Coping with non-Hodgkin lymphoma

Coping with non-Hodgkin lymphoma (NHL) can be difficult. You may find you have a lot of different feelings. There is help and support available. There are things you can do, people who can help and ways to cope with a diagnosis of NHL.

Your feelings

You might have a number of different feelings when you're told you have NHL. You may feel shocked and upset. You might also feel:

• 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. Everyone reacts in their own way. Sometimes it's hard to take in the fact that you have cancer at all.

Experiencing different feelings is a natural part of coming to terms with cancer. All sorts of feelings are likely to come and go.

Finding out about your outlook (prognosis)

There are lots of different types of NHL. The likely outlook (prognosis) varies, depending on the lymphoma type and how well you are. Some NHLs grow quicker than others. And some are more likely to come back than others. But many NHLs are curable or can be controlled for many years. 

Not everyone wants to know about their prognosis. Reading information about survival can be difficult. You can save it to read another time when you feel ready. And it’s okay if you don’t want to read this information at all.

Survival statistics can be useful, but cannot tell you exactly what will happen to you. The best person to do this is your doctor. Talk to them or to your specialist nurse if you want to know about your likely prognosis. 

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 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 emotionally difficult for you

Talking to other people

Talking to your friends and relatives about your cancer can help. But some people are scared of the emotions this could bring up. They might worry that you won't be able to cope with your situation.

It can strain relationships if your family or friends don't want to talk. But talking can help increase trust and support between you. Help your family and friends by letting them know 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. Many people find counselling helpful.

You might find it helpful to talk to other people affected by lymphoma. Cancer Chat is our free online discussion forum for people affected by cancer. It is a safe space to talk to other people in similar situations, and find information and support.

Cancer Research UK nurses

Coping physically

NHL and its treatment might cause physical changes in your body. These changes can be very difficult to cope with and can affect the way you feel about yourself. They can affect your self esteem and the way you relate to other people, especially close family and friends.

You might also have to cope with feeling very tired and lethargic a lot of the time, especially for a while after treatment, or if your NHL is advanced.

If you are having a sexual relationship, one or all of these changes may affect your sex life. 

Some of the treatments for NHL can cause an early menopause in some women, which means you can no longer have children. Some men also find that they are infertile after treatment. This can be very difficult to cope with.

Coping practically

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.

CLIC Sargent can offer help and support for parents who have a child recently diagnosed or living with childhood cancer. They can also help you access financial support.

Support at home for you and your family

GP and 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 hospital beds, special mattresses, commodes or bed pans

Community services vary from area to area. Your hospital specialist nurse can tell you what is locally available to you.

Community palliative care nurses

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 nurses

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.

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 is usually other help available but services can 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.

Local cancer support groups often offer practical help. And they are a good source of information about services in your area. Ask your doctor or nurse about local groups.