This is what it looks like when you choose the wrong doctor

The number

I kept getting it wrong in my own head, so I went back to the dates and counted.

• Eighteen months between the ultrasound that first said suspicious and the morning the tumour appeared.
• Ten months between the scan that already showed it and that same morning.
• Thirteen months between that scan and the afternoon I was told to put my affairs in order.

The photograph

Ten months is the one that matters. For ten months the answer was sitting in a computer, and I was walking around it, sending emails, going to work, and believing that no news was good news.

I have covered the picture. You should see this because you decided to, not because you scrolled past it. There is no blood and no wound. It is a woman's neck with something in it that should not be there, and that is exactly why it is difficult.

Sensitive photographA ten centimetre tumour at the base of my throat, the morning it appeared.Show the photograph

Where I was before any of it

During the pandemic I was not only drinking like everybody else was drinking. I was frightened of hospitals. Everything had turned into chaos and all I wanted was to be locked in my flat with my dog. I would not leave until late in the evening and I had contact with almost nobody.

Thank God you could order medication online by then. I was on tamoxifen, the hormone blocker, which I had taken every single day for years because my cancer was oestrogen positive.

There had already been a very bad situation with the same oncologist back in 2018, and that is its own post. As always, I was more afraid of leaving and finding another team than I was of staying.

“I was more afraid of leaving than of staying. That is the whole sentence, and it is the one that cost me.”

April 2021. Somebody looked properly

When the pandemic loosened a little I decided I needed my body checked. I went to my general practitioner and asked for a routine cancer check.

They examined everything. The supraclavicular area, and all the areas near where I had had more breast surgeries, radiation and implant changes than I can count.

The radiologist found small lymph nodes, six millimetres, and wrote that they were suspicious and looked pathological.

I want to be precise about who that was, because it matters. That radiologist had been doing my ultrasounds for years. He knew my body almost as well as I did. Everything he had ever written down about me had been right.

The arrangement

I took it to my oncologist, who I had been with for almost ten years.

Here is how it worked, and I have never written it down before. Every examination I had at the hospital was paid for by my insurance. But I had no way of getting my own results unless I booked a private appointment with him and paid two hundred euro for it. Later two hundred and fifty.

He held a senior position in a large public hospital, and from five in the afternoon he saw private patients, sometimes until eleven at night. One of my consultations was almost at midnight. I have sat in that waiting room for three hours in the evening.

So the arrangement was this. The state paid for the scan. I paid him to be allowed to hear what was in it.

April to December 2021

It took eight months to get the scan done, and some of that is mine.

I could not always make the hospital times. The first CT I was offered was in August, so I waited about four months for it. Then I lost an appointment because nobody had told me I needed an extra Covid test first, and it was pushed again.

On the first of December 2021 I did everything right. I had the test. I went. Going to a general hospital means being there the entire day, and you do not do that if you are not interested in what is happening in your body. I drank the liquid, which is foul. They injected me with radioactive sugar. They did the scan. I went home.

And then I waited for the call.

The agreement that nearly killed me

For almost ten years we had the same agreement. If I do not call you after a scan, it means nothing has changed. For me, in that moment, that meant: carry on taking the same medication.

A week passed. I rang his office. They told me the results were not ready, and that they would call me back.

Nobody ever called me back.

“No news is not good news. No news is an agreement that somebody else is keeping on your behalf, and you cannot see whether they are keeping it.”

What 2022 was actually like

People do not understand how hard it is to have cancer and provide for yourself at the same time.

I was coming out of a pandemic. I had been living on support, and being a one person company helped, because the support was based on what I had earned before, and before the pandemic I had earned well. I am grateful to live where I live. It is generous in some ways and brutal in others.

But the savings were running out and I had to go back to work. So I did. I got a job I hated. I got busy. I had to learn how to live again after the pandemic.

And all through it I was tired. Not ordinary tired. No energy, fatigue I could not explain, ill repeatedly.

I blamed the drinking. I blamed the cigarettes. Every single symptom I had, I put down to smoking too much and drinking too much, because that was the obvious answer and because I was ashamed of it.

It was not the drinking. It was cancer. My body was telling me for ten months and I could not hear it over the explanation I had already accepted.

I did write to him. More than once. I told his office I had pain in my left side. I told them my hand was getting bigger, that I had developed lymphoedema more than ten years after my node dissection, that I was not in good shape.

I even wrote to him on the first of December 2021 itself, thanking him for arranging the scan, and saying that if it was not urgent I would rather get through the holidays and my birthday in January and deal with it afterwards.

He had the result. It was positive. It was growing aggressively inside me.

His answer was that we would see each other in February.

“I gave him the opening. I said: if it is not urgent. All he had to do was look at the screen that was already in front of him and say the word urgent.”

Tuesday the eighteenth of October 2022

Two days earlier I had been on the floor of my hallway and made God a promise that I would never drink again. That is written down elsewhere on this blog. I have not had a drink or a cigarette since.

On the Monday there was nothing on my neck. I went to bed normally. On the Tuesday I woke up and it was there. It came up the way a bubble comes up through boiling water.

I had just had Covid for the second time and I was in a bad way with it, so I went straight to my general practitioner and said: look what Covid has done to me.

He did not hesitate. He said: that is not Covid, that is cancer. And he sent me for an ultrasound the same day.

You are full of cancer

In the ultrasound room it was the same radiologist who had watched my body for years. He was surprised to see me. He asked what had happened between April 2021 and now.

So I told him. I came to you. You found something. I took it to my oncologist. I waited months for a CT. I did a PET scan on the first of December. I waited the whole day at the hospital. I drank the liquid and they injected me with radioactive sugar. And nobody ever called me back, and by the rule my oncologist gave me, that meant nothing had happened.

He looked at the screen and he said: you are full of cancer.

It was not one tumour. The ten centimetres coming out of my neck was the part you could see. Underneath it was a conglomerate of lymph nodes full of cancer through my neck, supraclavicular, infraclavicular, cervical. It was climbing towards my brain.

Long time no see, you look very good

I went back to the same oncologist. Better the devil you know. It does not matter how bad he is, at least I already know how bad, and what if the next one is worse.

He opened the door, greeted me, said long time no see, you look very good. All the things that make you feel comfortable, and safe, and certain that the person in front of you knows what they are doing.

I sat down. Before he had even sat down himself he said: do not worry, last year was nothing.

Then he opened his computer. Five seconds. And he said, and I am quoting him: oh, last year there was already confirmed, why did you never come back.

“Oh. Last year there was already confirmed. Why did you never come back?”

Everything went stone cold inside my head. I was completely frozen. I did not know what to say. In the end all I could say was: how could I know, if nobody called me.

And he shifted it onto me immediately. Why did you not come back. Not: I did not call you. Not: I had this on my screen for ten months. Why did you not come back.

And I stayed anyway, and here is why

This is the part that is hardest to admit and the most important thing in the post.

I stayed with him for months after that. I did a new scan under him. Because he had influence in the hospital, and it works like this: if you are his private patient, you get the hospital resources fast. If you are not his patient, you are at the back of a queue where nobody particularly wants to take you.

So leaving was not just leaving a man I no longer trusted. Leaving was losing access.

Parting ways with that oncologist cost me years of proper medical attention. And eventually it cost me my left hand.

Go home and put your affairs in order

The new scan showed more cancer, everywhere.

On the thirty first of January 2023 I sat in front of him and he told me to go home, smoke a cigarette, drink a glass of wine, and put my affairs in order, because I was probably going to die.

He did not apologise. He would not discuss it. He dodged every question about why nobody had called me. He made it my fault, and later, when I tried to hold him accountable, he used one of the emails I had written while I was in pain against me in a hearing.

I went to every organisation I could. The institutional cover up was bigger than I was.

So I had a choice. Spend my energy fighting a man I could not win against, or spend it staying alive. I chose staying alive. That was the right decision and I still have to repeat it to myself.

What I actually stopped doing

This blog has a series about the things I stopped. Everybody assumes it is about alcohol and cigarettes. Those are the easy ones to name, because they happen in a single night and you can count the years afterwards.

This is the hard one.

I stopped handing my life to another person and calling it trust.

I had handed over all of it. My results, my dates, my body, and the decision about what I was allowed to know and when. Everybody around me called that trusting your doctor. It is the most normal thing in the world and it nearly finished me.

• I stopped treating no news as good news. A result exists from the day it exists. Nobody is holding it for you.
• I stopped accepting a summary instead of the document. Not what it said. The report.
• I stopped accepting a date with nothing behind it. We see each other in February is a diary entry, not a plan.
• I stopped explaining my own symptoms away. I blamed cigarettes for ten months of cancer, because shame is a very good hiding place.
• I stopped letting one person hold the whole thing. One opinion is one opinion.
• I stopped staying because leaving was frightening. I was more afraid of leaving than of staying, and the thing I was afraid of was never the dangerous one.

If you are sitting there with a diagnosis

I am not telling you to copy me. I am telling you what it cost so that you can decide with the price written on it.

Go back to the first post in this series and do the exercise I wish I had done sixteen years ago, and ten years ago, and six years ago, and four years ago. Breathe. Sit with yourself. Stop listening to everybody for five minutes and listen to what you already know.

Because the decisions you make out of fear and desperation do not cost you time. They cost you pain, and sometimes a part of your body.

What I ask for now

I believe my hand will work again one day. I do not aim for very much. I ask God for no pain, a little more strength, and two fingers that work, so that I can curl my hair overnight the way I did for the two years before my hand stopped.

I am not asking to be the way I was before. That does not mean I do not grieve my hand. It means I want you to get to the other side of whatever this is for you.