At eighty my stomach grew so large my family got frightened. The scan found something — and then a twelve-year-old record with my late husband's name on it, and a folder called PROJECT AGNES.
PART 1
"Mrs. Vanterpool. Have you ever been seen through a private research facility?"
A consultant asked me that across a desk at Ardenne General, with a folder open in front of her, on the worst afternoon I have had since 2014.
My name is Agnes Vanterpool. Everybody has called me Aggie since about 1952.
I am eighty years old. Three children, seven grandchildren, four great-grandchildren, and a house on Fennimore Street that I have been in since 1971.
I thought there was very little left that was going to take me by surprise.
My husband Rutger died in the November of 2014. He was seventy-six. We had been married fifty years and two months.
After he went I stayed in that house, because everybody told me to sell it and I am contrary.
And for eleven years I had a perfectly good life. My daughter-in-law Soraya rings on Wednesdays. Dov comes on Sundays. The woman next door takes my bins out.
And then about six months ago, something started happening to me.
At first it was just that my waistband was tighter. I am eighty. I put it where you put everything at eighty.
Then my good trousers would not do up at all. Then none of them would.
By about the August I had gone over entirely to loose dresses, because my middle had got noticeably bigger and nothing else would go round it.
And by the autumn I could not bend down to the bottom oven shelf, and I could not sit comfortably in my own armchair, and I was sleeping propped on four pillows.
I told myself it was my age about four hundred times.
And then on a Sunday in the October, Soraya said something.
She is fifty-two and she has been married to my Dov since 1998 and she has never once in those years asked me a direct question about my body.
"Aggie. Can I ask you something?"
"Go on, love."
And she looked at my middle and did not pretend she was not looking at it.
"Have you talked to anybody about that?"
I laughed at her. "Soraya, I'm eighty. Nothing's where it was."
And that woman did not laugh back, which stopped me.
"Please get it looked at."
I said I would. I did not.
Three nights after that I woke up at about two in the morning with a pressure in my middle that I had never had before.
And then something moved.
That is the only way I can put it. There was a shift, and then a sort of settling, and then a fullness that made it impossible to get comfortable on any side.
I put my hand flat on my stomach.
And it moved again. Under my own hand, through my own nightdress.
I lay in that bed in the dark at eighty years of age and I was properly frightened for the first time since my sister Noemi.
In the morning I rang my youngest.
"Mum? What's happened?"
"Dov. Could you run me up to the hospital? I think it's time I found out what this is."
He was at my door in nineteen minutes.
And when I opened that door and he saw me standing in my own hall in a dressing gown, I watched my fifty-six-year-old son's face do something he did not manage to get hold of in time.
"Mum. Why didn't you tell me it had got like this?"
"I didn't want anybody making a fuss."
And he put his hand on my shoulder and said: "That's the entire job, Mum."
At Ardenne General I was seen by a consultant called Dr. Henrike Opoku.
She is about forty-seven.
She took a full history. She examined me properly and told me what she was doing before she did it.
And she did not once, in forty minutes, talk to my son over the top of my head — which I noticed at the time and which I have since told her I noticed.
And she sent me for an ultrasound.
The woman doing it went quiet.
She moved that probe about four times and then went back over the same area. Then she took a run of images I could hear her saving.
And then she said she was going to get the doctor, and went out, and was gone about eleven minutes.
I looked at Dov.
"Is it bad?"
"Let's hear what she says, Mum."
Dr. Opoku came back with a second doctor.
"Mrs. Vanterpool. There's a large fluid-filled mass in your abdomen."
I made myself say the next bit.
"How large?"
"Large. We'll need a CT before I'll give you a number."
"Is that what's been pressing?"
"Almost certainly, yes."
Two hours later the three of us were in her office with the CT done.
And she told me what it was, and I am going to put that in the next part because of the order it came in.
Because then she opened a different folder. A thinner one. And she asked me a question that had nothing to do with my stomach.
"Mrs. Vanterpool. Have you ever been seen through a private research facility?"
"Not that I know of."
"There's an archived reference in your record. It's attached to something called Kastellis Biomedical."
And I sat up in that chair.
"Kastellis?"
"Yes. Does that mean anything?"
And I turned and looked at my son.
Because for twelve years I had kept one thing to myself and never said it out loud to a living soul.
Three days before my husband died, a woman came onto that ward.
Mid-sixties, grey, a small silver case. She asked for Rutger by name at the nurses' station and she knew exactly which bay he was in.
She was in there about twenty minutes with the curtain pulled round the bed.
And I sat on a plastic chair in that corridor and did not think one suspicious thing about it, because I was sixty-eight years old and my husband was dying and I had other things on.
And when I went back in, my husband was upset in a way I had not seen in fifty years of marriage.
He took my hand and said: "Aggie. If you ever have a question about what I did for work — the name is Evanthia Kastellis."
And I thought it was an old man worrying about paperwork.
So in that office, eleven years later, I said that name out loud.
And Dov's whole face changed.
"Mum. Did you just say Kastellis?"
"Yes. Why?"
He was staring at that folder on the desk.
"Because Dad worked with her."
"Dov, your father sold insurance for forty years. What would he be doing with a medical researcher?"
And my son looked down at his own hands.
"Mum. There's something I've never told you."
"What?"
"After Dad died, I found a safe in the basement. Behind the shelving."
I did not say anything.
"There were contracts in it. Research papers. Four or five medical files."
"And?"
And Dov Vanterpool said: "One of them had your name across the front of it, Mum."
"What did it say?"
"PROJECT AGNES."
And nobody in that room said anything for about four seconds.
And then I remembered the envelope.
Rutger gave me a sealed envelope in the October of 2014. Cream, about the size of a card, with nothing written on the front.
He made me promise not to open it unless something happened that I could not explain.
It has been in the drawer of my bedside table for twelve years.
"Dov. I need you to go to the house and bring me something."
"What is it?"
"A letter your father left me."
"What letter?"
And I said: "The one I promised not to open unless something happened I couldn't explain."
PART 2
The mass is a mucinous cystadenoma.
I had to have that written down for me on a piece of paper before I could say it to anybody.
It is an ovarian cyst. A benign one.
It is not cancer. It never was cancer. The pathology after the operation confirmed every bit of that and Dr. Opoku made me say it back to her twice before she would leave the room.
I am putting that in the second paragraph on purpose, because I know four people who will not read past the first page and I would rather they had it.
What it is, is enormous.
On the CT it measured thirty-eight centimeters across.
When they took it out at the end of January it weighed twenty-one point four kilograms.
Forty-seven pounds. I have had to say that number to about eleven people and every single one of them has asked me to say it again.
The surgeon told me afterward, sitting on the end of that bed, that he has seen four of them in a twenty-two-year career.
And that mine was the second largest of the four.
I am eighty years old and I had been carrying twenty-one kilograms of fluid around that house for about eighteen months.
Up and down those stairs. Out to the bins. To church on a Sunday.
The fluttering in the night was fluid moving.
That is all it ever was. It shifts when you turn over in bed and then it settles again, and it feels like nothing else on earth, and it is completely harmless.
I had spent three weeks lying awake at two in the morning with my hand on my own stomach being frightened of a thing that was just liquid finding its level.
Those things grow slowly. That is their entire character and it is the reason they get to that size.
Nothing hurts. Nothing bleeds. Nothing happens suddenly enough to make anybody do anything about it.
Dr. Opoku was extremely careful with me about this part, and I made that woman say all of it twice, and the second time I had Dov in the room.
If that thing had been found at four or five centimeters, it is a straightforward day case.
In at eight, home by six. A week taking it easy. A scar you would need telling about.
At thirty-eight centimeters, at eighty years of age, it was four hours of surgery, a vertical incision from the breastbone down, and nine days on a ward.
It was found. I am all right.
I want that said plainly before anything else, because I have a great-granddaughter who is four and who is going to read this one day.
But there is a question sitting underneath it, which Dr. Opoku asked me gently and which is the entire reason any of the rest came out.
She said: "Mrs. Vanterpool. When was your last abdominal imaging?"
And I said I had not had any.
And that woman looked back down at the thin folder on her desk.
And said that according to what was in front of her, I had eleven of them. Between the March of 2002 and the November of 2013.
One a year, for eleven years, at a facility in Marren.
PART 3
Dov brought that envelope up to the ward on the Thursday afternoon.
He had it in his inside pocket and he would not hand it over until he had got a chair and sat down next to the bed.
Twelve years in the drawer of a bedside table. Under a lamp I have changed the bulb in about forty times.
Four inches from my own head, every night, for four thousand three hundred nights.
It is one page. Both sides.
My husband's handwriting, which was never good and which had got considerably worse by the October of 2014.
I am going to put the whole of it here because the family have discussed it and because there is nothing in it that is anybody's business but ours, and I would rather set it out than have it summarised by somebody else.
Aggie.
If you're reading this then something has happened that you can't explain, which is what I said, so I'll take it that you've kept your word.
The clinic you've been going to every year since Noemi — the one you think is through my work — isn't through my work.
It's a study. Dr. Evanthia Kastellis runs it out of Marren. You're a participant. You have been since the March of 2002.
I signed you onto it. I did it without telling you and I've had eleven years to feel about it however I was going to feel about it.
The reason is Noemi. You know the reason.
It's paid for to 2034. All of it, up front, in 2013. You don't owe anybody anything and nobody is going to send you a bill.
They will write to you every year. The letter comes in February. It looks like nothing. Don't put it in the bin.
Go to the appointment, Aggie. Every year. That's the whole of what I'm asking.
R.
My sister Noemi died in the February of 2001.
She was fifty-eight years old.
It was ovarian, and by the time anybody knew anything about it there was not a great deal that could be done for her, and it took eleven weeks from the first scan to the funeral.
I was fifty-five.
I did not cope with it well and I am not going to write about 2001 on this page. Rutger was the one who got me through it and he never once mentioned that afterward.
And then in March of 2002 — thirteen months after we buried my sister — my husband came in from work on an ordinary Tuesday and told me that his firm had put an annual health check into the benefits package.
Once a year. At a clinic off the Belgrave road in Marren. A car would come and fetch me and bring me back.
He made a joke about it. Something about the company finally doing something useful.
I remember being pleased. I remember being slightly smug about it.
And I remember standing in the porch of that church and telling four separate women that insurance companies were not all bad.
I went every year for eleven years.
A perfectly nice building with a car park and a coffee machine.
A blood test. Blood pressure. And a scan of my middle that took about twenty minutes, in a dim room, with a young woman who did not say anything.
I used to find it boring. I used to take a book.
Nobody ever told me anything was wrong because nothing ever was.
And that is exactly what a longitudinal cohort study looks like from the inside. It looks like nothing at all happening, every year, for eleven years.
Rutger did not sell me to anybody.
He was not doing research on his own wife. There was no experiment and there was nothing in that silver case except paperwork.
That is the thing my son has had in his head since the December of 2014, and I will come to it, and it is the worst part of this for me.
What my husband actually did, starting in about the April of 2001, is what a man who has sold insurance for forty years does with grief.
He did not cry at me. He did not talk about Noemi. He went and got a pad of paper.
He read about it.
Properly. For about nine months, at that kitchen table, after I had gone up. The way that man read about everything, including the boiler and including the car.
And he worked out two things.
One. That there was no screening program available to a fifty-five-year-old woman in this county in 2002 for the thing that had taken her sister. None. Not privately and not otherwise.
Two. That there was a longitudinal study being run out of Marren that needed four hundred women of exactly her age and exactly her family history.
That it imaged every participant annually for twenty years.
And that participation cost a figure that a man who sold insurance for a living could find, if he did not mention it to his wife.
I have met Dr. Kastellis since.
She is seventy-four now. She came out to that house in March, on her own, with a box file on the passenger seat, and she stayed four hours.
And she told me the one thing I had not worked out on my own, which is that my enrollment was entirely legitimate from the first day.
Nobody forged anything. Nobody enrolled me behind my back.
I signed that consent myself.
The fourteenth of March, 2002. Four pages. My signature is on the bottom of the fourth one in blue.
Dr. Kastellis brought me a copy of it and put it on my own kitchen table and let me look at it for as long as I wanted.
Rutger told me it was the paperwork for the firm's health scheme and I signed it standing up at the kitchen counter without reading a word of it, because he was my husband and because he did the paperwork.
That is the only thing my husband actually did wrong in twelve years of any of this.
He let his wife sign four pages she had not read.
And then in the October of 2014, three days before he died, he had Evanthia Kastellis come onto a ward with a silver case —
to put her signature on the papers that kept it funded after he was gone.
That is what had him upset in that bed with the curtain round.
Not a guilty secret. Not something he was confessing.
A man of seventy-six, three days off the end, signing the papers that made certain a thing he had set up in 2002 would go on working for twenty years after he was gone.
PART 4
Now mine.
They will write to you every year. The letter comes in February. It looks like nothing. Don't put it in the bin.
Eleven letters came to that house between the February of 2015 and the February of this year.
I threw away every single one of them.
Not angrily. Not deliberately. I did not sit down and decide to ignore my husband's instruction.
I binned them the way anybody bins anything that arrives in a window envelope from an organization they have never heard of.
Picked it off the mat. Looked at the front. In the recycling box on the back step before I had got to the kitchen.
And here is the part that I have had to say out loud to a woman in an office on Tuesdays before I could write it down.
For about four years after Rutger died, I could not open post with his name near it.
Anything that looked like it had come out of his working life went straight in.
Renewals. Statements. Anything from a firm with a name I half recognized. Anything with a reference number on the front.
Not one of those envelopes got opened in this house between the November of 2014 and about the summer of 2018.
I am not going to dress that up as something better than it was.
I was seventy going on seventy-one, I had been married to that man for fifty years and two months, and I could not lift the flap on an envelope with his world inside it.
That is all of it. That is the whole reason.
And a letter from Kastellis Biomedical, in a window envelope, with a reference number on it, looks exactly like the four hundred other things I was binning.
Eleven years. Eleven Februaries. Eleven envelopes off the same mat.
And the entire time, upstairs in a bedside drawer — about eleven feet, as the crow flies, from the mat those letters were landing on —
there was a cream envelope in my husband's own handwriting with four lines in it telling me exactly what they were and exactly what to do about them.
I did not open it because I had promised not to, and because nothing had happened that I could not explain.
That is the sentence that finishes me, and I want to set it down properly rather than let somebody else summarize it.
Unless something happens that you can't explain.
In the spring of 2019 my left knee went and I could not get up those stairs for a fortnight.
I explained that one in about four seconds. I was seventy-three.
In 2021 I lost about four kilograms without doing anything at all about it.
I explained that as well. I had been off my food since a bad winter and I had not been bothering to cook properly for one.
In 2023 my waistband went and I bought two sizes up at the place on Carrow Street.
I explained that in the changing room, out loud, to myself. I was seventy-seven. Everybody's does.
In the August of this year I stopped being able to reach the bottom oven shelf, and I explained that to myself in the kitchen, out loud, on my own.
Four times in seven years.
Four separate opportunities to stand in my own kitchen and decide that something was happening to me that I could not account for.
And every single time, I found one.
Because the alternative was reaching into that drawer, taking out a cream envelope, and opening a letter my husband had written specifically for the worst day of my life.
I knew what that envelope was for. He told me what it was for when he handed it to me.
I did not want the day that envelope was written for to be today.
Not in 2019, not in 2021, not in 2023, and not in the August of this year standing in front of an oven.
So I made absolutely certain that it never was.
Dr. Opoku has been extremely good about this and she has said the thing a doctor says, which is that we cannot know what any particular scan would have shown.
That is true and I have written it down because she asked me to.
But a study that had imaged my abdomen every single year since 2002 would have been imaging it in the February of 2019. And again in 2020. And in 2021, and 2022, and 2023.
And in 2019, on the best estimate anybody has given me, that thing was about five centimetres.
And there is one more.
My son found PROJECT AGNES in a safe in my basement in the December of 2014.
And he put it back. He shut the door on it and spun the dial and went upstairs.
He has told me why and I am not going to put the whole of what went through his head on a page that his own children will read.
He was thirty-eight days into losing his father. He was on his knees behind the shelving in a basement.
And he found his mother's name written across the front of a folder of medical records inside a locked safe.
His mind did what anybody's mind does with that.
He thought his father had been doing something to me.
For twelve years, Dov Vanterpool has believed his own father was a dishonest man.
He never asked me about it, because asking would have meant telling me.
He never asked Kastellis, because he did not want to know.
So my son carried that on his own. For twelve years.
Every Sunday afternoon in my front room, with a cup of tea, talking about the garden.
And then he had to sit in a hospital corridor at fifty-six years of age and find out that the folder he put back in 2014 was eleven years of a man quietly trying to keep his wife alive.
PART 5
They took it out on the twenty-ninth of January.
Four hours in theatre. Nine days on a ward.
I had a tube in me for four of those days that I am not going to describe to anybody, and a nurse called Bettina who got me out of that bed on day two when I did not want to go.
The pathology came back clear on the eleventh of February.
Dr. Opoku rang that house herself to tell me, at about six in the evening, which she did not have to do and which somebody in an office would normally have done four days later in a letter.
I am eighty years old and I have a scar that runs from my breastbone to my pelvis.
I have shown it to four separate people, including the woman next door, who asked.
I can bend down to the bottom oven shelf. I did that on the second of March and I had to sit down on the kitchen floor afterward, and not because of the knee.
The study is still live. I am still in it. It is funded to 2034 exactly as he said.
Evanthia Kastellis has been out to that house twice now.
She is seventy-four. She drives herself, badly. She is not a warm woman and she does not try to be one, and I like her enormously.
She told me, the second time, something I did not ask about.
She told me that my husband wrote to that office eleven times between 2002 and 2013.
Every single year. Always in the fortnight after my appointment. Always the same four questions about the results.
And that they could not tell him one thing.
Not a word. Because he was not the participant, because that is not how any of it works, and because a study that handed results to husbands would not be a study.
He knew that. They told him in 2002 and he wrote again in 2003 anyway.
Eleven years running. The same four questions. Typed, on his own firm's paper, every year.
She said: "He knew we couldn't answer. He did it so there would be a record that somebody had asked."
Dov and I have talked about the safe twice.
The first was in that hospital on the Friday and it did not go well at all.
Both of us said things. I said one thing to my son that I have apologized for twice and will probably apologize for again.
The second was at my table in the April and it went better, and at the end of it my son put his head down on that table like he was nine.
He keeps coming back to the fact that he should have asked me in 2014.
And I keep telling him the same thing, which is that I had a letter in a drawer for twelve years that would have answered every single question he had —
and that I did not open that either.
We are about even, he and I. That is where we have landed and it is the only place we were ever going to land.
Soraya rings on Wednesdays and on Sundays now.
That is new since February. She has not explained it and I have not asked her about it and I am not going to.
The letter from February this year — the twelfth one, the one that came while I could not do up my trousers — did not go in the bin.
Dov found it in the recycling box on the back step when he went to the house for the envelope.
That is the only reason anybody on this earth knows there were eleven letters and not ten.
It had been sitting in that box, under a cereal packet, for nine days.
The reference number on it is the same reference number that was on Dr. Opoku's screen.
And here is the only thing I have, after a year of this.
My husband spent eleven years and a great deal of money building something that would go on working after he was dead.
He thought about every single part of it.
The funding paid up to 2034. A woman with a silver case walking onto a ward three days before the end to put her name on it.
Eleven letters a year apart. And a cream envelope in a drawer with four lines in it telling his wife exactly what to do and exactly when.
He was an insurance man. He spent forty years thinking about what happens to people after the thing happens.
And the one part he could not do anything about is the only part that mattered.
He could not make me open the envelope.
He put the instruction eleven feet from the front door and he could not make his wife lift the flap on it for twelve years, because every February I decided that nothing had happened that I could not explain.
And I could explain all of it. Every time. I am eighty. There is an explanation for everything at eighty.
That is what it costs.
May you like
Twenty-one kilograms. Four hours. Nine days.
And a man who spent eleven years thinking about everything, beaten in the end by a drawer.
