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.

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)

Some people experience symptoms of nausea 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.

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.

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 (see 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.

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. 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?

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.

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.

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.