Difficulties with Eating or Swallowing

Some people living with cancer and its treatment may experience difficulties with eating. This can be related to the cancer itself and/or the side effects of treatment. It is also common for people to experience weight loss or poor appetite as a symptom before being diagnosed. This page aims to help you understand and manage eating difficulties that you may be experiencing.

Why am I struggling to eat?

Depending on your diagnosis and type of treatment, you may experience physical symptoms that can impact upon your eating behaviour and appetite. These may include, but are not limited to:

Issues within the mouth and/or throat e.g. having a dry mouth due to poor salivary secretion, experiencing changes in taste, feeling pain when chewing/swallowing, feeling like food gets stuck
Changes in bowel functioning e.g. being more constipated or having diarrhoea more frequently than usual
Feeling sick, experiencing heartburn or indigestion
Changes in appetite e.g. eating too much or too little
Feeling too tired to cook and prepare healthy meals

Some of these symptoms may be particularly relevant to you if you have digestive, oesophageal or head and neck cancer. There are many strategies you may find useful in order to manage them. The following link https://www.macmillan.org.uk/information-and-support/coping/maintaining-a-healthy-lifestyle/preventing-weight-loss/sample-menus.html#231719 on the Macmillan website provides ‘meal ideas’ for ways you can increase your food and energy intake. You can also ask your GP or hospital doctor to refer you to a dietician who will be able to provide further nutritional support.

Why do I feel different about food?

Following diagnosis and/or treatment for cancer, you may have needed to adjust what and how you eat. It is not uncommon for people to experience difficult thoughts and feelings such as:

"If I eat then I will be sick"
"If I eat then food will get stuck and I will choke"
"It’s too painful to eat"
"It’s such an effort to eat"
"Everything I eat tastes strange"
"It’s too embarrassing to eat in front of people now"
"I feel too sick to eat"

Below we have described some common psychological difficulties that people living with cancer may experience in relation to eating, as well as some useful strategies that you can use to manage these.

Anticipatory Nausea and Vomiting (ANV)

What is it?

Some people experience symptoms of nausea (feeling sick) during and after chemotherapy. Sometimes, you may feel nauseous or even vomit in the lead up to your treatment session – this is called Anticipatory Nausea and Vomiting (ANV) and occurs in at least 1 in 3 patients who have chemotherapy. One of the reasons for this is that your brain may have made a connection between the chemotherapy environment (e.g., smells in the hospital, the sight of the ward etc.) and the feeling of sickness that can be caused by the side effects of chemotherapy. This is the same type of mechanism that happens when your mouth waters at the sight of a nice piece of cake; your brain has learnt to produce saliva in anticipation of eating the cake.

Additionally, if you experience sickness/vomiting during or after chemotherapy, your brain may get used to expecting anxiety and feeling sick in a chemotherapy setting. It is also possible for ANV to become more widespread, generalising to other areas of your life connected with having treatment so that just walking to the hospital or perhaps visiting a friend in hospital can evoke symptoms of ANV.

What can I do?

Stretch and Relax

Aside from anti-sickness medication, research shows that you can reverse the symptoms of anticipatory nausea (feeling sick) through relaxation of the body. This involves tensing and relaxing different muscle groups in the body whilst being mindful of your breathing. You can try it out for yourself by following these steps. Further information is available on our leaflet ‘Stretch and Relax’, which you can download here:

Sit down in a quiet, comfortable place where you will not be disturbed, and take about 5 deep breaths.
Starting with your left leg, bring your awareness to how it is feeling at rest. Then, take a deep breath in and tense all the muscles in your leg as hard as you can for 5 seconds. Try to really focus on the feeling of tension in the muscles. (Please note, if you cannot tense any part of your body due to illness, disability or treatment, just concentrate on relaxing that body part, saying to yourself "relax" as you do so)
After 5 seconds, exhale and relax the leg – notice how it feels to release the tension from this area. Deliberately draw your attention to the difference between the feeling of tension and relaxation.
Stay relaxed in this way for about 15 seconds, then repeat these steps on the other leg, and then with the following muscle groups: Stomach and chest; Arms, shoulders and neck; Face.

If you struggle to read and engage in the exercise, you can find a guided commentary here https://www.youtube.com/watch?v=912eRrbes2g. Remember, it is important to practice this exercise even at times when you are not feeling sick or anxious; this will help you to manage these difficult feelings more quickly when they do arise.

Drawing a ladder to help address your anxieties step-by-step

It may also be helpful to make a list of the situations that trigger feelings of nausea/sickness. You can then construct a ‘ladder’, placing the least nausea-inducing situation at the bottom and what makes you feel most sick at the top. For an example, please download a ladder worksheet here.

Drawing a ladder of situations is the first step towards challenging your anxieties. Start by slowly exposing yourself to these situations whilst engaging in brief relaxation exercises. Keep focusing on your feelings of relaxation whilst acknowledging that there may be a sense of discomfort (e.g. sickness, pain). Try to allow that feeling of discomfort whilst breathing around it and creating space for it.

Anxieties about food getting stuck

Sometimes you may worry about food getting stuck in your throat after swallowing – this is a very rational and common fear to have. Whilst you may have experienced food getting stuck in the past, this does not mean that it will happen every time. Some of the ways in which you can manage avoiding food getting stuck is by eating smaller portions, cutting up your food or eating foods that are easier to swallow e.g. mashed potato.

However, worries about food getting stuck may persist even though there is no physical cause. The symptoms of anxiety can also make it feel like food is stuck or that you have difficulty swallowing – we know that anxiety stimulates your nervous system, which can trigger muscle tension in the throat. Although this is an unpleasant experience, you are not at physical risk of choking. You might find it helpful to use some relaxation exercises in order to manage your anxiety while eating, such as the ‘Stretch and Relax’ technique described above. You can also make a list of specific foods that make you feel anxious and arrange these in a ‘ladder’ with your most challenging foods at the top (similar to the concept above).

It can feel easier to avoid the foods that cause you anxiety, but this can make it difficult to enjoy the foods you like and get the nutrition that you need. Many people are able to return to eating whatever they like by setting small, manageable goals and practicing exercises to help cope with feelings of anxiety.

Changes in taste

If you are struggling to cope with changes in taste following chemotherapy and/or radiotherapy, consider the impact that this is having upon you. Has it stopped you from engaging in social activities e.g. going out to eat? Has this left you feeling disconnected from your family and friends? If so, there might be alternative ways to manage changes in taste so that you don’t have to exclude yourself from social eating situations. This may include:

Eating spicy/strong-tasting foods if you cannot taste food as well (this includes frozen fruit lollies)
Eating smaller portions more frequently
Looking at the menus beforehand to see if there is food that you may enjoy if planning to eat out
Asking the chef to put extra ingredients in that you know you can taste

Most people find that their sense of taste returns to normal over time and encouraging yourself to try out new/different foods may help with this process.

Communicating with your specialist nurse and other professionals involved in your care before, during and after treatment will also help you develop ways to adjust.

The function of food

We often eat food for lots of different reasons e.g. to reward ourselves after working hard or doing something well; to comfort ourselves when we feel down; or to celebrate when we feel happy. If you are struggling with eating, you may feel that the pleasant functions of food are lost and that there is nothing to replace them with. However, it can be helpful to take the time to examine the ways in which you typically use food. You might want to think about an alternative way to serve that function. For example, could you reward yourself for something achieved by taking the time to watch a favourite TV programme or speaking to a friend on the phone? Could a partner, friend, pet or treasured object serve as a comfort when you are feeling down? Planning in advance how to deal with situations where you would normally have used food, can help you to cope better and feel less loss or anger at the fact that food may no longer play the role in your life that it once did.

Food and eating socially

For many people, eating is a social activity that they engage in with family and friends. Whether that means sitting down for dinner with family in the evening or catching up with a friend over coffee; these food-based interactions are an important part of our everyday routine and social life. Therefore it is not uncommon for individuals living with cancer to experience difficulties in relation to this when their eating habits change. These may include, but are not limited to:

Feeling self-conscious about eating in front of others, and so avoiding public situations such as going to restaurants
Worries about food getting stuck in your throat in front of others
Conflict in relationships due to differing opinions about what you "should" be eating
Anxiety about how changing your normal eating routine impacts those around you
Difficulties dealing with how your identity has changed in relation to food – for example, if you used to identify as being a ‘big eater’ and now have to limit your portions or have significantly lost weight which has altered your body image

It is important to recognise that you are not alone if you find changing your eating habits is impacting your relationships and social life. Having to adapt to this can be challenging for many people living with a long term health condition.

Being open about your difficulties with those around you is the first step towards understanding what adjustments you can make together when it comes to eating. Remember that although you may not be able to eat and socialise in the same way as before, you can still share valuable moments with friends and family involving food. You can include them in the process of learning new recipes suitable for your needs – the Recipes for people affected by Cancer Macmillan Cookbook is a great place to start. Similarly, making healthy choices in your diet may encourage those around you to make their own positive lifestyle changes; much of the information in the Macmillan leaflet Healthy Eating and Cancer is also relevant to those without a diagnosis of cancer. In this way, making healthy dietary changes can become a shared experience.

If it is not possible to continue to share food as a way of socialising, it is important to think about how to keep those relationships and not lose social contact for fear of embarrassment or inconvenience. Examples might be meeting for a drink (soft drink or hot drink) rather than food; meeting after they have eaten for a shared activity or sitting with them but just having a drink or light snack while they have a meal. This is likely to feel strange at first and you may want to talk to your friends and family about this in advance. You may wish to explain that it is more important to you to see them, rather than miss out because you can’t eat as you used to. This sort of conversation is likely to have a positive effect in strengthening your relationship, and mean that they feel valued by you. This may help your friends and family to find other ways of connecting with you without focusing on food.

You may want to think on your own, with friends and family or your health professionals about how to respond to comments about your changed eating habits. Anxiety about such comments can often lead people with eating difficulties to avoid social situations and miss out on important social contact and pleasurable activities. You may decide to answer any questions honestly, giving brief details about your cancer, or you may prefer to give a more vague reply. How you respond will depend on your personality and the person asking the question (you may choose to explain in more detail to a friend or relative, but give a brief answer if the person is a stranger e.g. a waiter). You might want to rehearse your response – either on your own or with a close relative or friend. However you choose to respond, by planning ahead, you can face the situation feeling more in control and so more confident.

There are other people out there living with cancer who may have similar experiences to you when it comes to difficulties with eating. Support groups can provide a space to talk about these difficulties and help you expand your network of social support. You can visit the Macmillan website to find groups near you.

How will making these changes help me?

Maintaining a diet that caters to your individual nutritional needs can be beneficial in many ways. It can help you sustain a healthy weight, give you more energy and minimise your risk of reduced immunity. Importantly, finding ways to cope better with your anxieties in relation to food/eating can help to maintain the social aspects of your life e.g. spending time with friends and family – this, in turn, may help to improve your overall mood. Remember, in order to develop and sustain lifestyle changes to support your physical and emotional wellbeing, it is important to work alongside your clinicians and learn about what you can do to help yourself e.g. from reading Macmillan booklets, this website or speaking to experienced others. Whether you are just starting or finishing treatment, it is good to keep in mind that taking charge of your nutrition can improve your quality of life.