Managing eating and drinking changes after treatment

Always tell your cancer team if you are having difficulties eating or drinking. There are many types of help available depending on the reason for your problems.

You may see a speech and language therapist (SLT). They are experts in helping people to manage chewing and swallowing problems. They can arrange tests to assess the problem and advise on:

  • Mouth and throat exercises to help chewing and swallowing
  • what types and textures of food to try
  • swallowing techniques
  • coping strategies to help you adjust to changes to eating and drinking.

Other people who can help with different types of eating and drinking problems include:

  • dietitians
  • physiotherapists
  • specialist surgeons
  • restorative dentists
  • specialist nurses.

Difficulties chewing or swallowing may mean you feel anxious or unsure about eating in social situations. If you are going to eat at a friend’s or in a restaurant, try contacting them in advance. They may be able to make changes, such as preparing food that is easier for you to eat.

Support with eating and drinking changes

Surgery or radiotherapy for head and neck cancer can cause changes to how you eat and drink. After treatment, many people find that their ability to eat improves as other side effects get better, such as pain, swelling, feeling sick and tiredness.

If you have eating difficulties, you will usually be supported by a speech and language therapist (SLT). They can teach you exercises and techniques to help you chew and swallow. You may also see a dietitian. They can advise you on how to increase the energy and nutrients in your diet and may give you high-calorie supplements if you have lost weight.

You can read more information about what to eat to increase your weight after cancer treatment in our section on the building-up diet.

It can take a lot of effort and persistence to overcome eating difficulties. If eating has been a struggle for a while, you may no longer associate food with pleasure. Taste changes may reduce your desire for food and affect your appetite.

Talk to your SLT if you feel this way. Some SLTs use different coping techniques, such as mindful eating, to help people regain pleasure in food. It helps you to feel more relaxed around food and to find the things about eating you can still enjoy.


If you have a feeding tube

Some people have a feeding tube put in before or during treatment. For more information on this, read our section on types of nutritional support.


Help with chewing

The type of treatment you have to improve chewing depends on what is causing the problems. This could be a changed mouth shape, tooth loss, jaw stiffness, dry mouth or loss of sensation. It is important a specialist assesses you. This may be a surgeon, restorative dentist or a speech and language therapist.

They may suggest:

  • restorative dentistry or surgery
  • exercises to strengthen and retrain the tongue and mouth muscles
  • eating soft, pureed or moist food
  • changing the amount of food you put in your mouth
  • treatment for jaw stiffness
  • ways to relieve mouth dryness.

Restorative dentistry

If changes to your bite or to the tissues inside your mouth are affecting your ability to eat or speak, restorative dentists may be able to help.

After surgery to the roof of the mouth (maxilla), some people have an opening between the roof of the mouth and nose. This is covered by a special type of dental plate, called an obturator. It stops food, fluid and air passing between the nose and mouth. Some obturators have a speech bubble at the back to help with speaking.

As the tissues in the mouth heal after surgery, they gradually shrink until they reach their final size and shape. This can take six months or longer. If you need an obturator, you will usually be fitted with a temporary one to begin with. Once your mouth has healed into its final shape, your dentist will make you a permanent one.

It is important to let your dentist know if you have any problems with the fit of the obturator. As the tissues in your mouth are settling, you will probably find that the fit needs adjusting from time to time by your hospital dentist.

Exercises to improve chewing

An SLT will assess your chewing to find out which difficulties you have. They may arrange for you to have a swallowing test (see below).

They may give you exercises to strengthen your lips, tongue and other muscles in your mouth. There are also exercises to help stimulate parts of the mouth that have lost sensation.

Your SLT may give you chewing aids such as Chewy Tubes® to help you practise biting and chewing. Or they may give you spoon-shaped devices such as Ora-Light® to exercise the lips and tongue.

They may also advise you on changes you can make to the food you eat, for example choosing soft, moist foods. You may find it easier to chew with a larger or smaller amount of food in your mouth. This depends on the cause of your chewing difficulty.


Help with swallowing

The type of treatment you have to improve swallowing depends on which parts of the swallowing process are causing you problems. Your SLT will do an in-depth clinical assessment of your swallowing. You may need to have a swallowing test to show what happens when you swallow. There are two tests that can be used to assess swallowing:

  • videofluoroscopy (VF)
  • Fibreoptic Endoscopic Evaluation of Swallowing (FEES).

Your SLT will decide which is best and do the test for you.

A VF uses an x-ray and video to show what happens in your mouth and throat when you swallow. It takes 30 minutes and is done in the radiology department by a radiologist or radiographer and an SLT. You will be given food to swallow, which has had something added to make it show up on the x-ray. You will usually be asked to swallow foods of different textures. This might be something semi-solid such as yoghurt and something solid, such as a biscuit. The moving x-ray images of your swallow will be recorded on video.

A FEES involves passing a thin tube to the back of your throat. You probably had a similar test as part of your routine follow-up. The tube contains a camera to digitally record the test. You will be given small amounts of test foods and a drink to swallow. The test takes about 20 minutes.

Your SLT will explain the results of your swallowing test and use them to plan your treatment. The aim will be to help make swallowing easier and safer for you.

When you go to see the SLT, bring a partner, relative or friend with you if you can. This can help them to support you at home when you are eating. They can learn about techniques you need to use or changes to food you may need to make.

Your SLT may suggest:

  • how to position your head and neck when swallowing
  • swallowing techniques
  • exercises to strengthen swallowing muscles
  • eating and drinking thinner or thicker foods or liquids
  • changes to the way you prepare and cook food
  • taking time to eat and swallow
  • coughing to clear your airway after you swallow
  • coping strategies to help you adjust to changes to eating and drinking.

If your SLT gives you swallowing exercises, you will need to do them regularly to get the most benefit. Some people use apps, such as iSwallow®, to help guide them through swallowing exercises and to keep track of how often they do them. You can download the apps, but check which mobile device they work on. Always talk to your SLT before getting any apps.

Stretching the gullet (oesophagus)

Radiotherapy and chemoradiation to the head and neck area can cause the top of your gullet to narrow. This may be identified on a videofluoroscopy. You may be offered a quick procedure to make swallowing easier. A doctor puts a tube down into the gullet to stretch it, to make more space for food and fluid to pass through. You can have this done as an outpatient and usually with a local anaesthetic. But sometimes it is done under general anaesthetic.

I finished my radiotherapy in May and couldn’t get anything down my throat until November. It’s a long struggle so don’t give up. I set myself targets of six sips of water a day and often didn’t reach that. The first food I managed was chicken noodle soup with all the noodles strained out.

Nina


Taste changes


Heartburn and indigestion


Eating and socialising

Many social activities are based around eating and drinking. If you have difficulty chewing or swallowing, you may feel anxious or unsure about social situations. Everyone has their own way of dealing with these issues. This section has some suggestions you may find helpful.

If you feel self-conscious about eating in front of others, first get used to eating at home with people you know. When you feel ready to try eating away from home, do something simple to start with, such as going to a café for an ice cream. You can build from there as your confidence grows.

If you take a long time to eat, try eating smaller portion sizes but increase the number of times you eat each day. Eating small portions means you need to concentrate on eating for a shorter time, so you are less likely to get tired when eating.

If you are worried about keeping family or friends waiting while you eat, talk to them about this. They can reassure you that they don’t mind you taking longer. You will probably find they are more relaxed about it than you think.

When inviting someone over for a meal, people often make allowances for guests with different dietary needs, for example if someone doesn’t eat meat or can’t eat gluten. Tell your host in advance if you need food of a certain texture or thickness or if you can’t eat spicy food. This helps them to prepare food that suits you. Or you can ask if you can bring your own food to be heated up.

If you are going out to eat in a restaurant, try to look at the menu before you go. You can find out if they offer meals that suit you or that can be adapted for you. Try contacting them in advance to ask if they can make changes to a dish, such as adding extra gravy, mayonnaise or butter, leaving out certain spices, or blending your food.

If you take some meals as liquid supplements, ask the restaurant if they can provide you with a cup. This means you can take a liquid supplement meal while your friends order from the menu.

People who do not know you may ask about your eating difficulties when they first share a meal with you. You may find it helpful to think of what you want to say beforehand. Or you might decide you don’t want to explain it at all. You could ask your host to tell other guests in advance and add that you would prefer not to talk about it. Do whatever makes you feel comfortable.

Not all of us are good at asking for what we need. If you find it difficult, you may be able to get assertiveness coaching on the NHS. Your cancer doctor, specialist nurse or GP can tell you what is available near you. You can read more about being assertive in our section on managing other people’s reactions to your body changes.