Looking after yourself

Supportive care

Sometimes no treatment may be suitable for you, perhaps because your cancer has progressed too far and treatment will not benefit you. And sometimes, after weighing up all the choices, people choose not to have any treatment. Whichever treatment choice you make, your cancer centre should support your decision.

Although treatment may not be an option, this does not mean there is nothing that can be done to help and support you and your family.

Coping emotionally
Being diagnosed with cancer is distressing and can be difficult to take in, particularly if you have experienced few symptoms. Many people go through a range of emotions before accepting their diagnosis, ranging from initial shock and disbelief that this is happening to them, to anger which can give way to depression. Your medical team will be able to direct you to counselling and psychological support to help you come to terms with your diagnosis. It is also worthwhile thinking of other sources of support, such as those in your local community, online support groups, ministers of religion and the organisations listed in the ‘Who else can help?’ section.

It is important not to push family and friends away. Try to explain to those close to you how you feel so they can help and support you. It can be helpful if you can give suggestions as to how they can help practically.

It can be particularly helpful for a friend or family member to attend medical appointments with you. Many people find they are too traumatised or anxious to ask questions. A second person can ask on your behalf and may get a completely different view of a meeting. It is of great benefit to be able to discuss this afterwards and agree what was actually said and by whom. Preparing a list of questions beforehand is a good idea.

Diet supplements
If you are finding it difficult to eat, there are plenty of dietary supplements available on prescription. Some are powders you sprinkle on your food and some are drinks that are complete meals in themselves. Sipping a supplement between meals throughout the day can really boost your calorie intake. Ask your doctor or dietician for help.

Alcohol and smoking
Alcohol is processed by your liver, and as a result, it can be dangerous for anyone with liver problems. Check with your doctor whether it is safe for you to drink any alcohol, and if so, how much.

Smoking is dangerous to everyone’s health. People with liver disease are more vulnerable to infection and to poor health overall, so smoking or exposure to passive smoking is not advisable.

Coping financially
Your GP or Macmillan nurse (if you have one) may be able to help you with grants for aids, heating costs, holidays and other household expenses related to your illness. They can also help you to claim benefits for yourself or for the person caring for you. It may be helpful to see a social worker. Again, talk to your GP or Macmillan nurse.

To obtain the services of a Macmillan nurse, you must be referred by your GP, your hospital consultant, a district nurse or a hospital ward sister.

Making your wishes known
If you are too ill to deal with your financial affairs you may wish to set up a document called an ‘enduring power of attorney’. This will enable someone you nominate to take legal decisions on your finances, and also your care and treatment, on your behalf.

You can also set up an ‘advanced directive’ or ‘living will’ which allows you to have a say in medical decisions if you are too ill to consent at the time. These are major steps and should be considered carefully. Discuss them with those closest to you, your medical team and a solicitor if possible.

The Trust’s publication ‘Living with liver disease’ provides further information which you may find helpful in coping day to day.

Coping with symptoms

As your illness progresses you may develop different symptoms. It is not certain that you will have all or any of them, but the following information may help you to realise that there is usually something that can be done to help you cope.

Ascites
Ascites is a build up of fluid in the lower tummy area (abdomen). There are several possible reasons for ascites including:

  • cancer cells in the lining of the abdomen cause fluid to leak out into the abdomen
  • pressure develops in veins around the liver because the liver is not working properly; this causes fluid to leak out into the abdomen.

Symptoms of ascites such as a large, uncomfortable abdomen, can be relieved by taking water tablets (diuretics) or by inserting a temporary tube into the abdomen to drain the fluid. Unfortunately, despite both of these treatments ascites may come back again.

Pain
Pain may develop in the abdomen and sometimes in the back. If pain affects you, there are a range of painkillers you can try. You will probably be started on some simple painkillers such as paracetamol or co-dydramol; some people do not need anything stronger than these.

However, if these are not effective then you may be offered a morphine based painkiller such as morphine sulphate tablets (MST). Do not worry about becoming addicted to morphine. Morphine taken to relieve pain works in a different way than morphine taken for ‘recreation’.

MST are taken in two doses daily, usually in the morning and at night before bed. The idea is that the morphine is released slowly into the bloodstream and so provides a background of constant pain relief. You will usually also be given liquid morphine or fast acting tablets in a bottle to take to ‘top up’ your pain relief if you experience a breakthrough in pain. It is important to make a note of how much liquid morphine you are taking, as this may be an indication to increase your morphine tablets.

Morphine-like drugs can also be given as a patch, similar to nicotine patches. This way of delivering painkillers may be used for patients who are not able to take tablets.

Remember that most painkillers can make you constipated. Constipation is not about how often you go to the toilet but how easily you pass the stool. If you find you are becoming constipated then drink plenty of water and have some laxatives at home ready to help you. Try to avoid becoming constipated as this can increase the amount of painkillers you need, and so increases the constipation; becoming a cycle that you need to break in order to become comfortable again. It is very likely you will be prescribed laxatives when you have your painkillers. There are many forms of laxatives, talk to your doctor about options and which are safe for you to use.

You may also find that painkillers, or even your illness on its own, may cause you to feel sick. If this is the case then a good anti-sickness medication to stop this feeling will be made available to you. You may also find that ginger or peppermint tea help to relieve symptoms.

Very rarely, your pain will not be controlled through the usual methods and you will be referred to an expert, such as an anaesthetist or specialist nurse, who will be able to offer special treatment.

Complementary and alternative medicines

Many complementary and alternative medicines are available that are suggested to ease the symptoms of liver disease. Most of these are processed by the liver, so can be toxic to people with liver problems. Some can damage the liver and make you more severely ill. At present, healthcare professionals are not clear on the role and place of some therapies in managing liver disease. More research needs to be done on the use of such therapies.

Many products are not licensed as a medicine and there is therefore no regulation of the product, which means you cannot be sure how much of the active ingredient you are getting or how pure it is. It is wise to be cautious about the claims made for herbal remedies, particularly those advertised on the internet, as they can offer false hope. It is a good idea to discuss the use of these remedies with your doctor.