Coping and support when you have oesophageal cancer

Coping with cancer can be difficult.  Help and support are available. There are things you can do and people who can help you cope with a diagnosis of oesophageal cancer.

Your feelings

You might have a number of different feelings when you're told you have cancer.

You may feel a range of powerful emotions at first such as feeling shocked, upset and find it difficult to take in anything else that is being said to you. Other emotions include feeling:

• numb
• frightened and uncertain
• confused
• angry and resentful
• guilty
• sad

You may have some or all of these feelings. Or you might feel totally different. You may feel them a few at a time or altogether, leaving you feeling exhausted.

Everyone reacts in their own way. Sometimes it's hard to take in the fact that you have cancer at all. You need to do what’s right for you to help you cope.

Helping yourself

You may be more able to cope and make decisions if you have information about your type of cancer and its treatment. Information helps you to know what to expect.

Taking in information can be difficult, especially when you have just been diagnosed or given sad news about your outlook. Make a list of questions before you see your doctor. Take someone with you to remind you what you want to ask. They can also help you to remember the information that was given. Getting a lot of new information can feel overwhelming.

Ask your doctors and nurse specialists to explain things again if you need them to.

You might feel that you don’t want to know much information straight away. Tell your doctor or nurse. You will always be able to ask for more information when you feel ready.

Remember that you don’t have to sort everything out at once. It might take some time to deal with each issue. Ask for help if you need it.

You can also do practical things such as:

• making lists to help you
• having a calendar with all appointments
• having goals
• planning enjoyable things around weeks that might be trickier than others

Talking to other people

Talking to your friends and relatives about your cancer can help and support you. But some people are scared of the emotions this could bring up and won’t want to talk. They might worry that you won't be able to cope with your situation or be afraid they will say the wrong thing.

It can strain relationships if your family or friends don't want to talk. But talking can help increase trust and support between you and them.

Help your family and friends by letting them know if you would like to talk about what’s happening and how you feel.

You might find it easier to talk to someone outside your own friends and family. We have cancer information nurses you can call on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday.

Or you may prefer to see a counsellor.

Physical problems

Oesophageal cancer and its treatments are likely to cause physical changes in your body. These might affect the way you feel about yourself.

Changes such as weight and hair loss can affect your self esteem and the way you relate to other people. Your dietitian can help you maintain your weight and your nurse can help you look at ways to cope with hair loss.

Tiredness (fatigue) and feeling lethargic a lot of the time are common during treatment and for some months afterwards. Resting but also doing some gentle physical activity can help.

It is important that you feel as well as you possibly can. Tell your doctor or specialist nurse about any symptoms you have so they can help to control them.

If you have advanced cancer, community cancer nurses or symptom control nurses can help to support you at home. Or your local hospice may be able to help you. This can include:

• complementary therapies
• counselling
• short stays to give you a break or to help with symptoms

Relationships and sex

The physical and emotional changes you have might affect your relationships and sex life. There are things that you can do to manage this.

Coping practically and financially

You and your family might need to cope with practical things including:

• money matters
• financial support, such as benefits, sick pay and grants
• work issues
• childcare
• Blue Badge applications
• help with travel costs
• changes to your house

Talk to your doctor or specialist nurse to find out who can help.  You might be able to get some benefits for yourself and the person caring for you. You might also be able to get grants for heating costs, holidays and other household expenses related to your illness.

Getting help early with these things can mean that they don’t become a big issue later. It may be helpful to see a social worker. Many hospital cancer departments have a social worker available for patients.

Support at home for you and your family

You might need some care and support at home due to oesophageal cancer or its treatment. Find out about practical and emotional support available to you. 

GP and community nursing support

Your GP manages your healthcare when you are at home. They can help with any medical problems that come up. They can also make referrals to a community service for you. The availability of the different community services may vary, depending on where you live.

Community or district nurse

These nurses work in different places in your local area and may visit you in your home. They can:

• give medicines or injections
• check temperature, blood pressure and breathing
• clean and dress wounds
• monitor or set up drips
• give emotional support
• teach basic caring skills to family members where needed
• get special equipment, such as commodes or bed pans

Community specialist palliative care nurse

Community specialist palliative care nurses include Macmillan nurses and hospice nurses. They specialise in symptom management such as pain control, sickness, and other cancer symptoms. They also give emotional support to you and your carers.

Marie Curie nurse

Marie Curie nurses give nursing care to people with advanced cancer in their own homes. They can visit during the day or spend the night in your home to give your carers a break.

Community dietitian

The community dietitian can help you cope with eating problems. They can suggest ways of dealing with diet difficulties.

Eating problems can be difficult to cope with. They can cause tension within relationships or families. Events and eating out with friends can be much harder when you have difficulty eating. Talking to your dietitian or a counsellor can help.

It is important to get help as soon as you start to have problems.

Social workers

Social workers can help to support you with your situation at home. They can arrange:

• home helps to help with shopping or housework
• home care assistants for washing and dressing
• meals on wheels
• respite care

Your social worker can also help with money matters by checking you get all the benefits you are entitled to. Or they can advise you about charity grants for things like extra heating costs or special diets.

Contact a social worker yourself by getting in touch with your local social services office. Or ask your hospital nurse or your GP to refer you.

Local support services

There are many other sorts of help you can get. Services vary from place to place.

Sometimes local voluntary groups offer sitting services. Someone comes to stay with you while your relative goes out.

Good neighbour schemes offer befriending or practical help with shopping or transport.

Support groups

It might help to share your experiences with others who are going through the same thing. Your specialist nurse might refer you to a local support group. 

The Oesophageal Patients Association (OPA) can offer information and support.

Telephone helpline: 0121 704 9860 (9am to 5pm Monday to Friday)

The NHS website has a service that tells you about local information and support.

Towards the end of life

It’s natural to want to find out what is likely to happen in the last few weeks or days of life.

You might need to choose where you want to be looked after and who you want to care for you.