Oesophageal cancer - Living with oesophageal cancer

A diagnosis of cancer is a tough challenge for most people and their families. There are a number of ways you can find support to help you cope with both the physical and emotional aspects.

Support

Different things will work for different people, but some people may find it helpful to:

• make sure you keep talking to your friends and family – they can be a powerful source of support
• communicate with others in the same situation
• find out more about your condition
• set reasonable goals
• take time out for yourself

It is not always easy to talk about cancer, either for you or your family and friends. You may sense some people feel awkward around you or avoid you. Being open about how you feel and what your family and friends can do to help may put them at ease. But do not feel shy about telling them you need time to yourself, if that is what you want.

If you have questions, your GP or nurse may be able to reassure you. You may find it helpful to talk to a trained counsellor or psychologist, or to someone at a specialist helpline. Your GP surgery will have information on these. Some people find it helpful to talk to others who have oesophageal cancer, either at a local support group or in an internet chatroom.

Want to know more?

• Cancer Research UK: cancer chat
• Macmillan: share
• Live Well: talking to your kids about cancer
• Macmillan: responding to other people

Work

Having oesophageal cancer doesn't necessarily mean you'll have to give up work, but you may need quite a lot of time off. During your treatment you may not be able to carry on completely as before.

If you have cancer you're covered by the Equality Act. This means your employer is not allowed to discriminate against you because of your illness. They have a duty to make 'reasonable adjustments' to help you cope. Examples of these include:

• allowing you time off for treatment and medical appointments
• allowing flexibility with working hours, the tasks you have to perform, or your working environment

The definition of what is 'reasonable' depends on the situation – for example, how much it would affect your employer's business.

It will help if you give your employer as much information as possible about how much time you will need off and when. Talk to your human resources department if you have one. Your union or staff association representative should also be able to give you advice.

If you're having difficulties with your employer, your union or your local Citizens Advice Bureau may be able to help.

Want to know more?

• Cancer Backup/Macmillan Cancer Support: work and cancer

Money and benefits

You may find it hard to cope financially if you have to reduce or stop working because of your cancer. If you have cancer, or if you're caring for someone with cancer, you may be entitled to financial support.

• If you have a job but can’t work because of your illness, you're entitled to Statutory Sick Pay from your employer.
• If you don't have a job and can't work because of your illness, you may be entitled to Employment and Support Allowance.
• If you're caring for someone with cancer, you may be entitled to Carer's Allowance.
• You may be eligible for other benefits if you have children living at home or have a low household income.

It's a good idea to find out early on what help is available. You can ask to speak to the social worker at your hospital, who will be able give you the information you need.

Free prescriptions

People being treated for cancer are entitled to apply for an exemption certificate giving free prescriptions for all medication, including prescriptions for unrelated conditions.

The certificate is valid for five years. You can apply for a certificate by speaking to your GP or cancer specialist.

Want to know more?

• GOV.UK: benefits information
• Carers Direct: benefits for carers and benefits for the person you care for

Recovery

Most people with oesophageal cancer have an operation as part of their treatment. Getting back to normal after surgery can take time. After having oesophageal surgery it will be a few days before you are able to eat or drink. To begin with, fluids will be given to you through a drip inserted into a vein in your arm. You may also be allowed the occasional sip of water. It is important that you do not eat or drink immediately after having surgery so that your oesophagus has time to recover.

You will be able to start consuming soft foods and liquids gradually before eventually being able to eat and drink normally, as you did before the operation.

Following surgery you may find you lose some weight. This is normal and you should regain the lost weight once you are able to eat solid foods again.

Read more information about having an operation.

Other treatments, particularly radiotherapy and chemotherapy, can make you very tired. You may need a break from some of your normal activities for a while. Do not be afraid to ask for practical help from family and friends.

Follow-up

After your treatment has finished you will be invited for regular check-ups, usually every three months for the first year. During the check-up your doctor will examine you, and may do blood tests and a chest X-ray to see how your cancer is responding to treatment.

Want to know more?

• Cancer Research UK: follow-up for oesophageal cancer
• Macmillan: after treatment for oesophageal cancer
• Cancer Research UK: diet after oesophageal cancer
• Macmillan: advice on diet for people affected by oesophageal cancer

Palliative care

If you are told there is nothing more that can be done to treat your oesophageal cancer, your GP will still provide you with support and pain relief. This is called palliative care. Support is also available for your family and friends.

Want to know more?

• Live Well: end of life care
• Macmillan: looking after someone with cancer
• Marie Curie Cancer Care: information for patients and carers

Caring for someone with cancer

Being a carer is not an easy role. Responding to the needs of others can sap your emotional and physical energy, and make it easy for you to forget your own health and mental wellbeing.

Research shows that the health of many carers is affected by their caring role. If you are trying to combine caring with a paid job or looking after a family, this can cause even more stress.

However, putting yourself last on the list does not work in the long-term. If you are caring for someone else, it is important to look after yourself and get as much help as possible. It is in your best interests, as well as those of the person you are caring for.

You can find out more about looking after yourself on Carers Direct, including advice on how to get time off.