About this ebook

This eBook explains the different ways that cancer pain can be managed. It describes different painkillers and other ways to help manage pain.

It is for anyone affected by cancer who has pain. Family members, friends and carers may also find it helpful.

We hope it helps you deal with some of the questions or feelings you may have.

We cannot give advice about the best treatment for you. You should talk to your doctor, who knows your medical history.

How to use this eBook

This eBook is split into sections to help you find what you need. You do not have to read it from start to finish. You can use the contents list to help you.

It is fine to skip parts of the booklet. You can always come back to them when you feel ready.

At the end of the eBook there are details of other organisations that can help.

Recording the pain can help you and your healthcare team see what makes it better or worse. You can download a copy of our pain diary from macmillan.org.uk/paindiary to help you do this.

Quotes

In this eBook, we have included quotes from people who have experienced pain as a result of cancer, or cancer treatment. These are from people who have chosen to share their story with us. To share your experience, visit macmillan.org.uk/shareyourstory

For more information

If you have more questions or would like to talk to someone, call the Macmillan Support Line free on 0808 808 00 00, 7 days a week, 8am to 8pm, or visit macmillan.org.uk

If you would prefer to speak to us in another language, interpreters are available. Please tell us, in English, the language you want to use.

If you are deaf or hard of hearing, call us using NGT (Text Relay) on 18001 0808 808 00 00, or use the NGT Lite app.

We have some information in different languages and formats, including audio, eBooks, easy read, Braille, large print and translations. To order these, visit macmillan.org.uk/otherformats or call 0808 808 00 00.

About pain

About cancer pain

Many people with cancer will have pain at some point in their illness. But for most people, pain can be managed using:

- different medicines

- non-drug treatments and complementary therapies

- things you can do yourself.

How much pain someone has is not related to how advanced the cancer is. Pain is very personal and everyone’s experience with pain is different. Two people with the same type of cancer may have different amounts of pain.

Pain does not always get worse as cancer develops. Some people may never have pain. But pain is more common in people with advanced cancer.

We have more information in our booklet Coping with advanced cancer. Or you can visit macmillan.org.uk/advanced-cancer

Other physical things can affect how we feel pain. For example, pain may feel worse when we are tired.

Our home, social or work life can have a positive or negative effect on pain. For example, not being able to get out and see friends or go to work may make pain feel worse. But being with people and doing something you enjoy may help the pain feel better.

Emotions such as anxiety and depression can make pain feel worse. But people may also develop these problems if pain is not controlled.

It is important to tell your healthcare team if you have pain. Different health professionals may be involved in treating and controlling your pain.

When pain is well managed, you can keep doing things that are important to you. You may feel more in control and able to enjoy life.

Treating pain involves finding the pain relief that works best for you. Pain control is more effective when it starts as soon as possible. It should continue for as long as you need it. Getting emotional support can also help to relieve pain.

We have more information about cancer and your emotions at macmillan.org.uk/emotions

Causes of pain

Pain is usually caused by an injury or illness in the body. Nerves in the damaged part of the body send signals to the brain. The brain responds by making us feel pain or discomfort.

Anyone with cancer may get pain. There are different reasons why people with cancer have pain. Pain may be caused by the cancer:

- pressing on tissues or nerves, or on bone or an organ nearby

- blocking a part of the body, for example the bowel, and stopping it working normally.

Pain can also be caused by the following cancer treatments:

- Surgery may cause nerve or tissue damage in the area.

- Radiotherapy can damage the skin or nerves in the treated area.

- Anti-cancer drugs can cause side effects such as a sore mouth, nerve damage (peripheral neuropathy), or muscle or joint stiffness or pain.

We have more information at macmillan.org.uk/treatment-types and in our booklets Understanding radiotherapy and Understanding chemotherapy.

Pain that is due to treatment will often get better in the weeks after treatment has finished. If side effects do not improve, or if you develop new side effects, always tell your cancer doctor or nurse.

People who have recovered from cancer may sometimes have pain from late effects of treatment. Late effects are side effects that do not improve after treatment or start months or years later.

If you get a new ache or pain, you may worry that the cancer has come back or is getting worse. This is a common worry. But a new pain does not always mean the cancer has returned or got worse. Always tell your doctor about any new pain or symptom. They can then check what is causing it and treat it.

We have more information in our booklet Worrying that cancer will come back.

Some people have pain from other health conditions, such as arthritis or diabetes. Tell your cancer doctor or nurse about any other health conditions you have.

And if you have specialists for other health conditions, tell them about any pain treatment you are having. Your pain treatment plan should include other conditions that cause pain as well as cancer.

Types of pain

Your doctors or nurses may talk about pain in different ways. There are many types of pain. It can be described or grouped depending on:

- how long it lasts

- what makes it worse or better

- the parts of the body that are affected.

Acute pain

This often starts suddenly and feels ‘sharp’. It usually lasts days or weeks. Acute pain usually stops when the cause of the pain has been treated, or tissue in the area has healed.

Acute pain can be caused by things such as:

- an operation

- a broken bone

- an infection.

If acute pain is not relieved, it may become chronic pain.

Chronic pain

Chronic pain lasts for longer, usually for 3 months or more. It may be caused by the cancer. Sometimes it can be due to an ongoing side effect of cancer treatment or a late effect of cancer treatments.

Chronic pain is sometimes called persistent pain.

Breakthrough pain

If you are taking regular painkillers for chronic pain, you may still feel sudden pain. This is called breakthrough pain. It is common and usually feels like the chronic pain, only worse.

Breakthrough pain may happen because:

- the effect of the regular long-acting painkillers has worn off and the dose is not high enough

- the pain is worse at a certain time of day

- you make a sudden movement, or you cough.

Sometimes it is not clear what has caused the breakthrough pain.

Breakthrough pain can last for a short time. It may be treated with a short-acting painkiller. People who take long-acting painkillers will often use short-acting painkillers when they need to. Your doctors may need to increase the dose of long-acting painkillers if their effect is wearing off too soon.

You may find that a certain activity, such as washing or having a dressing changed, causes breakthrough pain. If this happens, you can take a short-acting painkiller a short time before the activity. This will help prevent breakthrough pain.

Bone pain

Cancer that has spread to the bones (secondary bone cancer) can cause pain. The pain can feel different to different people but may be a dull ache that does not go away. It is often worse when you move.

Cancer that starts in the bones (primary bone cancer) can also cause pain. Primary bone cancer is less common than secondary bone cancer.

We have more information in our booklets Understanding primary bone cancer and Understanding secondary cancer in the bone. You can also visit macmillan.org.uk/bone-cancer and macmillan.org.uk/secondary-bone-cancer

Soft tissue pain

This is when there is damage to, or pressure on, your organs or muscles. For example, when the liver is swollen it causes pain and discomfort in the tummy (abdomen).

Nerve pain (neuropathic pain)

This is caused by pressure on the nerves or by nerve damage. This may be due to the cancer or cancer treatments. You may have nerve pain at some times but not others. The area may feel numb or sensitive. The pain may be:

- burning or tingling

- stabbing or shooting

- like pricking, tingling or numbness on the skin.

Your doctor can prescribe drugs and other treatments to treat nerve pain.

Referred pain

An injury or problem in one part of the body may sometimes cause a person to feel pain in a different part of the body. For example, someone with a swollen liver may feel pain in their right shoulder. This is because pain messages from the liver travel along the same nerves as messages from the skin of the right shoulder. The brain confuses them and thinks the pain is coming from a different place.

Phantom pain

Some people experience pain in a part of the body that has been removed. For example, they may feel pain after having a limb removed (amputated), or a breast removed (mastectomy).

Phantom pain can cause different pain sensations which are very real to the people who experience it. It can improve with time and may eventually go away. It may be complicated to treat and is usually managed by expert doctors at a pain clinic.

Talking about pain

It is important to tell your doctor or nurse if you have pain and how it affects you.

Some people do not want to talk about the pain they have. They may feel they are complaining and that they should accept having pain. They may worry that the pain means the cancer has got worse. Or they may be anxious about becoming addicted to painkillers.

But controlling pain is an important part of your care. If your pain is well managed, it means you can do more of the things you want to do. This can help you stay more positive and active.

You can help manage your pain by:

- being open with your healthcare team about the pain

- describing the pain, where it is and how it affects your life

- telling them if and when the pain gets worse or lessens

- talking to them about any worries you have about the pain relief options.

Having a pain assessment

Your doctor or nurse will start by asking you different questions about the pain and how it is affecting you. This is called a pain assessment. A pain assessment will help your doctors to give you the best painkillers or treatment.

They will ask you to describe the pain. If you are keeping a pain diary they will also want to look at this. Keeping a record of the pain may show a pattern, even if you have notes for only a few days. This can be used to improve your pain control.

Your doctor will also usually examine you. If they need to check the cause of the pain, they may arrange some tests for you.

All this information helps your team, you and people caring for you to plan the best way to manage the pain.

Ways to describe pain

Describing the pain helps your doctors and nurses understand the type of pain you have. This is important to help them find the best treatment for you.

Sometimes it can be hard to describe pain. The questions below will help. Your family or friends may be able to help if you are feeling too unwell or have too much pain to answer questions.

Where is the pain?

Is the pain in one part of your body, or in more than one place? You can use a diagram like the one in our pain diary to mark where the pain is.

What is the pain like?

You might use the following words to describe your pain:

- aching

- tender

- sharp

- shooting

- burning

- nagging

- intense

- stabbing

- tingling

- dull

- throbbing.

Our pain diary has more words you may find helpful to describe your pain.

How bad is the pain?

There are different ways of describing how bad pain is. Your doctors may ask you to describe your pain as:

- mild

- moderate

- severe.

There are different scales that can be used to indicate how bad the pain is. Some people use a number scale. They will ask you to measure your pain on a scale of 0 to 10, where 0 means no pain, and 10 means severe pain.

Other people may use pictures of faces to help you describe the pain. This is called a pain faces scale. There is an example of this type of scale at wongbakerfaces.org

Be as clear as you can when describing how bad the pain is. This will help your doctors plan the best way to treat it.

When are you in pain?

- Are you in pain all the time, or only some of the time?

- Is it better or worse at night?

- Does it keep you awake or wake you up?

Does anything make the pain better or worse?

- Do you feel better or worse when you are standing, sitting or lying down?

- Does a heat pad, hot water bottle or ice pack help?

- How much do painkillers, such as paracetamol, help the pain?

- How long do the painkillers last?

- Does doing an activity like reading, listening to music or watching TV reduce the pain?

- Has anything else helped the pain in the past?

How does the pain affect your daily life?

- How does the pain affect what you can do?

- How does the pain affect your sleep and your mood?

- Can you sit long enough to eat a meal?

- Does the pain stop you from concentrating?

- Does it affect your social life or your sex life?

It is important for your doctor or nurse to understand the problems the pain is causing you. This will help them plan the best way to manage the pain.

Who can help you treat and manage pain?

Different health and social care professionals may be involved in managing your pain. It is important that you and the people around you know who to contact if you have problems.

If you are at home, your GP will usually be your first point of contact. If you are in hospital, it is important to talk to the nurses and doctors looking after you. If you are having cancer treatment, you may have contact numbers for your cancer nurse or doctor. You can contact them directly if you have problems.

You may have a specialist symptom control nurse who visits you at home. Or you may attend a pain clinic. It depends on your individual situation. If you are not sure who you should contact, ask your GP.

GP

When you are at home, your GP can talk to you about medicines or treatments to help control pain. They can prescribe painkillers and check with you to see how well they are working. They can increase the dose of the painkiller or change you to a different drug if needed. Your GP can also contact your cancer doctor or nurse for further advice.

Your GP can arrange for a district nurse to visit. They can also refer you to other health professionals such as a specialist palliative care team or a pain team.

Cancer doctor or nurse

If you see your cancer doctor (oncologist) or nurse regularly, it is important to tell them about any pain you have. They can explain what is causing the pain and how to treat or control it. Some people may need tests to find out the cause of the pain.

Your cancer doctor or nurse may ask you to contact them if you have pain, or if it gets worse. It is important to follow their advice.

District nurse

A district nurse can visit you at home to help you manage your pain. They can check that your pain medicines and treatment are working. They can advise you about:

- taking your medicines

- different ways of managing the pain

- getting equipment that helps make you more comfortable.

‘Lyn did go into a hospice for 2 weeks for some pain management but then came home again.’ Maurice, who cared for his wife Lyn

Physiotherapist

A physiotherapist is someone who gives advice about exercise and mobility.

Seeing a physiotherapist can be helpful in certain situations. They may be able to show you different ways of moving to help manage the pain. If pain is affecting how far you can walk, they can suggest ways to make getting around easier. For example, they can arrange for you to have a wheelchair.

Occupational therapist (OT)

An occupational therapist is someone who gives information, support and aids to help people with tasks such as washing and dressing. An OT can help provide equipment to make you more comfortable. For example, they may suggest special cushions or mattresses. If you have difficulty moving around, they can arrange handrails and ramps for your home to help you move more easily. They can also suggest ways to improve your energy levels and be more active.

Pharmacist

A pharmacist can check your prescription, give you advice about your medicines and tell you how they may affect you. Tell your pharmacist if you are buying any over-the-counter medicines. They can tell you whether it is safe to take them with your prescribed painkillers and other drugs.

Specialist palliative care team

Specialist palliative care doctors and nurses are experts in managing symptoms such as pain. They also provide emotional support. Specialist palliative care teams work in hospitals, in the community and in hospices. The team may also include:

- a physiotherapist

- an occupational therapist

- a counsellor or psychologist.

Hospital teams can help you with pain control if you are:

- going to an outpatient clinic

- in hospital.

They will also make sure your GP is kept up to date. They may also refer you to a community palliative care team to provide ongoing support when you are at home.

Community palliative care teams are usually based in hospices. They can visit you at home or see you at an outpatient appointment. Community specialist palliative care nurses work closely with your GP, district nurse and other hospital services. They will tell you more about how they can help, how to contact them and when they are available.

‘My sister was so patient with me. I would get frustrated at being in pain, and at what I felt was a slow recovery.’ Nav, diagnosed with bowel cancer

Counsellor or psychologist

Some people find it helpful to see a counsellor or psychologist. This is a person who gives advice about managing feelings and behaviours. They can help you understand things that may be causing you pain or making it worse. They can help you find ways of:

- coping with the pain

- dealing with any worries or emotions that may be making the pain worse.

Pain team

Many hospitals have specialist pain teams. The team includes doctors, nurses and usually an anaesthetist. Some teams also have a psychologist.

Your GP, cancer doctor or specialist palliative care team can refer you to a pain team. This can be very useful if your pain is difficult to control or you need a nerve block or other specialist treatment.

Hospice

Sometimes it can help to spend some time in a hospice having your pain, symptoms and other problems treated. This may be for 1 to 2 weeks. Your community specialist palliative care team or GP can arrange this for you.

In the hospice, the doctors and nurses can adjust your medicines to get better control of your pain. They can often do this more quickly than if you were at home. Once your pain is controlled, you can go home again. At home, your GP and community specialist palliative care team can continue to help you. Your GP will know about community palliative care and hospice services in your area.

Managing pain with medicine

Painkillers and ways of taking them

Medicines used to treat pain are called analgesics. Analgesics are often called painkillers. This is the term we use in this eBook. There are lots of different painkillers. They treat different levels and types of pain.

You may be given other drugs as well as painkillers to help relieve pain. These include drugs to treat bone pain called bisphosphonates. You may also be given steroids to reduce swelling. We have more information at macmillan.org.uk/supportive-treatments

Your doctor or nurse will regularly assess your pain to make sure you are taking the right combination of medicines for you. Painkillers are usually prescribed by doctors, but some nurses can also prescribe them.

Taking painkillers regularly

Pain that continues for more than 3 months is often called chronic or persistent pain. If you have chronic pain, you may need to take painkillers regularly to control it.

Always take your painkillers at regular intervals as prescribed. This is important to make sure they work as well as possible. The aim is for pain control to be constant, so you should not be in pain when you take the next dose. Delaying taking painkillers can make your pain worse. It may then take more time and a higher dose of painkillers to get your pain back under control.

If you have been given painkillers for breakthrough pain, do not wait for the pain to get bad before taking them.

It is important to tell your doctor or nurse if your pain gets worse. Then they can treat it before it becomes harder to control. You may need your painkiller dose adjusted or have a different painkiller. It can sometimes take time to get the right painkiller and dose.

Ways of taking painkillers

Tablets and capsules

You usually take painkillers as tablets or capsules. Tell your doctor or nurse if you find these hard to swallow. Many painkillers are available as liquids and some can be dissolved in water.

If you have a feeding tube, you will be able to have some liquid or soluble painkillers through it. We have more information at macmillan.org.uk/tube-feeding

Skin patches

Some painkillers can be absorbed through the skin. You have these as a patch you put on your skin. This slowly releases a constant amount of painkiller. A patch can be helpful for people who have difficulty swallowing or find it hard to remember to take their painkillers regularly.

Buccal and sublingual medicines

These are painkillers that are absorbed through the lining of your mouth, so you do not have to swallow. You put them between your gum and your cheek (buccal) or under your tongue (sublingual).

Injections

You can also have painkillers as an injection:

- under the skin (subcutaneous)

- into a muscle (intramuscular)

- directly into a vein (intravenous).

Through a pump

Painkillers are sometimes given continuously over a set time through a pump. There are different types of pump used for different reasons. A syringe containing the painkiller is placed in the pump and connects through a tube to 1 of the following:

- A fine needle placed just under the skin. The pump used is called a syringe pump. It can be used to manage cancer pain in different situations.

- A fine needle placed into a vein. This is usually done after surgery for short-term pain control.

- A fine plastic tube placed in your back that goes into the space around your spinal cord (epidural and intrathecal). This is done by an anaesthetist and used after certain types of surgery. But it can also be used to control cancer pain that is difficult to manage.

Syringe pump

A syringe pump is a small portable pump that can be used to give different medicines. It is sometimes called a syringe driver.

A syringe pump may be used if:

- you are feeling sick, or being sick

- it is difficult for you to swallow tablets

- your pain is not being well controlled with tablets or injections.

A syringe containing the painkiller is attached to the pump. The pump delivers a continuous dose through a small, thin needle placed just under your skin. You can have other drugs through a syringe pump, such as anti-sickness drugs, as well as painkillers.

A nurse will usually change the syringe every 24 hours. You can have a syringe pump for as long as you need it. This might be at home or in hospital.

Having a syringe pump does not stop you moving around as usual. You can carry it in a pocket or bag. You can go out shopping or for a meal wearing the pump.

Suppositories

Some painkillers can be inserted into the back passage (rectum). The drug is absorbed through the lining of the rectum.

Gels or creams you put on skin

If the pain is in one area (local), rubbing a gel or cream on to the skin may help relieve it. For example, non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen are available as gels.

There are also gels or plasters that contain local anaesthetics. These are sometimes helpful. Creams containing menthol may also help with pain.

Another cream called capsaicin may be used to treat nerve pain. Capsaicin is the substance that makes chilli peppers hot. Your doctor needs to prescribe this.

Ask your doctor or nurse for advice first. Do not use any gels or creams on skin that is inflamed or broken. Wash your hands after applying any cream or gel. Always tell your doctor or nurse that you are using them.

Nasal sprays

Some painkillers can be sprayed into the nose. They are absorbed through the lining of the nose.

Gas and air (Entonox®)

This is a painkiller that you breathe in. You sometimes have it to reduce pain before procedures such as a bone marrow test or a dressing change. It is only available in some hospitals.

Types of painkiller

Pain is often described as being mild, moderate or severe. Different types of painkillers can be effective for different levels of pain. Once your doctors and nurses have assessed your pain, they will prescribe the best painkillers to help control it. You may also be given other drugs to help relieve pain. These include steroids and muscle relaxants.

To get your pain under control, you usually start by taking a short-acting painkiller. This provides quick pain relief that lasts until you take the next dose. You usually need to take short-acting painkillers every 4 to 6 hours. The dose can be adjusted until your pain is controlled. When the doctor knows the dose you need, they may change you to a slow-release or long-acting painkiller. You usually need to take long-acting painkillers twice a day.

Treating mild pain

If pain is mild, it can often be controlled with simple painkillers such as:

- paracetamol

- non-steroidal anti-inflammatory drugs (NSAIDs) – for example, ibuprofen.

You can buy these drugs from a pharmacy (chemist) or supermarket. Take them as explained in the packet. You may need to take some medicines with food, or after eating.

Other medicines you can buy, such as cold and flu remedies, may also contain paracetamol or anti-inflammatory drugs. Be careful that you do not take more than the recommended dose of any painkillers. If you are unsure, check with a pharmacist before buying any medicines.

Paracetamol

Paracetamol can be used for most types of mild pain. It does not cause many side effects, but it is very important not to take more than the recommended dose. Higher doses can damage the liver. If you think you have taken too much, talk to your doctor or nurse as soon as possible.

Anti-inflammatory drugs

Non-steroidal anti-inflammatory drugs (NSAIDs) are often used to relieve pain and reduce inflammation and swelling. They may be taken on their own or with other types of painkillers.

Ibuprofen is an NSAID that has different brand names, including Brufen® and Nurofen®. You can buy these drugs from a supermarket or pharmacy. Check with your doctor or nurse before taking NSAIDs. They do not work for everyone. They should not be taken with some medicines.

Other anti-inflammatory medicines, such as diclofenac and naproxen, need to be prescribed by a doctor.

NSAIDs can cause indigestion and may irritate the lining of the stomach. Your doctor may prescribe another drug to help protect your stomach. If you have had problems with your stomach, your doctor may advise taking a different type of painkiller. If you have muscle or joint pain, they may suggest anti-inflammatory skin patches or gel that you rub into the skin.

When taking these drugs, always check the recommended dose on the packet and never take a higher dose.

Drugs for mild to moderate pain

Doctors usually treat mild to moderate cancer pain with drugs called opioids. These are sometimes called ‘morphine-like’ medicines. There are different types of opioids and some are stronger than others. Opioid drugs used for mild to moderate pain include:

- codeine phosphate

- dihydrocodeine (DF118 Forte®, DHC Continus®)

- tramadol.

Some drugs combine an opioid with paracetamol. For example, co-codamol is a combination of codeine and paracetamol. There is a limit to the number of these tablets you can take in a day. If you are prescribed a combination drug and it is not controlling your pain, tell your doctor, so they can give you stronger painkillers. Some doctors prescribe a low dose of a stronger opioid to treat mild to moderate pain.

We have the answers to common questions about painkillers.

Drugs for moderate to severe pain

Moderate to severe pain is usually treated with strong opioids. The most commonly used ones are:

- morphine

- oxycodone

- fentanyl

- buprenorphine

- diamorphine.

Other opioids that are less commonly used include:

- tapentadol

- methadone

- alfentanil.

Your doctor usually prescribes a low dose of the opioid drug to start with. They gradually increase the dose until your pain is well controlled.

It can take a few days to adjust to taking a stronger opioid, or a higher dose of opioid.

Tell your doctor or nurse if you have side effects from the drug they have prescribed. They may be able to prescribe a different type of strong painkiller that does not cause the same side effects.

Your doctor may prescribe other drugs, such as paracetamol or ibuprofen, to take regularly along with strong painkillers. They often work well when given together, so it is important to take these as well.

Morphine

You can take morphine as:

- short-acting tablets

- liquid that you swallow

- long-acting tablets or capsules

- a short-acting injection

- suppositories inserted into the back passage (rectum).

Morphine is known by different brand names. Short-acting preparations include Oramorph® and Sevredol®.

Long-acting preparations include Morphgesic SR®, MST Continus®, MXL® and Zomorph®.

You usually take a short-acting type of morphine every 2 to 4 hours. This is usually as a tablet or a liquid. Your doctor or specialist nurse will tell you how often to take it. Liquid morphine has a bitter taste but mixing it with a fruit drink can help.

When the doctor knows how much morphine you need over 24 hours to control the pain, they usually change you to long-acting drugs. These drugs release the dose of morphine slowly over 12 or 24 hours. You may still need to take short-acting morphine in between if you get breakthrough pain.

Taking both long-acting and short-acting morphine gives you better control of the pain. This helps you to do the things you want without too many changes to your daily life.

You can also have morphine as an injection under the skin or through a syringe pump.

Oxycodone

If you cannot have morphine, or it is not working well for you, your doctor may prescribe oxycodone.

You can take oxycodone as:

- short-acting tablets, capsules, or liquid that you take every 4 to 6 hours

- long-acting tablets that you take every 12 hours

- an injection given under the skin or continuously through a syringe pump.

There are many different brand names of oxycodone.

Short-acting preparations include Lynlor®, OxyNorm® and Shortec®. Long-acting preparations include Ixyldone®, Longtec® and OxyContin®.

Fentanyl

You may have fentanyl once your doctor or nurse has worked out the dose of opioid you need.

Fentanyl patches

Fentanyl patches are waterproof plasters you stick on your skin. They release the drug at a constant rate through your skin. You change the patches every 3 days. You put the new patch on a different area of skin.

When you first use the patch, it takes around 12 to 24 hours for the fentanyl to reach the correct level in the blood. During this time, you usually need to take a short-acting opioid drug, to keep the pain under control.

If you are using fentanyl patches, it is important to do the following:

- Take the old patch off before applying a new one.

- Write the date on the patch when you apply it to remind you when to change it.

- Place patches on areas of dry flat skin that have little or no hair.

- Stop the patch from getting hot by keeping it away from the sun, hot water, heat pads and hot water bottles.

- Let your doctor or nurse know if you have a temperature. This may affect how the medicine is absorbed through your skin.

- Tell your nurse if the patch causes a skin rash or itching.

There are several different brand names of fentanyl patches. They include Durogesic® and Victanyl®.

Other ways of taking fentanyl

You can take fentanyl by mouth, in several different ways. You put the following drugs between your cheek and gum:

- a short-acting lozenge called Actiq® or Cynril®

- a tablet called Effentora®

- a film that dissolves called Breakyl®.

You can also take fentanyl as a tablet you put under the tongue called Abstral®.

It is also available as a nasal spray (Instanyl® or PecFent®).

The drug is absorbed quickly into the body from your mouth or nose. Fentanyl given this way is usually for breakthrough pain.

Buprenorphine

This may be given as a:

- low-dose skin patch you change every 7 days

- high-dose skin patch you change every 3 to 4 days.

- tablet you dissolve under the tongue every 6 to 8 hours.

Diamorphine

Diamorphine is given as an injection. It is usually given continuously through a small needle under the skin connected to a syringe pump. Diamorphine changes into morphine in the body. You may have diamorphine if you are being sick, or if you find it difficult to swallow tablets or liquids.

Tapentadol

Tapentadol (Palexia®) can be given as:

- short-acting tablets

- a short-acting liquid

- long-acting tablets.

Methadone

Methadone (Physeptone®) may be given as:

- a tablet

- a liquid

- an injection, but this is rare.

Methadone is usually only given under close supervision form a specialist palliative care doctor or pain doctor.

Alfentanil

Alfentanil (Rapifen®) is a strong painkiller that is given by injection or continuously through a syringe pump. It is more likely to be used if your kidneys are not working well.

We have the answers to common questions about painkillers.

Side effects of painkillers

Some people get side effects from painkillers, especially opioids. But they will not affect everyone, and most side effects improve after a few days. We have explained some of the common side effects here.

Drowsiness

Strong painkillers may make you feel drowsy when you first start taking them. This usually improves within a few days once you get used to the dose. If you are still feeling drowsy after a week, talk to your doctor or nurse. They can check the dose and see if you are taking any other medicines that might cause drowsiness.

If you feel drowsy, avoid things like driving or operating machinery. Alcohol can make drowsiness worse. It may be better to avoid it, or to only drink small amounts.

You should not drive when you start to take strong painkillers or if the dose has changed. This is because they may slow your reactions. Your body needs time to get used to the medication and dose.

If you get drowsy after you have been taking strong painkillers for a while, tell your doctor or nurse. This sometimes happens if you have had treatments to shrink the cancer, which has helped to reduce the pain.

Constipation

Constipation is a common side effect of strong painkillers. Your doctor will need to prescribe you laxatives. There are different types of laxative. Some soften stools (poo) and make them easier to pass. Others stimulate the bowel to push the stools along more quickly. You may need a combination of laxatives to prevent constipation.

Do not take any laxatives without checking with your doctor, nurse or pharmacist first.

To help prevent constipation:

- try to drink plenty of fluids

- eat more high-fibre foods such as wholegrain bread, cereal, fresh fruit, dates, dried apricots, raisins, prunes, prune juice and nuts

- avoid or reduce foods that make you constipated, such as cheese or eggs

- try to do some gentle exercise if possible.

We have more information at macmillan.org.uk/constipation

Feeling sick (nausea)

Some people feel sick for a few days when they start taking painkillers. Some people may occasionally be sick (vomit). This usually gets better within a week. Your doctor may prescribe an anti-sickness (anti-emetic) drug for at least the first week of treatment. If it does not improve, tell your doctor. They may need to change your painkiller or the anti-sickness medicine.

We have more information at macmillan.org.uk/nausea-vomiting

Dry mouth

Strong painkillers can make your mouth dry. If this happens, tell your doctor or nurse. There are different things that can help:

- taking regular sips of water – fizzy water may feel more refreshing

- sucking ice cubes or lollies

- chewing sugar-free gum

- using an artificial saliva product

- keeping food moist by adding sauces and gravies.

Other side effects

Some people have other side effects with painkillers. These include:

- feeling forgetful or confused

- vivid dreams and hallucinations (seeing things that are not real)

- feeling dizzy or faint

- lower blood pressure

- slower, deeper breathing.

If you have any of these, or any other side effects, let your doctor know straight away. They can change your dose of painkiller or give you another type. Some strong painkillers may suit you better than others.

Common questions about painkillers

Some people have concerns about pain medicines, especially strong painkillers like morphine. If you are worried about the drugs you have been prescribed, you may be less likely to take your pain medicines. This can make it harder to control the pain.

Talk to your doctor or nurse about any concerns you have and ask them any questions you want to. Your healthcare team is used to talking about these things. There is no silly question. And being able to talk through your concerns will probably help you feel more comfortable about taking the drugs.

Below are some questions and answers that may help.

When should I start taking painkillers?

Start taking your painkillers as prescribed by your doctor, when you have pain. Sometimes people think they should delay using painkillers for as long as possible. But there is no need to delay taking them. If you wait until the pain gets really bad, it will be harder to get the pain under control. It also means you will be in pain when you do not need to be.

Does taking a strong painkiller mean the cancer is advanced?

Doctors use strong painkillers (such as morphine), to treat severe pain from other causes as well as cancer. They sometimes use strong painkillers for moderate or mild pain.

Having morphine does not mean the cancer is more serious. The important thing is that you have the right painkiller in the right dose to treat your pain. If your pain improves, your doctor or specialist palliative care nurse may reduce the dose or change you to a milder painkiller.

Is there a maximum dose for strong painkillers?

There is no maximum dose for strong painkillers. The right dose is the one that works for you. If you have pain, do not increase the dose without talking to your doctor or specialist palliative care nurse first. Suddenly increasing the dose is dangerous. If you take your painkillers as prescribed, you will not overdose.

Will I become addicted to painkillers?

Addiction is rare when a strong painkiller is used correctly to relieve cancer pain as prescribed by your doctor. If the painkiller is helping to relieve your pain, you are unlikely to become addicted to it.

If you are worried about becoming addicted, talk to your doctor or specialist nurse. If your family and friends are also concerned, you could ask them to come to an appointment with you.

Can I stop taking a strong painkiller?

If your pain improves, you may be able to reduce and then stop taking a strong painkiller. But it is important that you do not suddenly stop taking it. Talk to your doctor first. They will explain if it is a good idea to reduce your dose. They will also tell you how to do this gradually to avoid pain and withdrawal problems.

Signs of withdrawal include:

- diarrhoea

- cramping pains in the stomach and bowel

- sickness

- sweating

- feeling restless or agitated.

Can I drink alcohol if I am taking painkillers?

If you are taking strong painkillers, you can usually drink small amounts of alcohol. This is around 1 or 2 units per day. But you may find it makes you sleepier. Some people find it has a stronger effect on them and makes them feel unwell. It may be best to avoid alcohol if you can.

Drinking alcohol with milder painkillers is not usually a problem.

Your painkillers will have a patient information leaflet. This will have information about alcohol. You can also ask your doctor, nurse or pharmacist for more information about the painkillers you are taking.

Can I drive if I am taking strong painkillers?

When you first start taking strong painkillers, they may make you feel tired and drowsy. You may not be able to concentrate and your reactions may be slow. You may also be taking other drugs for pain which can make you drowsy and affect driving.

You should not drive or operate machinery for a few days:

- when you start taking strong painkillers

- if your dose of painkiller has been increased.

If you are not drowsy and you feel able to drive after this, you should be okay to drive. Do not drive immediately after taking an extra (breakthrough) dose of a strong painkiller.

Keep your first drive short and easy. Take another driver with you in case you feel drowsy while you are out. If you are worried that you may not be safe to drive, ask your doctor for advice.

You do not have to tell the DVLA or the DVA in Northern Ireland if you are taking strong painkillers. But they may need to know about your cancer. Your doctor or specialist nurse can give you more information.

It is a good idea to tell your insurance company if your ability to drive may be affected. Each company is different, but your insurance may not be valid if you do not tell them. Make sure you know what your doctor’s advice is before you contact your insurance company.

The law and strong painkillers

You may be prosecuted if you have drugs in your body that affect your driving, even if you have been prescribed the drugs.

It is an offence to drive with certain drugs above certain limits in your body. This includes some prescription medicines. You will not be breaking the law if the painkillers are not affecting your ability to drive safely, and you are:

- taking them exactly as your doctor prescribed them

- following the information that came with the painkillers.

The police can stop people who are driving and do tests to check whether they have taken any drugs. It is a good idea to keep a copy of your prescription with you, as well as the painkillers’ packaging.

If you are not sure whether you are able to drive, you should not drive. Your doctor, specialist nurse or pharmacist can tell you more about this.

Other drugs used to control pain

There are other drugs that can be used to treat pain. You may take these with painkillers or on their own. The drugs your doctor prescribes will depend on the type of pain you have. Sometimes it can take some time to find the drug and dose that works best for you.

Your doctor or nurse will explain the different side effects of any drugs you are prescribed and how they may affect you.

Drugs to treat nerve (neuropathic) pain

Specific drugs are used to treat nerve pain. They are taken as tablets or capsules. It may take a few weeks for them to work. It is important to keep taking the drug your doctor prescribes, even if does not work straight away. The dose of the drug may need to be gradually increased.

Some of these drugs are also used to treat seizures. They change the way in which nerves send messages to your brain. They include:

- gabapentin

- pregabalin

- clonazepam.

Other drugs that treat nerve pain can also be used in higher doses to treat depression. Some people worry about taking them because of this. But research shows that in lower doses they work well in targeting and reducing nerve pain. These drugs include:

- duloxetine

- amitriptyline.

Drugs to treat bone pain

Bisphosphonates

People who have pain from cancer that has spread to the bones may be prescribed drugs called bisphosphonates. As well as helping to reduce pain, bisphosphonates also strengthen the affected bones. You have them as a drip into a vein or as tablets. Commonly used bisphosphonates are:

- sodium clodronate

- ibandronic acid

- disodium pamidronate

- zoledronic acid.

If you have a bisphosphonate as an injection into a vein, you have treatment once every 4 weeks. We have more information in our booklet Understanding primary bone cancer and at macmillan.org.uk/supportive-treatments

Denosumab

Denosumab is another treatment that can be used to relieve bone pain. You have it as an injection just under the skin, every 4 weeks. We have more information at macmillan.org.uk/denosumab

Steroids to reduce swelling

Steroids can reduce swelling and pain caused by a tumour pressing on a part of the body. You usually have steroids as tablets, but they can also be given as an injection. There are different types. People usually have dexamethasone or prednisolone.

Drugs to relax muscles

If muscle spasms are causing pain, your doctor may prescribe a short course of a muscle relaxant such as:

- diazepam

- clonazepam

- baclofen (Lioresal®)

- hyoscine butylbromide (Buscopan®), which relaxes muscles in the bowel and helps treat tummy cramps.

Organising and storing painkillers

It can sometimes be confusing if you have a lot of medicines to take. You may be taking more than one drug to treat your pain, as well as other medicines.

Getting organised helps make sure you store all your medicines safely. It may also help you remember to take them exactly as your doctor prescribed.

Here are some general tips for storing your medicines:

- Check the expiration date.

- Keep them in their original bottle or packet where you can clearly read the label.

- Keep them in a cool, dry place.

- Keep them out of sight and reach of children. You might want to lock away strong painkillers.

- Return any unused medicines to a pharmacy (chemist) so they can dispose of them properly. Do not put them in the bin or down the toilet.

Remembering to take your medicines

It might help to:

- make taking your medicines part of your daily routine - for example, taking them after meals, depending on the instructions

- set an alarm on your mobile phone or computer to remind you

- write a note in a notebook that you keep nearby

- ask your partner, relative or friend to remind you to take them.

Using the pain diary may help you keep track of when to take your drugs. If you find it hard to remember to take medicines several times a day, tell your doctor. They may be able to prescribe drugs that you take less often.

If you are taking several different drugs, you may find it helpful to write down:

- the drugs you are taking

- what they are for

- their doses

- when you need to take them.

You could also include notes about what the medicine looks like and when to re-order it. Ask your doctor or nurse about a chart or medicine planner to write on. Or you might find a chart or planner you can use on the internet.

Your local pharmacist can also give you advice about medicines.

Boots stores have specially trained Boots Macmillan Information Pharmacists. Find out more at boots.com/macmillan

You may find our My Records booklet helpful. There is space inside to record your medication, when you should take it and any side effects.

Pill organisers

You may find it easier to arrange your drugs in a blister pack or dosette box. These have separate compartments which clearly show the day and time when you should take your medicines. Your GP may be able to organise this with your pharmacist. You can also ask your pharmacist for more information if you think this could help you.

You can buy your own medicine container boxes (pill organisers) from most pharmacies. You can then fill it with your medicines or ask a family member or friend to help you.

Phone apps

If you have a smartphone there are free apps you can download to help you remember to take your medicines.

Travelling with your medicines

If you are planning to leave the UK, you will need to make sure you are organised.

Ask your pharmacist whether you will need a letter to prove that your medicine is prescribed for you. You need this for ‘controlled drugs’, such as strong painkillers. If you are going to be abroad for more than 3 months, you will need to get a licence. You can read more about this at gov.uk/travelling-controlled-drugs

Here are some tips for travelling with your medicines:

- Check if there are restrictions about taking drugs like morphine into the country you are going to.

- Have enough painkillers and medicines to cover the whole time you are away. Take a few extra with you in case you have any delays.

- If your medicines need to be kept cool, you can buy small cool bags from your pharmacy to store them.

- Keep all medicines and covering letters in your hand luggage.

- Take a list of your medicines, copies of your prescription and your doctor’s phone number.

- If you are travelling abroad and there is a time difference, gradually change the times you take your medicines to fit in with this.

We have more information in our booklet Travel and cancer.

Other ways to help manage pain

Managing pain with other treatments

Cancer treatments can also be used to help manage pain. It may take up to a few weeks for them to work and improve the pain.

Radiotherapy

Radiotherapy uses high-energy rays to shrink a cancer. It can be used to reduce pain and other symptoms. For example, it is often used to control pain when a cancer has spread to the bones. This is called secondary bone cancer. You usually have 1 to 5 sessions of radiotherapy.

We have more information in our booklets Understanding secondary bone cancer and Understanding radiotherapy.

It usually takes 7 to 10 days to reduce your pain. It may take up to 6 weeks to feel the full effect. You will keep taking painkillers during this time.

Sometimes pain gets worse for a short time after radiotherapy. Your doctor may increase your painkillers or prescribe other drugs to help during that time. If the radiotherapy helps control your pain, you may be able to reduce your painkillers. Your doctor or nurse can advise you about this.

The dose of radiotherapy used to treat pain is low. The treatment usually has very few side effects, other than tiredness.

Sometimes, a type of radiotherapy called radioisotope therapy is used to help treat bone pain. Radioisotope therapy is the use of a radioactive substance to treat cancer. It can be given by mouth as a drink or capsule, or injected into a vein. Radioisotope treatment may be used if several bones are affected.

We have more information at macmillan.org.uk/radiotherapy

Surgery

Sometimes surgery can help treat pain by:

- removing part, or all of a tumour, to relieve pressure on organs or a nerve

- repairing or strengthening a damaged bone when cancer has spread to the bones.

Anti-cancer drugs

You may have drug treatments that help to shrink the cancer and so reduce pain. These include:

- chemotherapy

- targeted therapy

- immunotherapy

- hormonal therapy.

Your doctor can tell you how likely a treatment is to work and what the side effects may be. This will help you decide whether the treatment would be helpful for you.

Nerve blocks

A nerve block is a treatment that blocks nerves from sending messages to the brain. It is a way of switching off a nerve to stop it causing pain. If you have pain that is difficult to treat, your doctor might suggest a nerve block.

There are different types of nerve blocks. They are usually called by the names of the nerves that are blocked. After having the nerve block, you may be able to reduce your dose of painkillers. A nerve block can often be repeated.

Your GP or hospital specialist can refer you to a pain team. Nerve blocks are done by an expert pain specialist. This is usually an anaesthetist. They will discuss the benefits and possible risks with you.

The doctor may use one of the following drugs to block the nerve:

- A local anaesthetic – this is sometimes given with steroids and produces a short-lasting nerve block.

- Alcohol and phenol – these damage the nerve and give a long-lasting block. They are less commonly used because of the side effects.

We have more information about steroids at macmillan.org.uk/supportive-treatments

Your doctor or nurse will tell you what to expect and talk to you about side effects. Nerve blocks do not usually have many side effects. Some may cause low blood pressure or diarrhoea. But this usually improves after a few days.

Non-drug treatments and complementary therapies

Some people find non-drug treatments and complementary therapies helpful in managing pain. They can be used with painkillers, or sometimes on their own.

Some treatments, such as talking therapies, aim to relax and de-stress your mind and body. Some people use physical therapies to help relieve pain.

We have more information in our booklet Cancer and complementary therapies.

Physiotherapy and exercise

Pain can stop you from using the part of your body that hurts. But as your muscles or joints stiffen, this can lead to more pain.

Exercise can be an important part of managing pain. It helps your body release endorphins. These are natural substances produced in your body that have a painkilling effect. A physiotherapist:

- may be able to help reduce pain and stiffness with gentle massage and exercise

- can help you stay active and show you exercises which may help to improve your pain.

Ask your doctor or physiotherapist whether it is safe to exercise and what type of activity may help.

TENS (trans-cutaneous electrical nerve stimulation)

TENS is a way of managing pain using a mild electrical current.

A TENS machine is a small battery-powered device. Wires from the TENS machine attach to sticky pads that you put on the surface of your skin, near the area of pain.

When you turn the machine on, it sends a small electrical current to the affected area. It feels like a tingling sensation. The machine has a dial that allows you to control the strength of the current. Some people find that using a TENS machine helps ease their pain.

Talk to your healthcare team before using a TENS machine. They are not suitable for everyone. A pain team, physiotherapist or palliative care team can advise you whether TENS may be suitable for you. They can show you how to use the machine. They may be able to lend you one for a short time. If it works well for you, you can hire or buy one from a pharmacy or online.

You should always continue to take your prescribed painkillers. A TENS machine is a way of helping you to keep your pain under control when used alongside your prescribed pain killers. A TENS machine alone will not be enough to manage the pain.

Talking therapy (cognitive behavioural therapy)

Cognitive behavioural therapy (CBT) is a talking therapy. It helps people to manage problems by changing the way they think and behave. It can help give you ways to approach and cope with pain to help you feel more in control of your pain.

You can have CBT on a one-to-one basis or in group sessions with a trained therapist. You will often need a course of sessions over a few months. If you think it may help, ask your doctor or specialist nurse.

CBT is sometimes combined with a type of meditation called mindfulness meditation.

Complementary therapies

There are different complementary therapies that may help with pain. Some people find these helpful, but they do not work for everyone.

If you would like to try a complementary therapy, always talk to your doctor first. Complementary therapies should not replace any treatments prescribed by your doctor.

Always use a qualified therapist. The British Complementary Medicine Association (BCMA) has details of qualified therapists. Your hospital team or local hospice may also be able to recommend someone.

We have more information in our booklet Cancer and complementary therapies.

Acupuncture

Acupuncture may help some people with cancer pain. Some doctors think it may work by stimulating the body to produce endorphins, which are the body’s natural painkillers.

Acupuncture uses fine needles inserted just under the skin at certain points on the body. The needles are tiny, so it is not painful.

Acupuncture is generally safe and side effects or complications are rare. You should not have acupuncture if you are having treatments that could lower your blood counts, such as chemotherapy. If you have lymphoedema, or are at risk of it, do not have acupuncture in the affected area.

Some specialist NHS pain and palliative care teams offer acupuncture. Your GP or cancer specialist can refer you. You may have to pay for it.

Massage therapy

Massage therapy uses gentle pressure to your body to help you relax and improve your mood. Some people find it reduces pain.

There are different types of massage therapy. Cancer doctors and complementary therapists will usually advise you to try gentle massage and avoid vigorous, deep-tissue massage. Your therapist will be able to adjust the pressure for your comfort.

Some people worry that massage could cause cancer cells to spread to other parts of their body. Research has not found any evidence of this.

But massage therapists will avoid any areas affected by cancer. Talk to your cancer doctor or nurse if you are worried.

Massage therapists working with people with cancer must be properly trained and qualified. They should have some knowledge of cancer and its treatments. They can sometimes teach relatives or friends how to do basic massage techniques, so they can support you at home.

Meditation

There are different types of meditation but they all aim to relax and calm your mind. Some hospitals or hospices may have people who can help you meditate. Ask your doctor, specialist nurse or palliative care team.

To meditate, sit quietly and focus on your breathing without trying to control it. If you have a thought, try to let it go and only concentrate on your breathing. If you prefer, you can put an object in front of you and focus on that instead. For example, this could be a lighted candle or a picture.

If you are having treatment for any mental health problems, check with your doctor before doing meditation.

Mindfulness meditation

Mindfulness meditation is a particular type of meditation. The aim is to help people manage problems such as anxiety, stress or chronic pain. Types of mindfulness include:

- mindfulness-based stress reduction (MBSR)

- mindfulness-based cognitive therapy (MBCT).

Mindfulness classes may be available through your hospital, your GP or a cancer support charity.

Apps and CDs can help you meditate at home. Some people find it helpful to meditate in a group until they are familiar with the technique.

Relaxation

Learning to relax may also help control pain, even if you can only do this for a short time each day. Ask your doctor if there is a healthcare professional who can help you. This might be an occupational therapist, physiotherapist or psychologist. A technique called progressive muscle relaxation involves learning to tense and relax groups of muscles, individually or together.

You can also do relaxation exercises to relax your mind. This can be helpful if anxiety is making your pain worse. There are lots of relaxation exercises available to guide you on CD, online or as an app.

To practice relaxation, find a quiet, warm and dimly lit space. Make sure you will not be disturbed. Lie or sit in a well-supported position. Relaxation techniques are most helpful if you practise them for 5 to 15 minutes each day.

You may want to try different things until you find the relaxation exercise that works best for you.

We have more information in the booklet Cancer and complementary therapies.

Things you can do to help with pain

There are things you can do yourself to help improve your pain and feel better.

A comfortable position

The way you sit or lie down can affect your pain, so try to find a comfortable position. If you have difficulty moving, ask someone else to help you. What may be comfortable at first may be uncomfortable 15 or 20 minutes later, so you may need to change your position often. Changing position will also reduce the risk of your skin becoming sore.

Other things that may help are:

- v-shaped pillows or supports that help reduce backache and neck pain

- a bed cradle to keep the weight of blankets off your limbs

- a special mattress and cushions

- equipment to help with moving around and sitting.

Your district nurse can tell you more and advise how you can get these.

Heat pads or ice packs

Having a warm bath can help relieve aches and pains. Or you could try applying a heat pad to the painful area. Heat may help relax muscles and reduce joint stiffness.

Ice packs can help relieve pain where there is inflammation and swelling. Some people find that switching between heat and cold helps.

Be careful to protect your skin from burns. Cover heat pads and ice packs before you put them near the skin. Do not use heat on areas where you have inflammation or swelling.

Distraction

You may find it helps to do something that could take distract you from pain. You could try:

- watching TV

- reading

- playing computer games or doing puzzles

- listening to music

- talking to family or friends, and having visitors for a short time

- taking short walks with someone.

Gentle exercise

Some types of gentle exercise, such as walking, may help some people to manage pain. Exercise can help relieve stress, distract you and give you more energy. If you have sore joints, exercise can help ease pain by building muscle strength and improving flexibility.

Exercise such as swimming and cycling could be a good choice as these put less strain on your joints. We have more information in our booklet Physical activity and cancer.

Get practical help

Coping with pain can be harder if you are anxious about things such as:

- treatment

- coping at home or at work

- money.

Getting help with these things may help you feel less stressed. This can help make pain easier to control.

Talk to your doctors and nurses about any concerns you have about treatment and side effects. You can also talk to one of our cancer support specialists on the Macmillan Support Line.

You may worry that pain will affect how you travel or get to appointments. If this is the case, you may find the Blue Badge scheme useful. This allows you to park in parking spaces closer to where you need to go.

A social worker can check what practical and social help you need. They can visit you at home to see if you need help with things like:

- meals

- personal care, such as washing and dressing

- finances.

The local authority will then let you know about services they can help with. Services vary in different areas. The local authority may suggest other community organisations that can help.

Voluntary and community organisations

Voluntary and community organisations may be able to offer support.

The British Red Cross has volunteers who can help you with things like shopping, posting letters or changing library books. They may be able to help you get to hospital appointments. The Red Cross also lends equipment like wheelchairs and commodes (portable toilets). Services vary in different parts of the UK.

Living Made Easy and Scope both give information and advice to disabled people.

Some areas have schemes to help people with things like shopping, meeting other people or transport. These are often called good neighbour schemes and are usually run by social services or local community organisations. Contact your local council or look online to find out what is available in your area.

Feelings and pain

Being in pain can affect how you think and feel. You may feel angry, frustrated, frightened or isolated.

When your pain is well controlled, it will improve the way you feel. It also means you can do the things you enjoy and see other people. Always talk to your doctor if the pain is not controlled.

Talking therapies such as cognitive behavioural therapy (CBT) may help you to manage pain. Meditation techniques such as mindfulness may also help.

Depression

If pain is not well controlled, you may feel depressed. You may have a low mood most of the time. You may also have difficulty sleeping or no appetite. The pain may feel worse and harder to cope with.

If you or people around you think you may be depressed, talk to your GP. They can help you to get the right treatment and support. They may suggest you see a counsellor or psychologist. Your GP may talk to you about taking anti-depressants to improve your mood or reduce anxiety.

We have more information at macmillan.org.uk/depression

Getting emotional support

If you feel okay emotionally, your physical pain may feel better. There are many people and organisations that can help you cope with difficult feelings. Non-medical treatments may also help. Ask your doctor or specialist palliative care nurse which ones would be best for you.

It can help to talk about your feelings. You could talk to your partner, a close friend or family member. If you do not talk, they may not realise you have pain. They may not understand how the pain is making you feel, and why you are angry or upset.

You may prefer not to talk to anyone you know about your feelings.

If this is the case, you can talk to your GP or specialist palliative care nurse. They can help by putting you in contact with a counsellor. You could also contact the British Association for Counselling and Psychotherapy. Or you can speak to Macmillan’s cancer support specialists.

Different organisations offer advice, support and information about pain. We have contact details for the following:

- Action on Pain

- British Pain Society

- Pain Concern.

Support groups

It can often help to share how you are feeling with other people who understand what you are going through. Local support groups offer a chance to talk to other people who may also be managing pain. You can find a support group in your area at macmillan.org.uk/supportgroups

Online support

Many people find support on the internet. There are online support groups, social networking sites, forums, chat rooms and blogs for people affected by cancer. These include Macmillan’s Online Community at macmillan.org.uk/community. You can use these to share your experiences, ask questions, get advice, or just read other people’s stories.

‘When my late husband was diagnosed with pancreatic cancer, we had a lot of support with pain management from our local hospice.’ Michelle, who cared for her husband

Spiritual support

Spirituality can mean different things to different people. It may be religious, or it may be expressed through music, art, nature, or how you relate to your family or community.

A person’s spirituality can be an important source of comfort and strength. Some people with cancer find their spiritual beliefs are challenged by their situation. They may experience ‘spiritual pain’ and feel abandoned, or frightened. Sometimes they may withdraw from family and friends.

You may find it helpful to talk through your thoughts and feelings with someone you trust. This may be a close friend or family member, a health and social care professional or a chaplain or religious leader.

If you would prefer to talk to a non-religious counsellor or pastoral carer, your GP, specialist nurse or hospital doctor (see Who can help you treat and manage pain) may be able to help you find one.

All these people may be able to help you work out your thoughts and feelings.

Further information

About our information

We provide expert, up-to-date information about cancer. And all our information is free for everyone.

Order what you need

You may want to order more booklets or leaflets, or download more eBooks like this one. Visit be.macmillan.org.uk or call us on 0808 808 00 00.

We have booklets on different cancer types, treatments and side effects. We also have information about work, financial issues, diet, life after cancer and information for carers, family and friends.

Online information

All of our information is also available online at macmillan.org.uk/information-and-support There you’ll also find videos featuring real-life stories from people affected by cancer, and information from health and social care professionals.

Other formats

We also provide information in different languages and formats, including:

- audiobooks

- Braille

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- large print

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Find out more at macmillan.org.uk/otherformats If you’d like us to produce information in a different format for you, email us at cancerinformationteam@macmillan.org.uk or call us on 0808 808 00 00.

Help us improve our information

We know that the people who use our information are the real experts. That’s why we always involve them in our work. If you’ve been affected by cancer, you can help us improve our information.

We give you the chance to comment on a variety of information including booklets, leaflets and fact sheets.

If you’d like to hear more about becoming a reviewer, email reviewing@macmillan.org.uk You can get involved from home whenever you like, and we don’t ask for any special skills – just an interest in our cancer information.

Other ways we can help you

At Macmillan, we know how a cancer diagnosis can affect everything, and we are here to support you.

Talk to us

If you or someone you know is affected by cancer, talking about how you feel and sharing your concerns can really help.

Macmillan Support Line

Our free, confidential phone line is open 7 days a week, 8am–8pm. Our cancer support specialists can:

- help with any medical questions you have about your cancer or treatment

- help you access benefits and give you financial advice

- be there to listen if you need someone to talk to

- tell you about services that can help you in your area.

Call us on 0808 808 00 00 or email us via our website, macmillan.org.uk/talktous

Information centres

Our information and support centres are based in hospitals, libraries and mobile centres. There, you can speak with someone face to face.

Visit one to get the information you need, or if you’d like a private chat, most centres have a room where you can speak with someone alone and in confidence.

Find your nearest centre at macmillan.org.uk/informationcentres or call us on 0808 808 00 00.

Talk to others

No one knows more about the impact cancer can have on your life than those who have been through it themselves. That’s why we help to bring people together in their communities and online.

Support groups

Whether you are someone living with cancer or a carer, we can help you find support in your local area, so you can speak face to face with people who understand. Find out about support groups in your area by calling us or by visiting macmillan.org.uk/selfhelpandsupport

Online community

Thousands of people use our online community to make friends, blog about their experiences and join groups to meet other people going through the same things. You can access it any time of day or night. Share your experiences, ask questions, or just read through people’s posts at community.macmillan.org.uk

The Macmillan healthcare team

Our nurses, doctors and other health and social care professionals give expert care and support to individuals and their families. Call us or ask your GP, consultant, district nurse or hospital ward sister if there are any Macmillan professionals near you.

Help with money worries

Having cancer can bring extra costs such as hospital parking, travel fares and higher heating bills. If you’ve been affected in this way, we can help.

Financial guidance

Our financial guidance team can give you advice on mortgages, pensions, insurance, borrowing and savings.

Help accessing benefits

Our benefits advisers can offer advice and information on benefits, tax credits, grants and loans. They can help you work out what financial help you could be entitled to. They can also help you complete your forms and apply for benefits.

Macmillan Grants

Macmillan offers one-off payments to people with cancer. A grant can be for anything from heating bills or extra clothing to a much-needed break.

Call us on 0808 808 00 00 to speak to a financial guide or benefits adviser, or to find out more about Macmillan Grants. We can also tell you about benefits advisers in your area.

Visit macmillan.org.uk/financialsupport to find out more about how we can help you with your finances.

Help with work and cancer

Whether you’re an employee, a carer, an employer or are self-employed, we can provide support and information to help you manage cancer at work. Visit macmillan.org.uk/work

Other useful organisations

There are lots of other organisations that can give you information or support. Details correct at time of printing.

Pain management and support

Action on Pain

Helpline (Pain Line) 0345 603 1593

www.action-on-pain.co.uk

Provides information and support for people affected by chronic pain.

British Complementary Medicine Association (BCMA)

Tel 0345 345 5977

www.bcma.co.uk

Has information on various alternative therapies and a database of UK therapists.

British Pain Society

Tel 0207 269 7840

www.britishpainsociety.org

Has information about pain including a list of self-help groups and a suggested reading list. Signposts to other sources of support.

Pain Association Scotland

Tel 0800 783 6059

www.painassociation.co.uk

Offers self-management training to help people manage chronic pain.

Pain Concern

Helpline 0300 123 0789

www.painconcern.org.uk

Has leaflets about pain, self-management information, podcasts, and an online forum where people can share experiences.

General cancer support organisations

Cancer Black Care

Tel 020 8961 4151

www.cancerblackcare.org.uk

Offers UK-wide information and support for people from Black and minority ethnic communities who have cancer. Also supports their friends, carers and families.

Cancer Focus Northern Ireland

Helpline 0800 783 3339

www.cancerfocusni.org

Offers a variety of services to people affected by cancer in Northern Ireland.

Cancer Research UK

Helpline 0808 800 4040

www.cancerresearchuk.org

A UK-wide organisation that has patient information on all types of cancer. Also has a clinical trials database.

Cancer Support Scotland

Tel 0800 652 4531

www.cancersupportscotland.org

Runs cancer support groups throughout Scotland. Also offers free complementary therapies and counselling to anyone affected by cancer.

Macmillan Cancer Voices

www.macmillan.org.uk/cancervoices

A UK-wide network that enables people who have or have had cancer, and those close to them such as family and carers, to speak out about their experience of cancer.

Maggie’s

Tel 0300 123 1801

www.maggies.org

Has a network of centres in many locations throughout the UK. Provides free information about cancer and financial benefits. Also offers emotional and social support to people with cancer, their family, and friends.

Penny Brohn UK

Helpline 0303 3000 118

www.pennybrohn.org.uk

Offers physical, emotional and spiritual support across the UK, using complementary therapies and self-help techniques.

Riprap

www.riprap.org.uk

Developed especially for teenagers in the UK who have a parent with cancer. Has an online forum where teenagers going through similar experiences can talk to each other for support.

Tenovus

Helpline 0808 808 1010

www.tenovuscancercare.org.uk

Aims to help everyone in the UK get equal access to cancer treatment and support. Funds research and provides support such as mobile cancer support units, a free helpline, benefits advice and an online ‘Ask the nurse’ service.

General health information

Health and Social Care in Northern Ireland

www.northerntrust.hscni.net

Provides information about health and social care services in Northern Ireland.

NHS.UK

www.nhs.uk

The UK’s biggest health information website. Has service information for England.

NHS 111 Wales

111.wales.nhs.uk

NHS health information site for Wales.

NHS Inform

Helpline 0800 22 44 88

www.nhsinform.scot

NHS health information site for Scotland.

Patient UK

www.patient.info

Provides people in the UK with information about health and disease. Includes evidence-based information leaflets on a wide variety of medical and health topics. Also reviews and links to many health- and illness-related websites.

Counselling

British Association for Counselling and Psychotherapy (BACP)

Tel 0145 588 3300

www.bacp.co.uk

Promotes awareness of counselling and signposts people to appropriate services across the UK. You can also search for a qualified counsellor on their ‘How to find a therapist’ page.

UK Council for Psychotherapy (UKCP)

Tel 0207 014 9955

www.psychotherapy.org.uk

Holds the national register of psychotherapists and psychotherapeutic counsellors, listing practitioners who meet exacting standards and training requirements.

Emotional and mental health support

Mind

Helpline 0300 123 3393

www.mind.org.uk

Provides information, advice and support to anyone with a mental health problem through its helpline and website.

Samaritans

Helpline 116 123

Email jo@samaritans.org

www.samaritans.org

Provides confidential and non-judgemental emotional support, 24 hours a day, 365 days a year, for people experiencing feelings of distress or despair.

Financial support or legal advice and information

Advice NI

Helpline 0800 915 4604

www.adviceni.net

Provides advice on a variety of issues including financial, legal, housing and employment issues.

Benefit Enquiry Line Northern Ireland

Helpline 0800 232 1271

Textphone 028 9031 1092

www.nidirect.gov.uk/money-tax-and-benefits

Provides information and advice about disability benefits and carers’ benefits in Northern Ireland.

Citizens Advice

Provides advice on a variety of issues including financial, legal, housing and employment issues. Use their online webchat or find details for your local office by contacting:

England

Helpline 0800 144 8848

www.citizensadvice.org.uk

Scotland

Helpline 0800 028 1456

www.cas.org.uk

Wales

Helpline 0800 702 2020

www.citizensadvice.org.uk/wales

Equipment and advice on living with a disability

British Red Cross

Tel 0344 871 11 11

www.redcross.org.uk

Offers a range of health and social care services across the UK, such as care in the home, a medical equipment loan service and a transport service.

Disability Rights UK

Tel 0330 995 0400 (not an advice line)

www.disabilityrightsuk.org

Provides information on social security benefits and disability rights in the UK. Has a number of helplines for specific support, including information on going back to work, direct payments, human rights issues and advice for disabled students.

Living Made Easy

Helpline 0300 999 0004

www.livingmadeeasy.org.uk

Provides free, impartial advice about all types of disability equipment and mobility products.

Scope

Helpline 0808 800 3333

Textphone Use Type Talk by dialling 18001 from a textphone followed by 0808 800 3333.

www.scope.org.uk

Offers advice and information on living with disability. Also supports an independent, UK-wide network of local Disability Information and Advice Line services (DIALs) run by and for disabled people.

Support for older people

Age UK

Helpline 0800 678 1602

www.ageuk.org.uk

Provides information and advice for older people across the UK via the website and advice line. Also publishes impartial and informative fact sheets and advice guides.

LGBT-specific support

LGBT Foundation

Tel 0345 330 3030

www.lgbt.foundation

Provides a range of services to the LGBT community, including a helpline, email advice and counselling. The website has information on various topics including sexual health, relationships, mental health, community groups and events.

Live Through This

www.livethroughthis.co.uk

A safe space for anybody who identifies as part of the queer spectrum and has had an experience with any kind of cancer at any stage. Also produces resources about LGBT cancer experiences. LTT runs a peer support group with Maggie’s Barts.

Support for carers

Carers Trust

Tel 0300 772 9600

www.carers.org

Provides support, information, advice and services for people caring at home for a family member or friend. You can find details for UK offices and search for local support on the website.

Carers UK

Helpline (England, Scotland, Wales) 0808 808 7777

Helpline (Northern Ireland) 028 9043 9843

www.carersuk.org

Offers information and support to carers across the UK. Has an online forum and can put people in contact with local support groups for carers.

Disclaimer, thanks and sources

Disclaimer

We make every effort to ensure that the information we provide is accurate and up to date, but it should not be relied upon as a substitute for specialist professional advice tailored to your situation. So far as is permitted by law, Macmillan does not accept liability in relation to the use of any information contained in this publication, or third-party information or websites included or referred to in it. Some photos are of models.

Thanks

This booklet has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been approved by our Senior Medical Editor, Dr Ollie Minton, Macmillan Consultant in Palliative Medicine.

With thanks to: Ben Bowers, Nurse Researcher and Community Palliative Care Nurse; Michelle Buono, Macmillan Education Nurse/Palliative Care Clinical Nurse Specialist; Mark Cawley, Lead Nurse for Palliative and End of Life Care; Dr Paul Farquhar-Smith, Consultant in Pain Management and Anaesthetics; Dinah Hickish, Consultant Nurse; Pauline McCulloch, Palliative Care Clinical Nurse Specialist; and Professor Catherine Urch, Consultant in Palliative Medicine.

Thanks also to the people affected by cancer who reviewed this edition, and those who shared their stories.

We welcome feedback on our information. If you have any, please contact cancerinformationteam@macmillan.org.uk

Sources

Below is a sample of the sources used in our cancer pain information. If you would like more information about the sources we use, please contact us at cancerinformationteam@macmillan.org.uk

Fallon M, Giusti R, Aielli F, et al. Management of cancer pain in adult patients: ESMO Clinical Practice Guidelines, Annals of Oncology, 2018; 29 (Suppl 4): 166–191. Available from: www.esmo.org/guidelines/guidelines-by-topic/supportive-and-palliative-care/cancer-pain (accessed Jan 2022)

Pain and symptom control guidelines for adults; Greater Manchester and Eastern Cheshire Strategic Clinical Networks 2019. Available from: www.england.nhs.uk/north-west/wp-content/uploads/sites/48/2020/01/Palliative-Care-Pain-and-Symptom-Control-Guidelines.pdf (accessed Jan 2022)

Palliative cancer care – pain. National Institute for Health and Care Excellence March 2021. Available from: cks.nice.org.uk/topics/palliative-cancer-care-pain (accessed Jan 2022)

Scottish Palliative Care Guidelines. Available from: www.palliativecareguidelines.scot.nhs.uk (accessed Jan 2022)

Can you do something to help?

We hope this eBook has been useful to you. It’s just one of our many publications that are available free to anyone affected by cancer. They’re produced by our cancer information specialists who, along with our nurses, benefits advisers, campaigners and volunteers, are part of the Macmillan team. When people are facing the toughest fight of their lives, we’re there to support them every step of the way.

We want to make sure no one has to go through cancer alone, so we need more people to help us. When the time is right for you, here are some ways in which you can become a part of our team.

5 ways you can help someone with cancer

Share your cancer experience

Support people living with cancer by telling your story, online, in the media or face to face.

Campaign for change

We need your help to make sure everyone gets the right support. Take an action, big or small, for better cancer care.

Help someone in your community

A lift to an appointment. Help with the shopping. Or just a cup of tea and a chat. Could you lend a hand?

Raise money

Whatever you like doing you can raise money to help. Take part in one of our events or create your own.

Give money

Big or small, every penny helps.

Call us to find out more 0300 1000 200

macmillan.org.uk/getinvolved