You’ve Got to Have the Guts

You’ve Got to Have the Guts

Life after Childhood Cancer

Esther Radstaak

isbn 9789461851192 paperback

isbn 9789461851208 ebook

Original Dutch title: Je moet het durven

1st print november 2015

Design: Eric Jan van Dorp

Translation: Aviva Dassen, Karin Wouters, Jacob Gibbons

Cover photo: Irene Hoekstra

Published by Village, an imprint of VanDorp Publishers

Postbox 42

3956 ZR Leersum

The Netherlands

www.vandorp.net / info@vandorp.net

Copyright©2015 Village / VanDorp Publishers

Copyright©2015 Esther Radstaak

No part of this publication may be reproduced in any form without the express written permission of the publisher.

ESTHER RADSTAAK

YOU’VE GOT TO HAVE THE GUTS

Life after Childhood Cancer

VILLAGE

All revenues from this book will be donated to the

VOKK, the Dutch Association for Childhood Cancer

Foreword

As a television news reporter, I rarely experience a personal story that actually touches me. I speak to victims – people who were duped or discriminated against – on a regular basis, but normally I can shake it off quite easily. From a reporter’s perspective, it’s always nice to find a person who is actually involved in the story. That is how I met Esther; I had to report on the consequences of childhood cancer and a large national scientific study that was launched during that time. I visited Esther one afternoon in her house in Ede, and was greeted by a cute dog, delicious home- made cake, and a big garden.

Esther is a childhood cancer survivor, and she was introduced to me by her treatment specialist. I noticed straight away how tense she was, but I also saw her willpower to show herself to the outside world in both her vulnerability and strength. That is what truly struck me that afternoon. She was a person with a past, a very clear mission, and an unbelievable passion, who dared and wanted to share her story. Go ahead and try to do the same, exposing yourself in front of millions of people.

That afternoon, we both felt that we got along quite well. That is a big advantage when wanting to make a good documentary, but such chemistry is by no means a guarantee that everything would work out. After we were done, we both felt positive about the interview, and that is how we parted our ways. I phoned her the day after to express my admiration, and to ask for her response after seeing the broadcast. She was surprised, and immediately indicated that she wanted to write a book about it. In all honesty,

I had my reservations at the time. She kept in touch through text and told me about her progress. And here we are: that book is in your hands right now.

Beautifully written from the point of view of a twelve-year- old, and later when transformed into the perspective of an adult, this book is accessible and remarkably detailed. I don’t doubt for a second that her many years of therapy have contributed to the fact that she remembers so much from before, and that she is able to commit her story to paper.

In all honesty, I think everyone who has been through a traumatic experience will be able to relate to this book. It provides an insight in the experiences of a teenager who suffers from a horrible disease. Additionally, the role of the parents during the disease process is described poignantly and can be of great help to others.

Esther, many congratulations on finishing this accessible book. In your own words, you have indeed come full circle.

- Dutch TV reporter Theo Verbruggen

That Was Then

It seemed so idyllic. My husband Kees, our daughter Marloes, and I – we lived a good life together. We had a beautiful home, I liked my job, and we were spared any financial concern. An outsider would look at our family with envy, but what they could not see is that all of those jealousy-inspiring living conditions were lost on me. On the inside I felt like a zombie, and a deeply unhappy one. Every day I was faced with the sensation of looking at myself from a distance, and feeling like I had no say in what happened to me.

This also came with its physical repercussions. It became more and more difficult to eat, and, without choosing to, I started to lose weight. ‘You’re overworked,’ my mother told me, but I denied it violently. I knew what burnouts felt like. This was different, but I couldn’t quite put a finger on what exactly it was.

This estrangement of myself and the desire to escape it became so great that I wanted to die. After all I’d been through, after all those years of fighting, I knew I should be happy to be alive, but the truth was that I didn’t feel that way. At the most unexpected moments, bits and pieces of my oncological past continued to surface. It was as if the sick little girl of times past wanted to let me hear her voice sometimes.

When my scale indicated a meagre fifty kilos, I knew what I had to do. I sent an email to my previous oncologist, with whom I kept in touch, and told her that I wanted to move up my checkup. I knew I wasn’t doing well, but I couldn’t put into words what I was going through, let alone explain it to others.

I walked into the hospital with legs like jelly. This was the hospital where I used to be treated, and where I had a job at the time. I hoped not to run into people I knew, so I didn’t have to explain why I wasn’t at work. The door of my oncologist’s practice room was open, and when she saw me she motioned me to come inside. She seemed startled when she saw what was left of me and how skinny I was. I couldn’t do much more than stutter.

‘I’m at my wits’ end… I should be grateful to be alive, right? Then why am I bursting with guilt for still being here when others are not? I stole two years of my parents’ and sister’s lives, because everything revolved around me. Am I going insane?’

I hardly dared to look at her and nearly drowned in my own sorrow. The specialist’s response was unexpectedly fierce.

‘You’re not crazy at all. You really have got to stop trying to please others at your own expense. Your parents decided to have children, so they should be there for you, especially when you’re seriously ill. That is what parenthood is, you know. How could you possibly think that you are to blame for being sick for two years?’

I wasn’t used to her forcefulness, but it did me some good.

‘There’s another thing,’ she added. ‘I hope you’ve got the time today, because the psychologist of the children’s clinic is waiting on you. I forwarded your email to him straight away. I’ll skip the physical tests for now, since they’re not too important.’

That’s where our fixed ritual ended. When I was young, every time after sampling blood, the oncologist would draw a smiley face on the white plaster and made hairs out of the cotton ball under it. I was too old for that now.

In the waiting room, I seated myself amongst the young cancer patients. I used to be able to deal with this quite well, but on that day I couldn’t. Their sadness floored me, and the parents’ powerlessness was unbearable. The assistant at the desk saw me growing more upset, and guided me to an empty consultation room.

‘I’ll ask the psychologist if she can come in a bit sooner,’ she promised me, leaving me very thankful for her empathy.

It was Friday, June 11, 2004. The psychologist found the notes she took fourteen years ago. They were notes of a couple of conversations we’d had after my granddad passed away. She wasn’t surprised that I was back. One of the possible causes of my problems, she thought, was post-traumatic stress disorder.

At that time the extent of the term ‘PTSD’ was unfamiliar to me. The thing that mainly got through to me was that this woman, a professional, ensured me that the way I felt was perfectly normal, and that I’m not the only one to feel this way. Filled with hope, I wanted to make an appointment for a follow-up session, but I had to deal with a setback straight away. The psychologist is not a specialist in the field of EMDR (Eye Movement Desensitisation and Reprocessing, an effective treatment to process traumatic experiences), so she would not be able to give me the treatment I needed. She promised to find someone who would, but that meant that I had to completely bare my soul to a new psychologist. I hated that.

The psychologist was true to her word, though. A few weeks later, she sent me the phone number of a colleague of hers, who saw my post-traumatic stress issues as ‘a challenge’.

When I finally mustered the courage to pick up the phone, I found out that it wasn’t that easy to make an appointment. First of all, I had to have a referral from my GP. Then I had to wait until there was a place available.

‘But I received this phone number to make an appointment,’ I argued. ‘The psychologist ought to be aware of this.’

One night a couple of weeks later, when my husband and daughter dropped me off at Ed van der Leeuw’s house, the path to the front door seemed like a mile. Once inside and seated, my new psychologist first told me about himself, and then it was my turn.

My own behaviour surprised me, being able to put my worries and concerns into words at the speed of a waterfall. My life had lost its glory. I didn’t function, and I didn’t want to deal with it anymore. I couldn’t focus, had many headaches, and suffered from vertigo. I slept badly, and when I finally managed to fall asleep, nightmares would be waiting for me – nightmares filled with horrible details from the period in which I was hospitalised. I’d rather be invisible. Why should I have the right to live?

I even had the nerve to make a joke when I told him that sadness overwhelmed me, and that I was afraid to drown – even though I knew how to swim just fine.

Even though my days seemed like eternities, this hour flew by. The psychologist thought he could help me, and inquired whether I felt safe enough to try therapy with him. His closing question hit the bull’s eye: ‘Would you say you are currently surviving?’

I couldn’t do anything but to answer with a straightforward ‘yes’. I couldn’t guarantee, though, that I’d be able to keep on. Sometimes I just wished I’d get run over and get the rest I so longed for without being able to do anything about it.

My husband and daughter didn’t drive me to my second appointment with the therapist. Suddenly I was afraid to not be able to find the way on my own. Yet, I found it. As I told the therapist about the way I experienced my disease process – in an unstructured manner – the psychologist surprised me with a confronting question.

‘Did people shout at home when you were growing up?’

‘Shout?!’ I echo jokingly. ‘No, not at all. We never talked about our feelings. This stopped entirely when I got so sick, and you could see the worry on my parents’ faces. It didn’t even cross my mind to burden them with what was going on with me. I was willing to do anything for my parents so they wouldn’t feel sad. I didn’t even want to upset or worry my doctors.’

Not long after this conversation, I got a phone call that illustrated perfectly how communication between me and my parents worked.

‘Yes, hi. It’s your father. Don’t startle, but—‘

I felt the adrenaline surging through my body and I cramped up.

‘—We just got out of the hospital. I have rectal cancer. No metastases. They’re treating me with chemo tablets, and they will eventually start radiation.’

I knew what my dad was going through and tried to make him feel better.

‘That’s reasonably good news. If there aren’t any metastases and if there’s a possible treatment…’

‘Yeah.’

Silence on my end.

‘I’m hanging up now – I still have to call your sister.’

That was it. While I was still letting the news sink in, I thought to myself, ‘Could this be an opportunity to talk to my parents about the past?’

That hope vanished quickly, though, when my dad had to be admitted to the hospital to undergo heavy surgery. When I came to see him, he already had a catheter in, and there was another one in the packaging on the cabinet next to his bed.

‘Es,’ my mother called me by my nickname, ‘Have you seen a catheter before?’ She didn’t await my response, took the thing, and wanted to explain it to me.

I responded, surprised, ‘Do you really think that after all my abdominal surgeries I’ve never seen a catheter?’

‘Yes, but they’re adding a bit of water, and then the balloon fills itself. That’s how it keeps itself up in your bladder.’

‘I know how it works, Mum, and I also know how it feels when they’re trying to pull it out and forget to take out the liquid first.’

‘Oh, right,’ my mother said, and continued to make small talk.

A couple of months later, when my dad was readmitted to the hospital, it once again became obvious how parents and children can experience one and the same situation in completely different ways. As we were walking through the hallway, my mother and I were talking.

‘Do you understand, Es, that it isn’t all that great at home when someone is in the hospital? You were very jealous in the past, because you thought that we were having fun while you weren’t around. It really isn’t that way.’

‘I was a child, Mum!’ I retorted. ‘I was a very sick child.’

My mother raised me and my sister with the best intentions and with a lot of love. It must have been terribly sad not being able to do anything, standing next to the bed of your dying child. Yet too much concern can also be suffocating. My dad couldn’t be of much more comfort either.

‘Dad, how does it feel for you, a hospital bed and being hooked up to parenteral nutrition?’

He looked at me, but didn’t say anything. I kept trying, though.

‘I thought it was awful to be fed that way. That dependency on others…’

Then I did get a response.

‘Oh, Es, that was then. My disease is happening now.’

That’s all I got out of him. I tried on multiple accounts to strike up conversation about my childhood emotions, but the reactions were always the same: ‘We don’t have to talk about that anymore. That was then, this is now.’

I still dream about before, especially about the angiography I had. I shared this dream with my psychotherapist.

It was holiday season in the autumn of 1980. I woke up and looked around me. I wasn’t at home, nor in the hospital, yet I still felt a shrinking sensation. I repressed it and went back to sleep. Then I heard someone calling my name, and I actually awoke. My mother was standing next to me and told me to get dressed.

‘Why?’ I asked.

‘Listen carefully, Esther,’ my mother said solemnly. ‘We are going to the hospital for a blood vessel examination. We didn’t tell you because we didn’t want to get you worried, but we have to. I promise we won’t hide anything from you anymore. Do you hear me, Es? Never again.’

We were at the radiology department of the hospital within the hour. On our way there, we barely talked. Mum waited in the waiting room while the nurse came with me to the treatment room. I had to lie down, because the doctor was going to insert a cannula in my groin to make the contrast medium show up clearly in my veins. That’s how they were going to see if there were blood vessels in or around the tumour. I got local anaesthesia, but to me it felt as if it wasn’t working at all. I was in tremendous pain.

The nurse sat at my bed and let me hold her hand. She told me that I could squeeze it if I wanted to. I think I completely pulverised her hand, and I screamed when they took another attempt at stabbing at my artery. The nurse went to the toilet so often that I suspected something was wrong with her bladder. The doctors grew more and more frustrated and angry. They were wiping the blood from my groin and tried it for the umpteenth time. They told my mum that I was supposed to stay in the operation room for forty-five minutes, but it took hours. I wanted to walk away from the pain and from the angry faces. Eventually the doctors gave up, and the examination failed.

‘You have to stay here tonight,’ one of them told me. ‘We’ll try again tomorrow, this time through your feet.’

At the ward, my mum told me that the nurse was sent home in distress. She didn’t have to go to the bathroom at all; she just couldn’t bear to see me in so much pain.

The next day, I was put on a hard slab, which stood almost completely upright. The torture started again. In the waiting room, I could hear the people say, ‘Do you hear those screams? Sounds like they got somebody pretty bad!’

Every time I wake up from this dream, I feel physical pain, exactly the way I felt it during the examination I underwent as a child. It’s still weird to me, because I find it easy to talk about the entire period of sickness without getting emotional. When I tell that story, it’s about a different girl, not about me. But in my dream, I always experience the pain myself.

My mum still can’t talk about it. In order to help me tell my story, I asked her to send me her memories via email, but she stopped doing that halfway through the process.

One day my husband Kees asked me to get him some oatmeal to have for breakfast. The next morning, he heated the milk in the microwave. Upon hearing the beep, he poured the oats into the bowl, but when he started stirring something happened to me. Kees hadn’t even brought the spoon to his mouth before I ran out of the room, retching. I re-experienced the mornings when I was still sleep-drunk, and my mother gave me yoghurt loaded with Fantomalt and Profitar so I would get all my nutrients. When I eventually came back from the toilet, I turned on the TV until the kitchen was safe terrain once more.

When my husband, my daughter Marloes, or I get sick, even with a simple stomach flu, I start to feel stressed out and unfit to do anything.

‘I can’t see, hear, or smell nausea or vomiting,’ I confessed to Ed van der Leeuw. ‘If I have to vomit myself, I panic and the tears start rolling down my cheeks. I’d prefer to lock myself up, so nobody can see me.’ To my surprise, my psychotherapist told me that my extreme, irrational fear of vomiting has a name:

‘emetophobia’. I’m not alone in this one, either. There is an association for people who once became nauseated from fear and developed a phobia of nausea and vomiting as a result.

Naturally, I realised that the goal of psychotherapy sessions is to process repressed emotions. What I didn’t know, however, was that it can make you incredibly tired and cold.

After the session, I decided to heat up a little by taking a shower. I turned the knobs and undressed. The water was not quite warm enough, so I turned up the hot water more and more. Slowly but surely, my body temperature was getting back to normal.

‘Discover your own body,’ Ed told me, because I found intimacy very difficult. I felt immensely guilty towards my husband and daughter. What a waste of a wife I was to Kees, and how could I possibly be a good mother for Marloes? If I were gone, if I didn’t exist at all, they would be able to grieve and move on. That would be much better than to have me as an extra burden. Over and over again, I cursed that damned cancer for still having such a grasp on me after twenty years. My tears washed away with the water. I didn’t want to ‘discover my own body’ at all. The doctors did that for me, more than enough, and what they found was a malignant tumour. There were so many times where I had to take off my underwear for those intrusive internal examinations. I remained on the shower floor, sitting until my skin was all wrinkly. After I towel dried myself, I checked the mirror to make my hair look decent. Stupid hair – you should have seen it before my chemotherapy.

Cold Hands

The GP rubbed his hands together to make them a little less cold, but when he put them on my tummy, a pang of pain shot right through me.

Mum brought him in, because I was the only one in the family who kept throwing up after we had all caught the flu. I couldn’t eat anything – I couldn’t even stand up straight, because my body hurt that much.

The doctor knocked and pushed, and his face showed concern. I was allowed to get dressed again, and he walked downstairs with my mother to deliberate.

It was almost Easter. Accordingly, there was a chocolate hen with Easter eggs on my bedside table. I wished I felt like eating them.

When mum returned to me, she told me she had to take me to the hospital, and that it was possible that I’d have to stay there for a while. We purposely didn’t bring any clothes or toiletries. If they wanted to hospitalise me, I could at least go home to pick up my pyjamas and toothbrush.

We went to the Martini Hospital in the city of Groningen, where I was given a double room – just for me. But there was no way that I was allowed to leave even for the briefest moment. My room was close to the nursery, and the crying of those babies was harrowing. I pitied those little kids, being without their parents and all.

While Mum drove home to fill everyone in and get my things, I stared out the window from my bed. There was a cat chasing a seagull. Only moments later, I was laughing: the tables had turned, and the seagull started chasing the cat.

When Mum returned, we decorated the room a little to make it cosier. She stayed during some further tests, but then she really had to go. At the door, she turned to look at me and waved.

Evening turned to night, but I couldn’t sleep. I felt very sad, lonely, and my tummy hurt. They gave me a button to press if I needed anything. I had taken it in my hands a couple of times, but put it back each time. Then I decided to press anyway. Nervously, I looked towards the door, expecting a nurse to come in soon. Instead, the intercom creaked.

‘What’s the matter?’

Startled by the noise and a bit let down, I didn’t dare utter a word and instead dove under the sheets. Tears of disappointment started to roll down my cheeks. Even though I was twelve, it was my first night in a hospital. They could at least come to check up on me, couldn’t they?

Like our GP, the doctors in the hospital all had cold hands. They thought my tummy hurt because of an abscess, but just to be sure, they sent me to the Groningen University Medical Centre – a larger hospital in the city. My mum was allowed to ride with me in the ambulance, and Dad drove behind us. I had promised to wave to him while we were driving there, but the windows were so high that Mum had to wave for me. The ambulance seemed old and was rather creaky. I was very happy when we finally arrived. Meanwhile I felt weak as a kitten, not having been able to keep any food or drink inside. The nurses at my ward – ‘Older Children’ – kept encouraging me to eat, but I felt nauseated and full the whole time. Even pills for stomach aches and fever were difficult for me to swallow.

The nurses had to check up on what I consumed and what came out. They didn’t allow me to go to the toilet: I had to bedpan.

I did have to take it to the bathroom – but the thing was so heavy, and I was only twelve years old! I contemplated drinking even less, so I wouldn’t have to go to the toilet anymore. But no, I understood that it could be dangerous not to drink enough liquid. Thankfully, my mum was willing to carry the chamber pot for me during visiting hours, so I could conserve my strength.

‘I want to go home!’ I told my mother. ‘I want everything to be normal again.’

Her honest response upset me.

‘Es, they’re not talking about admittance for a couple of days, but more likely weeks. They’re going to perform surgery on you, so the doctor can determine what exactly is wrong with you. You’ll probably be staying here for about six weeks, so you’d be home halfway through May.’

Forthright as it may have been, the message was nevertheless destructive. I collapsed into her arms, crying. I had to stay in this room for six whole weeks!

A couple of days before my surgery, the weather outside was beautiful, and one of my nurses asked me if I wanted to go for a stroll. I refused. When my parents came to visit, they immediately asked me why I didn’t want to go outside. ‘I’d like to go outside with you,’ I responded, ‘but not with a nurse.’ A little later, the three of us walked past some surprised faces at the nurses’ desk.

On the day of the surgery itself, I was lucky to be the first person to be operated on. Afterwards I woke up in a different room, waiting for my mum and dad to arrive. When they eventually came, they told me that they’d been waiting for the hospital to call them, but they never called. Mum had already sat down on the sofa with a photo album of mine, crying, because she thought I wasn’t with them anymore. In the afternoon, they called the hospital themselves. It appeared that the doctor who was supposed to phone them had fallen ill, and that nobody had taken over his task.

An oncologist came in to explain what was wrong with me. His face – as well as my parents’ faces – betrayed his lack of good news. I thought I probably wasn’t allowed to go home.

I heard the word ‘cancer’, but the rest of it passed me by without really sinking in.

Later, after the first chemotherapy session, Professor Jan Aalders told me that the X-ray showed a massive lump in my belly. The lump had teeth, so it seemed. Also, my blood had an excess of some substance with a strange name, which had the doctors very worried.

When I was in surgery, the specialist discovered that the lump had grown out to reach quite a few organs. Such a lump is called a tumour. He had the tissue sample examined quickly in the lab, where they found that the tumour was riddled with malignant cells. I had cancer. The official word for it is ‘teratoma’, a tumour belonging to the group of germ cell tumours. It had attached itself to one of my ovaries.

Of course, I knew the word cancer. When it was pronounced at home, it was in a whisper and with an undertone of concern.

The doctor said he was unable to remove the cancer during surgery. It was the size of a big melon, which explained why my tummy was so big and painful. It would have to shrink before they could operate on me. To that end, I was to undergo chemotherapy. This would make me feel even worse than I already felt. He wanted to start treatment as soon as possible.

Resigned, I listened to the oncologist’s story. Would a man like him lie? He had full eyebrows behind thick, black glasses. The only thing I wanted was not to feel sick, and he told me he was going to make me even sicker. My mum and dad’s eyes glistened, and mum’s head nodded to the beat of the doctor’s words. I thought of a melon with little teeth.

Three days after my surgery, a nurse brought me to the treatment room. I lied there, shivering, until an attending physician had the time to install an IV drip. The cold remained, though, so they had to put my hands in a tub of hot water to open up my arteries a bit more.

‘Here it goes,’ the doctor said, and just when I started to wonder what was going, he injected the needle with a plastic casing under my skin. The nurse held my hand tightly so I wouldn’t be able to pull away as a reflex. A little bit of blood trickled through the needle, which meant that it was put in correctly. They pulled the needle out, so the plastic remained. It was taped to my hand with plasters.

Mum was there the next day, when I was getting hooked up to the chemo. Her face was washed out completely. As soon as the poison meant to shrink the melon trickled into my body, I started to throw up. Vomit left my body in big waves, and after every wave I collapsed back into my pillows. Would this really continue for five days? Nurses came walking to and fro with spittoons, feeling my wrist, taking my temperature, spraying with salt and chlorhexidine solutions to keep sores from developing in my mouth.

Visiting hours brought the necessary distraction. Long before the clock above my room’s door struck three, I followed its big hand with every minute that passed. And yes, it finally moved – Mum would be with me soon. I pricked up my ears to catch the sound of her heels in the hallway, or her nervous cough. Where could she be?

She finally arrived around half past four. She’d been driving circles on the parking terrain before she could find a spot. The mail she brought along every time showed me what was happening outside of hospital walls. The notice board above my bed became filled up more and more with cards. Neighbourhood kids bought six cards together, and sent me one every day – except for Sunday, when the post didn’t run.

My classmates wondered why the teacher told them I was doing fine when I wasn’t allowed to go home. Every day, one of them brought me notes from the school day in a notebook. On the weekend, Mum and Dad brought the notebook to the hospital, keeping me posted on their day-in day-out as well. Mum suggested that I could write about a day in the hospital as a surprise for them, but I didn’t share her enthusiasm. How could I possibly tell them about fun things in the hospital?

Mum set me up straight in bed, turned the bedside table so the table part was in front of me, opened the notebook on an empty page, and put a pen in my hand.

Well, great.

I stared straight ahead and avoided her gaze. Eventually I scribbled some stuff about an ordinary day for me at the hospital. I couldn’t bring myself to describe what actually happened to me, or how I felt about it all.

Every night, my dad phoned the ward to ask how I was doing. He often heard that I was homesick and that I wanted to go home very much. In the morning on the weekends, he was allowed to be with me for an extra hour, and I liked that. The nurses liked it too, because on weekend shifts they can always do with a couple of extra helping hands.

What actually happened to me was much less rosy. I lay in bed five days a week and felt deadly ill. That’s nothing to write about, right? After the five-day treatment I was allowed a short week to recover a bit, and then the second part of my chemo started, this time a series of injections. They made me less sick and I’d be able to focus on my surroundings.

Since a few days before, I’d had a roommate, one who loves good food. She wasn’t on chemo because she had heart problems. Seeing her beaming expression every time people came to visit and her parents and sisters unwrapped delicious treats they’d brought her was wonderful. Apparently that was also possible.

We were let into the central bathroom together. She had a shower, and I sat down in the walk-in bath, where my view consisted of stacks of nappies on top of the cupboards with towels. What did they mean, calling the ward ‘older children’? We laughed, splashed the water, and chatted a lot. Suddenly I found myself saying, ‘I think I’d like a bowl of custard’. My roommate didn’t hesitate for a second: she stepped out of the shower, wrapped a towel around her, and disappeared. A bit later, she returned holding a bowl of custard. ‘Eat!’ She dropped her towel and got back into the shower, as if nothing had happened.

The second chemo course required another IV drip. I knew what was going to happen that time, and I dreaded the days of nausea and hours of retching. It may have been because I was so tense, but the doctor had to poke around for some time before he found a vein, the sweat glistening on his forehead.

When the valves to the IV bottle opened and the stuff started to drip, it didn’t take long before I started to throw up. Because of the retching, I felt my feeding tube – which went through my nose into my stomach – come up. I pulled off the plaster on my nose, which was supposed to keep the tube in place, and threw it in a tray while I vomited. When the waves of nausea subsided, I pressed the button.

The attending nurse considered the entire situation, cleaned up the mess, and put three cups of yoghurt with syrup on my bedside table. Her face spoke volumes: ‘When I return, those cups will be empty.’

I felt very small and sad. How could anyone demand such a thing of me? Reluctantly, I attempt to finish a cup. But here we go, my stomach started to jolt and emptied itself almost immediately.

I didn’t push the button that time, but the nurse walked in and saw what happened. She disappeared without saying a word, and I took a sigh of relief.

The feeling of relief lasted only a couple of minutes. She returned with another filled cup in her hand, which she set down next to me demonstratively. This time, she did grace me with a couple of words: ‘Every time you throw up the contents, I’ll put down a new one.’

My parents found a timid little daughter when they came to visit.

‘What are those cups doing there?’ my mum asked me immediately.

‘I have to drink all three of them,’ I whispered.

‘Then just do it!’

‘I feel so sick…’

‘What does that matter? That’s what you have the spittoons for, right? Just hurry, so you get it over with soon.’

‘But Muuum, you don’t get it. The nurse will bring another cup, and she’ll keep doing it until I keep it in.’

In moments like these, my mum could be very tenacious.

‘Here, dad, take it and drink.’ My parents both gulped down an entire cup, and wiped their white yoghurt-moustaches from their upper lips with the backs of their hands. The third cup took me the whole day to finish, sip after sip.

I woke up feeling cheerful the next morning. It was the period between the five-day chemotherapy and the injections, and I felt reasonably okay during that period. Also, my grandma and grandpa came to visit on that day. I was looking forward to it, even though I worried about my granddad. He hated hospitals tremendously, and avoided them when he could. I counted down the hours impatiently. After lunch, we had an obligatory rest period, and I hated that. I didn’t want to go to sleep – I didn’t have that resting period at home either. Also, I wouldn’t be able to sleep anyway. I’d only stay awake, brooding. There was no escape, though. The curtains were all drawn closed, and the ward was silent for an hour.

After the rest hour I rose from my bed and glanced behind me at my pillow. It was covered with hair – my hair. First I let out a piercing scream, after which I burst out in tears. A nurse tried to console me, but that proved difficult. When I tried to smooth my hair, I found my hands filled with strands of my own hair. How would I have to face my grandparents? Before I was able to answer that question for myself, they were at my bed already. Their visible sadness about my despair cut straight through me.

‘Mum, those loose hairs start to knot on my head. The itch is driving me insane. Please, take scissors and cut it all off.’

‘First you have to finish your crackers with cheese. Else there’d be a lot of hair on them, and then you won’t eat them anymore.’

I knew my mother well enough to know that she was iron- fisted in these situations, so I reluctantly shoved the crackers in my mouth. There.

‘Now bring on the scissors.’

It was clear that my mother had immense difficulties cutting her daughter’s hair to the point of baldness. I pretended that there was a different girl who mourned the loss of her thick, shiny hair that had made her classmates so jealous.

My mother left a little tuft on the front of the girl’s head. Those hairs were still holding on.

The Flags Flew High

It was in the hospital that my fascination with the medical world started. In every ward, there were loads of people saving lives all day long. Sure, every once in a while there may be a shrew who forcefully compels a child to empty her cup, but they were probably convinced that it was for the child’s own good.

Yet, most doctors and nurses weren’t used to explaining difficult diagnoses and treatments to their child patients. Usually they talked to the parents, and asked them to answer their children’s questions.

In the University Medical Centre Groningen, I learned for the first time that the substance my blood carried too much of was called ‘alpha-1-fetoprotein’ – a protein normally produced in the liver and intestines of children before birth.

The pathological examination during my surgery showed that the tumour tissue they removed contained malignant germ cells. Those are the cells that become the gametes, for girls in the ovaries, and for boys in the testicles. In the Netherlands, gametes are found in approximately fifteen children per year, and I was one of them.

There was some unrest in the ward ‘Older Children’. Men in fancy suits were swarming through the building. The nursing staff was nervous and responded curtly to requests and comments.

‘What are all of those bigwigs doing here?’ my mum asked the nurse who came to take my temperature and check on my IV.

‘Budget cutbacks. They’re here to see if staff can be fired.’

The indignation was visible on her face, and she hurried along. Later that afternoon, the nurse freed up some time to explain to us that the hospital board ran an examination to see if the same work can be executed by fewer people. Healthcare costs were rising, and the simplest solution is to save money by cutting salaries.

As she told me this, her colleague coughed dramatically to warn that the ‘dull suits’ were about to show up. The nurse startled and dove behind and nearly under my bed. When the coast was clear, we laughed about the incident. But it left a strong impression on me – a grown woman had to hide to make sure it wasn’t discovered that she had time to talk to a patient and her visitors.

It was 14 May, 1980. The day after, exactly six weeks after my admittance, I was allowed to go home. I still had to go through chemo to shrink the tumour; to do this I had to be admitted for a few days at a time in the middle of the week. The injections I’d be receiving were administered by the polyclinic. I also had to gain some strength before undergoing another surgery later in the year. In anticipation of the operation, I was allowed to try get back to normal life – as far as my lack of energy and nearly bald head would let me.

I was bouncing excitedly on my hospital bed and found myself swaying between ecstasy and nervousness. Would my bed still be in my room? And would the hen with Easter eggs still be on my bedside table? Suddenly I found it all-important that everything still looked the same as when I’d had to evacuate my familiar environment so abruptly. Surely they weren’t mistaken – surely it wasn’t another person that was allowed to go home while I had to stay?

I was frightened when the nurse came into my room, followed by my parents. None of them bore the cheerful looks I had expected given my pending homecoming. Why weren’t they as happy as I was?

‘Esther,’ the nurse said, ‘I am going to take you off the parenteral nutrition now, but then you’ll have to try to put it back in. That is the condition for you to go home again.’

I looked at my mum and dad in despair. They shrugged at me apologetically – clearly, it wasn’t their idea. The nurse loosened the plaster on my nose and her look implied the question. I nodded. In one swift movement, she pulled the tube up out of my stomach, through my esophagus and throat, and out through my nose. I started to retch and tried to suppress the urge to vomit by coughing it away. Next it was time for me to try. I tried three or four times, but each time I couldn’t get the tube further than my nose, and I already started to retch. My parents tried it, but were also unable to do it. Eventually we grew hopeless, and Mum ended the torment.

‘Nurse, if Es spits out the tube, we’ll return to the hospital. We live so close by, it won’t be any trouble.’ The nurse agreed to the proposition.

When home, I entered the living room first. It was small and the ceiling was low compared to the hospital room. I was as surprised during the drive home – I didn’t remember the meadows were that green.

My sister Marion, my junior by almost four years, looked at me expectantly. We would be able to take baths on Sunday evenings again, but we wouldn’t be able to play hairdresser like we did before. She was glad I was home again. Marion wasn’t allowed to come to the hospital, because visitors for the children’s ward had to be older than fourteen.

My grandparents lived in Helpman, a district in Groningen, and came to visit after a short trip to Haren, where we lived at the time. My mother made her world-famous apple pie the day before, but that was for the others, not for me. Chemo had affected the mucous membranes in my entire digestive system, starting with my mouth, in such a way that I could hardly get any solid food in.

A couple of days after my homecoming, the parenteral nutrition made me so nauseated that I had to throw up. While doing so, I noticed that the tube also started to come up. That meant that I had to go back to the hospital… I already grew nervous just thinking about having the tube inserted another time.

‘Mum,’ I proposed when my stomach had settled a little, ‘from this point on I will drink that foul concoction from a glass. I don’t want a tube in my nose anymore. Didn’t you see the looks on people’s faces when we were buying groceries? And then I won’t need to lie in bed at any specific times to be fed through that thing. I want to go to bed when I’m tired.’

‘As long as you get your nutrients,’ my mother agreed.

Mum took two glasses from the cupboard. She filled one with tube-food fluid and the other with 7Up. I pinched my nose hard and poured the contents of the first glass down my throat in one breath. Immediately afterwards I washed away the taste with the fizzy drink, crossing my fingers in the hope that it wouldn’t come back up.

I had to return to the hospital all the same. We made an appointment at the polyclinic for another chemo session. Usually I had to throw up immediately from the stress, and that day was no different. To break the tension, Mum and I pretended to be drunk. We stumbled across the parking lot to the polyclinic.

‘Where is your tube?’ was the first thing the nurse asked. I explained how I ingested it all, and they put me on the scale straight away. A surprise awaited us all: I’d gained nine hundred grams!

Everybody rejoiced, and as a reward I got to go to the dietician, who made a schedule for me to get through the day, small portions of food at a time. I was all set from six in the morning till eleven at night, and so was my mother – who had to prepare my food. Food was plated before me in the tiniest portions. I had to have fifteen cocktail nuts at eleven, two pieces of cheese at twelve, et cetera, and that’s how I got through the entire day.

The blood test results were fine, so the same chemo rubbish could be injected once more. Mum drove home as soon as she could – we managed to get home before the vomiting started. A couple of days later, my mouth was full of sores again.

When I was admitted to the hospital in the spring, I was in the sixth grade. I had two more months to pass before the school year ended and I was supposed to start secondary school. I managed to get the energy to go to school a couple of days a week. My classmates were very busy rehearsing for the recital they’d sing at the end-of-year musical. I stood there and watched them, unable to participate, and that saddened me. The whole day, everybody in the school could hear the girls whoop, ‘Simon Tahamata, yeah, yeah, yeah.’ I didn’t know who he was, and I didn’t dare ask either.

I spent a lot of time in the tub, because the warm water made the pain in my body much more bearable – the hotter the water, the better. I watched the way the water crawled up over my skin. First it washed up over my flat tummy, then my legs, and eventually the water covered my growing breasts. I turned the tap and cut off the water flow, because the contents of the boiler in the attic were limited. If I stopped now, I could go again a bit later. It took hours for the boiler to fill up again with hot water.

I kept my wig in the closet in my room upstairs. We’d already had it measured and fit before my hair started to fall out and my mum trimmed it. It was made of nice material that looked like my own hair, but so far I’d only worn it to try it on. I wore a bandana all throughout summer, so the little tuft of hair – impossible to get rid of – came out from under it as if it were fringe. It almost seemed as if I didn’t have cancer.

One day I was in the bathroom, drying off my feet. I didn’t notice that my mum snuck up on me from behind. When I stood upright, she pulled the wig over my head in one movement, and in the mirror I saw the new Esther. I quite liked what I saw. The hair tickled on my bare shoulders, and I rather enjoyed the feel of it. Let the surgery come quickly, I thought, so I could get to my new school and start a new phase in my life.

Back in the hospital – at the nurse’s request – I visited someone my age, who would grow bald soon due to the chemo. I showed her how cool you could look with a wig on.

‘Judging from the scans, it seems as if the tumour has shrunk,’ the gynaecologist explained, ‘but we think it may have fused with one of the most important blood vessels in your abdomen. I deliberated with the surgeon, and we agreed to administer some more chemo sessions in the hope of making the operation more likely to succeed.’

Postponed – again. This meant that I had to go to the hospital a couple of more times, where the scent of roasted coffee only enhanced my nausea.

Outside, the sun was up high, and the sky was clear blue. I wasn’t interested at all. I didn’t get out of my parents’ double bed for days and didn’t want the curtains opened. I barely drank and I stopped eating. Every gulp came out as three times as much. Where did it all come from?

My parents witnessed this and let it be for a couple of days, but then decided to ask the oncologists for advice.

‘No!’ I protested, ‘They’ll stick me back in the ward again!’ Mum and Dad promised that they wouldn’t let me be admitted, but they couldn’t keep their promise. When dad carried me in his arms and we entered the hospital again, I was hooked up to an IV drip straight away. I felt betrayed by my parents and the doctors.

By the time I gained some strength, school was already three weeks in. Luckily I was in the same grade as some of my classmates from primary school, so I didn’t have to explain anything to them. On my first day, I was ambushed with a written exam. I only barely failed the test, without ever having been taught English, so I was quite proud of that.

During the autumn holiday, Mum unexpectedly took me to the radiology departmentfor a blood test that would answer the question of when I could finally undergo surgery.

That particular examination became one of my life’s worst nightmares. Every time they attempted to insert the cannula and failed, the radiologist became more and more disgruntled, wiping my groin clean more roughly. Suddenly a spurt of blood shot out: well, at least they’d found the artery! Before they could inject the contrast medium, the needle darted out and he had to start all over again. After three hours, the team gave up. They must have been angry with themselves, but they snapped at me.

The next day they would try to inject the fluid through my foot.

The slab on which they tied me looked like the operation table I had in my Playmobil set. I couldn’t be tough, though. It hurt so much, it seemed as if the needle went straight into my bones. Just like when my mum had cut my hair, I imagined another girl being tortured – not me. I heard her scream, but thank God it wasn’t me.

After the procedure, I stumbled towards my mum. My sandals couldn’t close anymore, because my feet were too swollen. Mum heard me during the whole thing. She motioned me to pick up my card from the desk, because she didn’t have the strength to do it herself. I felt deeply ashamed. What was I doing to her?

The surgery dream kept recurring. Both my sister and I had tumours in our bellies, and we were given the task of spitting it out. Marion succeeded, but regardless of how often I tried, it would just stay stuck. I shot up straight in my bed and couldn’t fall asleep again.

Mum and Dad contacted the oncologists as they worried about me more and more. They got a phone call during Marion’s birthday party. To our relief, we were given a date for the surgery:

20 November, 1980. I’d been preparing for this for months and almost longed for it by now. Yet, when the time had actually come, I was anaesthetised for the surgery, and the gynaecologist had to tell me what he’d done afterwards.

‘The surgeon and I saw a tumour of about eight centimetres in size, Esther. This means that it had shrunk to almost half of its original size. It was stuck to your bladder, intestines, and womb, but we managed to separate it from those. We removed your right ovary with the rest of the tumour, as well as your appendix. Your left ovary and womb looked fine, which my colleague told your mother directly after the surgery. We were overjoyed that we were able to keep those organs intact. That was our intention from day one: we want to make you better without taking away the possibility for you to have children. Congratulations, we made it!’

I was visited by my history teacher the week following my operation. I thought it was very kind of him, but I told him in all honesty that I’m not really interested in his topic of expertise. During the period of my illness, I figured out what I wanted to be when I grew up: a nurse at a children’s ward. The teacher crushed that plan right after I told him. His partner was studying to become a nurse, and she shared the pain of every disease she came across.

‘Don’t do it, Es,’ he advised. ‘It will make you very unhappy.’ I actually believed him.

When I was allowed to go home, I could finally get excited for December. We’d celebrate Christmas and New Year’s, which we usually spent with family. Plus, my birthday was at the end of the month.

I was expected in the hospital halfway through December to undergo one more chemo session. ‘Just to be safe,’ the oncologists said, but that security lasted only a short while. One afternoon, my mum picked up the phone and I saw her age ten years in only a second. When she put down the phone, she told me what she’d heard in a stifled tone.

‘Es, according to the pathologist, there were live tumour cells in the tissue they removed. They decided that you’d need more than one treatment. In fact, they’ve determined that you need to undergo them for another year. You’ll be admitted for three days every six weeks.’

That prospect loomed over me like a dark cloud during the holiday season. During Christmas I got my very first period, and asked my mother for a flag. The girls in school always talk about ‘a red flag that needs to fly’ or whatever.

My parents saw my menstruation as the proof that I remained a ‘complete woman’. They wanted to celebrate, but I didn’t see the fun of that.

On New Year’s Eve, I found myself able to wish my mum, dad, and sister a happy 1981. Mum wanted to visit the neighbours for a bit, like we do every year, but I couldn’t.

‘I know what the new year has in store for me,’ I explained,

‘and that’s not exactly a happy new year.’ They understood.