Emotional support
Fear before the first cycle
Yes, and almost everybody is. The fear before a first cycle is generally worse than the cycle itself, because what you are afraid of is built out of what you have heard rather than what will actually happen to you. The useful thing to do tonight is make tomorrow less unknown.
On this page
- Is it normal to be frightened the night before chemotherapy?
- The six fears patients describe, and what is true
- What to do tonight, and in the morning
- Questions that make the first day easier
- What this page cannot tell you
- Four things people are told before a first cycle
- Common questions before a first cycle
The short answer
Is it normal to be frightened the night before chemotherapy?
Yes, and almost everybody is. The fear before a first cycle is generally worse than the cycle itself, because what you are afraid of is an unknown built out of what you have heard from neighbours, relatives and the internet rather than out of what will actually happen to you.
Most patients say afterwards that the first day was easier than the week of waiting for it. That does not make the fear unreasonable. It means the fear is about the unknown, and the useful thing to do tonight is to make tomorrow less unknown.
Ask for the day to be described to you, hour by hour
Where to report, how long it takes, what the cannula or port feels like, what you will be given first, whether you can eat, who can sit with you. Knowing the shape of the day removes most of the dread.
Most of what you have been told is about somebody else
Drugs, doses and side effects differ enormously between patients. The relative whose story frightened you had a different illness, different drugs and a different decade of treatment.
Tell somebody tonight
The nurse, your oncologist, a relative, anybody. Fear that has been said out loud is smaller than fear kept private, and staff would much rather you asked at ten at night than sat awake.
Write your questions down now. Nobody remembers them in the chair tomorrow.What people actually fear
The six fears patients describe, and what is true
- That it will be unbearably painful
- The infusion itself is not usually painful. The cannula is a needle prick, and after that most people sit, read or sleep. Tell the nurse at once about any burning or stinging at the site.
- That the sickness will be uncontrollable
- Anti-sickness medicines have changed a great deal, and they are given before the chemotherapy rather than after you feel ill. If they are not working well enough, say so, because they can be changed.
- That losing hair will be unbearable
- It does not happen with every drug, and your team can tell you whether it applies to you. Where it does, patients describe the anticipation as worse than the event, and it grows back.
- That they will not be able to work or look after the family
- Most patients manage a good deal of ordinary life between cycles, and the pattern becomes predictable after two cycles. It is worth planning rather than assuming the worst.
- That it means the illness is very advanced
- Chemotherapy is used in many situations, including alongside surgery with the aim of clearing the disease completely. Ask what the intention of your treatment is; the answer is frequently more reassuring than the silence.
- That they will not survive it
- This is the fear nobody says out loud. Say it to your oncologist. It deserves a real answer about your own situation rather than being carried alone all night.
Not sure whether this applies to you?
Ask an oncologistPractical
What to do tonight, and in the morning
Small, concrete things. They work better than reassurance.
Write your questions on paper
Everything you have wondered about in the last week, in whatever order it comes. Hand the list over tomorrow rather than trying to remember it in the chair.
Worth asking
- What is the aim of this treatment
- What should I expect over the next week
Pack the bag and set out the clothes
Reports, medicine list, water, plain food, a shawl, a phone charger, something to read. Doing it tonight gives the evening a purpose and removes tomorrow's rush.
Decide who is coming with you
Somebody who will listen, take notes and not fill the silence with their own anxiety. One person is usually better than three in a busy day unit.
Their job
- Write down what is said
- Ask the questions you forget
Stop reading about it tonight
Late-night searching makes the fear worse without making you better informed, because most of what you find is about other people's drugs and other people's illnesses.
Do something ordinary this evening
A film, a walk, cooking, a phone call about something else. The night before does not have to be spent solemnly preparing, and most patients say afterwards that they wish it had not been.
Ask tomorrow
Questions that make the first day easier
- How long will today take, start to finish
- Can I eat and drink before and during it
- What will I be given before the chemotherapy
- What should I tell you about immediately
- How will I feel tonight and tomorrow
- Which days of this cycle are likely to be hardest
- What number do I ring after hours
- Which hospital do I go to at night
Being straight with you
What this page cannot tell you
It cannot tell you that it will be easy, and it will not pretend to. Chemotherapy is demanding and some cycles are genuinely hard. What it can tell you is that the first day is usually less frightening than the night before it, and that most of what you are dreading has a answer.
It also cannot tell you what your own treatment will do, because that depends entirely on your drugs, your illness and your body. Ask your team what to expect specifically; a general page cannot replace that.
Fear that stops you sleeping for many nights needs help
If the anxiety is constant, if you cannot sleep at all, if you are thinking of refusing treatment out of fear, or if you feel hopeless, tell your team. Support exists for exactly this and it is not a sign of weakness to use it.
Do not let anybody talk you out of treatment tonight
This is the moment when relatives and well-wishers arrive with alternative remedies and frightening stories. Decisions made out of fear at midnight are rarely good ones. Speak to your oncologist first.
The attendant is frightened too
The relative who has been calmly organising everything is usually carrying as much fear as the patient and showing none of it. Say so to each other; it helps both.
What to do next
Write your questions down now. Pack the bag. Ask tomorrow for the day to be described hour by hour, and ask what the aim of your treatment is. Tell somebody you are frightened, and stop searching the internet tonight.
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Commonly believed
Four things people are told before a first cycle
Drugs, doses, illnesses and years differ enormously. Their experience tells you almost nothing about yours. Ask your own team what to expect from your own regimen instead.
It is used in many situations, including alongside surgery with the aim of clearing the disease completely. Ask what the intention of your treatment is, because the answer is often more reassuring than the silence.
Anti-sickness medicines have improved a great deal and are given before the chemotherapy rather than after you feel unwell. If they are not working well enough, say so, because they can be changed.
Almost every patient is frightened before a first cycle, including the ones who look composed. Saying it out loud makes it smaller, and staff would far rather you asked than sat awake all night.
Questions we are asked
Common questions before a first cycle
Will the first cycle hurt?
The infusion itself is not usually painful. The cannula is a needle prick, and after that most people sit, read or sleep. Tell the nurse at once if you feel burning or stinging at the site.
How long will the day take?
It varies a great deal between regimens, so ask your team for your own answer. Plan for longer than you are told, because waiting for blood results and pharmacy is usually what extends it.
Will I be sick straight away?
Most patients are not. You will be given anti-sickness medicine before the chemotherapy starts. Ask what to take at home, when to take it, and who to ring if it is not working.
Can somebody sit with me?
Usually one person, and it varies by unit, so ask. Choose somebody who will take notes and stay calm rather than somebody whose own anxiety will fill the room.
I cannot sleep at all. What should I do?
Tell your team, tonight if you can and tomorrow if not. Sleeplessness before a first cycle is common and there is help for it. Do not simply endure several nights of it.
Should I read about the drugs I am getting?
Ask your team for written information about your own drugs, which is far more useful than searching. Late-night reading about other people's treatment reliably makes the fear worse.
What if I change my mind tomorrow?
Say so to your oncologist rather than simply not attending. They would much rather talk it through with you. Decisions made out of fear the night before are worth revisiting.
Does everybody feel like this?
Almost everybody, and most say afterwards that the waiting was worse than the day. That is not a reason to dismiss the fear, but it is worth knowing tonight.
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Patient stories
Hear it from people we have treated
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Sources
- Macmillan Cancer Support — Your feelings and cancer
- Cancer Research UK — Coping emotionally with cancer
- National Cancer Institute — Feelings and Cancer
This page is general information, not a prescription. Do not change or stop any treatment based on what you read here. If anything is worrying you, contact your own treating team — or call our helpline and we will help you reach the right specialist.
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