The infusion day
What to ask before you leave the unit
Three answers: when the next cycle is, who to call and on which number at night, and what should make you call. Everything else can be sorted out later by telephone — those three cannot, because they are what you need at the exact moment you cannot reach anyone. People leave exhausted and relieved, and then a temperature reading appears at eleven at night.
The short answer
What must you not leave without?
Three answers: when the next cycle is, who to call and on which number at night, and what should make you call. Everything else can be sorted out later by telephone. Those three cannot, because they are the ones you need at the exact moment you cannot reach anyone.
People leave the unit exhausted and relieved, with the day finally over, and nobody wants to stand at a desk asking questions. Then at eleven at night a temperature reading appears and there is no number and no instruction.
Ask before you stand up from the chair
It takes two minutes. Nurses expect these questions and are glad to be asked — it is the patients who ask nothing that they worry about, because those are the ones who turn up late or not at all.
Write the answers down or photograph them. Nobody remembers accurately after a long day in a chair.The list
What to ask at the desk
- When is the next cycle, and do I need a blood test before it?
- Which number do I call in the day, and which at night and weekends?
- What should make me call, and what means going straight to hospital?
- Which hospital should I go to if I cannot reach anyone?
- Which medicines do I take, when, and for how many days?
- Which of these must I not miss, and which are only if needed?
- What do I do if I am sick straight after taking one?
- When am I likely to feel worst, and when will my counts be lowest?
- How long do the home precautions last for my drugs?
- Can I drive, work, and be around children?
- Has anything changed today, and why?
Not sure whether this applies to you?
Ask an oncologistAsk for the list of what means going straight to an emergency department rather than telephoning. It will include a fever or shivering uncontrollably, breathlessness or chest pain, nothing staying down, no urine since the morning, bleeding that will not stop, severe stomach pain, and confusion. Put it on the fridge. And confirm that paracetamol should not be given to bring a temperature down before being seen — that instruction surprises people and it matters.
The part that goes wrong most
Check the medicines before you walk away
More problems come from this than from anything else on the list. Prescriptions left uncollected at the pharmacy, instructions half remembered, a changed dose taken on the old schedule, or a tablet nobody realised had to start that same evening.
Have them in your hand, not on a slip
Actually collected, actually in the bag. A prescription still at the counter at eight in the evening is the commonest reason a first week goes badly, because the anti-sickness cover never starts.
Get the schedule in writing
Which tablet, what time, how many days, with or without food. Not explained verbally at a busy desk. Ask them to write it, or write it yourself and read it back to check.
Compare the boxes against last cycle
If something has been changed, added or stopped, notice it now rather than at home. Ask what is different and why. Changes made at a review get missed constantly and then taken on the previous schedule.
Set the alarms before you leave the building
Phone alarms for every dose, for the full number of days. Taking anti-sickness medicine late, or stopping early because you feel fine, is the single commonest reason a plan appears not to work.
If cost is the reason you might not collect something, say so at the desk. There are usually options.Leave a number, we will call you
One field. No form to fill in, and no charge for the call.
Before the door
The practical things people forget to ask
Beyond medicines and emergencies, a short list of ordinary questions that shape the next three weeks and are almost never asked because nobody thinks of them at the desk.
Driving, working and going out
Whether you can drive today and generally, whether work is reasonable, when to avoid crowds, and whether there is anything you should not eat. Ask about the specific things your life actually involves.
The household
How long the body fluid precautions last for your drugs, whether anyone at home needs particular care, and whether you can be around children and anyone pregnant. Short answers that prevent a lot of unnecessary fear.
Paperwork
Any reports or certificates you need for insurance, a scheme, or your employer. Far easier to request at the desk than to come back for, and easily forgotten until the day someone asks for it.
What to bring next time
Whether anything has changed about the next visit — a different location, an earlier arrival, a test beforehand, or a longer day. Ask whether blood can be taken the day before, which removes the longest wait from the day.
Ask what the next cycle will involve if it differs from this one. Surprises on the day are avoidable.Being straight with you
What this page cannot tell you
It cannot give you the answers, only the questions. The numbers, the thresholds, the precaution period and the medicine schedule are all specific to your treatment and your hospital, and a version copied from anywhere else would be wrong in the places that matter most.
It also cannot tell you what your unit will volunteer. Some give you a printed sheet with everything on it; some assume you will ask. Going in with the list means it does not matter which kind you are dealing with.
What to do next
Take this list to the next cycle on your phone or a slip of paper. Ask before you stand up. Check the medicines are actually in your hand. Set the alarms before you leave the building. And put the emergency list and the night number on the fridge when you get home.
Questions we are asked
Common questions about leaving the unit
If I can only ask three things, what should they be?
When the next cycle is, which number to call at night, and what should make me call it. Everything else can be sorted out by telephone later. Those three are the ones you need at the exact moment nobody is reachable.
We left without the medicines. What now?
Call the unit today rather than waiting. The anti-sickness tablets usually need to start that evening, and going without them for the first days is the commonest reason a cycle goes badly. Most units can sort something quickly if you ring promptly.
Is it alright to ask the nurses rather than the doctor?
Yes, and for most of this list the nurses are the better source. They know the practical answers — timings, numbers, what to watch for, what to bring next time — and they deal with these questions every day. Ask whoever is available.
What if the answers are different from last time?
Ask what changed and why, and get it written down. Changes made at a review are missed constantly and then the old schedule gets followed at home. Compare the boxes you are given against the previous ones before you leave.
Who should ask, me or my attendant?
The attendant, usually. The patient has had a long day, may be drowsy from pre-medication, and will remember less. Whoever asks should write the answers down and photograph them for the rest of the family.
Should I ask about the next cycle being easier?
Yes, if this one was hard — but the better moment is the doctor's review before the cycle rather than the desk on the way out. Say specifically what happened and ask what can be changed. That is how supportive plans get strengthened.
Can I call later if I forget something?
Yes, and you should rather than guessing at home. Units expect calls between cycles. This is exactly why getting the daytime number as well as the night one matters, and why both belong on the fridge rather than in one person's phone.
Is it rude to keep them while they are busy?
No. Two minutes at the desk prevents a phone call at midnight, an unnecessary emergency visit, or a week of medicines taken wrongly. Staff would far rather spend the time now. It is the patients who ask nothing that cause them concern.
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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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