4/ July 9, 2020 – Ian

Ian has asperger. Explaining the past seventeen years with Ian takes a book. Born without a manual, we wrote it as we went along. It includes quite a number of success stories. Equally, looking back, there are things we could have done better. I assume many parents feel that way. He is a most precious child, extremely creative. The attic has many boxes filled with his drawings. I can endlessly marvel at the stories that developed as he was drawing. I used to be his big hero, and we spent an absolutely wonderful time together when he was a child. Yet, since he reached the age of fourteen, I have faced moments of deep dispair, feeling I was failing to make his restless soul happy. He is eternally seeking to belong, not necessarily reading the signs. His default position is to reject my advice. After the rocky years of adolescence, it does seem things may gradually be turning for the better. I want him to truly know that Aidan and I are there for him, that we love him. Yet, I have come to accept that this gem stone will make his own journey through life, wherever it will take him. As our horse coach in Ireland told us when talking about her adult sons: “Boys can’t be told.” I agree.

For Ian, interactions with children at school proved to be tough, especially in primary school with parents meddling in on who should be friends with who. Ian was rarely invited to children’s birthday parties. Equally, aside from a few exceptions, throughout primary school, teachers generally found Ian to be a difficult child. And so, from the age of ten, Aidan and I created a parallel world for him: we picked up horse riding as a family. Ian connects really well with animals, and horses were no exception to this. We became a member of a small scale stable that is family oriented. It had a warm group of children of the same age, sharing this same passion. Both Lise and Ian spent a great part of their childhood there. Summer camps were numerous and joyful. And for Ian, it certainly made up for the lack of interactions with his school mates.

As Ian became a teenager, he wanted to get more out of the horse riding. He wanted to learn jumping, and take part in competitions. As the stable didn’t offer that level of support, and as we all had come to a platform when it came to learning how to ride dressage, we moved our horses to a new place. As a result, we could now take private lessons, and Ian could start taking part in competitions with his big friend Daydream. I thought we had made him happy, but I had to realize I was very wrong. Ian always aims for higher, instead of capitalizing on what is already achievable. As a result of his ambition, combined with his lack of fear, his learning curve is steep. Yet, the more he learned, the more frustrated he got. Competitions became a sequence of failures, because he didn’t have the patience to first acquire the skills and then subscribe for the lower level jumps, which Daydream masters perfectly well.
This is very similar to Ian picking up skiing. I remember him skiing ahead of me down the slope, way faster than his skills allowed him, falling, me holding my breath. Just to see him get back up, and do it again. This is how Ian learns, the hard way. With this safe and forgiving Daydream, it has not been any different.

In May, after eighteen months of practice, to end his growing frustration about Daydream, we bought him a new horse, Kesh. Lise’s legs have grown so long by now that her pony became too small for her. She will gradually transition to Daydream in the coming months. Both of our children are kind with their animals. Yet what each of them seeks is very different. Lise rides horses because she loves the interaction with them, they are not a medium for her to shine. That’s also how I interact with Desert, so I can relate to it more. I admit that I’m secretly happy for our friendly Daydream to be put under the care of our patient Lise. Kesh has more potential than Daydream, and Ian is ready for this level. Aidan and I judged it wise to continue to board Kesh where Kesh’s coach is based. The fact that she also works as a teacher with children with autism was an extra we learned about after we had taken our decision. She demands Ian’s respect, doesn’t go along with any unrealistic goals, and her lessons are top. For the past couple of weeks, Ian has been thriving under her watch. His progress as to cultivating fine riding skills, not imposing oneself on the horse, is impressive. The only drawback of our decision on the boarding location is that Kesh is at a one-hour drive from our house. This means lots of time is spent in the car. But those drives prove to be an ideal moment to bond with Ian. We have many valuable conversations, and we listen to music, both of us singing along, wiggling in our seats to the rhythm of the songs. It’s fun, fun that had somewhat gone missing.

Tonight Ian and I are picking up Kesh to drive her to a three-day competition. This means more than two hours in the car, and tons of material and a horse to load and unload. After a sleepless night following yesterday’s revelations, I don’t know where I will find the energy.

3/ July 8, 2020 – After

While driving home, I call my doctor to let him know he will receive a report from my medical exam at the end of the day. The busy bee is visiting patients, and I get his spouse on the phone. She is a nurse, and assists him in their practice. Him the curing realist, her the caring positivist. I cannot imagine a better team, that has helped us countless times as our little ones grew up. In tears, I explain to her the unfolding events. “I will try to book you an appointment at the hospital right away. And don’t dispair, breast cancer often can be cured.” she comforts me. “Let me get back to you later today.”

I burst into our house, into the arms of Aidan, and into yet another waterfall of tears. Our son Ian is at a horse competition with his friends. I’m grateful he isn’t at home. The emotions I feel are so overwhelming, I probably wouldn’t have been able to compose myself. Aidan prepares us a coffee and we sit down, unable to grasp what lays ahead of us. He took the rest of the day off and will drive to the seaside to pick up Lise. I cannot imagine spending those hours by myself in the house.

So I get into the passenger seat next to him. I always enjoy our rides together, a moment of calm and comfort to discuss whatever comes to mind. Traffic is horrible, the weather isn’t all that great either. “If those are our problems…” I think to myself. We discuss what to tell the children. As we don’t yet know the real story ourselves, we decide to wait, so not to upset them. My phone rings, it’s our doctor’s spouse, letting me know she booked me an appointment at the hospital on July 14. Six days to go, I don’t know how I will bridge those. “What about your visit to Star?” Aidan asks. “We can still go.” He’s right, at least let’s enjoy this part of the day. I text the stables where Star is boarded, letting them know we’ll arrive later than foreseen. Then I also text Lise we’ll be late, asking to excuse us with Hanne’s grandparents. I hope I’m not messing up their schedule, but I don’t have the energy to speak to them directly. I am facing a bigger problem than my dinner time being delayed. If they knew, I’m sure they’d understand. She answers right away: “No problem. How was your medical exam Beige?” Beige. She always calls me Beige, it’s part of her humor. I remember a waiter once raising his eyebrows, when the little girl at the table addressed me: “What are you having, Beige?” How does she remember to ask me about the medical exam? It was just a routine visit. She’s fourteen and with her friend at the beach. She is such a considerate girl, I love her so much. I text her back “I’m fine sweetie”. More tears.
We call my sister. She’s my best friend. Despite the physical distance between us since we have left the nest, we have always remained close. At a loss of words, she suggests we have dinner at their place. It will be quite a detour on our way back, but it will do us much good to see her. Ian will be at a barbecue till late, so we’ll pick him up at the end of the day.

Arriving at the stables, we greet the owner John as if this is just an ordinary day. I’m really glad we found him, because, like ourselves, he is genuinely kind to the horses. I rarely imposed myself on Star, rather trying to get her to do things based on winning her trust. As a result, she is a horse who didn’t have any bad experiences with humans. I hope this will be a solid base to further build on next year. As John leads us through the pastures, I can see Star from a long distance. She has grown again. I am stunned at her beauty and energy. She gallops towards us to greet us, and then sniffs our clothes. Even though I haven’t seen her in months, when I stretch out my arms towards her, she rests her head in them. We did this from a very young age. At that moment, there is no cancer, there’s just love.

When we park the car at the seaside, Lise and Hanne are already waiting for us, waving as we get out of the car. We greet them as if this is just an ordinary day. Walking towards the building, they enthusiastically talk about their adventures during the past couple of days.

We take the elevator up to the eighth floor. Stepping into the apartment, we greet Hanne’s grandparents as if this is just an ordinary day. I admire them. They are well into their seventies, and the teenage girls still look forward to staying with them. I express interest in whatever subject they bring up, hoping it is perceived as normal conversation. After half an hour, we take Lise’s bags, and say our goodbyes. I hope they didn’t find us rude to leave so quickly, even having refused a drink.

Back in the car, Lise starts talking. Aidan and I answer as lightly as we can manage. But she is mainly having a conversation by herself. One topic builds on the previous one, the world through the eyes of Lise. I’m so on the verge of tears. But I cannot do this to her. Not yet.

After more than an hour, we pull up in the driveway of my sister’s family. Lise’s two nephews are running to us, two happy boys. We give them a big cuddle as if this is just an ordinary day. Over dinner we are relieved to see the children engage in conversation, oblivious to us adults. Finally, finally, I find a moment to talk to my sister in private. Being the oldest sibling, I always considered it important for me to hold my ground. To be the one who can listen, and give a sensible advice. Not now, I don’t need to be strong.

We are just on our way home when Ian lets us know his barbecue has ended, and he’s mainly all by himself. We are still more than an hour out. I call our nanny, another happy-pretending moment as if this is just an ordinary day.  She is a sort of grandma to our children. I don’t know how we would have managed without her during the busiest years of our life. As always, she is so sweet to drop whatever it is she is doing to go pick up Ian.

And then the dusk of the day settles in. No more pretending, just the comfort of Aidan driving, my sweet Adrian. It will be a long and sleepless night, but for now, I enjoy the silence that embraces us.

2/ July 8, 2020 – Before

It is Wednesday. Our daughter Lise is at the seaside with her friend, Hanne, staying with Hanne’s grandparents. Last week, Hanne stayed with us at our place, two teenage girls enjoying the start of their summer vacation, without a care in the world. After the COVID quarantaine during the spring, it feels as if our life is resuming its cozy course. Not fully as we know it, because the virus is still circulating, but still.

The past couple of days have been quite intense: on July 1, I started a new job. I quit my previous job because, over the years, what the job offered drifted apart from what I value in life. I love thriving as part of a team, this rare blend of hard work and human joy. When in early January, my dearest friend Elisabeth told me they were seeking to hire, I didn’t hesitate and sent in my resume. Already during the job interviews, I felt a connection. After handing in my resignation letter, I couldn’t wait for it to be July 1. Since last week, every day I am being introduced to new colleagues. Despite them being digital phenomena on my screen, due to COVID-imposed home working, I’m fully comfortable that I have made the right choice. There seems to be a bonding between them, a collective consciousness that I have not felt for years.

I don’t work on Wednesday afternoons. This afternoon I have the annual check-up of my breasts, and then I will drive to the seaside to pick up Lise. It’s more than a two hour drive. I will take the opportunity to visit our horse Star, who is boarded close by. She was born two years ago, a most beautiful foal of Desert, our beloved mare. I took care of Star for the first nine months. It took patience to win her confidence. She had so much to learn, and so had I. Over the months, we evolved from she dragging me with her into the pasture in a cartoon-mode to us neatly walking together side by side. She has the great character of her mom. Seeing her grow up fulfilled me with joy. One more year and she will move back to us and we will start riding her, part two of the foal adventure. Visiting Star is always something I look forward to. I get to see her a only a couple of times a year, meaning I’m always curious to see how she has evolved. After visiting Star, I will drive to Hanne’s grandparents. No doubt we will lose track of time talking, much to the joy of the children. When the summer evening settles in, Lise and I will enjoy the ride back home. Lise is never at a loss for words. You cannot tell what you will talk about, but you know for sure that you will talk endlessly and that it will be most pleasant.

I park my car at the medical center, register and take a seat in the waiting area. I doesn’t take long before I’m called in. This is good, I will have loads of time to enjoy the afternoon. The doctor starts the medical exam, and we talk a bit. I have many cysts in my breasts, the reason why I cannot make sense of anything I feel when palpating them. I had felt a new lump recently, as I had felt many in previous years. As those have consistently been harmless, it hasn’t worried me. The doctor slides the sensor over my collection of cysts. “You can live to be a hundred with those.” she says. I gladly accept that statement. “So where is this new lump you felt?” she asks me. I point it out, and as she goes over it, I confirm that’s right where it is. “This is different though.” she says. I don’t panic, different from a cyst doesn’t mean cancer. I am quiet, so not to disturb her. At the end of a seemingly endless silence, she tells me more exams will be needed, but it probably is cancer. I’ll need a mammography, and a biopsy. The mammogram can be taken right away. I am lead into a different room. While undressing for the second time, I text my husband “Aidan!”. During the mammogram, in the dark comfort of the room, I am literally shaking and tears run down my cheeks. I cannot believe this is happening. The nurse feels sorry for me and offers me a coffee in their private corner to calm down before driving back. I sit down and call Aidan, who already sensed something was awfully wrong based on my text message. The doctor comes back in and I hang up. He calls me back, I miss the call, I call back in tears, I am in a state of shock. I decide I can’t sit here all day. I finish my coffee, walk out of the medical center and drive the car to the exit of the parking lot. Left is to the seaside, right is back home. I consider driving to the seaside. After all, there’s no absolute certainty it is cancer. But that means four hours of driving. I wisely turn right.

1/ December 5, 2020

Yesterday, I entered the second part of this winding road through chemo land.

But the journey started a while back. Before July 8, my life was one of careless joy. Joy for having found my true other half, now nineteen years ago. Joy when seeing our children grow up, embracing life. Professional joy for the expertise I have built over twenty years and that I am so passionate about. Joy for the horses we are grateful to own.

My husband and I muse that the world may really be ruled by horses. Their humans work hard to be able to continue to afford them. While they are off laboring, the horses get their boxes cleaned, and fresh food is served. They enjoy the pasture, and then go on to relax in their box. When their human appears after office hours, they are ready for a sweet ride and the inevitable treat that follows for horse-worthy behavior.

Problems… when a problem arose, I used to easily wave it: “If those are our problems, we don’t have any.” Now I have a problem. Blessed with a loving family, friends, and a capable oncologist, I have embarked on what mostly has been a journey of hope. Yet sometimes, when the harsh reality catches up with me, I feel utter frustration. Or worse, when there is a deviation from My Master Plan of Swift Recovery, desperation kicks in. As such, during those past months, I have lived through a roller coaster of strong emotions previously unknown to me.

You live your life as you live each day. I am profoundly convinced that we are the architects of our own happiness, no matter what. And the good moments in those past months have been numerous.

Too many women go through breast cancer treatment. We are all different: before learning we developed breast cancer, how we live through the treatment, and what we expect to find after. What works for me doesn’t work for everyone. But I would be honored if I could contribute to inspiring other women on their journey. As for me, writing my story, is part of my healing process.