The year my world was a tiny place

Today I am admitted into the hospital. In the afternoon, I have another medical appointment. My right breast is injected with a blue fluid that will enable the surgeon to identify the sentinel gland during surgery tomorrow. As a result, the area around my nipple may be blue for months to come. The armpit has many glands. The sentinel gland is a sort of gate keeper. If he’s infected with tumor cells then all glands are removed. In that case, tumor cells may have spread into my body. Then the treatment that follows will include chemotherapy. It doesn’t cross my mind that this will be the case, it is standard procedure.
In the waiting area I meet another four women who are there for the same purpose, they also have their surgery tomorrow. One cries a lot, because she knows her breast will be removed. She doesn’t know how her husband will react, and fears it may harm their relationship. I know it wouldn’t affect Aidan. He loves me for who I am, which is so much more than two breasts. A mastectomy, the medical term, probably would bother me more than it would bother him. Another woman’s husband decided to stay in their house in Spain. She is going through this misery alone, one that deeply affects a woman in her being, and he is enjoying Spain. Again, I am happy to be in a different type of relationship.

Aidan is waiting for me outside, and after the examination, we walk up to what will be “my room” for the coming days. Due to COVID though, he is not allowed to even enter the hallway. The patients are too fragile. It is a first taste of what breast cancer can do to you. We give each other a big hug at the entrance. When I see him again, I will be tumor free. A nurse brings me to my room. I share it with a lady who is about twenty years older. She could be my mom. We get on well and have calm and friendly conversations. She had breast cancer seventeen years ago, and relapsed last year. This is not how I see breast cancer, in my view it’s an in-and-out of the hospital. Thanks a million, never see you guys again. Not in some cases apparently. She started EC chemotherapy two months ago, four sessions. It was massively tough on her. After the third session, she had a blood infection that got out of control and has spent the last three weeks in hospital. She is on the mend now, but too weak to even walk in the hallway. The doctors will drop the fourth EC because her body can’t handle any more. In September she will start twelve sessions of taxol. Hopefully the tumor will be sufficiently reduced by the end of the second series of chemo sessions, and then she will have surgery.
It is incredibly hot in the room. She is wearing a head scarf because she is bald as a result of the EC.
“ I will keep it on so not to scare you” she says.
“ It doesn’t bother me at all if you take it off. I’m sure you are beautiful as you are. And it’s hot” I reply.
Still she prefers to keep it on. As the evening comes, we watch some tv, each on our screen, mindful to keep the sound low. And then it is time to sleep. The nurse offers me a sleeping pill. I never take sleeping pills, and now is not the time to start taking them. I thank the nurse but don’t accept her offer. Tomorrow, I will get this misery resolved. Dusk settles, the hot night drags on, and I drift in and out of sleep.

Just when you think that things cannot get much worse, they do.

Last Friday afternoon, we comfortably floated into our last weekend before the surgery. Lise packed her bags, once again. In the evening, I drove her to my sister. On Saturday morning, they were all leaving for the south of France, where they rented a beautiful house for the next two weeks. A COVID proof vacation. Lise enjoys spending time around my sister, and the nephews are fun to play with. And it means she will have a week of distraction. By the time she will get back, I should be well on the mend. I was wearing the orange dress I like so much. In the car, Lise played her favorite songs and we sang along as we usually do. When we got there, we were met by two smiling nephews, all enthusiastic for their upcoming vacation and Lise’s arrival. Bags half packed, the house in disarray, my sister and her husband, a happy place. Aside from Aidan, I can’t think of anyone closer to me than my sister. Especially today, I feel more comfortable with her next to me. Probably because we truly are two peas in a pot. As children, we shared a bedroom for many years, talking endlessly each night before drifting off to sleep. We all sat down at the terrace for dinner, me keeping a safe distance from the others. Strange not to be able to cuddle the nephews, strange to be isolated at the table. Yet the last thing I need is a COVID infection and the surgery being postponed. The end of a hot summer day, the sun setting, and time for me to drive back home. I was truly relieved to leave Lise in the loving arms of my sister.

Sunday was hotter than Saturday, that was hotter than Friday. Aidan and I were by ourselves spending a lazy Sunday afternoon, on the couch watching television. So very different from my usual active rhythm. Towards four o’ clock in the afternoon, we went to Desert, Po, and Daydream. The plan was to give them a shower to cool them a bit. Daydream’s box is oriented towards the southwest, and the afternoon is a true scorcher for him. When we got there, Desert was acting weird. Her tongue was half hanging from her mouth, and she was not well responding. Maybe a wasp that stung her in her mouth, but maybe a lot worse. I carefully went into her box, and gently caressed her. I filled a bucket with fresh water and held it up to her mouth. She drank a little, spilling a lot of it because she couldn’t close her lips properly. But she seemed a bit more alert right after. She couldn’t chew any hay though. We called our vet. After a quick examination, he considered two options: probably a cerebral hemorrhage, or else a meningitis. Yet, a quick blood-test didn’t reveal any signs of infection. To give her the benefit of the doubt, she was injected with antibiotics. We took out the wall between her box and that of Po, which gave her more space. Po was moved into an outside box. Po’s restless behavior indicated to us she sensed that her neighbor and long-time friend was in trouble. All we could do was wait. Aidan and I returned home in silence, both hoping for the best. The hours dragged on. We had dinner outside without much talking. Finally the clock reached ten, and we left to check back on Desert. Her condition seemed stable but she had not improved. Offering her a bucket with fresh water again seemed to lift her a little bit. Feeling quite helpless we got ready to drive home and go to sleep. Mika’s dad promised to watch over her during the night. We knew the night would be decisive for her.

We wake up early today, and after a quick breakfast, we hurry back to Desert. Seeing her, we immediately know things took a turn for the worse. Desert is now keeping her balance through leaning against the hind wall. She is moaning but her voice is weak. I gently caress her, yet it is as if she’s already left. When I look into her beautiful brown left eye, I see she is blind. Aidan cries out and holds her, his arms spread against her side, his face in her fur. We call our vet to come examine her as soon as possible. She barely has the strength to drink now, her hind legs are trembling. Aidan demands that we stay out of the box because it may be dangerous. Our vet doesn’t take long to get there. There is no doubt that she is going through a cerebral hemorrhage that is getting worse. She is in an enormous pain. A lethal injection is her only option. She panics when the needle is injected, tries to escape, loses her balance and falls against the wall. Such a beautiful horse, what a waste. After what seems an eternity, she calmly passes away, and we can get back inside her box to give her a last cuddle. Her strong legs, which I brushed a million times, which took us on countless happy walks, lay unmovable. Our beloved Desert, damn it. My face is covered in filth and tears.

There is no time to waste. We have to get back home because I have the scan of my backbone at the hospital. Arriving home, I eat and change in no time, and hurry to the hospital. I check in quickly and walk to the waiting area as fast as a I can. Having arrived, I receive a couple of cups of water that contain a contrast molecule for the scan. Every fifteen minutes, I need to empty a cup. The examination will take place in one hour. Sitting down, the impact of what just happened dawns on me. Time and again I need to remove the mask to blow my nose. The mask gets soaked with tears. I can’t pull myself back together, what an immense loss. There’s another person in the waiting area, accompanying his old mom. He eyes me with compassion, probably thinking I have received my death sentence. Seems like a stupid spell I cast on Desert, and which I know isn’t true. Yet I will not whisper to any other animal of ours I should outlive it.

During the past two weeks, I have made five trips to the hospital: the gynecologist, the scan of my bones, the MRI of my breasts, the debrief of the medical exams with my surgeon, and a check of my heart condition. In addition, I had an appointment with Ana. She is a gynecologist, and a good friend of Elisabeth. She will be available to translate any medical reports into human language, and answer any questions I may have. I’m sure I’ll have many questions, and it reassures me to have her support. Ian and I drive to Elisabeth and Greg’s house. Greg is Elisabeth’s husband. The four of us have been good friends for many years. Elisabeth is always generous and kind. She drives me to Ana, who lives very close to her. Meanwhile the men do the last preparations of dinner. Elisabeth understands what I am going through. I’m happy she takes to time to accompany me. Yet due to COVID, she has to wait outside. Ana strikes me as a kind and capable rock of calm.
“You look tired” Greg says when I arrive.
I feel tired, but I didn’t know it shows.
By the time of dusk, we enjoy our late dinner on the terrace, surrounded by green. A good glass of wine, cosy conversation. Ian, Elisabeth, Greg, I couldn’t wish for better company. I feel scared and fragile.

The medical exams were fine, aside from the bone scan that revealed a mystery on my back-bone. It could be a trauma that is healing. There indeed is an area of pain there which I have felt for quite a while. I can’t tell for sure if I hurt myself. As a result, there will be an additional scan next Monday, on August 10. One can never have enough scans? I reason through it a zillion times. Maybe it is due to having been squeezed between Desert and the iron protection around her drinking fountain a while back. Maybe not. I have to stop worrying about every loose end. I have already decided to no longer read the medical reports: as I don’t have the skills to interpret them correctly, they leave me with anxiety.
My surgeon tells me he will do the surgery next Wednesday, on August 12. He seems like a tough man to work with: very much to the point, little tolerance for errors. Excellent features for a surgeon I think. The lady who is renting a half board for Po, our pony, is a nurse. She used to work with him, and left his team, disgruntled. “He would never be my surgeon” she tells me fiercely. I don’t dig into the topic with her, but I decide to discuss with Grace.
“He doesn’t leave a stone unturned for his patients, but he is highly demanding towards his team” she tells me. “You need to be comfortable with your choice. If you have doubts, you can still change.”
“He has an excellent reputation that goes beyond this hospital.” I reply, based on what Ana told me. “He should cure me, he should not be my friend. The feedback I received seems more about a personal dislike than his capacities as a surgeon.”
“That seems indeed the case.”
“Thanks so much Grace.”
“Any time, you know!” she replies warmly. Reassured, I hang up.

A heat wave has been announced for the coming days. I have booked a dressage lesson in the cool hours of the morning. Desert turned twenty this year. She still is a strong and beautiful horse, but she starts showing her age. She used to be queen of the pasture, first in the picking order to eat. This spring, a younger horse tried to defy her when I let her into the pasture. She ignored the other horse, but it hurt me to see her like that. After a good gallop, she now breaths more heavily. As a result, since last year, our lessons with her have been limited to half an hour. In her younger years, twice she was provincial champion in a dressage competition together with her previous owner. She was always well taken care of, as she consistently takes great care of her rider. In the spring of next year, she will retire. We purchased a pasture for her retirement in June. A horse can live up to thirty years. Her blood-test taken last month showed perfect values, so I have good hopes we have many years ahead of us. I will love taking care of her as much in her old days as I have done while riding her. But this is for next year.

This morning, I’m looking forward to our lesson. Mika, our coach, has an eye for detail. She relentlessly corrects me: balance, legs, feet, hands, head, back. Small changes can make a big difference. Often, as the lesson evolves, she lifts us to a point of glory, leaving me marveling for the rest of the day. I try to redo the magic without Mika, yet rarely do Desert and I achieve the same level by ourselves. This morning, the lesson goes just perfect, and I jump off with a big smile. I give Desert a big cuddle, loosen up her girth, and clean her hoofs. After I put her gear in the locker, I take the time to give her a fresh shower, which she greatly enjoys. As it will be a hot day, the horses won’t be out on the pastures. I walk Desert back to her box. It was our last ride in a while: the coming days will be even hotter. It is already Friday and next Tuesday afternoon I will check into the hospital. I give Desert another big cuddle, my arms wrapped around her strong neck, my face buried in her wet fur. “Desert, you will be there for me, right? I need you. I will live longer than you will, right? I love you so so much.” In tears, I walk back to my car.

From time to time, Aidan’s adolescence has been a rough ride, for him, and for us as a family. He has had an auti-coach ever since he was a young boy. Back then, he enthusiastically worked along, enjoying the attention. Growing up though, less and less people pass the test of “coolness”. The same applies to an auti-coach. Last year, he started seeing a new psychologist. He seemed a “cool enough guy” to me, and I thought Aidan would connect well with him. Yet, every time I picked him up after a session, he was more hostile towards me. The ride back consistently was a source of stress. I started wondering what all he told the psychologist, and what advice he received in return that could fire such rebellion. Aidan can be great at pretending a situation.

In sixth grade, Aidan’s teacher wasn’t very motivated or motivating in general. Oblivious on how to deal with children with asperger, she considered Aidan to be a constant source of disturbance of her classes. One day, Aidan twisted his ankle. It seemed fine enough in the evening. The next morning though, the pain was worse. I took him to our doctor, and Aidan screamed as he was examined. Our next stop was the pharmacy to get crutches. Then off to school. By the end of the week, the pain was still as bad as on Monday morning. So we made an appointment in the hospital with a specialist. Ian’s turn. I still remember the phone call I got at work, Ian approaching his boiling temperature. A medical examination, an x-ray and a puzzled specialist further, on their way to the parking lot, Ian said to Aidan “Your foot is really all right, isn’t it?”
To which Aidan replied “Yes dad, it is fine.”
“So why did you make me take half a day off from work, you lied to the doctor and even had x-rays?” Ian said, exasparated.
“The teacher was so nice to me. She helped me up and down the stairs, carrying my bag. I wanted for it to last.”
Five days of pretending, fooling our doctor, Ian and me, and his teacher. Ian and I had a laugh at the idea of the grumpy teacher being so nice to him all week. But we were quite worried that an eleven-year old could pull off such a trick. What else will follow?

In an attempt to improve the situation, I contacted the psychologist. I specifically said we didn’t want details on what he and Aidan discussed, but we did seek advice on how to contribute as parents to restore Aidan’s peace of mind, and hence peace in the family. Our demands ended up nowhere. That’s where we decided to stop the individual sessions, and replace them with family counseling. Ian and Aidan did counseling sessions with Ashley years ago. Ian probably has asperger too. But, as often was the case when he and I were young, it was not diagnosed. Two peas in a pot… Throughout Ashley’s sessions, Ian and Aidan grew to learn how to get along better, how to better respect each other’s space. Their relationship has really improved thanks to Ashley’s guiding. It’s a gift for life.

Switching back to family counseling with Ashley was the best decision we could have taken. Ashley would listen to all of us. Family counseling means that there’s an implicit reality check to what is put on the table. The pain points are addressed instead of avoided. As such we are building towards a solution. As a family, we have an open relationship, we can accept criticism, we find it okay to change our minds when convincing arguments are forwarded. Ashley doesn’t shy away from supporting Aidan if that’s how she feels. This comforts Aidan that he has a voice, and as a result he participates, which is crucial.

Children with asperger are intellectually capable and can assimilate what they don’t feel naturally. The older they get, the more the asperger traits become disguised. Up to a point where we consider them to be children or adults without asperger. We ignore the effort it sometimes takes them to fit in, behave as the other earthlings do, who they so often fail to understand.

From mid-2019 till March of this year, Aidan was observed by a psychiatrist and his team. We wanted to make sure we had all the tools to support him, because his behavior was deteriorating. He was isolating himself at home and at school. During the debrief of their findings, the diagnosis of asperger was re-confirmed. The psychologist in the team explained that, intellectually, Aidan was seventeen. She equally explained that emotionally, no age could be given with certainty, but in some aspects seven to ten could be appropriate. I felt I let Aidan down. Along his adolescence, him striving for independence and pushing us away, me focusing on my job, I no longer had paid enough attention to his needs. I no longer provided the safe harbor I had created when he was a young boy. And yet, growing up, it is only natural he would enlarge his world. The debrief was a wake up call. Ask “why”, understand the driver of the behavior, explain “why” for me, strive at a consensus carried by both of us. I knew all that, and yet, throughout the years of adolescence, I lost sight of it. In not so many years, Aidan will be an adult. We want this relationship to be good. Ashley tremendously helps me putting the above into practice.

She learned of my misfortunes last week, and suggested she would come visit us to hold the session on our terrace, COVID proof. I’m grateful for her offer, realizing the commute will take an extra forty minutes of her day.

I had the appointment at the gynecologist this afternoon. The waiting area was packed. In the end, because it took forever, small conversation between us picked up. It felt weird. Visually, I’m happy and healthy. Things aren’t always what they look. I was called in more than an hour after the scheduled time of the appointment, which took no more than a good give minutes. It was a relief to have the spiral removed. The doctor had read my file and wished me best of luck with the surgery and whatever may follow. And so I walked back out into the warm summer evening.

Due to the delay at the hospital, and the fact that it takes time for me to eat because I’m not hungry these days, I have not finished my dinner plate when Ashley arrives. Her familiar face, her smile. Being in tears is becoming a habit of mine. Ashley brought five candles, one for each of us, to lit up in support of my recovery. The wind blows out some of them, and I see it as a bad sign. Ian lits them back up and puts them in the house, safe from wind. We openly share our feelings and fears. I explain I will need a peaceful environment in the months ahead. As always, the session brings us together.

After Ashley has left, I remain glued to my chair. I’m drained of energy. It has become totally dark by now. I love our garden. The children go up to their bedrooms to talk to their friends. I retreat into the silent comfort of Ian, and cuddle up in the chair under a blanket. It will be tough, we will get through it as a family. I wished the evening would not end.

After another week of turbulence, it is weekend again. Last Sunday, Lise left for a horse riding vacation at the beach with her friends. We made the reservations last year in November, and it’s been their talk of the town ever since. On Sunday, with tons of luggage, they set off with one of the moms, all smily faces. Very different from the dressage and jumping camp last week that focuses on improving riding skills. On ponies, they galop barefooted without saddles through the water. Waves are splashing high around them. They have bikes to get around the domain. In the evenings, they cook together. Another week of ultimate joy. And it means that Lise is well shielded from the stress that Ian and I are living through. Nevertheless, in the middle of the week, she called me at the verge of tears.
” I’m worried for you mom”. Mom, not Beige.
” Aren’t you with the rest of your friends?”
” No, I don’t want them to see me cry.”
“Why don’t you talk to your friend Amelie? Share your feelings, she’ll understand and you will feel better.”
“I don’t won’t to spoil her vacation mom.”

On Monday, I called our doctor who had taken a blood sample last week to check my tumor marker. There is quite some criticism on this test, that can produce both false positives and false negatives. The marker was quite low, and I take the news as encouraging.

From Tuesday through Thursday, Aidan had his last three days of training to be a horse riding instructor. His good results at the competition last weekend are known. He continuously gets into a row about horses with one of the girls at the training, who doesn’t ride competition. Aidan has had his share of disappointments at competitions. He doesn’t brag about his achievements. By now he knows what it takes to get results: talent, a good horse, a good instructor, and loads of practice. The rows cast a shadow over his happy mood from this weekend, and I feel a bit sorry for him.

On Wednesday, finally, finally, I got the results from the biopsy. I have passed this waiting area gynaecologie-oncology many times. It is at the end of a long and gloomy corridor, and has a glass wall, partially fumed. From the corridor, you can see the feet of the unlucky inside. I was always grateful not to have an appointment in there. Ian accompanies me. I took something to read, but I have difficulty concentrating. I look at the other people, assessing their age. People are of all ages, but most of them are older than me. Every time a person gets called in, we hear a beep, and the picture of the person appears on the screens. “A steady broadcast of the unfortunate” I think by myself. Finally my picture appears. We sit down at the small desk in the little examination room. A young assistant-doctor starts by asking me a long list of questions on the medical history of my family, and then moves on to me. “What contraceptives did you use?” she asks. “I took the pill from the age of sixteen, and since I gave birth to Lise, I have had a hormonal spiral.” I reply. “Did you smoke?” she continues. My dad being a heavy smoker, I breathed secondary smoke from the moment I was borne. I remember our vacation trips to the south by car, my brother, my sister and myself squeezed together in the backseat. Time and again, my dad would lit up a cigarette. My mom was opposed to opening a window, for fear we might catch a cold. Those were the seventies and the eighties, we know better now. From the age of sixteen, I started smoking myself, off and on. I didn’t smoke neither during the pregnancy of Aidan, nor during the four months I was breastfeeding him. Yet afterwards, I started again, also because Ian was still smoking. A year later both Ian and myself finally gave up this filthy habit. I took the decision to quit and then stuck to it, without need for medication or other forms of help. Yet it took years for the sweet sentiment of fiddling a cigarette out of a package and litting it up had really left me.
After completing her long list of questions, the assistant-doctor moves on to explain the results of the biopsy, echo and mammogram. I’m at the edge of my chair. While doing so, she makes a drawing of the inside of a breast. The tumor is about 2cm. It is hormone-sensitive, which is very common. This is positive news she tells us, because there’s medication to stop or at least significantly slow down any similar tumors from developing. Because the tumor is small and unique, and also because it is the first time, it will be a breast-saving surgery. I’m grateful to hear this, yet it is not the most important thing on my mind. I want to be healthy again. I still have so much to live for.
She then takes a new sheet, and draws a vertical line in the middle of the paper. Left is ‘just this tumor’. “Then, in addition to the surgery, there will be radiotherapy. Chemotherapy is a question mark, yet to be discussed by the medical team.” she explains. My relatively young age of forty seven pleads in favor of chemotherapy. Right is ‘more than just this tumor’. “Then the treatment will be systemic, and will depend on what is detected. In this case, chemotherapy will be a certainty.” “Better be on the left side of the sheet”, I put in. “At this moment there is no indication you are on the right side of the sheet. We will schedule a number of medical exams for you in the coming weeks to rule out any further issues that we observe most.” she says.
She then invites me to take place on the examination table and palpates the tumor. I don’t see the use, because there are ample visual images available. I hate someone palpating my breasts now. In addition, since I know it’s a tumor, it hurts twice as much. Then we have to wait for her supervisor, who will be my surgeon. While left alone waiting, Ian and I talk through what we learned, and we both have good hopes. “It’s been detected in time.” we conclude.
After what seems a long wait, the surgeon walks in, together with the assistant-doctor. She pretty much replicates what the assistant-doctor already told us, including another uncomfortable palpation. “Do you have any questions?” she asks us. A zillion questions race through our heads, including one burning question: “Why?” “There is no unique answer to your question. It is a very common tumor. Many years of hormonal contraception and smoking are the most obvious contributors, but there’s no firm answer. Your hormonal spiral will need to be removed. We’ll do this during the surgery.” she says. All my hopes are on her, she will be my surgeon. I hope she is a super qualified surgeon, and I have no indications to think differently. The fact that she holds this job in an excellent hospital adds to my comfort. She stands up, getting ready to leave. And she gently pats me on my shoulder. “We’ll cure you”, she says. Just this gentle touch of her, and I lose my all-composed-will-deal attitude. After she walks out, the assistant-doctor asks if I have any further questions. I’m in tears behind my face mask. Ian doesn’t understand why I’m crying while I seemed fine up to one minute ago.
When we go back into the waiting area, it’s past noon. A nurse will book my appointments. My picture again appears on the screen, me smiling in better times. The nurse tells me that if I can stay a bit longer, they will take an x-ray of my lungs right away, followed by an echographie of my abdomen. On August 5 I’ll have a scan of my bones, and on August 13 an MRI of my breasts. After, I will have the appointment to discuss the results, and then we’ll book the surgery, that will take place probably early September. “My goodness, this takes an eternity” I think. At the same time, I see it as a sign that the doctors are not overly worried.
Ian and I walk over to the where I’ll have the two medical exams. Due to COVID, he is not allowed to accompany me into the waiting area. So we part. Ian will wait for me outside, where a beautiful summer day is at its best. I feel trapped inside. Luckily, the two examinations are quick. I already obtain the confirmation that no issues were detected following the echo of my abdomen. More encouraging news. I’m relieved to walk outside a little after 2pm to join Ian. He was just on his way to Aidan, whose class has finished for the day. He drives back, picks me up, and together we go drive to get Aidan.
We decide to have a late lunch at one of our favorite places, close to where Aidan’s training is taking place. The three of us sit down in the shade of one of the old trees. The terrace is peaceful, feet in the sand, the quiet talk of people surrounding us. We order pastas and drinks, and engage in cosy conversation with Aidan. After the morning events, I sink into a state of safe relaxation.
We get home only after 4pm. Tomorrow is Thursday again, my second attempt to work in the office of my new employer for the first time, and meet my colleagues. Around 5.30pm, the surgeon calls me. She asks if I can be available for an echo of my heart on Thursday. Of course I can, it is my number one priority. How on earth am I going to explain to my new employer on a Wednesday evening, that I will be absent on Thursday, while in the morning I had confirmed I would be there. I already took Wednesday off. In addition, with all the additional examinations planned, I cannot go on taking vacation without offering any explanations. So I call my boss. He is a most friendly man. Exactly what I don’t need if I wish to remain composed. But exactly what I need, and what I have missed during the past six years. In tears I explain to him how since July 8 I have been on a roller coaster. His wife went through breast cancer treatment in the same hospital a couple of years ago. She is healthy and well. I apologize for letting the team down, right after being hired. “You are not to blame, you didn’t choose this. We’ll wait for you.” His words are genuine and comfort me.

On Thursday, another trip to the hospital. My heart was barely visible on the echo. I muse that it went into hiding because it is scared. But no issues were detected. Another encouraging bit of news.
I decide I cannot wait until I have the surgery to have the spiral removed. It accommodates the development of the tumor so I want it gone as soon as possible. There is a slot available next Monday, which I gladly take. In the evening, I call my friend Grace who works at the hospital. Her daughter Camille and Lise have been classmates since they were three years old. Countless parties and sleepovers further, at the age of fifteen, they are still in the same class and close friends. Camille’s horse is boarded at the same stables as Desert, Daydream and Po. As a result, Grace and I see each other a couple of times a week. I tell her what I already know and the dates of the examinations that are yet to come. She is surprised it will take such a long time to get a complete picture, and promises me she’ll look into whether the dates can be moved forward. I gratefully accept her offer. The sooner this tumor is removed, the less damage it can cause.

On Friday I received confirmation that the x-ray of my lungs revealed no issues. Again positive news. But so much uncertainty is still ahead of me. As my sister and I used to say mockingly when we were young: “Only calm can save you.” Elisabeth tells me the emotional storm calms down once you have a Plan.
Around noon, Grace calls me. The scan of the bones has been moved to July 29, the MRI to August 2, and on August 3 I will discuss the results with the surgeon. It will be a different surgeon, but one she highly recommends. I cannot thank her enough.

Yesterday, Ian and I woke up early and had our morning coffee on the sundeck. After breakfast, Ian leaves to pick up Lise and her friends after their vacation. I have a dressage lesson with Desert before the heat kicks in. It goes really well. I get so much positive energy from a great ride with Desert, it puts me in a good mood for the rest of the day.

Today is Sunday. Lise and I take the scooter to drive to the stables. I bought the scooter only a month ago. It is a dark blue Vespa with a beige leather seat, and a great means of transportation during summer. We have baptized it “Groover”. Lise hasn’t seen her horses Daydream and Po in a week, so she is eager to get there. Once arrived, we are not in a hurry, and I take my time with Desert. On our way back, we stop to have an ice scream. How good life can be. Next week, there will be another couple of rounds.

Tonight we had invited Cécile, Ian’s godmother. She and I go a long way back. At the age of six, we were classmates and little friends. As we grew up though, we drifted apart. At the age of twelve, I traded our cosy village school for a high-school in a bigger city. Later on, we studied at different universities, after which I worked abroad for a couple of years. But somehow we re-connected when we were in our twenties. When I was pregnant with Ian, it didn’t take me a lot of thinking to decide on who I would like to be Ian’s godmother. A godmother is someone who can inspire a child, at different stages through life. Someone who holds up a high level of ethics. Someone who I know will remain a close friend. Cécile accepted without hesitation. I have never had second thoughts about our choice. Throughout the years, the intensity of her and Ian’s activities has varied. Yet, the bond which has been forged from Ian’s young age looks as if it is there to stay.

Cécile lives by herself in an apartment in a city. She is highly sensitive, and one of the most organized people I know. Quite different from this perfect storm of our busy family and professional schedules, our ever-needy yet beautiful garden, the continuous flow of friends of our children in and out of the house. And not to forget, the equally continuous flow of things that come with the horse riding. Saddles, horse boots, gear, blankets: one is never out of smelly stuff brought back from the stables and that requires cleaning before being put away. Someone told me that horse riding is more than a hobby, it’s a way of living. And over the years, I have learned that such is very true. Owning horses is incredibly rewarding mentally and physically, but also very time consuming. I should gradually be able to count on our children to help me with this less glamorous part of being a horse owner. Yet, wonderful people as they are, they are the biggest mess-makers I have ever met. From a young age, Lise would change dresses a couple of times a day. I mused that puppets magically disappeared at different places in the house, leaving behind a small heap of clothes on the floor. Today, too often the children’s rooms look as if they were just robbed. Elisabeth tells me all teenagers need some form of rebellion. A messy room is one many parents would opt for. She’s right.

Cécile coming over to our place for dinner has always been cosy and informal: together with Aidan, we enjoy lengthy conversations accompanied by good food. The children drift in and out, appreciating the atmosphere surrounding Cécile’s visits. With Cécile, there is no need to pretend. But due to the uncertainty I am facing, I am living through the days in a sort of haze. Anything that requires an additional input from my side equals a hurdle I seek to avoid. This includes receiving friends, also those I’m really close to like Cécile. So yesterday, I called her up to share my misadventures and cancel our dinner. She was shocked. It’s those terrible situations one wishes one could undo, knowing one can only try to soften things from the sideline. “Call me whenever you need me. I mean it, okay?” she tries to assure me. “I will, thank you Cécile.” I reply.

It is finally Sunday. This wasn’t the easiest week. Ian was on a four-day seminar from Monday through Thursday to become a horse riding instructor. We drove him to the seminar each day. Such avoided exposure to COVID on bus rides. Part of the drive is scenic: a winding road through nature and a beautiful little village mid-summer. It is quite enjoyable, yet it adds up to two hours of driving a day. From Monday through Wednesday Lise was at a horse riding camp where Daydream, Desert, and Po are boarded. She’s part of a close group of teenage girls fond of their horses. The last night of the camp, they go for a long walk through the dark woods and then sleep – or don’t sleep – in their tents. A source of ultimate joy! During summer, Aidan and I take three weeks off, the children have nine. It is always a stretch to combine work with all the taxying for the children. Nevertheless it feels good to see that both of them are enjoying their summer.

On Tuesday I had the biopsy. It was a non-event, I knew what was coming. They redid the echo and the mammogram. I should have had the check-up in the hospital right away. It would have meant one less week of stress in my life. Regardless, they didn’t see anything new, took the biopsy, and I went back home. I will get the results on July 22. I’m less fussy about waiting than I was a week ago. One gets accustomed.

On Wednesday night I got into a major quarrel with Ian. He was quiet on our way home after his seminar. Despite my efforts asking him about his day, he didn’t care to talk. He was probably tired after three days of learning. Equally, his asperger brain gets overloaded in new situations. Then he retreats in the comfort of silence. I had already prepared his dinner in advance, so he could eat right away. And then we were off again. First we would pick up Zane, so both could ride their horses. At best, we’d be back in three and a half hours, around 10.30pm. On top, on Thursday morning, I had to get up early to drive into work. It was the first day since COVID had hit us that our team, my new colleagues, would physically work « on site » again, one day per week. Normally I enjoy our trips to Kesh. Yet that evening, it seemed like an immense hurdle between me and my bed, which I was desperately longing for. Getting back into the car after dinner, I curtly told Ian he was not to waste any time when riding Kesh, because I was exhausted. He was irritated too, and as said, before we had even left our street, we were in a major quarrel. Ian has this terrible habit of shouting out the most hurtful things that come to mind in a discussion. Of all things he could have screamed, « cancer bitch » echoed through the car, and I snapped. I hit the breaks, turned the car around, and steamed into the house. Normally I praise myself for consistently keeping my calm in discussions with Ian. Now I thundered all over him, knowing it wasn’t right. While doing so, I saw the surprise in his eyes. I cried a bucket of tears. After calming down, I drove Ian to Zane, and Zane’s mom was so kind to take over from me and drive the boys to their horses. Me who generally is in control, in control of my schedule, in control of my job, my emotions. I’m deeply hurt by what Ian shouted, and I’m mad at me for losing it.

On Thursday morning, for the first time since early March, I drove to the office. As a precautionary measure, our temperature is taken at the entrance of the parking. And I had a fever. « Madam, please wait ten minutes and then we’ll take your temperature again. » I patiently waited. Already on Wednesday I wasn’t feeling overly great. Ten minutes later, I was running an even higher temperature. As a result I wasn’t allowed to enter the building, and drove back home. Two hours wasted, and feeling bad about potentially having endangered my new colleagues. So I called my doctor and went for a COVID test. More productive time down the drain.

In the evening my ex-colleagues had planned a small-scale goodbye party for me. For months, our encounters had been of a digitalized nature. As such, we were all enthusiastic to share dinner together in a cosy restaurant. Yet, with all the COVID fuss ongoing, I had to be transparent. Sure no one wanted me at the table running a fever. As a result my goodbye party went ahead without me. They sent me a picture with their happy faces. More frustration.

On Friday I received the negative test results, and was again free to leave the house. After a week of fuss, it was a relief to saddle up Desert: on Friday, on Saturday, and again today. At least something that goes according to plan. In her younger years, Desert came up champion twice in dressage at provincial level. Even though she has aged, she is still highly skilled. And equally important, she is very forgiving. I have learned a tremendous lot from her. I love every bit of caring for Desert. It starts with our big greeting cuddle when I get into her box. When I ride Desert, there’s just her and me. Sitting correctly, in sync with how the horse is built, is the essence of good riding. After years, it still takes all my concentration to get it reasonably right. I adjust, she adjusts. Desert reacts super well to instructions given through adjusting pressure of the legs. After warm-up, it becomes a beautiful dance where horse and rider move in sync. By the time we have gone through our routine training, I check my watch. Most of the time, an hour has flown by.

I’m grateful I feel physically well. I see it as a good sign that the cancer cannot have progressed too much. This is essentially different from my dad. My dad abided by the Burgundian way of living: rich food, lots of drinks, and also cigarettes. The benefits of physical exercise just did not enter his mind. Despite his unhealthy manner of living, he was a bright man. He needed little sleep and spent a lot of time reading, and watching documentaries of all kinds well into the night. As a result, he was a deep barrel of knowledge. He also was a tough dad, especially when I was in my teens. I think he went through the occasional moments of desperation, as I do now with Ian. But he taught us right from wrong, the importance of hard work, and I deeply respect him for it. My dad shunned doctors, which he perceived to be the Bringers of Bad News. When, in 2014, he told us he was not well, we knew. In his case, not well meant really not well. He was diagnosed with cancer in an advanced stage. He had surgery after which we almost lost him twice. After a lengthy stay in the hospital he went back home for the rest of his recovery. Then he started chemotherapy. And for a while, we thought he would make it. But the cancer had already spread too much. With her whole heart, my mom took care of my dad up to the very end. After a year of utmost misery, his strength that we had always taken for granted had completely left him. He passed away in November 2015. My sister and myself, focusing on our families, reasonably came to terms with our dad being gone. In contrast, my mom went through rough times facing she was left behind in her mid-sixties. After a life of hard work, they had barely started enjoying their retirement years together. My brother equally lived through a dark couple of years. My mom and my brother are very close. I cannot yet tell either of them that I probably have breast cancer. It will catapult my mom six years back in time. She will imagine the worst scenarios. Oblivious to our reality, she regularly calls me, telling me the events of her day. A series of light-hearted conversations, whereas in reality I’m deeply affected by the massive uncertainty I’m facing. Aside from Aidan and my sister, if there’s one person in the world to whom I would love to turn to comfort me, it’s my mom.

I was back at the competition this morning when Elisabeth called. She’s returned from her trip to Italy. Adian sees me walk away on my phone and comes over to say hi to her. Elisabeth lived through a cancer treatment herself. That makes her the only person I talked to so far who really understands. “I feared this was going to be your message” she tells me. Good friends have a sixth sense for one another. We talked for quite a while. “There will be good days too” she says. After we hang up, I feel somewhat reassured.

Ian’s three-day competition is a most welcome distraction. The four of us will spend pretty much the entire weekend on the site. It is still morning when we get there. The sun is out, yet it is not too hot. The perfect weather. The site is buzzing with riders, their family and friends. Horses are everywhere. Competitions are ongoing in multiple arenas in parallel.

Despite COVID infections decreasing, I’m somewhat concerned. “If I will need surgery, better not have it postponed due to a COVID infection, right?” I ask Aidan. “Who knows how the alleged tumor may develop in the meantime.” Aidan agrees “Let’s avoid the more crowded parts.” I’m already imposing things on the family, I think by myself. Aidan, Lise and myself find a quiet spot at the end of the arena that still offers a good view. We install ourselves in a couple of comfortable chairs. Another seventy riders before it’s Ian’s turn, meaning lots of time to sit back and relax. “I’ll get us the drinks and snacks, then you can avoid the crowded bars.” Aidan says. Normally I insist on contributing my share. Today I happily take Aidan’s offer.

“Beige?” “Yes Lise?” “That lady has cancer.” Not far away from us she spotted a lady who obviously is undergoing chemotherapy. ”I know, let’s be discreet, won’t we? I love you.” “I love you too Beige.” I know it’s inappropriate, but I can’t stop secretly observing the lady. She sits down quietly the entire time. I wonder how she feels. I used to find it outright scary to see people who undergo chemotherapy. It felt like facing my worst fear. Yet here I am, and to my own surprise, fear is not the overwhelming emotion. I’m determined I will give this my best shot to then get on with life.

Zane joins in, waking me up from my thoughts. He talks endlessly to Lise and myself. A bit like Lise, he easily transforms into a river of comfortable conversation. It is close to lunch when Ian and Kesh make their way into the arena. Twelve jumps, two minutes to capitalize on the endless hours of practice that preceded. I’m nervous. After the many disappointments with Daydream, I so much want it to be good for him. He trots Kesh around, showing her the jumps. They seem to have the right balance between being relaxed and ready to go at it. “The next combination. We welcome Aidan and Kesh!” Then the bell rings. They pick up canter and head towards the first jump. I hold my breath at each jump. They ride a beautiful competition, and most importantly, Ian is enjoying himself. They finish with a good timing. We cheer with relief. As Ian and Kesh make their way back into the practice arena, we go find Ian to congratulate him. “Super well done little friend!!!” Seeing the happiness on his face is priceless.

Aidan’s booked the four of us into the same restaurant as last night. He and I sit down on the balcony in the shade. “I love you.” Aidan signs. “Me you too.” I joke back. We order a glass of chilled wine while we wait for the children to return from putting Kesh into her box. If only for the laid back lunches and dinners outside, summer is the best season of the year. After a while, their tanned faces appear up the stairs, the two of them engaged in joyful conversation. We are ready to enjoy our late lunch. No more competition for the rest of the day. Today is a good day.

Dawn came before five am, birds started their songs. I wake up after a couple of hours of a restless sleep, feeling wrecked. I am only a week and a half into my new job, what will my new boss say? Through my employer, I have great health coverage, I hope they won’t think I knew before July. The art of creating more stress, I have to put this out of my mind.

I really want to talk to Elisabeth, my dearest friend and now also colleague. But as she is traveling in Italy, I don’t want to cloud her vacation with my troubles. A couple of summers ago, she was traveling in Italy too. All too well I remember reading her email on Sunday morning, a cry of despair. She was taken into emergency in a hospital on Saturday evening, just to have surgery that same night. After further analysis, it was concluded she had ovary cancer, after which she had more surgery followed by chemotherapy. I remember exactly where I was when she told me what lay ahead of her. I was having my periodic ruling over the elements in our little garden universe: you I shall help to thrive, you weeds shall be removed. In my shorts, dirt all over me, we cried when she told me. I conclude jokingly that she should really stop going to Italy, something bad happens to one of us when she does.

Since the COVID home working kicked in, going to work means descending the stairs. We have a lovely house: the length of the house is almost entirely made out of glass. The windows open up widely, and connect inside and outside into one great living space. In the morning, I have my coffee outside on our big square bench. It is made out of corten steel that colored deep red, with wooden rails on it to sit on. In the middle of it we have planted beautiful grasses. I love sitting there, caressing our cats, marveling at the garden, enjoying the calm before the heat of the day kicks in. Pretty much the entire ground floor of our house is a wide open space, with ample great places to install oneself with a computer or magazine. This morning, I cannot see the beauty we have created. I am exhausted. After one hour behind my desk, I trade it for the couch. But it doesn’t take me long before I decide that laying on my belly with my computer in front of me must be the better option. It doesn’t help, sitting up may be preferable after all. In the end, sitting up straight I fall asleep surrounded by my papers and computer. After a short nap, I feel better, and decide to get another cup of coffee. And then the cycle starts anew. I hope my work has its normal quality. I consistently set the bar high for myself. But today, I can’t be sure I meet my own standards.

I’m happy to see the working day drags towards its end. I put on horse wear and get in the car with Ian. He is all excited about what follows. A three day horse competition with youngsters of his age is a wonderful experience. The whole site turns into a joyful camping village, also housing a couple of hundreds of horses. Riding three days in a row, being submerged into the rhythm of competition is great learning, for both riders and horses. We are not five minutes into our drive when he puts on music and starts to sing and dance in his seat, expecting me to join in as usual. I can’t do it, my spirits have left me. I see him eying me, surprise on his face. My sweet Ian, he doesn’t deserve this. And I break down. All the tears I wouldn’t cry in front of him flood out. He doesn’t understand, of course he doesn’t. Mom is the adult, adults know, adults are strong. “What’s the matter mom, explain to me?” And so I tell him the unfortunate revelation of yesterday, and the fact that prognoses for breast cancer are good. I know he’d prefer a stronger message. But it isn’t the flu. At the age of seventeen, he realizes that too. From a young age, I have preferred telling our children the truth instead of diverting their attention to something else. Life isn’t always a fairy tale, and it arms them for when they will have to fend for themselves. But this is beyond what I thought I would be confronting them with. It doesn’t feel fair.

“I love you mom” Ian says “I’ll be there for you.” “I know you will be” I answer, “I love you too.” I know he won’t be very present: as a teenager he has a zillion plans and I wouldn’t want it any other way. I don’t know how Ian’s asperger brain will process this. I make a mental note to ensure a good communication with him in the coming months. The rest of the ride we are mostly silent. Both of us are relieved to arrive at the stables. Picking up Kesh and all her stuff puts us back into the mood of the competition, and diverts our attention away from the surreal announcement I made earlier. We will get through this, I think. Driving Kesh requires my full attention. I compare it to driving with a fish bowl: let’s not have water and for sure not the fish splashed all over. Kesh is not buckled up, so braking and turning should be slow. On top, Kesh gets all fussy when we don’t respect the peaceful ride she counts on. In the past, despite our efforts, we have had stops to check on her because the trailer was shaking so much, just to see the four legged lady was perfectly fine. She’s very different compared to Daydream, who patiently looks out of his little window. On the way to the competition Ian calls his friends who are already there. It feels good to hear his enthusiasm mount.

Hundreds of guests are arriving on the same afternoon, with horses and their equipment. The village is buzzing with anticipation. Maneuvering the car on the crowded site is always a little nightmare, especially with the trailer attached. We arrive rather late. But we are lucky to find a good spot and the massive unloading begins. We push our way through the crowded corridors in between the boxes, filled with young and healthy people passioned by their sport. I love the atmosphere, but tonight it feels very different. I’m not part of this, I have cancer. When the car is unloaded, Ian will take care of the rest. Relieved, I lock the car, and find a spot on a deserted bench next to a practice arena. I need a moment by myself. The sun is setting on this sunny summer evening. A calm descends over the village, at least this part of it. An acquaintance passes by and we wave, but she sees I’m in no mood to talk and walks on. A lady almost my age starts her practice ride. We are the only two people left, aside from occasionally a few people walking by. Her horse is all power and beauty. The first twenty minutes are warm-up, but then they reach this beautiful harmony. I really enjoy watching them.

Aidan texts me that he and Lise are on their way. We have reserved a table for a late dinner in the restaurant on the site for the four of us. Zane, a good friend of Ian joins in for dinner. He has this perfect ability to blend in. Despite my mental state, him dining with us is not intrusive. Then more friends of Ian join for a drink, including a spoiled fifteen year old brad who as usual takes up all the space. I’m too tired to steer our conversation towards something sensible. Luckily it doesn’t take too long for her to move on to claim other people’s attention. Great food, a glass of chilled white wine, no need for me to talk much, the comfort of Aidan, a warm summer evening. I realize we will continue to enjoy good moments in life. After dinner, we say goodnight to Ian who will stay with his friends. Aidan, Lise and myself drive home together. I will sleep well tonight.