Cancer care at home: help through treatment

The grid above is one 21 day cycle, and lengths differ by drug and by plan. Macmillan says resistance to infection is usually lowest 7 to 14 days after chemotherapy, and that mouth ulcers tend to appear 5 to 10 days after treatment. Somebody can leave the hospital feeling reasonably well and feel much worse a week later. Radiotherapy runs on its own rhythm, often short daily appointments with the tiredness building towards the end and carrying on afterwards.

A carer for four or five days after each session, with a lighter week in between, covers the part of the cycle that is hard to manage. What fits in one hour, two hours or half a day sets out what a visit of each length covers.

You agree the visits directly with the carer, so a week can be booked around the treatment dates. Tell the carer early if a session is postponed: under the client and carer contract a visit cancelled by the client is payable in full, apart from unplanned hospitalisation, illness, or another reason the carer agrees. Notice to end an hourly arrangement is 48 hours. Deposits, cancellation and notice has the terms.

Somebody being treated for cancer can apply through their GP for a medical exemption certificate, which gives free NHS prescriptions. What happens when an older person does not eat enough goes further into the eating and drinking a carer watches. The middle of a cycle is quiet for somebody living alone, and company is part of what a carer is paid for. Where that is the main need, companionship care costs less.

1. 1

   Get the 24-hour number and put it on the fridge

   Before the first cycle

   Everybody having chemotherapy should be given a number for their treatment team that is answered at any hour. Ask for it at the first appointment if it has not been handed over, and put it where the household can see it.
2. 2

   Keep a thermometer in the house and use it

   Any time they feel unwell

   Take a temperature whenever the person feels shivery, hot, cold or not right, and write the reading down with the time. Ask the team at the start which readings they want to hear about.
3. 3

   Ring that line rather than waiting or ringing elsewhere

   Day or night

   The NHS tells people having chemotherapy to call their care team now if they have a high temperature or other signs of infection, and to call 111 only if they are not sure how to reach the team.
4. 4

   Have the bag and the paperwork ready

   Just in case

   The team may ask you to come in. A bag with nightclothes, the treatment record or alert card and a list of current tablets saves an hour at a bad moment.

NICE guidance for the NHS says anybody having anticancer treatment, and the people looking after them, should be given written and spoken information about infection and about how and when to contact 24-hour specialist oncology advice. If nobody has given you that, ask. Infection is not the only reason to ring: teams also ask to hear about sickness or diarrhoea that will not settle, bleeding or bruising, breathlessness, and a mouth too sore to drink. In an older person an infection can also show itself as sudden confusion that comes on over a day or two, which is treated as an emergency in its own right. Hourly care after a hospital stay covers the first fortnight at home.

Where the journey is the main problem, carers who drive can be searched for directly, and their profile says whether they use their own car. A carer is paid for the waiting as well as the driving, so a treatment day is booked as one long visit.

Line care, pumps and dressings are done by staff trained for them, which in practice means the district nurses or the treatment unit, and sometimes a relative the nurses have trained. None of it is part of what a carer is booked for. A carer is there for the hours in between, which is most of the week. A task on the line, such as applying a prescribed cream, can sometimes be delegated to a named carer by a nurse who has trained and assessed them for that person: delegated healthcare tasks explains how that works. Can carers give medication? covers the ordinary medicine rules, and what carers are not allowed to do is the wider list.

Macmillan Cancer Support and Maggie's both support families as well as the person being treated. Ask the clinical nurse specialist what is available locally, because services attached to a hospital vary a great deal.

If the plan changes so that treatment is no longer aimed at curing the illness, the care at home changes with it, and a separate part of this site is written for that point rather than this one. Palliative care, end of life care and hospice at home sets out what each term means and what the NHS provides free, fast-track continuing healthcare covers NHS funding that a clinician can set in motion, usually within 48 hours. Palliative care can run alongside treatment, so asking about it does not mean that treatment is ending.