Your first cycle
Going home after your first cycle
Four things: the medicines in your hand rather than still at the pharmacy, written instructions on when to take them, the date of the next cycle, and the number to call at night with the list of what should make you call it. People leave exhausted and relieved, these get skipped, and then at eleven at night somebody is working out whether a temperature matters from memory.
The short answer
What should be sorted before you leave the unit?
Four things: the medicines in your hand rather than still at the pharmacy, written instructions on when to take them, the date of the next cycle, and the number to call at night with the list of what should make you call it.
People leave the unit exhausted and relieved, and these get skipped. Then at eleven at night somebody is trying to work out whether a temperature matters, with no number and no instructions, from memory.
Ask before you stand up
It takes two minutes and it is the difference between a manageable first week and a frightening one. Nurses expect these questions; it is the patients who ask nothing that they worry about.
Write the answers down or photograph them. Nobody remembers accurately after a long day in a chair.Before you leave
The checklist
- All medicines actually collected, not left at the pharmacy counter
- Written instructions for each one: when, how many days, with or without food
- The date and time of the next cycle, and any blood test before it
- The helpline number, and the number for nights and weekends
- A written list of what should make you call, and what means going straight in
- How long the home precautions last for your particular drugs
- Whether you can drive, and when
- Any reports or paperwork for insurance or your scheme
- Confirmation of anything that changed today, and why
Not sure whether this applies to you?
Ask an oncologistGo to the nearest emergency department, saying clearly that the person is on chemotherapy, for: a fever or shivering uncontrollably · breathlessness or chest pain · a rash, or swelling of the face, lips or tongue · nothing staying down · no urine since the morning · severe stomach pain or a swollen hard stomach · bleeding that will not stop · confusion or being very hard to rouse. Do not give paracetamol to bring a temperature down before being seen.
That evening
What to do when you get in
Take the anti-sickness medicine at the time you were told, even though you feel fine. This is the single most important thing you will do all evening, and it is the one most often skipped because nothing has happened yet. Set alarms on the phone for every dose over the coming days.
Eat something light and keep drinking
A small plain meal rather than a celebration dinner, and sips of water through the evening. Do not lie flat straight after eating. Many people are hungry that night because of the steroids — eat, but keep it modest.
Set the house up
Helpline number and hospital name on the fridge. Thermometer somewhere findable. Water boiled and cooled. Curd, buttermilk and bananas in the fridge. Gloves and a bin bag near the bathroom. Ten minutes now saves a bad night later.
Do not be alone the first night
Not because anything is likely, but because the pre-medication leaves people drowsy and poor at judging their own condition. Someone who can take a temperature and make a decision is worth more than any amount of preparation.
Start the record
One line tonight: how you felt, what you ate, what you took. Keep it going daily through the cycle. It is what allows the team to make the next cycle easier, and it takes under a minute.
Expect a restless night if steroids were given. That is the medicine, not a bad sign.Leave a number, we will call you
One field. No form to fill in, and no charge for the call.
Ask before you go
The questions worth two minutes at the desk
Every one of these gets asked later by phone, usually at an inconvenient hour, when it could have been settled here.
About the medicines
Which do I take, when, and for how many days? Which must I not miss? What do I do if I am sick straight after taking one? Are any to be taken only if needed?
Get it written
- Names, times and number of days
- What to do if a dose comes back up
About what to expect
When am I likely to feel worst? When will my blood counts be lowest? What is normal in the first days, and what is not?
About calling
What should make me telephone? What means going straight to an emergency department? Which number do I use at night and at weekends?
Ask for the escalation list in writing rather than trying to remember it.About the household
How long do the home precautions last for my drugs? Is there anyone at home who needs particular care, such as someone pregnant? Can I be around children?
About ordinary life
Can I drive, and when? Can I work? Can I go out, and when should I avoid crowds? Is there anything I should not eat?
About the next cycle
When is it, and do I need a blood test beforehand? Where do I come, and what should I bring? What would delay it?
Being straight with you
What this page cannot tell you
It cannot give you your own instructions. Which medicines, for how many days, how long the precautions last and what your escalation thresholds are all depend on your drugs and your situation, and only your team can supply them. This page is a list of what to ask for, not a substitute for it.
It also cannot tell you how the first week will go. That varies more than people expect between drugs and between individuals. What it can do is make sure you are not working it out at midnight without a number to call.
What to do next
Before standing up from the chair, run through the checklist. On getting home, put the escalation list and the helpline number on the fridge, set the alarms for the anti-sickness medicine, and check there is a thermometer. Then start the daily record.
Questions we are asked
Common questions about going home
We left without the medicines. What now?
Call the unit today rather than waiting. The anti-sickness tablets need to start that evening to work properly, and going without them for the first days is the commonest reason a first cycle goes badly. Most units can arrange something quickly if you ring promptly.
Can I drive home?
Not after a first cycle. Pre-medication makes many people drowsy and you will not know how you react until afterwards. Ask your team about later cycles. If you feel sleepy, faint or unable to concentrate, do not drive whatever you were told.
What if I feel completely fine?
Expected, and common. Most effects appear over the days that follow rather than that evening, and the pre-medication is still working. Take the anti-sickness tablets on schedule anyway, and set the house up tonight rather than waiting to see whether you need it.
How do I know which number to call at night?
Ask specifically before you leave, because the daytime helpline and the out-of-hours route are often different. Write both on the fridge with the hospital name. If any of the emergency signs appear, go in rather than spending time trying to reach someone.
Should someone stay with me tonight?
For a first cycle, yes. Not because anything is likely, but because pre-medication leaves people drowsy and poor at judging their own condition. Someone who can take a temperature and decide whether to go in is the most useful thing in the house.
What should we have in the house?
A thermometer, boiled and cooled drinking water, curd, buttermilk, bananas and cooked rice, the medicines already collected, and gloves and a bin bag near the bathroom. Add rehydration sachets if your team has said they are suitable for you.
Can I go back to work tomorrow?
Do not commit to it before your first cycle, as you will not know how you react. Plan to be at home and treat anything you manage as a bonus. After a cycle or two you will know your own pattern and can plan work around it properly.
Nobody explained anything and we have already left. What do we do?
Call the unit tomorrow and ask for the instructions, the escalation list and the next date, and ask for them in writing or by message. This is a routine request. In the meantime, treat a fever as an emergency and go in rather than waiting for advice.
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Sources
- Cancer Research UK — Having chemotherapy
- Macmillan Cancer Support — Having chemotherapy
- National Cancer Institute — Chemotherapy to Treat 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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