Hans Casteels, Cancer Survivor, shared a post on Substack:
Yes, It Sucks. Welcome to Cancer. Please Take a Number and Question Everything. What Newly Diagnosed Cancer Patients Actually Need to Know
“A version of this essay was first published in December, when I tried to write down what newly diagnosed cancer patients actually need to know, as opposed to what the beige brochures suggest they need to know, which is apparently to purchase white sneakers and ride bicycles through tulip fields while glowing with spiritually photogenic resilience. Since then, I’ve thought about it more, read more, listened more, been annoyed more, and watched the cancer world continue doing what the cancer world does best: combining extraordinary science with baffling communication, heroic care with institutional inertia, and patients with enough paperwork to qualify as a small Flemish municipality. So this is the updated version. Not because the first one was wrong, but because cancer has layers, like bureaucracy, grief, and badly made lasagna.
The moment you hear the word cancer, time does not slow down in a meaningful, cinematic way. There is no soft focus. No swelling music. Nobody gazes nobly out a window while a violin starts reconsidering its career choices. Instead, your brain pulls an emergency brake it did not know it had, and everything inside you goes flying forward. Thoughts. Fear. Logic. Your sense of being a competent adult. Suddenly the pamphlet rack looks hostile, like it is judging you. Someone is talking about pathology, or biopsy, or biomarkers, which sounds less like modern medicine and more like something involving leeches, chanting, and a poorly lit dungeon. You nod anyway, because nodding has become your primary coping skill.
This is also the precise moment when everyone expects you to be brave. They will tell you this immediately and repeatedly, often in the same tone people use when handing a toddler a helmet.
‘You’ve got this.’ ‘You’re strong.’ ‘You’re a fighter.’
This is meant kindly, but it is deeply unhelpful, mostly because you have no idea what ‘this’ is yet, let alone how one goes about getting it. You have not been issued equipment. There has been no training montage. You were just minding your own business and now you are apparently in a war you did not enlist in, against an enemy inside your own body, which seems administratively unfair.
You will also, very quickly, develop a healthy dislike for the standard cancer literature. The brochures are always beige. Always. Beige like despair with better lighting. They invariably feature a smiling man and woman who look suspiciously like retired models, riding bicycles through tulip fields in Holland or along an improbably empty canal in Ottawa. They are wearing clean white sneakers. They have matching helmets. They do not have cancer. They have never had cancer. They are on a photoshoot, and someone has told them to ‘laugh naturally,’ which they do, despite allegedly being in the middle of oncology. These brochures promise empowerment, clarity, and hope, while quietly refusing to explain anything in plain language. They are designed to reassure people who are not sick. Actual patients look at them and think, if this is how cancer is supposed to look, I am doing it very badly.
So let’s start with the first thing newly diagnosed cancer patients absolutely need to know. No brochures. No pastel ribbons. No inspirational fonts designed to make suffering look like a lifestyle choice. Just the things that actually matter, from someone who has already been dragged through the medical car wash and emerged on the other side slightly traumatized, mildly damp, and still operational.
Here’s what newly diagnosed cancer patients absolutely need to know.
First, this is not your fault. Not the sugar. Not the frangipanes. Not the wine. Not the red meat. Certainly not the croissants, and certainly not your first marriage, although several first marriages have enough emotional carcinogenic potential to deserve their own warning label. Not that one decade where stress was basically your hobby. Not your third wife. Not your husband. Not the time you ate bacon with the moral recklessness of a Flemish man at a hotel breakfast buffet. Cancer is not the universe conducting a lifestyle performance review. If it were, several deeply unpleasant people would be much farther ahead of you in line. Anyone who suggests otherwise has confused medicine with morality and should be gently escorted out of your mental space, preferably by security.
Some health fanatics get cancer. Some marathon runners die of heart attacks. Some people who never exercised live to one hundred. Some one hundred year old smokers do not get cancer. Some people who never smoked a cigarette in their life die from lung cancer. This is not fair, but fairness has never been a strong feature of biology, which appears to have been designed by a committee that also worked on Belgian road signage.
Second, you will be overwhelmed, and that is not weakness. Your brain will turn into a snow globe the moment you hear the word cancer. Family will ask questions you cannot answer. You will forget half of what you are told five minutes after being told it. You will forget what doctors tell you roughly thirty seconds after they tell you. This is not stupidity. It is shock. Your mind is busy screaming internally while pretending to listen politely. You will leave appointments holding papers you do not remember receiving, containing words you cannot pronounce, with instructions that seem to assume you own a medical dictionary, a law degree, and a functioning short term memory.
Bring someone with you. Take notes. Record conversations if you are allowed to. Think of it as outsourcing cognition. Cancer is many things, but it is not a solo sport. This is not the moment to prove that you are independent, stoic, and capable of absorbing six complex medical explanations while sitting on an examination table in paper shorts. Nobody is that capable. Not even the retired guy in the brochure pretending to enjoy cycling through tulips while allegedly fighting lymphoma.
Third, create one place for the information, because oncology produces paperwork the way Belgium produces permits. You will acquire pathology reports, scan reports, blood work, prescription sheets, appointment dates, medication lists, side effect notes, insurance forms, parking receipts, phone numbers, portal passwords, and mysterious documents stapled together by someone who clearly hates humanity. Put it all somewhere. One binder. One notebook. One digital file. One folder on your phone. Something. Because at some point someone will ask, ‘When was your last scan?’ and your brain will respond with a soft dial tone.
This is not about becoming a medical project manager, although cancer will try very hard to promote you into that role without salary, benefits, or a decent chair. It is about survival by organization. Write down your diagnosis. Write down your stage. Write down your treatment plan. Write down your medications. Write down your questions before appointments, because once you are in the room, your brain may decide to focus on the doctor’s shoes, the humming fluorescent light, or why the blood pressure machine sounds like a raccoon being inflated.
Fourth, most of what you read online is garbage. The internet is not your friend. It is a casino with symptoms. Whatever search engine you use will immediately show you either a miracle cure involving turmeric, moonlight, and a man in Arizona selling capsules from his garage, or a forum post written in 2009 by someone named WarriorDad73 that begins with ‘My uncle had exactly that’ and ends with ‘he passed peacefully three weeks later.’ This is not research. This is emotional vandalism with WiFi.
Trust your oncology team more than strangers with avatars and strong opinions. Trust trained professionals more than people whose medical qualifications consist of having watched three videos and owning a blender. And yes, tools like ChatGPT can be useful, mostly for helping you think of better questions to ask your doctor, or translating medical mush into human language. But do not confuse ‘useful for preparation’ with ‘qualified to replace oncology.’ That way lies chaos, lawsuits, and probably a smoothie.
Fifth, statistics are not prophecies. You are not a percentage. You are not a curve on a graph. Survival stats are rearview mirrors, not GPS directions. They describe populations, not you. Obsessing over them will ruin your sleep and achieve nothing medically impressive. Doctors will give you numbers. Percentages. Curves. Charts that look suspiciously like doom if you stare at them long enough. This is where many patients spiral, because statistics feel personal when they absolutely are not.
You are not a data point. You are a walking biological exception with your own genetics, your own immune system, your own response to treatment, and your own irritating tendency not to behave like averages. Statistics can inform decisions. They should not be allowed to redecorate your imagination at three in the morning. Treat them like a weather forecast from last year. Possibly relevant. Not destiny.
Sixth, ask the stupid question, especially when it is not stupid. Patients often do not ask because they think they should already understand staging, margins, biomarkers, lymph nodes, hormone receptors, Gleason scores, treatment intent, recurrence risk, and why every hospital printer still sounds like it is being operated by a wounded badger. Ask anyway. Ask what the goal is. Cure? Control? Delay? Symptom relief? Ask what happens if Plan A fails. Ask what side effects matter. Ask what should send you to emergency. Ask what can wait until Monday. Ask what the next decision point is.
The stupid question is often the question that prevents trouble. Medicine is full of language that sounds precise but arrives in the patient’s head as soup. If you do not understand something, say so. You are not there to impress the oncologist with your ability to pretend. You are there to stay alive, stay functional, and possibly remain pleasant enough that your family does not hide in the garage.
Seventh, treatment is often worse than the disease, at least in the short term, and that does not mean it is not working. This is shocking, mostly because nobody puts it on the brochure. Fatigue that feels geological. Brain fog so dense you could misplace a sofa. Mood swings that would alarm a seismologist. Hot flashes. Cold flashes. Emotional flashes. A sudden, almost professional level interest in lying down. Cancer therapy is not elegant. It is not polite. It does not care about your schedule, your dignity, or your plans for the weekend.
Fatigue, brain fog, mood swings, sexual dysfunction, hot flashes, pain, weight changes, bowel changes, urinary weirdness, emotional volatility, the sudden urge to cry over commercials for soup. This is not you failing treatment. This is treatment. It is ugly, unglamorous, and profoundly inconvenient. Modern oncology can be miraculous, but it remains, in many cases, a sophisticated form of biological vandalism carried out for excellent reasons.
Eighth, side effects are not moral weakness, and reporting them is not complaining. Patients minimize side effects because they do not want to seem difficult, ungrateful, soft, dramatic, or like the sort of person who bothers a nurse because his bowels have started behaving like a badly governed province. Report things early. Pain, bleeding, fever, shortness of breath, dizziness, depression, sexual changes, urinary problems, bowel issues, neuropathy, sudden weirdness. Oncology cannot manage what it does not know.
Stoicism is not a treatment plan. It is just suffering with better posture. There is no prize at the end for having endured preventable misery in silence. No nurse will emerge from behind a curtain and say, ‘Congratulations, you ignored a dangerous symptom for twelve days and have won this beige tote bag.’ Tell the team what is happening. Be specific. Be honest. If something feels wrong, say so. You are not being a nuisance. You are providing data from the only body in the room that has to live through this nonsense.
Ninth, you will lose control, and fighting that reality exhausts you faster than cancer ever will. Your calendar will belong to oncology. Your body will feel like a poorly managed rental property. Plans will be canceled. Energy will evaporate. You will learn the strange geography of hospital parking lots. You will know which waiting room chairs are hostile to the spine. You may find yourself discussing bowel movements with a stranger in a lanyard at 9:15 on a Tuesday and thinking, well, this is my life now.
Acceptance here is not surrender. It is conservation of strength. You are allowed to lower expectations. You are allowed to cancel things. You are allowed to make your world smaller for a while. This does not mean cancer has won. It means you are no longer spending all your energy trying to perform normality for people who are mainly worried that your illness might make dinner awkward.
Tenth, people will say stupid things, often lovingly. This is one of the great social traditions of cancer. People around you will say things. Many things. Most of them well-intentioned. Some of them catastrophically stupid. ‘Everything happens for a reason.’ ‘You just have to stay positive.’ ‘My neighbor cured hers with diet and yelling at her husband.’ ‘Have you tried cutting out sugar?’ ‘My cousin had that and he is fine now, except for the part where he moved to Florida and joined a drum circle.’
You are not required to educate, comfort, or spiritually uplift anyone. You may smile, nod, and internally file these comments under things I will never think about again. You may also decide, depending on your energy level, to say, ‘Thank you,’ which is polite, or ‘That is not helpful,’ which is honest, or nothing at all, which is sometimes the most dignified response to nonsense wearing good intentions.
Eleventh, you will need support, but not necessarily the kind people imagine. Real support is not inspirational quotes, pastel ribbons, or someone telling you to stay positive while looking as if they have recently escaped from a wellness retreat. Real support is someone who can listen without fixing, show up without hovering, and sit in silence without turning it into a TED Talk. It is someone who can come to appointments, drive you home, make dark jokes without flinching, and say, ‘This sucks,’ then stop talking.
Unfortunately, many cancer support spaces fail spectacularly. In theory, they are helpful. In practice, they can feel like grief conventions where everyone is required to share, compare, and perform vulnerability on schedule. They are sometimes dominated by relentless optimism or competitive suffering. Someone is always worse off than you, which makes you feel guilty for struggling. Someone is always doing better, which makes you feel like you are failing cancer. Most patients do not need a circle of folding chairs and forced emotional disclosure. They need a few steady humans. Quality beats quantity every time.
Support groups can be useful, especially when they share practical information patients rarely get in the official beige pipeline. Which clinic validates parking. Which pharmacy actually answers the phone. Which cream helped with radiation skin. Which nurse knows how to explain things in human language. Which hospital entrance does not require you to walk through what appears to be an abandoned wing of the Ministry of Sad Lighting. That kind of information can be gold. But a support group is not a substitute oncology department. It is not the place to crowdsource whether you should stop treatment, change medication, skip radiation, add supplements, ignore a scan, or reinterpret your pathology report because someone’s cousin in Moose Jaw had ‘basically the same thing’ in 1998. Support groups should help you ask better questions of your oncologist, not replace the oncologist with a committee of frightened people, confident anecdotes, and one man who has printed seventeen PubMed abstracts and highlighted the wrong sentences.
Twelfth, your caregiver is also being dragged through this, just without the wristband. This may be your spouse, partner, friend, sibling, child, neighbor, or the unlucky person who made the mistake of loving you. They are not merely support. They are absorbing fear, logistics, sleep loss, emotional whiplash, parking fees, pharmacy confusion, meal planning, appointment calendars, and your occasional transformation into a radioactive badger. They need help too.
Cancer hits the household, not just the organ under discussion. The patient gets the diagnosis, but the caregiver gets the watching. The waiting. The pretending not to panic. The remembering what the doctor said because the patient was busy staring through the wall. The caregiver needs information, breaks, backup, and permission to be scared without being treated as if they are betraying the patient. If you are the patient, let people help the person helping you. If you are the person helping, do not wait until you are a smoking crater before admitting you are tired.
Thirteenth, you are allowed to be angry, scared, cynical, and darkly amused. Cancer does not turn you into a motivational speaker unless you were already unbearable. You do not have to glow with wisdom. You do not have to become a better person. You do not have to discover the secret meaning of life between blood tests. You may simply be a frightened, irritated, occasionally funny human being trying to get through an abnormal situation with your dignity partially intact.
Humor is not denial. Sarcasm is not despair. Sometimes laughter is simply sanity refusing to leave the room. If you need to swear at the universe, swear. If you need to make a joke about your own body becoming a poorly funded science project, make the joke. There is no emotional dress code here. You are allowed to be grateful one minute and furious the next. You are allowed to be hopeful without becoming decorative.
Fourteenth, your relationships will change. Some people will disappear. Some will surprise you. Some will smother you with concern. Some will avoid you because mortality makes them itchy. Some will text once and then vanish into the witness protection program of emotional inconvenience. None of this is about your worth. It is about their capacity.
Illness reveals people. Not always dramatically. Sometimes quietly. The reliable ones become more reliable. The fragile ones become busy. The performative ones post something vague online involving strength and emojis. You may lose patience with people you once tolerated. You may feel unexpectedly close to someone who simply showed up with soup, said very little, and did not ask you to provide an inspirational update. Cancer rearranges the furniture of your social life, usually without asking where anything should go.
Fifteenth, after treatment, everyone else may move on before you do. This is one of the strangest parts. The outside world sees the end of treatment as the end of the story. You rang the bell, or did not ring the bell, or stood near the bell and wondered whether the bell was for you or for everyone else who needed symbolic closure. People say, ‘You must be so relieved,’ and you may want to answer, ‘Yes, in the same way one is relieved after escaping a bear but now hears leaves moving.’
Sixteenth, question the dogma. Also, question the phrase ‘standard of care,’ because it sounds reassuring, like there is one golden road paved by science, wisdom, and calm people in clean coats. Sometimes there is. Sometimes standard of care means the best proven treatment based on strong evidence, and thank heaven for that. But sometimes it also means the default institutional pathway, the thing the system can deliver efficiently, repeatedly, defensibly, and without requiring twelve committees, three special approvals, and a physician willing to spend Thursday afternoon arguing with a fax machine. Standard of care is not a sacred tablet brought down from Mount Oncology. It is a starting point. Ask whether it fits your particular cancer, your age, your other medical problems, your risk level, your priorities, your tolerance for side effects, and your actual life. Ask whether there are trials. Ask whether genomic testing matters. Ask whether a second opinion would change anything. Ask what the team would recommend if you were their brother, wife, father, or the annoying Belgian Canadian patient who has read just enough to be dangerous but not enough to be dismissed. Good medicine should survive good questions.
Seventeenth, next gen treatment is probably not what will happen. And when you inevitably go to Dr. Google, because of course you will, try to understand the maddening gap between ‘best standard of care’ and ‘next generation options.’ The internet will tell you about astonishing advances, precision therapies, immunotherapy breakthroughs, genomic targeting, radioligands, clinical trials, artificial intelligence, liquid biopsies, and treatments being discussed at conferences by people wearing name badges large enough to land aircraft on. And some of those advances are real. Some are genuinely exciting. Some may even become tomorrow’s standard care. But that does not mean they are available at your cancer centre, appropriate for your cancer, approved in your province, funded by your system, accessible without a trial, or offered by a team that has the equipment, experience, paperwork tolerance, and institutional permission to use them. This is where frustration enters, wearing hospital shoes. Many patients, myself included, question why the next generation options we read about are not available where we are being treated. The answer may be evidence, timing, funding, eligibility, geography, bureaucracy, or the ancient medical principle of ‘we don’t do that here.’ Prepare to be frustrated. Ask anyway. Not because the internet is wiser than your oncologist, because it usually is not, but because the best care often begins when a patient asks, ‘Is this really the best available option for me, or just the best available option in this building?’
Eighteenth: You are also allowed to mourn your former self. This is not self pity. This is accuracy. The person you were before diagnosis may have moved through the world with a confidence you did not even know you had until it was gone. You may miss the body you trusted, the calendar you controlled, the future you assumed, the energy you spent carelessly, the version of yourself who could hear about cancer and think, poor bastard, without realizing that one day the poor bastard would be you. Mourning that person does not mean you are ungrateful to still be here. It does not mean you are failing recovery. It means something was taken, or altered, or made uncertain, and you are allowed to notice. The culture wants cancer patients to be brave, grateful, inspirational, and preferably photographed beside a lake at sunrise. But sometimes the honest thing is to say: I miss who I was before all this. That person mattered too.
Nineteenth: Yes, there will be a life before diagnosis and a life after diagnosis. Pretending otherwise is one of the many polite little lies people tell because they want survival to mean restoration, as if treatment is a repair shop and you are supposed to come out buffed, balanced, and ready for resale. You may be better. You may be stable. You may be cured. You may be living with uncertainty. But you will not be exactly who you were before someone said the word cancer and the room tilted. That is not failure. That is not weakness. That is what happens when mortality stops being an abstract concept and sits down beside you without being invited. The task is not to get back to the old you. The task is to carry the old you forward, mourn what was lost, protect what remains, and build a life in the after that is still yours, still meaningful, still occasionally ridiculous, and still very much worth showing up for.
Twentieth: Do not panic. This sounds obvious, which is why it is almost impossible. The moment you are diagnosed, your brain will want to sprint into every possible future at once, most of them involving doom, regret, and a search history that should be sealed by court order. Take a few days if you can. Breathe. Gather the facts. Find out exactly what you have, how aggressive it appears to be, where it is, where it is not, and what decisions actually need to be made now versus what can wait until your mind has stopped behaving like a squirrel trapped in a ceiling fan. Then start thinking strategically. Use a game theory framework, (you can buy my book on this, or get it gratis by scrolling back several essays, where there twenty essays giving you advise on how to use a game theory framework to make decisions) not because cancer is a game, but because decisions have tradeoffs, players, incentives, uncertainties, timing, and consequences. Decide what matters to you: controlling the cancer, preserving quality of life, protecting your body from unnecessary damage, staying functional, keeping your relationships intact, and building a reasonable life after diagnosis. Question dogma. Ask why a treatment is recommended, what the alternatives are, what happens if you wait, what happens if you escalate, what happens if you choose less, and whether the plan is truly best for you or merely easiest for the system to deliver. You are not there to be difficult. You are there to be alive, informed, and still recognizably yourself when the oncology machinery has finished doing what it does.
There is before cancer and after cancer. The after includes vigilance, fear, gratitude, irritation, and a sharply reduced tolerance for nonsense. Your nervous system may remain unconvinced long after the medical team is pleased. Follow up appointments may feel like parole hearings. Every ache may audition for the role of catastrophe. This is not failure. This is adaptation. It is also annoying, because apparently surviving something does not automatically come with a refund, a manual, or a competent customer service department.
Now, the part no one expects from someone who has been through it. Despite everything above, many newly diagnosed cancer patients will survive. This is not optimism. This is math. Treatments are improving. Detection is earlier. Therapies are smarter and often less blunt than they used to be. Many people diagnosed today will still be here years from now, annoyed about something completely unrelated, like airport security, the price of lettuce, or why printers still hate humanity. Unfortunately, some people will die much sooner. No lesson. No meaning. No motivational quote to wrap it up neatly. It is random, unfair, and brutal. It is a bitch. And both things are true at the same time.
Cancer is serious. It is frightening. It is disruptive. But it is no longer automatically a death sentence, despite what your panic and browser history may suggest. It is a medical crisis, an emotional ambush, a logistical swamp, and occasionally an absurd social experiment in which everyone around you suddenly becomes either deeply kind, deeply awkward, or determined to recommend mushroom powder.
So if you are newly diagnosed, here is the bright note, earned honestly. It is not your fault. You are not broken. You are not alone. You are not required to be heroic. You do not have to become brave in any cinematic sense. You just have to keep going. One appointment at a time. One question at a time. One scan, one blood test, one difficult morning, one slightly better afternoon. With imperfect courage, questionable humor, and a few good humans beside you. Most people do. And most of them keep going.
Would you please consider…
If this essay made you laugh, think, wince, or mutter something unprintable about oncology, please consider helping with something beautifully practical. My daughter Ashley works in a NICU, where the smallest patients begin life already needing more courage than most adults can locate with both hands and a flashlight. We are raising money for new bassinets for our local little hospital’s NICU, because fragile newborns should not have to wait for proper equipment while adults hold committee meetings, invent delays, and somehow still find money for decorative landscaping. I don’t charge for what I write. I find it mildly obnoxious that anyone would pay for my complaints. But if these essays have given you anything, even a laugh on a bad day, please consider turning that into a contribution for babies who need warmth, safety, and a better start than bureaucracy usually provides. Premature and critically ill newborns do not benefit from ideology, talking points, or budgetary patience. They benefit from functioning, modern equipment. This is you and me stepping in because the system did not.”
You can also read:
Gold After Cancer: Summer Olympians Who Returned to Win Medals
