Coping with Hodgkin lymphoma

Coping with a diagnosis of Hodgkin lymphoma can be overwhelming. There is help and support available for you and your family. Find out what you can do, who can help and how to cope.

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 emotionally difficult for you

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.

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 other than your own friends and family.

Or you may prefer to talk to a counsellor.

Specialist nurses

Specialist nurses are usually your first point of call if you have any questions or concerns. Make sure you know who your specialist nurse is and have their telephone number.

Specialist nurses can help if you’re finding it difficult to cope or if you have any problems. They can get you the help you need. They can also give you information.

Physical problems

Hodgkin lymphoma and its treatment may cause physical changes in your body.

Your doctor or specialist nurse will help you manage any changes. They can refer you to other health professionals such as:

• dieticians

• symptom control team

• physiotherapists

Physical changes can be difficult to cope with and may 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.

Feeling tired

Feeling tired and lethargy can be a problem during treatment and for a while after treatment. Resting but also doing some gentle physical activity can help.

Menopausal symptoms

Some treatments can cause an early menopause and you might have symptoms such as hot flushes and sweats. Your nurse will talk to you about how to cope with these symptoms.

Hair loss

Chemotherapy treatment for Hodgkin lymphoma can cause your hair to thin and fall out. You may lose some or all the hair from your head. It can also affect your eyelashes, eyebrows and other body hair.

Losing your hair can be upsetting and there are things you might be able to do to reduce it. You can discuss this with your doctor or specialist nurse. Your hair will usually grow back when treatment finishes.

Infertility, relationships and sex life

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

Some of the treatments for Hodgkin lymphoma can cause an early menopause in some women, which means you can no longer have children. Some men may 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.

Support at home for you and your family

Hodgkin lymphoma and its treatment can cause symptoms and complications that mean that you might need some care and support at home. How easy it is to access support at home varies a little but do talk to your GP or specialist nurse if you are having problems getting help.

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.

District and community nurses

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 specialist 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.

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.

Support for family, friends and caregivers

A cancer diagnosis affects family and friends too.

Cancer chat

It’s a worrying time for many people and we want to be there for you whenever - and wherever - you need us. Cancer Chat is our fully moderated forum where you can talk to others affected by cancer, share experiences, and get support. Cancer Chat is free to join and available 24 hours a day.

Support groups and Hodgkin lymphoma organisations

You may find it helpful to go to a charity or support group to talk to other people affected by Hodgkin lymphoma.