As the patient becomes more unwell – cancer

Symptoms can change for people living with breathlessness – they can become more difficult to manage. Some carers have found it helpful to know what to expect, so that they can feel more prepared.

What to expect

It is likely that patients’ symptoms will get more intense at some stage. They may need more medical appointments, hospital visits or treatments, as well as support from others for daily living.

‘Expect more trips to the hospital and know that you are certainly not failing’
– ‘Phil’, former carer for his mother

It isn’t possible to put a timeframe on how someone’s illness might change towards the end of living with cancer. For some, symptoms may gradually get worse over a number of weeks or months until the patient dies. For others, the symptoms of people living with cancer may suddenly get worse and they may need urgent medical help. This can be a particularly upsetting, stressful time for these patients and their carers. Carers can also find it difficult to adjust to times when things are much calmer, and there is less for them to do.

It may be that at some point it gets more difficult for the patient to say for themselves what they want to happen, so it’s important to have talked together, ahead of time, about what to do about future treatment decisions while you are both feeling well. For example, it might help to talk about whether they would like to have an Advance Directive or an Advance Decision to Refuse Treatment. The Macmillan website has more information about what these are.

Learn what ‘Advance decision to refuse treatment orders’ are and why it’s important that carers and patients make arrangements to have one

Common symptom changes

When caring for someone with breathlessness due to cancer, there are some general changes in symptoms to look out for as their illness progresses. This is not a complete list, and how each patient’s symptoms change will be unique to them. You will be better able to judge whether the patient’s symptoms are changing if you have a clear idea of what is a normal baseline level for them. Whenever you have any concerns or questions talk to your healthcare team – they are best placed to give you advice about the person you care for.

You might notice:
  • more breathlessness
  • loss of appetite and weight loss
  • pain
  • tiredness
  • difficulty sleeping
  • more infections. You can learn more about managing infections here.

In the video below, hear from healthcare professionals about how to get help as a patient with cancer becomes more unwell.

What you can do to help the patient

Talk to your healthcare team (e.g. district nurse, specialist nurse or GP) if you find it difficult to manage any symptoms the patient has. They may recommend the patient has a respite stay.

Look at the Macmillan website for helpful advice on how you can manage some of the difficult symptoms patients can have towards the end of their illness at home.

The impact on emotional health

It’s common for carers to feel drained, both physically and emotionally, as the patient’s symptoms start to worsen and they rely on you for even more support. You may feel you have very little time for yourself. At times like these it’s especially important to try and look after your own health and well-being even though may you feel reluctant or unsure about doing so.

‘A lot of people said (to me), “Cor, you’ve lost weight”. But, of course, you do, you know – anxiety and stress and everything’
– ‘Cathy’, former carer for her husband

What you can do to help the patient

More often than not, the patient will also be struggling with difficult emotions as symptoms change. Some patients may start to withdraw from their normal daily life. Encouraging the patient to talk honestly about their feelings can help. This could be talking with you, with other family or friends or with a trained professional such as a nurse or counsellor.

‘I don’t think my mum had ever really told me how she was struggling. She would always try and put a brave face on it’ – ‘Greg’, former carer for his mother

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Page last reviewed: 08/05/2020