is, neither of us can say for sure how to achieve that. It is now no longer clear whether I still have cancer cells in my body, where they are and how they intend to behave. The only thing that studies show is that the chance that the cancer will break out again somewhere, in patients like me, is quite high. It will therefore be a decision with potentially major consequences for life and death.

Fortunately, the surgeon had also said that there is no rush with this decision. We can take a month and a half. In addition, during that time I can regain my strength, which means that I can better tolerate the next treatment we choose. We use the meantime to solicit the opinions of other experts. With that knowledge, the surgeon and I can then make a decision together. Together, because he guarantees that it will ultimately be a choice that is medically justified and I that that choice suits who I am and how I want to live. I am convinced that we can do this well together.

He had already taken action immediately and had discussed the results with other specialists in my hospital. Their collective opinion was, as I described in the blog, that amputation, then radiation and then see further, seems the safest way. This is also in line with the national guidelines.

I have been involved in innovation all my working life and therefore I would like to bring in experts who are also looking outside the guidelines. But in a scientific way. That is why I have sought out top researchers with the help of my network and want to share my medical file with them. In the Netherlands we already have a flexible procedure for a Second Opinion, but not (yet) for an Innovative Research Opinion, for patients like me who like to think outside the box. I have since learned that the concept of ‘Innovative Research Opinion’ does not even exist yet, so I use the Second Opinion procedure to be invited with my file to the research institute/hospital of my choice. I hope to get in touch with the right researchers/specialists there to ask them my questions about the latest insights from the current studies. Monday, the 18th of October, I’m welcome!

Co-operation

Not so often a patient also expresses the wish to think along about innovation for healthcare. My passion, innovating for healthcare, has always been central to my education, work and PhD research. It is therefore natural for me to offer that passion (and the knowledge gained) without obligation to the care-providers I have been dealing with for months now due by illness. Some care providers are positive about this, for others it mainly leads to confusion.

The last group indicates that they find it important that I am primarily a patient and not their designer. They are not open to it, because they fear it will distract from my treatment. Absolutely well-intentioned. Unfortunately it works. Every time I’m told this, I feel a little more patient and less Ingebee. As a patient I don’t like going to the hospital and I’m happy when I’m outside again. As Ingebee, however, I am fascinated when I look around in a hospital and I am feeling all kinds of ideas coming up. Not only some caregivers, but now also I sometimes get confused. In particular, very time my (free) offer to co-operate is rejected, while for decades several hospitals have found it very attractive when I think along and help them innovate.

It makes me think about that special relationship between patient and care provider. I know and experience that almost all healthcare providers are eager to help patients with great dedication. For some it may feel a bit like a chef in a three-star restaurant: they work incredibly hard to deliver top quality and thus pamper their guests and provide service as much as possible. Then I, their guest, walk into the kitchen with my sleeves rolled up and have ideas for innovations. Many chefs might also be surprised by that.

However, there are major differences with a three-star restaurant. As a patient, the illness can leave you feeling powerless and sidelined. Add to this the fact that as a patient you have to accept that you are repeatedly discussed about (not with) in a multidisciplinary team. And in these meetings they estimate what you can handle as a patient. If you are also stuck with each other not just for one evening, but for months, then I think it can become really important to start a conversation about how you could best work together. This requires a wide spectrum of customization, which is quite complicated within the guidelines and protocols for which we all held healthcare professionals accountable.

Some caregivers are really open to it and find it fascinating to learn something from me as well, instead of just me learning a lot from them. Or talk to me about our collaboration. I give them bonus points. We are going to have a great time together!

Response

Yesterday a multidisciplinary team examined my case. The radiologist explained to colleagues what he (or she) saw on the CT and MRI images and together they formed an advice. This morning Dear Friend and I walked to the hospital to be informed by the surgeon. I really didn’t know what to expect. Although I felt reasonably fit, that had been the case as well just before the devastating diagnosis at the beginning of this year. In addition, lately I felt a new lump in my armpit, at the location of the lymph nodes. That worried me…..

“The MRI gives a radiologically complete response!” said the surgeon. This means that the radiologist actually can no longer spot cancer in my breast on the images! An incredible result. That does not mean that there can be no cancer cells in that breast at all. The latter can only be assured after tissue removal and laboratory test. At the moment, however, it is no longer clear where in the breast tissue should be removed. After all, at the start of this entire process, the entire breast was already overgrown with cancer – in addition to the large tumor of more than 9 cm. If a piece is removed somewhere and then examined in the laboratory, cancer cells may still be present in the tissue that has not been removed. These can be tumors too small to be detected by MRI. The safest route therefore remains a complete amputation of the breast and then to irradiate the remaining area.

No new abnormalities were found on the CT scan in the area from neck to lungs! So the new lump is something harmless. The previously found spots in the sternum, armpit and vertebra have not gotten any bigger! A CT always produces noise, so it’s unclear whether those spots have become smaller. The advice is to also irradiate the sternum and vertebra.

The earlier spots in the lungs are gone, which unfortunately means that it may have been cancer after all (which is not 100% certain), but fortunately also means that these have responded well to the chemo. Now that they can no longer be found, they cannot be irradiated either. That is why they will be monitored with scans in the future, because the chance of their return remains high.

In summary: it remains a dangerous situation and a long and difficult process in the coming months, but the chance that I may survive this has clearly increased!

Tears of relief rolled over my cheeks once I had left the consulting room. In my mind I dared to make bookings again in my calendar past the end of this year. An incredibly nice and wonderful gift, because I love life in the midst of you. And therefore I like to continue wearing my aforementioned ‘student uniform’, my body.

Faith

Sometimes blog readers ask me if my faith supports me. It sure does. To explain this, I again use a self-invented metaphor.

It reminds me of my student days. My parents supported me when I wanted to go to university, to enable me to develop further. In addition, they hoped that this would give me a better chance of being able to practice the profession that I so wanted and thought would suit me best. They found it a bit terrifying that I had to move into a dorm in another city, because they knew (probably better than I did at the time) what dangers could come my way. But they trusted me and my inner strength and wanted me to indulge it. In addition, which was very important to me, they told me that I would always be welcome at home. I realized that this also applied if I didn’t make it or if something terrible would happen.

I have the same idea about God. I am allowed by God to live in my dorm on this earth. God might have wanted to put me under a bell jar to protect me from all dangers, but knows it’s even more important that I get the space and freedom to develop. God also hopes that I will discover how beautiful it is to have a wonderful, meaningful time together with the other students, the other inhabitants of this globe, and to help each other.

That’s why I’m never angry with God for getting cancer. Nor do I ever wonder what its purpose is. (Because I am occasionally asked about both.) During my student days I never called my parents angrily asking why they had not prevented me from failing my exam. Or asked them what goal they had in mind when I fell into the canal with bicycle and all due to a traffic accident. These dangers are not generated by them. They could have prevented all that by keeping me at home, but I needed the freedom, I was granted it and the risks come with the freedom.

My parents think it’s terrible that I’m having cancer now, and I think God does too. But if one day it goes wrong and my body literally breaks down, due to cancer or old age, I leave this ‘student uniform’ behind on earth and I am -just like everyone else- welcome home to God. To start the next adventure from there, wherever and in whatever yet unimaginable form.

Until then, I may enjoy with you this special period in our existence, which we call ‘life’. A period in which we are given space and new opportunities every day. Opportunities to learn and to try -with trial and error and in the midst of all the risks- to make the world a bit better together.

Milestone

Today I received the last chemotherapy of the second series! Weak and sleepy from the Tavegyl (the drug to prevent allergic reactions to the chemo) and the chemo itself, but above all very relieved, I walked home slowly enjoying the warm sun. Finally, the period has arrived in which my body has a few weeks to recover. First a few pajama days, but starting next week my world will get bigger again.

The CT scan and MRI are also planned for that week. The following week, week 39, it will be announced what these 16 courses of chemotherapy have yielded and I will hear the advice of the medical team for the following courses. Probably surgery, then radiation and then chemotherapy again, but this time in the form of pills that I can take at home.

The nursing ward gave me a sweet present to celebrate at home the completion of the chemotherapy. After she removed the IV from my hand, the nurse in charge said with a warm look: “I hope I won’t see you here again.”

Metaphor

To explain something about my experiences, I like to use metaphors. I also see others using metaphors when they want to tell something about cancer and cancer treatments. One commonly used is warfare. That leads to expressions like “Fight against cancer!” or “I have already won this first battle”. Many are rightly disturbed by this, because it is a dangerous metaphor. It suggests that with the right plan of attack and the best army, you can conquer cancer. I recognize that problem. I had to bury my love three years ago and together with him and a whole team of adequate caregivers and many others, I really had done everything I could to avoid that. In documentation on cancer and cancer treatments, therefore, expressions referring to battle are rightly avoided.

Yet, it is also a pity that we may sometimes throw the baby out with the bathwater – just to use another goosebump-giving metaphor. We know the fear, the powerlessness and the destructive effect from (stories about) wars. Therefore, in some cases such a metaphor may help to express some strong emotions.

Perhaps the problem is not in the metaphor, but in the division of roles within that metaphor. As I mentioned in my blog post of April 14, as a patient I do not feel like one of the armed forces. In my experience, the national army in the metaphor is the representative of the collection of healthy cells I have, supported by my immune system. The insurgents are the cancer cells. The chemo is the army of mercenaries from other countries. I myself feel like the civilian population who, in the midst of all that violence, sometimes anxiously wonders what the future will bring. Will the scary insurgents win? With sorrow I see how the mercenaries also create devastation. And sometimes I also just wonder very practical things, such as whether it will be possible to get some more work done tomorrow. Or how to avoid getting in the way of the good soldiers by accident. And whether I could support them with healthy food. So no glorious gladiator role, but just trying to live every day – despite the violence in me.

I also noticed how incredibly resilient that national army of healthy cells turns out to be. When I was diagnosed, I was a bit upset that they just turned out to have lost quite a bit of ground, but those cells now deserve real respect with their ever-rebounding blood values. Therefore, I’ve prepared a nice meal for them again tonight.

Being right

For the second time I react stunned to the result of a blood test, this time the result I got this morning. The weekend had been quite tough. Only yesterday did I feel fit again. The three-week course with Carboplatin, the heavy treatment, had already been postponed several times by a week and I was convinced that it would be the case again this time. That actually appealed to me.

Walking to the hospital I had already thought of the following song (which only rhymes in Dutch):
Let this cure
but take longer.
No need to panic.
Cells will restore.
Count my Blessings:
A week less sick!

However, it turned out that I was wrong and was therefore a bit upset. If my blood cells had been able to talk to me, they might have reacted with dismay at so much ingratitude: “Have we figured out how to work harder on our recovery, and what do we get: a sad face!” Well, they would have been right….

Sometimes I want things that are not so good for my body. Such as wine gums, ice cream, chocolate with lots of salt and caramel and walking in the sun without first looking for that bottle of sunscreen. Or a nice week off in the middle of necessary medical treatments. But this result contained clear language: my body is ready for the next treatment.

Of course I could also have discussed postponement. And I don’t mean with the cells, but with the internist-oncologist, who is always willing to think along with me. But I decided to pull myself together and immediately walked meekly from his consulting room to the nursing ward for the next course of Paclitaxel plus Carboplatin.

While I already feel the first liquid trickling in, I get a text from a dear friend. He immediately responded to my message that the treatment was still going ahead. His enthusiastic conclusion was that this means that I can complete the last series of cures according to plan. And that this also means that we can now plan a nice weekend with our old-timer camper vans. His app invited all the great anticipation that comes with this plan.
I smile and realize: He’s right!

NB: Every now and then I get some questions about the neuropathy I feared so much. Yesterday I was able to play the viola to my heart’s content!! During the treatment that I received from the pain specialist, based on the latest insights, I already felt the tingling in my hands ebbing away and they have not returned. I still feel something in my feet, but those cloudy feelings are not unpleasant.

Deeper

Sitting on the edge of my bed at the beginning of the Sunday afternoon, I first picture the steps I so badly want to take: leave the room, go up the stairs and there, in the attic, remove a few things from under the dormer window. How hard can it be. Other plans I had for this weekend have already been cancelled. A construction team will start on Monday with the repair of the dormer window, a job that had been on the schedule since October last year and had been postponed due to busyness at the builders company. Halfway up the stairs I give up again. The third attempt that day. Too little energy. A few mini-bleeders on my skin suggest that the blood values ​​have dropped considerably again.

Safely back in bed I send a message in the text group ‘Helpers Ingebee’. Not much later I am spontaneously provided with tea in bed, the rooms are prepared for the builders, there is a schedule ready of kind neighbors and friends-in-the-neighborhood who will take turns staying in my house for the next few days to help the builders and healthy evening meals are arranged. All those dear carers together make the situation a lot more pleasant. Fortunately, after a long night I feel a bit better. Tomorrow I hope to be able to go outside again.

Last Friday, with a somewhat foggy head, I went for a lovely 10 kilometer walk with a dear friend. A few days before, the measurement by the onco-physiotherapist showed that my physical condition is fortunately not deteriorating despite the chemotherapy. All is hopeful! Apparently we manage surprisingly well to get me back to a good level physically every time. Nevertheless, the chemotherapy seriously affects my blood production and every round the valley from which the values have to climb seems a bit deeper.

It reminds me of a computer game: every next level gets more challenging, but I do progress (with all that help). One more level to go: heavy cure plus two more light ones after that. In the meantime, I’m trying to prepare a bit for the challenge that will most likely come after it: the surgery for the unilateral amputation. Physically less challenging, mentally all the more….

On clouds

The dark days of the double chemo are over and the subsequent first single cure (number 8 in the series of 12) is now active in my body. Sometime at the end of September, the last course of chemotherapy will be administered, after which an MRI and CT will determine what this long series has brought. At the end of next week, at my request, an exploratory consultation will take place with one of the surgeons. Although we still have no idea which interventions can be useful from a medical point of view, I would like to review some if-then scenarios. I suspect that the impact of some scenarios can be large and it helps me to take time to prepare myself.

Meanwhile, I’m walking on clouds. One of the known side effects of this chemo process is neuropathy: toes, soles and fingers can tingle, become numb or painful and the scalp can suffer from cold. In some patients the effect has been shown to be temporary, in others permanent. The soles of my feet were the first to act, they started to tingle cheerfully, and I am now also starting to notice it in my fingertips. Not a problem in itself, as long as it stays at this level. The prospect of mobility problems due to the lack of feedback from the soles of the feet and especially not being able to type properly or play the viola worries me a lot. There is no acknowledged cure for it except delaying chemotherapy or lowering the dose. However, both trump cards had already been used for me because of the low blood values. I am therefore happy with the support of the pain specialist in my network who is exploring a new approach with me.

It is becoming clear that in this special year, with the help of a growing team of all kinds of inspired experts, I am learning more and more about the miraculous and ingenious workings of the gifted body and our mind – and about the cooperation between the two. The reason may not be pretty, but it is fascinating and meaningful.

Although the content of my days is currently strongly influenced by treatments that may or may not take place, I start the day in a fixed way, namely with a warm greeting to the last two lashes on my right eyelid. These black hairs, which I have come to call Harry and Harriet, have been ignoring the chemo for months and are stubbornly staying in their place. They seem to want to confirm the sweet messages on all the cards, presents and apps I still get (thanks!!!): i.e. ‘hang in there, we’re in this with you’.

Continue

Yesterday I went to the hospital with my brother in my improvised sports outfit (flexible holiday trousers with a nice cycling jersey). First having blood drawn again, then bridging an hour while the lab determined my values, after that the consultation with my internist-oncologist. The white blood cells appeared to have multiplied enthusiastically, as did the platelets! Without a doubt, the treatment could therefore continue again.

Although the unplanned extra week had done me very well mentally and I secretly hoped for another week of postponement, I also understand the great importance of the progress of cures. Moreover, it is nice that my brother can stay and still assist me next week, if it turns out to be another tough week after this cure with Carboplatin. After the consultation, I quickly went to the Rehabilitation Department for 45 minutes of an invigorating onco-physiotherapy, to report afterward – still panting in sports outfit – for the next chemotherapy treatment.

As I type this, I hear an outside crowd cheering at the nearby football stadium at the start of the second half of the game. The second half of my chemo therapy has really started for me too and I hope it will yield a top score!

Dangerous

The platelet and white blood cell counts were again below the recommended lower limit this morning. The number of white blood cells turned out to be so low, that starting a new course of chemotherapy (which will lower the number even further) is absolutely too dangerous. Despite the extra injection. Another week delay, because I’m too prone to infections. Postponing cures is also not ideal, so it will be a bit exciting at the end of next week.

Just like the doctors, I chose to simply ignore the third blood value, the low Hb value (5.6): After training with the onco-physiotherapist, I started the unexpected week off with my brother with a long walk of a few hours with some small climbs in a national park. How beautiful the Netherlands is this time of year!

Halfway

The alarm goes off at six in the morning. Together with my brother I will walk the regular route to the hospital to have my blood drawn. An hour later, the lab results will be known and we will hear from the internist-oncologist whether the chemo treatment (including Carboplatin) can start immediately afterwards. This time not on the usual Friday, because my love passed away on August 6. I would rather not lie ill from the effects of cancer in the same hospital room that memorable day.

Fortunately, the countdown to the second half of this second chemo therapy now begins. Only two tough weeks and four mild ones to go. Maybe an extra week here and there due to delay. That is manageable and my thoughts and questions are already fully focused on the trajectory afterwards.

A colorful collection of summer hats hangs from my hood. Outside, they elegantly protect and mask my bald head. Despite my multicolored glasses, it is now noticeable that I have lost my eyelashes. Almost also my eyebrows, which a few weeks ago were still so heavy and dark. An unknown person looks at me from the mirror, someone I still have to get to know. I will probably run into this person every now and then until November. I am already curious who I will meet in the mirror next. After all that has already happened and will certainly have happened by then, that person will again be a different looking person. I’m going for ‘wiser’.

Cause

Cancer is attacking my body and my life. A recurring and obvious question is how did I get sick. In other words: why one day my immune system no longer neatly cleaned up the foreign cancer cells. Research has shown that in my case there is no hereditary cause. Also, I am not aware of previous exposure to scary substances or a particularly bad lifestyle. The most common answer is ‘that’s bad luck’. Absolutely true, although every cancer patient will experience it that way: even those who are hereditary or who have drunk too much alcohol.

There is a more nuanced statement on the Dutch website kanker.nl: the cause is often still unknown and several risk factors are likely to play a role. Worldwide, many scientists are studying this issue and even more patients are willing to cooperate in their studies. Still, it will take years before all the pieces of the complex puzzle are put together. That is of no use to me for the time being, so I – completely unscientific and without any microbiological knowledge – randomly think of possible connections.

After a happy childhood, nice student days, nice work, warm contacts, loving years of marriage and many more wonderful things, things changed. In the past ten years, in addition to even more beautiful things, also events have taken place that I found quite intense and exhausting. Not in the least of course the illness of my tall, dear beloved husband and the way in which he died. I know that while these events are not the cause of my cancer, I have a looming suspicion that they were also not supportive of my immune system. Or to put it more precisely: The way I reacted to these events or what I felt about them may have weakened my immune system a bit.

It is good that a large medical team is now working on targeted poison attacks on my cancer cells. I am grateful to them. However, I also see a task for myself to encourage my immune system again. A well-known way is healthy food: high in fibres, proteins, etc. In addition, at my request, the case manager arranged an intake for me a few weeks ago at the rehabilitation department of the hospital. An onco-physiotherapist, occupational therapist, social worker and a clinical psychologist have taken all the time to familiarise themselves with my situation. A new world opened up for me. We have jointly decided that I will work with the onco-physiotherapists and social worker.

That is quite intensive and sometimes confronting, especially in addition to chemotherapy and side effects. But the help of these people with their broad vision already does me good. Until then, all attention had logically been mainly focused on the cancer cells. A necessarily reactive approach, because we are running behind: those cancer cells already had a frighteningly large lead. On the other hand, together with the team of the rehabilitation department, I focus on a proactive approach to strengthen myself physically and mentally for what is to come. It is also less about cancer cells and more about me and my life. That feels good.

I’ve always shunned sports as much as possible, but over the past two weeks the warm and skilled onco-physiotherapists actually managed to get me to their gym with pleasure for the first time in my life, even twice a week!

Green light

Sufficient white blood cells have been found in my body. This means good news: my body appears to be able to recover! Physically I can take a beating again. The next serious chemical blow (with up to 80% reduced Carboplatin content) is therefore immediately planned for tomorrow morning 10:00.
And on again…..

Long haul

The new blood results are in. Bizarrely, it reminds me of a hamster race. The hamster called ‘Red Blood Cells’ (a.k.a ‘Hb’), has fallen asleep on the race track and is still drowsy on spot 5.5. That seems to get in the way of a well-filled day program and my cheerful mood, but this hamster does not count towards the release of the next chemo.

The hamster ‘Platelets’ however does count; this hamster has started to sprint and has now neatly reached the safe zone. Which is a comforting thought if I accidentally cut my finger*). The equally crucial hamster ‘White Blood Cells’ is finally starting to move in the right direction, but is definitely not on safe ground yet. Unfortunately. The next chemo must therefore be postponed for another week. In addition, thanks to this hamster, I do well to avoid groups of people and sniffing individuals for the time being. It could be worse: for some patients, their hamsters walk in the wrong direction for much longer.

It means blood tests again at the end of next week and if the chemo can proceed, the decision will most likely also be made to permanently lower the dose of Carboplatin. The problem is clear: my blood/bone marrow doesn’t recover easily from the blow of the Carboplatin I was given a month (!) ago. There will also be another consultation with an internist-oncologist next week. That’s good, because I now have some concerns and questions about this process.

*) Which ones are doing what again?
The red blood cells carry oxygen to the organs and tissues. Important for your energy.
The white blood cells defend our body against infections.
Platelets play a role in blood clotting.

Hit the brakes

The day before each course of treatment with Carboplatin, I have to have my blood drawn and I have a consult with the internist-oncologist or the case manager. We discuss whether the side effects are still acceptable for me. Second item on the agenda: whether the blood values ​​appear to be good enough, or in other words whether the healthcare professionals think the next chemo treatment tomorrow is safe and justified. I realized today would be a short conversation of only a few minutes: the side effects are now quite manageable and I feel fit. Prior to the consult, I handled two more work related video calls, left a little too late for the hospital and chose to walk anyway, even though that had to be done at a sporty high pace and in the rain. With a positive mood and slightly wet, I entered the case manager’s consultation room.

On her screen she showed my blood values: an Hb of 5.5 and also too low a level of white blood cells and too few platelets. In short: irresponsible to start the chemo tomorrow. I looked at her in astonishment. The first thought that crossed my mind was that these must be someone else’s blood values. But I had been present when the stickers with my name and date of birth were put on tubes. Tubes I had just seen fill with my blood. There was really only one possible conclusion: how I feel, simply does not match my blood values.
And I’m not pleased with that.

To be honest, I wasn’t looking forward to tomorrow; the next chemo treatment with that lousy Carboplatin. But it seems to be badly needed to treat the cancer and now that it didn’t proceed, I felt disappointed. To raise a low level of white blood cells, the injection that I already received the day after the first chemotherapy can be used. But that is only possible one day after a treatment with Paclitaxel alone, so at the earliest in 9 days from now. And I most likely owed those severe headaches to that injection during that first course of treatment. To raise the amount of platelets, nothing can be done, the body has to restore the production itself. ‘Try to sleep well’, there is no other advice.

The heavy chemo with Carboplatin has been postponed (at least) for a week. A new measurement will follow next Thursday and if the values ​​still do allow a green light, it may be decided to lower the dose of Carboplatin. The internist-oncologist had previously explained that it can sometimes be quite troublesome to find a compromise. Which was already the case – and there are three more treatments with Carboplatin ahead of me…

When I walked out of the consulting room, I realized that I simply can’t do anything about this. That thought offers me plenty of room to make the best of the new situation. Apparently I get a nice bonus week: making music, having a good time, maybe visiting some museums… Thinking about the tips and gifts from dear blog readers that I received for expanding my HITD list, I’m actually looking forward to it!

Pause

After having received twice (on Fridays) a single course of chemotherapy (without Carboplatin), I can now conclude the effect is considerably less severe. In these two weeks of ceasefire, I can recover a bit. After the eye infection in the right eye, followed immediately with one on the left, both seem to have recovered. Fortunately, the blue-grey, swollen big toes fit nicely in sneakers that I once bought a little too big, allowing me to walk again. My world is once again bigger than my house. The headache remains at an acceptable level, provided I take it easy. I can devote some time to my beloved work and viola again.
Until next Friday, the day of the next treatment with Carboplatin, I experience time to breathe and for reflection.

Ps: my dear friend who made the beautiful translations so far, is unable to continue, due to personal circumstances. Hopefully my English spoken readers can still understand my messages, which I will try to translate myself.

Bright spots in the dark

After three hard weeks in which my courage and life energy were under strong pressure, I realised I had better prepare myself for the next 11 weeks of chemotherapy. 

So today I came up with an HITD list, which stands for ‘Highlights In The Darkness’. For every week something to look forward to.

The chemotherapy which I started last week, means for the duration of 12 weeks, every Friday to the hospital to be administered with Paclitacel, plus once in three weeks Carboplatin. In the first week I received both medications, and I now know that during such weeks of a ‘double dose’ I prefer silence and my bed most days. I organised my HITD list accordingly.  In the ‘double dose’ weeks I have now planned presents for myself, to entertain me between naps while I am in bed. During the weeks in-between I hope to be able to get out of bed more, and have an outing in the neighbourhood every now and then. 

I’ll treat myself to the book ‘Russian fairy tales’ by The Tjong Khing, a visit to a museum, and a spin in my camper. The week of 5 July will be the week of the best short films (which by the way I will select carefully as quite a lot of these are about cancer and/or death). The week of 19 July I will have a French week, with all sorts of French delicacies. The week of 30 August will be an English week, with a picknick with scones and liquorice somewhere near or at home and documentaries on beautiful Scotland or Wales. On the HITD list are also a few bonus treats for when the chemo has to be postponed for a week, or when I just need something extra. 

A flexible plan, for, as everyone who loves planning knows: they are there to be altered or adapted when necessary.  Anticipation always gives me energy! 

Chemo routine

Sleep
Awake, toilet, drink, rub head, watch the clock, it is night
Sleep
Awake, toilet, drink, rub head, watch the clock, Still night. Hello cat. Hello stomach.
Eat biscuit, rinse mouth, don’t worry, distract myself.
Sleep
Awake, toilet, drink, rub head, watch the clock, a little too early. Alright you both get your cat food. Wash hands thoroughly. A rusk for myself, pills, rather lie down again.
Sleep
Awake, backache, on the height of the metastasis. Is it cancer, chemo or just recovery? Pain subsides. Toilet, drink. It is time to rinse eye, cleanse it, eye drops. 
Sleep
Awake, toilet, drink, rub head, I want to do something. Have breakfast, tastes nice. 
Shower? No, rather lie down again. Indefinable feeling in breast. Is it cancer, chemo or just recovery?
Reschedule appointments today after all. Next week I’ll surely feel better. 
Read sweet apps, take a shower at leisure. Is this really me? Better ignore the mirror. So tired, just lie down a little longer.
Sleep
Awake, toilet, drink, rub head, I want to do some work. Small tasks, not too much reading. Answer a few mails, ignore most of them. Rub big toes that have become blue, new band Aid on little toe, on my heels through the house.
Lunch: little pancake full of protein, pills, change bed, read sweet apps. 
Rinse eye, cleanse it, eye drops.
Bell rings. Sweet person at the door. Open door, don’t let person in, too tired. How sweet, thank you very much, bye. Up the stairs, out of breath. Not to bed again? Only for a while.
Sleep 
Awake, toilet, drink, rub head, try again to work a bit. Half an hour. Nauseous, eating something helps. Take it easy. 
Mail!! Read sweet cards. 
Tired, ughh, bed. Pain near breastbone, why? Pain subsides. 
Sleep
Awake. Take my mind off things. TV or music? Too much. Draw up questions for doctor. Google. Read results in hospital portal. Look up medical terms. TV after all. ‘Dream cottage in the country’, quiet pace, beautiful images of Scotland. Advertising too enervating. 
Bell rings. Sweet person of the cooking team. Thank you. Tastes good. 
Try to do something again: into the garden, take my mind off things. Read sweet apps, thank you. Rinse chemo taste out of mouth. Rinse eye, cleanse it, eye drops.
Hold on a little longer, then sleep.

Tomorrow will surely be a better day.

Interim evaluation

The result of the MRI-scan confirms what I’d suspected. The cancer is really being pushed back by the chemo. I’m  by far not out of the danger zone yet, but this is indeed a positive interim evaluation! The internist-oncologist scrolled through the more than 400 images produced by the scan. On his monitor he put two images side by side:  one of the latest MRI scan (7 June) and one of the first one (30 March). Only then I fully realised: the frightening lump, 9 cm long, glowing bright white on the first images, had turned into a little, faintly greyish diffuse cloud, 6 cm long. A favourable result indeed, which means that there is every reason to start the second attack. 

My brother and I therefore walked from the internist-oncologist’s consulting room, straight to our appointment on the next battle scene. By the way, ‘battle scene’ refers to the poison that is being administered according to plan, not to the atmosphere in the oncology department. A fellow patient had already told me during my early days of chemotherapy that she had noticed that all staff members were, without exception, kind and professionally skillful. By now I recognize that as well. Moreover, they give me the impression that they are happyt to form a team with their patients as well as with each other. When you are so incredibly vulnerable as I am now, this is exactly what you need. For I am pretty tired most of the time, and in pain as well, and then I’m getting down and thus extra sensitive to atmosphere. Because of this peaceful atmosphere I was able to let things go, despite the bizarre surroundings, and was dozing off regularly between the changing of infusion bags and the squeaking noises of pumps. 

After the miraculously refreshing blood transfusion last Friday, one of my eye lids suddenly started to hurt on Monday afternoon. During the following days it became clear that it was seriously inflamed and at the same time I was struck by a severe (different kind of) headache. A professional pain specialist I know gave me some useful tips to reduce the pain. After the internist-oncologist had seen my eye today, he arranged a visit to the eye specialist straight after the chemotherapy. One shop stopping! Armed with new instructions and eye drops, my brother and I stepped outside into the warm air.    

We treated ourselves twice on delicious ice creams and later in the day possibly a film or nice TV-series. What I would most like to do is to treat all (almost 250) followers of these blogs tonight on ice creams as well. And there is reason for it: the chemotherapy kicks in, on to the next track!

Hemoglobin (HB) level

A frequently occurring side effect of chemotherapy is a growing deficiency of red blood cells. The hemoglobin level in the blood decreases gradually, which results in anaemia.  This also happened in my case.  Dear friends provided me immediately with lots of apple syrup, Roosvicee Ferro, Floradix and delicious dishes with liver and spinach. The case manager in the hospital explained to me that unfortunately all this was useless, as the problem is not the iron level.

My recovery after the fourth chemo was slow; I felt weak, washed-out, had a blinding headache, and could not face any activity. Even climbing the stairs became a huge achievement. I decided to ring the case manager. She immediately arranged a new appointment for a blood test. She called back the same day: I had a HB level of 5.5, which was low enough to get a blood transfusion. I asked her when this was going to take place. ‘I wanted to discuss it with you first’ she said. 

Her reaction did me a world of good.  Unintentionally I was launched into a life in which survival means a long path of nasty treatments. A life with only a few options. Her reaction gave me the beneficent feeling that not only my tumour and body matter, but myself as a person too! ‘To have things discussed with me first’ gave me the feeling to be a respected team player, and therefore a fellow human being. The blood transfusion (a big thank you for the generous donors) which she organized for me the next morning, made that I’m now feeling physically more human as well. 

Scans

Four rounds of chemotherapy attacks have now almost been completed. For the fourth time this total attack floored me for several days. Today, thankfully, slow recovery has set in.  My world is getting larger again and I realise spring has finally arrived. Already before the chemos started I was told that it is very heavy therapy indeed and this is exactly how I feel it physically. 

What I want to know most, is the effect of this first attack on my cancer. I wish I could get a complete survey of the number of cancer cells that survived the first round of poisonous attacks. Measuring is knowing, don’t they say? Unfortunately, for some time to come the state of technology is not yet as advanced to comply with this wish. 

Even before the chemotherapy was started, the mammography and the MRI, PET and CT scans all yielded separate pieces of the complex puzzle of my illness. Five high quality scans were made and yet it could not be guaranteed that all pieces of the puzzle would get known. Tumours or metastases smaller than 5mms are not detectable anyway, and abnormalities of the bones do insufficiently show up in scans. Besides, in the one scan something that looks like cancer was found, whereas in the other of the same part of my body nothing alarming could be detected. Apart from the scans biopsies were done, needed to ascertain whether the cloudy scan images do or don’t indicate cancer. The four rounds of chemotherapy also leave their traces on healthy tissue. This makes it even harder for the radiologist to draw conclusions on basis of the scan images. 

The most accurate scan in this stage, the internist-oncologist explains to us, is a new MRI scan of the breast. If it can be concluded that the size of the tumour has decreased sufficiently, there is hope that the dangerous metastases in my breastbone and vertebra have been attacked effectively as well. The same holds true for the lungs, in case there would also be metastases there. This MRI is planned for Monday, 7 June. 

On Friday, 11 June I’ll hear the results. However, there is no time to let the message sink in. Immediately after, the second rounds of chemotherapy will start – the second attack. For these sessions I’ll have to come to the hospital for several hours each week during 3 months. So, no summer holidays for the moment. The type of chemo is different from the first. It is unknown what side effects I’ll get from this chemo and when. For most patients this chemo appears to be less taxing than the first one. A frequent and annoying side effect in the second round is neuropathy. 

Fortunately, there is a low-threshold, free scan which I am allowed to do every day and as often as I want. Less accurate, but reliable:  self-palpitation. And I don’t have to wait for the results. Several times during the past weeks it helped me through difficult moments, for it is obvious: the tumour is decreasing in size!  

Being good

Chemotherapy came together with a new set of guidelines. As a rule I tend to keep to guidelines by nature. Now I’m faced with dilemmas or get caught up in confusing situations.

It started quite simple… I thought:

• Don’t eat grapefruit or pomelo, ugli, mincola or tangelo – that’s easy as I hardly ever eat grapefruit; the other fruits I hadn’t even heard of.
• Restrict the use of alcohol to nothing or one glass at the most, somewhere in the second week after chemo – Hmmm, a pity, but all right, I’ll keep to it.
• Drink 1,5 to 2 litres of water each day – I thought I did already, by swallowing all these pills each day. But this appeared to be insufficient. The result was an extra severe headache.

Two examples of instructions I find harder to follow:

• Brush your teeth at least 4 times a day, after every meal, with a soft brush and rinse afterwards with salt water (or use Paradontax toothpaste) – Whew! This is quite a hurdle in practice. As I have to eat a considerable number of snacks in-between meals, it comes down to more than 6 times daily teeth brushings. Brushing should not only be done very carefully, but also very subtly as the enamel can be damaged by all the brushing.
• After using the toilet flush twice with lid closed – This I gave up after having stood beside the toilet several times, waiting till eternity before I could flush a second time. I hope that separate toilets for me and my visitors will turn out to be sufficiently safe.

The letter with the appointment for the next chemotherapy also contains the hospital’s general guidelines to combat Covid-19. One of them is: Come to the hospital by yourself. I thought, well I’m certainly able to. Perhaps the chemo will affect my driving skills, so it won’t be suitable to drive. Rather on foot or on my bike. Arrived at the oncology department, I meet a surprised glance: ‘Are you on your own? Did nobody tell you to bring someone for company’? If they did, it has escaped me in the wealth of auditive information. And then the next surprised utterance: ‘Did you come on your bike to your first chemo? Can you please call someone to collect you afterwards’? So, I left my bike at the hospital and called a friendly neighbour.

A dear friend drew my attention to the fact that cats can be risky for people undergoing chemotherapy. Rightly so: via Google I quickly found more information with another set of guidelines like: Sleep in a different room from your pets. Oops. Does this balance the enormous advantages such as the ones I mentioned in earlier blogs?

I decided to take a few risks after all, and keep to two sets of regulations: the majority of the indicated guidelines plus a number of ‘gutlines’.

P.S. I want to express my appreciation to a good friend of mine who is kindly translating my blogs into English for my Anglophone readers. The more so as every now and then I throw untranslatable sentences/expressions at her to chew on, such as the above guidelines vs. ‘gutlines’!

Scenarios

There are two sides to my illness. On the one hand the delightful, unmistakable fact that the chemotherapy is already pushing back the cancer. I really do feel it: the lump is shrinking. Enough reason to waltz around the room!

On the other hand, I also read the hard facts: chemotherapy often works well against triple negative breast cancer but that is no guarantee that it will stop the – much more dangerous – metastases in the bones and lungs. Besides, this specific breast cancer often recurs in the first years after treatment. So, statistics are not to my advantage.  Fortunately I know that statistics are very important if you want to know what happens to 100 people who are in a comparable situation. They are less significant if you’re mainly interested in the survival of one of them. 

When my tall, handsome beloved was ill, I was tossed back and forth between hopes and fears. Feeling guilty sometimes when fear had the upper hand once again, because ‘being positive is important’. This was wearing me down, until I allowed myself to acknowledge two scenarios for the future and let them coexist in my thoughts. This same attitude helps me now. In scenario A the treatments to ban the cancer forever from my body are successful. I may suffer from chronic fatigue and recurring fear afterwards but can get on with my life that is so dear to me. The experience I have gained, I then can use to try to help others. In scenario Z the cancer is not defeated, and I’ll have to leave my loved ones and my body, and I’ll experience what God in his great love will have in store for me. Neither the care professionals nor I know which scenario will come true and when. Like two racing horses A and Z, together in the race.

Scenario Z induces me to make timely preparations and have orientating conversations, e.g. with a notary public and an undertaker. Not pleasant, but a useful thing to do for anyone. These steps do not distract me from preparations for scenario A, on the contrary. Everything is being done to make scenario A succeed. I undergo heavy chemotherapy, exercise as much as possible, enjoy the company of my family and friends, keep a healthy diet, go on making plans for the future, keep hoping and know how to make a party of little things. 

During the illness of my beloved, I learned that there are compassionate people who prefer to ignore scenario Z. I respect and understand that. 

Cap

My hairstyle started looking a bit scruffy by the loss of hair. Taking a shower was no longer a pleasure being having my hands full of hair each time. I asked my wonderful neighbour if she would be willing to crop my hair with a pair of clippers. She did a wonderful job, very skilfully. My tired hairdo was transformed into a trendy cropped style. I will be able to keep it like this for a few days until all my hair has gone, but this in-between step feels good. I feel a lot lighter, both literally and figuratively. 

I was now able to try the caps which I’d ordered. The selection appeared to be more difficult than I had foreseen. On most websites there is a rich choice of chemo caps. They are shown by models who look well and have sparkling eyes. I hesitated which colour would suit my pale skin and the dark circles under my eyes. Another complication was the size of my head.  It appeared to be no less than 58 cms! As I prefer not to feel any pressure I decided to take a bigger size. On a website which provides more than the usual one-size caps, my size is called ‘a beautiful large head’ (meaning the largest size). No wonder the size reduced my choice considerably.

Today I wore the caps, the one after the other, for a while. I had not been able to resist a brown one with a peak, suitable for sizes 50-58, but I am not going to wear that one a lot (good enough for a short video-call though). I have two other ones (51-59) which will be more comfortable and cosy, suitable for walks. 

Looking at my cropped head, I don’t see an egghead, but a beautiful large head indeed, full of jolly experiences, stories, inspiring encounters and cheerful plans.  

Checklist

Outside the skies are grey, but this morning the darkest clouds of wretchedness left; they had been keeping my body hostage since Sunday and thus myself in bed. Together with my dear brother who kept me company during chemotherapy on Friday, I take stock: 

• Headache managed better this time – check
• Maintained weight – check (what’s more, thanks to the excellent cooking of friends another kilo gained…;)
• Been able to prevent loss of hair – no (although it is not noticeable yet)
• Feeling like starting work and hobbies again – check

Another few days of rest and catching up on sleep and then ‘off to the Up-week’. 

Level

At the first consultation – after the size of the tumour had been established- I was already advised to take 4 times 2 Paracetamol a day. This gave me a shock. At that very moment I was only taking 1 or 2 Paracetamol tablets a day, and this sounded as a warning for whatever was to come. My own attitude at the time was mirrored: I had often had to encourage my dear better half to take his medication at the appropriate times and now I felt the same resistance against taking pills myself. 

What became clear to me – and what is well-known to care professionals- is that a basic level of medication is built up befóre the pain starts, so that one’s body is able to cope with it when it comes and levels out the severe peaks. The basic level for people with my diagnosis of cancer is: 4 times a day 2 Paracetamol; the second level is Naproxen which can be increased to a maximum (which is not yet toxic); the third level is Tramadol (which can make you drowsy); and on the fourth level are the opiates which are quite drastic. During the first round I managed to keep just under the third level. 

Car drivers know of this principle. If you have a long car drive ahead, it is better to leave in time and drive at a stable and moderate speed. If you choose to leave late, accelerate quickly to high speed levels and then put on the brakes firmly if need be, much more fuel is used.  And then are not even taken into consideration the risks on the road ánd the garage bill when the car is next serviced. Not to mention the stress caused in fellow road users. This phenomenon is also recognized by carers, for it is no fun to watch someone you love suffering by inadequate pain treatment.

Last week (the Up week) It felt good to taper off the Naproxen medication.  Yesterday morning before the second chemotherapy, I added the Naproxen in advance. In order to level up. It worked: Less problems with the coldcap and less side effects at night. The analyst (in me) had a quiet night. I hope that the levelling up is going to help me through Sunday, Monday and Tuesday, which were so heavy in the first week.

Even my two young cats seemed to feel it is wise to be prepared, and to start at the right level. When I went upstairs to go to sleep, they were both already lying on top of the bed, waiting for me. Purring supportively. 

About hair

I feel a definite afterglow after the mini-symposium and my birthday and the headache has gone. But slowly preparations are made for the second of the four rounds of chemotherapy. Today a blood sample was taken, tomorrow I’ll have a preliminary talk with the case manager and if the blood values are okay, I’ll have another chemotherapy on Friday. The effect of the second chemo (and the following ones) seems to be like the first one. This means that I’ll have to keep to my bed for a few days from Sunday onwards. At the end of next week, possibly sooner it will feel as if the tight band around my head will be loosened. In the second week I hope to be able to do nice things and specially to catch up on sleep. In short: bad weeks and good weeks will alternate.

New in the second round will be that I might start losing my hair and that my eyebrows will get thinner. In my case this will be quite a striking effect. A well-known method to restrict the loss of hair is the wearing of a so-called cold cap (a strongly cooled cap) during the application of chemotherapy. The case manager showed me a website where it was shown in diagrams what was the probability of keeping one’s hair when using a cold cap. This seems to depend on the type of chemo. I love diagrams, so I saw immediately that with the combined chemotherapy I will be getting, this probability will be anything between 2 and 20%. I could try it this first time of course, but I was also given information on wigs and all sorts of cloth caps. The first 15 minutes of the cold cap are supposed to be hardest as during this time it freezes the scalp. Those first 15 minutes I could easily cope with: I am the sort of person that gets on her bike with wet hair in the cold and rinses her head with cold water after the shower every day. But I am not particularly looking forward to sitting still for hours wearing a bathing cap which is attached to a cable so that you can hardly move. It made me dizzy. I don’t like anything that is tight on my head, be it a cap, hairband or even these smart headphones. The second round I’ll try again though, but I may opt out in a later stage.  If I do it will save time as well, for the cooling down and the after cooling of the scalp will take much longer than the chemotherapy itself.  

Once when I was a child, I proudly left my long hair with the hairdresser, knowing that a wigmaker could do a wonderful job with it… What craftmanship it is, making such beautiful wigs! I have a wonderful job myself, but certainly wigmakers have as well. They help getting lots of people through a difficult time.

Still, I know a wig is not for me. For fifty years my body has shown how I feel and where I stand in life. Each of my scars has its own story. I never wanted to dye my greying hair. My body is like a dear travelling bag, weathered by adventures. I’m going to get myself a collection of cheerful (soft and smooth) cloth caps, matching my favourite outfits. 

Clock

I once had the honour to supervise a student whose subject of graduation was to make an inventory of what a group of patients thought to be the most important object in their room at the hospital. To our surprise it turned out to be the clock.  

In my improvised temporary bedroom at home there is a very large clock on the wall. It was the first thing we bought in 1992 when my love and I decided to stay together for the rest of our lives. A large, sturdy clock for a great and decisive moment. During the last few days my focus was on this clock.

To counteract possible side effects of the chemo (nausea and a decrease of white blood cells) I have been given additional medication. It works, I have an appetite and even gained a kilo or so. But alas, in its turn this medication can cause side effects. On Saturday afternoon I started a blinding headache. My dear carers saw my eyes go hazy, I could only utter short sentences, apps stayed unanswered. The daily routine was gone: in the night I lay awake because of the pain, in the daytime I stayed in bed dazedly till late afternoon. I was glad to know this headache is only a temporary side effect. 

We kept to a strict schedule: 2 tablets of Paracetamol every 6 hours, plus a more heavy painkiller every 12 hours. With an even stronger one on hand if need be. The large clock ticked away steadily and helped me to keep time: it indicated day and night the hours and minutes until the following pain medication. 

In the past we sometimes had a guest who had to sleep under the same clock. I often took away the battery, for the clock has a rather loud tick every second, which can be quite annoying. This time the battery was allowed to stay. With its loud ticking the clock made itself heard every second in a hopeful way: time goes on and the clock will help me to pull through. 

Meanwhile the pain level is decreasing. The level of energy however is rising, and with it the anticipation for the small symposium and my birthday of course.

Purring

Thursday and Friday were very intensive. Interviews with care professionals to instruct and prepare me, reading folders and leaflets (a.o. regulations on hygiene and restriction of sugar intake), new measurements of body functions. The biopsy in the CT-scanner with long needles into my breastbone, the noise of the drill and the relief that the pain was not as bad as I’d expected. The taking of a blood sample which was scheduled and which I’d forgotten (I only realized after closing- time of the laboratory). Someone fixed it for me, so that the chemo the day after could take place after all. The room with the three treatment chairs, the talks with the nurses, the other patients and visitors, the coldcap on my head (more about this in a following blog), the bright red poison that flowed into a vein into my hand and caused an allergic reaction in my arm (which fortunately disappeared later), the many alarms of the several pumps. And finally the frightened glance of my little calico cat, twin of the red tomcat, and the smarter of the two. 

Meanwhile I am preparing a small symposium which is going to be set up quickly before next Friday on my initiative and urgent request. Out of necessity the research for my Ph.D. is put on hold for the second time, and I dearly wish that the care professionals and service designers can proceed with the knowledge and data gathered so far. 

At home my brother makes the guest bed in the study for me, next to the bathroom, so I needn’t go down the stairs at night. He stays for the weekend to care for me. When I go to bed, dead tired, my little red tomcat lies happily on the guest bed, very content with the new arrangements. The calico cat sits anxiously in a corner, hiding. 

The first bodily reactions start coming, in a totally illogical order. In my imagination the representatives of my body parts – or functions – report to myself about these reactions. My question to them is, invariably: “Is it ok, or is any action on my part required?” Their answer: “At this level we can cope, but we do not know what is coming, of course”. The analyst in me is busily categorizing and interpreting these signals and reports. 

I dread the anticipated effect on the stomach, the nausea and loss of appetite. When the first light stomach cramps manifest themselves, the experienced analyst in me soberly responds: “Logically speaking, this is just ordinary stress”. I am slightly irritated by myself. Stress may be totally logical, but so contra-productive just now. At that very moment my calico cat jumps on the bed. She presses her nose against me, snuggles up cosily and starts a long and loud purring. “It is not quite my field of research”, the analyst ponders, but it might be wise to focus on this sound, possibly it helps”. And so it does. The next message from the stomach area a bit later is: “Appetite. Please send some food this way”. Fed and contented I fall asleep. 

A preliminary plan of attack

In our local hospital as well as in an academic hospital my case and images have been studied extensively by multidisciplinary teams. My situation is very serious but fortunately I am young and fit. Both teams arrived at very similar plans of attack of the disease. If everything goes according to plan the cancer cells can count on heavy artillery indeed!  ‘According to plan’ means that the cancer cells stop taking possession of my body. That they hopefully even start to make retreating movements so that we need not stop the attacks prematurely. Today we decided to start the first round on Friday (that’s the day after tomorrow!) There is every reason to speed up procedures. Tomorrow a biopsy will be taken from my breastbone. The dangerous spots on my lungs are too small to puncture, or too difficult to reach. 

The 5 attacks in detail:

1. During the first eight weeks: 4x cycle chemotherapy type I: on the first day an intravenous drip (with or without a coldcap on my head), home the same day; the day after an injection to help my immune system to deal with the blow. Common side effects; nausea, hair loss and fatigue, especially during the first 3-5 days. Two weeks later the next cycle. Then an MRI to see whether the tumour has shrunk. That is the first exciting measuring moment. 

• After the result of the MRI: 12 weeks of chemotherapy type: 12x cycle chemotherapy type II: the first day an intravenous drip, home the same day, rest of the week recuperating at home. Common side effects: nausea and neuropathy (tingling in fingers and feet and possibly extreme sensitivity for cold and heat). Then a CT-scan to judge whether the spots on my lungs (the greatest danger is situated there and in my bones) have grown smaller. 

• Operation (amputation). This will be no dangerous or complex surgery, but with all the more impact of course. Revalidation after surgery. 

• Radiotherapy: 15-18 radiation sessions, one every working day. Common side effects: fatigue, sometimes pain and fluid retention in the arm. Try to regain strength.

• New rounds of chemotherapy, possibly 8×2 weeks of taking chemo tablets each round followed by one week of rest (so this treatment will last for at least 24 weeks). 

In short: we are going to fight a fierce battle against the rebel cells for more than a year. No one is able to predict how my healthy ánd rebel cells will react to treatment. It will be a battle on cell level, with the knowledge we now have acquired in medicine. 

I want to take up this challenge. I must confess that so far in my life I haven’t really had to fight to the limit, having had loving parents, protective older brothers, my tall great love beside me for 27 years, and good friends and colleagues. I want to take up this challenge, but don’t exactly know how. Now, when it really matters the strategy of the battle will be in the hands of care professionals. Even to into the bone. Fortunately, it will be mainly a physical struggle, for mentally I feel a great deal of stress. But I feel also the presence of God, who holds me. 

I looked at the internist oncologist, a pleasant, experienced man; we had an immediate click. ‘Is there something I can do myself?’ I asked. ‘Yes, try to keep moving (cycling, walking, exercising) as much as possible and try to eat well and healthy.’ On the way home I thought of all the teams which had been formed so far: a shopping team, a ‘do-it-yourself’ team, a ‘walk with Ingebee’ team, a ‘healthy cooking for Ingebee’ team, a ‘making music with Ingebee’ team and a ‘stay close to Ingebee in the first days after each chemo’ team. ‘Hurray’ I thought, ‘the allies have arrived!’.

Engine driver

The pace of my daily life has been reduced from an express to a slow train with uncertain destination. Simultaneously a team of care professionals tries to map out and start my new journey i.e. scheme of treatment. Both are complicated issues in such a complex disease. I am the engine driver of the express train. The second journey is planned for me ánd without me; I am the traveller and get to hear when I’ll be expected and where. 

A biopsy within a week appears not feasible after all; it will be a week later. Tomorrow I’ll have the ‘2nd opinion consultation’ which I’d asked for and on Wednesday a meeting with the radiotherapist for the third leg of the expected trajectory, which will only take place in a few months’ time. The ‘1st opinion consultation on the first part of the treatment plan’ still has to be booked, as it depends on the result of the biopsy.  I’m cycling with my telephone in my hand not to miss any appointments for new hospital visits, taking the risk of a traffic fine. 

At home I note all appointments in my diary – taking into regard travelling time and possible run-out. I also schedule time to prepare questions in advance together with my dear friend. I set my alarm to take my next dose of Paracetamol tablets to keep the pain at an acceptable level. I am happy to have organized everything so well and want to prepare for my first work-related video call. A welcome change. Just when I open my mailbox a new mail arrives: ‘We inform you that we have scheduled a telephone appointment for you’. It turns out to be a consultation with an occupational physician. This consultation will take place within the hour. If I am unable to come, I have to contact them timely it says in the invitation. So I sign out of the work-related video call. The doctor calls exactly on time and asks me whether it is convenient.

At night when I go to bed, my little red tomcat looks at me expectingly. He hopes for our daily ritual: a game we invented together and which we both enjoy tremendously. We end every day with it – always at a moment which suits me. And if I am not able to do it, never mind, he still strokes my leg softly…

MDO

In the course of my professional career I have sometimes been allowed to be present at an MDO (Multi Disciplinair Overleg = Multidisciplinary Consultation). During these medical specialists (surgeons, oncologists, radiologists etc.) meet to evaluate scans and blood values shown on large computer screens. Not only the cancer, but also the person afflicted is discussed, his/her age, general condition of health, social situation (e.g. 2,5 years ago she lost her husband) and his/her wishes. Aim: a carefully weighed medical judgment and a medically justified proposal for (the first steps of) a treatment plan. The first steps only, for ultimately – as I learnt then, and again with my strong beloved – it is no exact science; no one is able to predict the precise effect of such heavy medical treatment on the individual patient. 

Today I was one of the people on the MDO agenda. And waited for the advice.

On my request I received a telephone call straightaway:

• As the spots in the lungs are too small to take a biopsy (a piece of tissue) from, they are not counted as metastases for the time being. In this reckoning the number of metastases is under 4, or ‘spread to a limited extent’. This means that everything possible will be done to cure me. 

And there is hope that this can be successful.

• To get a better insight into what is going on in my bones, it is advised to take a biopsy from one of the two spots (metastases) in the breastbone. This intervention will be done in the department of day care and will take place within the next 7 days. On basis of the outcome the chemotherapy strategy can be made more effective. 

• Therefore, the order of the provisional plan is:  first chemotherapy, then operation (amputation), then radiation and possibly another chemotherapy afterwards. 

My living room is filled with the delicious scent of many flowers, the kitchen drawer is filled with lovely chocolates, on my desk there is a considerable pile of lovely cards, and my mailbox and my phone overflow with lovely well-wishers. They are too numerous to answer all, but every single one gets my attention and they do me good.  And what is more: top professionals in the field of breast cancer of various academic hospitals are being consulted on my behalf, address the case ‘Ingebee’ and give their advice. 

As the saying goes: “It’s no picknick”, but I feel mightily supported. 

Results

The facts at a glance:

• Metastases have been discovered in two spaces on the bones
• Possibly also metastases in the lungs, but that is not quite clear yet
• In the armpit near the lymph node a small irregularity was found, possibly also cancer
• The tumour is more than 9 cms large. It is of the fast-growing and aggressive type.
• We deal with ‘Triple negative’ breast cancer 
• In the MDO (multidisciplinary consultation) next Tuesday the images will be discussed, especially those of the lungs. The MDO will give advice on the scheme of treatment. 
• Probably next week already: consultation with the internist oncologist and start of chemotherapy as soon as possible.
• For the time being treatment will be curative (i.e. focused on recovery) instead of palliative. This approach will also be discussed in the MDO.

The bad news was brought in a warm and professional way. My dear friend and I looked at the list of questions we had drawn up together. We got all time in the world to ask these questions and the answers were honest. A new biopsy was taken, this time in the armpit to get certainty about what is possibly going on there.

The news, the tension of last week and the obligatory mouth mask in the corridors in the hospital started to oppress me.

My dear friend asked me where I wished to go. We drove to the natural cemetery, to the grave where 2,5 years ago my sturdy, dearest beloved was buried.  We ate something in the grass to revive ourselves. The sun was shining and warmed us, the sky was a lovely blue, it was quiet, the birds were singing. We were silent, a tear fell every now and then and we reminisced, recounting funny anecdotes.

The day is over and again my world has changed.During Easter I’ll rest to regain energy and digest the difficult  news.

Uptempo

Fortunately the hospital keeps up the pace. Instead of ‘sometime in the next two weeks’, I had the scans today already and hopefully I’ll get all results (scans, blood, biopsy) on Thursday. My good friend will come with me.

From six hours before the PET/CT scans I was not allowed to eat or drink anything or to do any sports. The latter is – as you know- no problem for me at all, but alas, it also includes walking and cycling. So farewell to my little plan to walk to the hospital on this beautiful sunny day. I couldn’t go by car either as I will get an injection with medication that could influence my driving ability. High time to put into operation a suggestion from my brother: set up an ‘Ingebee’ whatsapp group of neighbours who are if need be willing to step in when I need transport for shopping etc. This was organized in no time! Thank God for helpful neighbours and colleagues!

A dear neighbour took me – stripped of my ring and earrings – to the hospital for the first scan: the MRI. I’m not very fond of small enclosed spaces; one has to lie down in a narrow tunnel. I also did not particularly look forward either to the racket for which this device is notorious. It wasn’t too bad after all, thanks to Radio4 which was played via earphones on my request. One of the classical music pieces even happened to have the same beat as the hard noises of the MRI machine. I had to stifle a little grin as I realized in time that I was supposed not to move for 20 minutes.

From magnetic radiation (MRI: Magnetic Resonance Imaging) to radioactive radiation (PET-scan: Positron Emission Tomography): with an interval of 1,5 hours in-between, during which I had to drink 1 liter of water. The PET-scan starts with three quarters of an hour lying motionless after the radioactive solution has been injected (which is a challenge after just having drunk a liter of water). Then into the scanner. Fortunately, this machine produces less noise. Every four minutes the lying board is moved forward a little bit through the (fortunately shorter) tunnel of this machine. The whole scan takes three quarters of an hour, I hardly dared to breathe, hoping that the images will be clear enough to spot possible metastases or (much to be preferred) to exclude them. And finally, in the same machine the X-rays of the CT-scan.

When the entire session had ended, I was strongly advised not to come near small children and pregnant women within the next 4 hours. “Have you got another question”? “Yes”, one: “What about kittens”? “No, that’s alright”. Relieved and tired I walked outside where my brother was waiting for me to take me home (to my 2 kittens) and treat me to a lovely meal.

Another blog

For some time I have had a few minor physical complaints which I ascribed to reaching middle age. In a few weeks I’ll turn 50 and apart from telling birthday cards showing an even greyer ‘Sarah’ it appears one has to go through various physical discomforts. Via the new internet portal of my GP I sent her therefore a mail: should I come to her with my minor complaints or wait till the next population screening? The response was a telephone call: to come and see her!

About 50 hours later, in which a mammography, an echography and a few biopsies were taken and analysed, I (together with a dear friend who accompanied me) got the unimaginable diagnose: it is breast cancer, stage 2 or 3. The following steps will be taken in the next few weeks: A PET/CT scan and an MRI scan which will help to form a better idea of the tumour and the stage it is in. With these images a multidisciplinary team of staff in the local hospital can set up a treatment plan that suits me best. 

The word cancer evokes in me bad memories, too many and too recent. Do I have to relive all of these? It is only a short while ago that I was caregiver until my tall, dear beloved died, and now I have become a cancer patient myself. A positive memory from that time is that he provided an opportunity to everyone to share and sympathise with him via a blog. Very carefully he kept personal details of our private life away from his writings, so that he could publish his journey on the worldwide web and everybody who wished so, could stay informed. I am going to try the same and will publish at irregular intervals: only when there are medical developments. Feel free to follow this blog (sign up via the blue/green ‘Subscribe’ button), send it on to others or sign off.  Whatever you do is fine.