Nobody tells you what happens after

Sixteen years of the same wall

I have been dealing with cancer since 2010. I knew I was at risk. Breast cancer runs in my family and I said so, every time, to everybody. And for years what I got back was a sentence I can still hear: you are too young to have cancer.

I was a good patient. I followed instructions. I went where I was sent, when I was sent, and I did what I was told. That is the part people get wrong about stories like this. I was not difficult. I was obedient, and being obedient is exactly what cost me.

The first time I found a lump I ran to a doctor in a city I had just moved to, and he sent me to a specialist who was not the specialist I needed. I should have been sent to a breast centre, somewhere that could actually examine me. Instead I had a surgery I did not need, and I came home mutilated and could not look at myself for a year.

And there was no point in fighting it. Taking a doctor to court in this country, and I suspect in most countries, is close to impossible. They are allowed to be wrong. Sometimes they are wrong in a way that takes a piece of your life, and it costs them nothing.

That set the pattern for everything that came after. Sent home after surgery, then called back because something had been done wrong. Never offered psychological support, not once, in sixteen years. Told I could eat whatever I liked. Told, out loud, that alcohol has nothing to do with breast cancer and that smoking is not related to it either.

Alcohol has been classified as a Group 1 carcinogen since 1988, and breast cancer is one of the cancers it causes. The sources are at the bottom of this page. I was told the opposite, by a doctor, while I was taking tamoxifen, which carries its own risk of clots. Alcohol, cigarettes and that medication together was a time bomb sitting inside my life, and nobody assembling it ever said a word.

I do not have a good explanation for why I am still here. I believe in God and I think I have been blessed. I also think I was blessed with a brain and with curiosity, and that the digging is the part I did myself.

The sentence I was not told

I could write about all sixteen years. Today I want one thing.

In 2024 a new oncologist told me to stay on a medication that was making me worse. The reasoning was that my cancer needed to grow enough for him to take a biopsy. So I waited, and it grew, and I spent roughly six months in excruciating pain, because the tumours were sitting next to the side that had already been destroyed years earlier. I developed lymphoedema.

And that was only the part with a name. At the same time I was in induced menopause, which meant an implant every three months, Zoladex, and it was painful every single time. Alongside it there was another drug that made me extremely ill.

I have never let cancer take over my life. I want that on the record, because I have spent sixteen years refusing to let it be the only thing about me. But from 2023 to the end of 2024 I was miserable. More miserable than in the whole sixteen years put together.

In the end there was no biopsy. I went straight to radiation.

A few months ago I read my own radiation papers. Properly, line by line, for the first time. And in the notes about me there was a phrase I had never heard anybody say out loud.

“Unlikely to recover. Palliative patient.”

That was written about me. And it had been written before anything had been tried.

I have thought about that sentence more than I want to admit. It means I was not being treated in order to be healed. I was being treated because that is what is done. You are given the treatment, the treatment finishes, and then you are finished with it. Somebody had already decided how this ended, and then proceeded anyway.

And not one person told me that was the frame I was inside. I found out alone, months afterwards, by reading my own documents.

I am not going to pretend that was easy. It is a very strange and very heavy thing, to read about yourself, in the file of the system that was supposed to be helping you, and find that they had already written you down as dead.

And this is the part I want people to understand. You are not only left as an orphan at the end. You are inside a protocol from the beginning. There is an illness, and there is a procedure for that illness, and the procedure is carried out. Nobody is healing a person. Whether the person attached to the illness is expected to survive it is a separate question, answered privately, written in a note, and never raised with her.

Two years after the radiation I found the answer they had written down. They were not treating a person in order to heal her. They were treating a person who, on paper, was already dead.

They sent me home like an orphan again. But this time I could read.

By then it had already cost me my hand

Nearly two years of this. And somewhere inside it, my wrist stopped holding itself up.

It was an injury to the radial nerve. My hand would not lift. The state of that nerve was not subtle and it was not hidden, it was there to be seen by anybody who looked. And it was put down to the cancer.

That is the whole mechanism, in one example. Once a thing belongs to the illness, it stops belonging to anybody else. It was not sent to neurology, because neurology was not who you called about a cancer patient. I was in radiation at the same time, and the nerve was left to the people already treating the tumour, which in practice meant nobody at all.

I lost the use of my left hand. It is my dominant one.

I am reading those papers now and I can see exactly why it happened. The reason was in them at the time as well. Somebody could have read it then.

And that is why this year has been one of the hardest of all of them. Sixteen years of illness did not take my hand. The two years of being told it all belonged to the cancer did.

The part where I stopped

This time was different, because this time I decided I was not going back. I fired the oncologist.

And then I did the only thing I actually know how to do. I have spent my working life engineering things for other people. So I started engineering my own healing.

That is where My NEDPath comes from. Not from a business plan. From sitting with a folder of documents about my own body that I could not read, and deciding that the not being able to read them was the problem I was going to solve.

I want to be very clear about one thing, because it gets misunderstood the moment you say the word integrative. I did not do this instead of medicine. I had conventional treatment. I had radiation. What I added afterwards was the recovery nobody gave me, done every day, with the same consistency I would give to any system I was responsible for keeping alive.

My markers were in the normal range in April, and they were in the normal range again two weeks ago. I have no sign that the cancer is coming back.

I think that decision is the reason I am still here. Not the only reason, but the one that was mine to make. And if I had not made it, I do not believe it would have stopped at my hand.

Everything gets filed under the cancer

There is a second thing that happens, and I think it does more damage than the first, because it does not announce itself.

Once cancer is in your file, it becomes the explanation for everything. A new symptom appears and it is put down to the illness, or the treatment, or the anxiety of having had both. Often that is correct. The problem is what happens when it is not, because once a symptom has been filed under the cancer, nobody looks at it again.

I have difficulty swallowing. That is from radiation next to my throat, and the tissue it left behind. Part of my lung is fibrotic for the same reason. That is scarring, not progression, and knowing the difference between those two words is the difference between a manageable life and a year of terror.

Nobody sat me down and drew that line for me either. I found it myself, afterwards, the way I have found everything.

What being sent home should actually look like

Here is what I think about when I think about that car park.

They tell you about the side effects. They tell you not to use a sauna, and what to put on your skin. And then it stops, exactly where the real question starts, which is: what do I do now, every day, to help this body come back?

Nobody hands you a recovery plan. Nobody talks to you about food, or about sleep, or about moving, or about lifting something heavy, or about what stress does to an immune system you have just spent a year dismantling. Nobody suggests you speak to anybody about the fear. Nobody mentions that crying every day, for months, has a physical cost.

What you get instead is a prescription. And then another one for the side effects of the first. And another for the side effects of that. Until you are taking more medicines than you can count, and every organ you own is in worse condition than when you started.

I am not telling anybody to stop their medication. I am saying that a discharge should be the beginning of something, and instead it is just the end of something.

And the thing I did not expect

The last piece of this is not medical at all, and it might be the most useful thing I can say.

A support system is not twenty people ringing you to ask how the cancer is. When you are sick of the word, being asked about it constantly is not support, it is the illness taking even more of your day.

Find something that has nothing to do with it. A hobby. A reason to be outside. Get a dog, if you can. Mine has been the single biggest blessing of these years, and he has never once asked me about my scans.

Sixteen years is long enough. Stop giving so many hours to something that has already taken so much from you.

Why this blog exists

Everything I have written here I learned too late for it to help me. That is the whole reason for these pages.

What happened to me. What I was told. What I was not told. What I found out afterwards. What the words in a report actually mean. And what I am building, so that the next person holding a folder they cannot read has something better than sixteen years and a lot of luck.

If you have just finished treatment and nobody has explained any of this to you, you are not imagining it, and you are not being difficult.

Sources

One claim in this post is about the world rather than about me, so it carries its source. I was told by a doctor that alcohol has nothing to do with breast cancer. That is not correct, and it has not been correct for a long time.

Alcohol and cancer, World Health Organization Regional Office for Europe. Alcohol was classified as a Group 1 carcinogen in 1988, and breast cancer in women is named among the cancers it causes.

Alcohol and Cancer Risk, National Cancer Institute. The same conclusion, with the studies behind it.