Overview

This information explains how to get help with symptoms now that your cancer treatment has been stopped. It explains:

• who to contact when you need support
• when to get urgent help
• how to get help with managing non-urgent symptoms

You may find it emotional to read this information. If you do not feel ready, you can come back to it at another time. You could also give the information to a person who is helping to care for you.

If you cannot manage your symptoms at home, it is important to contact your team for guidance. This applies even if the symptoms are not listed here.

Who to contact for support

Previously, your cancer doctors, clinical nurse specialist (CNS) or the acute oncology (cancer) service at the hospital cared for you. Your care should have now been transferred to:

• your GP
• a community palliative care team (CPCT)
• in appropriate cases, a community head and neck team (CHANT)

If you need help with symptoms or have any concerns, you can contact your GP, community palliative team or cancer team. It is a good idea to keep a list of their phone numbers. You can then easily refer to this list when needed.

If you feel very unwell, call 111 for advice or go to your nearest emergency department (A&E).

Your GP and social services

Your GP can help you to manage some symptoms. They can also give advice about any social issues that you might have. Examples include:

• a carer to help you get washed or dressed
• help at home
• support with everyday activities, such as cooking

If you need support with day-to-day living due to illness, the NHS social care and support guide has useful information. It explains what support is available and where you can get help.

You can refer yourself to adult social services in your local area by calling the phone number on their website. There is an online search engine to help you find the contact details for social services in your borough.

If you do not have access to the internet, your GP can refer you to social services or give you their phone number. Otherwise, you can ask any other health professional for social services' contact details.

Community palliative care team

Palliative care offers specialist support for people facing a serious illness. It is not just for end of life care. 

The community palliative care team:

• supports you and your family to manage symptoms
• helps you to cope with how cancer affects your body and emotions
• works to improve the quality of your life by supporting you in your home

The team can give you medicines to help you manage your symptoms, such as:

• pain
• feeling sick (nausea)
• losing your appetite
• breathlessness
• changes to how you poo, including not pooing as often or finding it hard to poo (constipation)

Your community palliative care team includes doctors, nurses and pharmacists. They work closely with other health professionals, such as:

• your hospital team
• occupational therapists (who help to make it easier for you to do everyday tasks, if you have difficulties)
• physiotherapists (who help with issues that affect your movement)
• dietitians
• social workers

If you would like to be referred to the community palliative care team, you can ask your GP or cancer team. Otherwise, if you know your local community palliative care team, you can contact them directly.

Urgent symptoms

There are some symptoms that need urgent medical attention. If you have any symptoms listed here, contact your GP or community palliative care team immediately, or go to A&E. 

Being unable to poo for more than 3 days

It is important to contact your medical team if you:

• do not have a poo or have no stoma output for more than 3 days (a stoma is an opening made during surgery through the tummy wall that allows poo to pass out of the body into a disposable bag)
• also have tummy (abdominal) pain, feel sick or are being sick

These could be signs that there is a blockage in your bowel. If you have a blockage, this could be due to constipation (changes in how you poo) or your tumour.

You may be at higher risk of getting a blockage in your bowel if you have:

• gynaecological cancer
• cancer in the abdomen
• advanced cancer
• blood in your poo

Being unable to pee

There are several possible reasons why you may be unable to pee. They can include:

• severe constipation
• not being able to drink (you may then need fluids through a drip)
• a blockage or obstruction in the kidney or bladder (there are treatments to help with this)

Fluid and pain in your tummy (ascites)

If fluid builds up in your tummy, this is called ascites. It can be caused by cancer. Symptoms can include:

• pain
• shortness of breath
• feeling sick (nausea)
• being less able to move around

If you have these symptoms, you can contact your cancer team or community palliative care team. There are procedures to drain the fluid and help you to feel better.

Bleeding

If you have any bleeding from your bottom when you pee, cough or be sick (vomit), you need to get urgent medical help.

Non-urgent symptoms

You may have symptoms that do not need urgent medical attention. However, the earlier you get help with these symptoms, the easier it will be for you to manage them.

If you have any symptoms listed here, contact your GP or community palliative care team for advice.

Pain

You may start to get pain that is not controlled by your regular painkillers. If this happens, you can ask your GP or community palliative care team for a pain assessment. They can then suggest different treatments and medicines to manage your pain.

Constipation for less than 3 days

Constipation is when you:

• find it hard to poo
• do not poo as often as usual
• have less stoma output (that is, less poo in the disposable bag worn over the stoma)

This can be caused by treatments and medicines, or having less of an appetite.

If you have constipation that lasts for more than 3 days, this is an urgent symptom. You then need to get medical help straight away.

Breathlessness

You may notice changes in your breathing, such as:

• feeling short of breath
• chest tightness
• a cough

It is best to get help with breathlessness as soon as possible. Your GP or community palliative care team can then find the cause and recommend the most suitable treatment for you.

Feeling or being sick, losing your appetite and weight loss

Your GP or community palliative care team can give you anti-sickness medicines if you:

• feel sick (nausea)
• are being sick (vomiting)

You may find that you have less of an appetite and lose weight due to nausea, pain or constipation. Your team can find the cause of these issues and recommend the best way to manage them. They can also refer you to a community dietitian, especially if you are losing weight.

Extreme tiredness (fatigue) and reduced movement

You may notice that you:

• become tired more often
• are less able to do your usual tasks, such as getting dressed, cleaning and shopping
• are less able to move around than before, which can lead to falls

Your team can look for any causes of extreme tiredness and falls that it is possible to treat. You may need an assessment to see how you are managing at home.

If you speak to your GP or community palliative care team, they can refer you to social services for an assessment of your needs. They can also arrange for you to have an assessment of your mobility (ability to move around). This assessment may take place with:

• the community palliative care team
• a community therapies team
• the outpatient physiotherapy team at your local hospital

Symptoms in the last hours and days of life

The NHS and Marie Curie have information about likely changes to the body during the final stages of life. You can order a free booklet from Marie Curie, which tells your family, friends and carers what to expect. 

You can also talk to your community palliative care team about common symptoms in the last hours and days of life.

Useful information and support

The organisations listed in this section can give you useful information and support. 

Macmillan Cancer Support has information on end of life care, planning ahead and managing your symptoms. It can also help you to cope with the emotional effects of cancer.
Phone: 0808 808 0000 (7 days a week, 8am to 8pm)

Marie Curie supports people at the end of life and has information on symptoms.
Phone: 0800 090 2309 (Monday to Friday, 8am to 6pm and Saturday, 11am to 5pm)

NHS 111 offers medical help and advice from fully trained advisers. They are supported by experienced nurses and paramedics. 
Phone: 111 (24 hours a day)

You can also try calling one of these free helplines:

• Age UK, phone: 0800 055 6112 (every day of the year, 8am to 7pm)
• Independent Age, phone: 0800 319 6789 (Monday to Friday, 8.30am to 5.30pm)