It is not the illness that stops people getting better

This morning, before the scan

I am not telling you that you have to believe in God in order to heal. That is not mine to tell anybody. I am telling you what I believe, and what happened to me. For me, I needed God in order to heal, and that is the part of the story that belongs to me.

I woke up with anxiety. The first thing I did was make my coffee, put on my red light therapy, and go looking for a prayer about healing. There is a channel I follow where the prayers are beautiful, and I do it every day now. I have become almost addicted to it, and I mean that kindly.

This year took me a long way from God. Pain does that. Being made to accept that my hand is paralysed did that. I needed a way back to believing that things are going to be all right, and that is where I found it.

And then I was not afraid.

Whatever is happening inside my body is already happening. Sixteen years in, that is the sentence I come back to.

“What is already happening is already happening. No amount of anxiety changes it. The sooner you understand what you can actually do about it, the sooner you can fight it.”

I am not going to pretend this is a method. Not everybody recovers from cancer, and nobody really knows why. I am speaking only for myself.

Why they were looking at my neck

In 2021 I had cancer in my neck and above my collarbone. It became metastatic, and it did not have to.

I was left without my own results for fourteen months. Not lied to. The information existed, it was written down, and it was not given to me. I had walked in already holding an ultrasound that said something was suspicious. I did not need convincing that something was wrong. I needed somebody to hand me the rest of the picture.

By 2022 it was out of control. A ten centimetre tumour at the base of my throat, on the left.

So when I go for cancer surveillance, this is the place they look. The neck, both sides, and the left armpit. Today, that place is clear.

“Fourteen months is not a delay. It is a dose.”

This is my report, and this is how it should reach you

Here is today's result, turned into something a person can actually read.

Read it slowly if you are ill, because this is the point of everything I am building. Nobody had to translate this for me out of kindness. No appointment, no fee, no asking somebody to find the time.

The scar tissue in my neck is scar tissue. Not disease. It has been there since the surgery and it is described in every report. For years a word like that could ruin a week of my life because nobody explained it.

No suspicious lymph nodes. Not in the neck, not above or below the collarbone, not in the left armpit. That is the cancer question, and that is the answer.

And two nodules on my thyroid. Twenty five millimetres on the right, twelve on the left. With one line underneath them: specialist assessment of the thyroid nodules.

I found that nodule with my own hands

Not on a scan. Not in a laboratory. Not in a doctor's room.

A few weeks ago, once I finally had my nerve pain under enough control, I restarted my full protocol. Part of it is castor oil on my throat in the evening. Every evening, my own hands on my own neck. That is how I felt it getting bigger.

If you are ill, you already know what I am describing. You know your body in a way that nobody who sees you for four minutes can. That knowledge is real information, and the system does not have a box for it.

Three days ago

I went to a new GP. The doctor who did my surveillance for ten years retired this year, so everything is new, and since May I have seen four doctors without finding one who takes me seriously.

Before the appointment I sent part of my history by email and asked to be taken seriously. I explained I had not done my cancer surveillance since April.

I asked for two things. A blood test for free T3 and free T4, which was missing from my last test, and for the nodule in my throat to be checked.

I was told everything was fine.

I said that it is not fine, because I can feel a nodule in my throat, because it is bigger than it was, and because I know my own body.

The request was refused. I offered the rest of my history, years of results, organised, on my phone and on a memory stick. The answer was that there was no time, that the doctor did not need to know everything, and that the doctor is not my oncologist.

No. But that is the person who writes the referrals. You cannot be the gate and also refuse to look at what is arriving at it.

What nobody asked me

Here is what I would have said, if anybody had asked.

I have two nodules and one of them makes swallowing difficult. I feel it when I massage my neck. I have had thyroid trouble for years, up and then down, controlled with medication and with how I live, and I am fairly sure my values are not stable any more.

And I know why they would not be. The pain started in September last year, and from January until the end of June it was excruciating. Ten months of it, six of them unbearable. Everything I was given to get through that went through a body whose thyroid was already struggling to stay level. It would be strange if that had left no mark.

That is not me diagnosing myself. That is a history, and a history is the thing that tells a doctor which test to order. I had it ready. Nobody asked for it.

And none of this is a favour

When you work, your insurance comes out of your pay automatically, every month, whether you are employed or running your own company. It is not charity and it is not a gift from the state. It is something you bought in advance, for exactly the day you are ill.

So when you ask for a blood test you are not asking for something. You are collecting something you have already paid for. And still the posture required is the posture of asking a favour, and if you ask twice you become difficult.

I had also asked, earlier, for physiotherapy at home, for a hand I have rehabilitated by myself with no help from anyone. I was told I did not need it, because I can walk. How far I can walk is not a clinical finding. It is a fact about my life, and I am the only person in the room who has it.

The report is on its way to that doctor

Here the system does something quietly satisfying. The report goes back automatically to whoever referred you.

So the paper that says I was right is being delivered to the person who told me there was nothing to check. I did not have to argue and I did not have to complain. It simply arrives.

I am not going back. I will find another GP, I will say exactly what I need, and I will book the specialist myself.

And now the part I could have hidden

That page you saw further up did not come out right the first time. Or the second.

Look at which way they were wrong. Neither of them invented a cancer. Neither of them frightened me. Both made my report sound slightly better than it was, by leaving something out.

That is the dangerous direction, and almost nobody warns you about it. A tool that frightens you gets caught in an hour, because you take it straight to a doctor. A tool that soothes you is never caught at all. You read it, you feel relieved, and you put it away.

I am telling you this about my own product on the day I am proudest of it, because you are going to be handed tools like this by people who will never show you the two that failed.

It took three attempts to produce something I would hand to a patient. The difference between the failures and the good one is a single thing: the good one kept the sentence that asked me to do something.

Nobody shows you the ones that failed

Almost everything you are handed was arrived at on the third attempt and presented to you as the first. The two that did not work are quietly deleted, and you are shown the one that did, and then you are expected to trust it.

The people I have ever learned anything from are the ones who say out loud how many times it did not work, and how close they came to losing everything while it did not work. That is not modesty. It is the only evidence you have that somebody was actually checking.

“A tool that nobody has ever caught being wrong is not a tool that is never wrong. It is a tool nobody has checked.”

So I would rather you saw all three of mine. It failed, it failed again, and then it worked, and I know exactly why it worked. If that makes you trust it less, I understand. For me it is the only reason to trust anything.

It is also the honest answer to why this is taking me so long. People ask why I am not finished. Because getting it almost right is quick, and getting it right is not. Three attempts on one page of my own report, on a day I was supposed to be celebrating. That is the work, and I would rather be slow than hand somebody a page that quietly deletes the line telling them to see a doctor.

What this actually did for me

I want to describe this plainly, because it is the part I would have wanted to read five years ago.

Everything about my illness used to live in pieces. Questions in my head with nobody to ask. Information scattered across the internet, half of it frightening and most of it not about me. Sixteen years of my own documents, written for other doctors, in a language I had to learn by myself. Nothing was in one place, and nothing was in my language.

Now it is in one place, and it is shaped so that I can understand it and act on it. That is the whole of it. No magic, no diagnosis, no promises.

And look at what it did in practice this week. I felt something in my own body. I was refused the test that would have explained it. An image confirmed what I had been saying. And then a tool put that image into words I could read, got it wrong twice, got it right on the third attempt, and let me decide what the final version was allowed to say.

I have spent most of this year in the chair of the person this happens to. Pain does that. It makes you small and it makes you quiet, and I was quiet for months.

Three days ago I walked in with confidence and I was still refused. Today I was proved right. The thing that changed between those two days was not my courage. It was that I had the information in my hands.

People who build these systems talk about decades of medical progress arriving in years. I am not in a position to judge that, and I am not going to pretend otherwise. What I can tell you is what it did for one person, and I am that person.

Why I am building this for you

I want to be honest about what I am claiming, because sick people are lied to constantly.

I am not cancer free because of artificial intelligence. I am cancer free because of surgery, treatment, and a great deal that arrived later than it should have. Nobody should sell you anything else, and if somebody does, walk away.

What is true is smaller and it still changed my life. I can read my own file. I understand what the words mean. When a report arrives I am not waiting for somebody to have four minutes for me. That is not courage and it is not a talent, it is an accident of what I happen to know, and it should not be an accident.

Everything in my life that went badly wrong medically went wrong in the same place. Not in the operating theatre. In the gap between a document about my body and me being allowed to read it.

So that is what I am building. Not to replace your doctor and not to diagnose anybody. To put your own report in front of you, in words and pictures you can understand, with the instruction still in it.

If you are ill and reading this

Four things, and none of them need an app or any money.

Ask for your report, not just the verdict. You are entitled to it. I have written about how to ask and what it costs. Reading it is easier than imagining it.

Read the end first. If a report asks for anything, it asks at the bottom, after the reassuring part. Look for the words recommended, advised, follow up, repeat, refer.

If somebody explains your report to you, hold the explanation next to the report. A friend, an app, a search engine, me. Ask what is in one and not in the other. Five minutes. Today it would have been the difference.

And if you are refused, ask for the refusal to be written down. Could you please note in my file that I reported this, and the date. If we are not investigating today, could you note the reason. Nobody has ever said no to me when I asked it that way, and it changes the room.

Where I am today

Twenty two months clear, in the place where it was worst. One nodule that makes swallowing difficult, which is now going to be looked at properly, by somebody whose job it is.

Cancer free, with something else to check. That is what most of us actually get, and nobody says it out loud, so I am saying it.

And if you take one thing from today, take this, because I nearly did not get the chance to say it. Very often it is not the illness that stops people getting better. It is the obstacles put between a patient and the information about their own body.