Coping and support when you have kidney cancer
Coping with kidney cancer is difficult. There are specialists who can help you and your family cope. There are also things you can do.
If you have advanced kidney cancer it’s normal not to be able to think about anything else. But everybody reacts differently. Some people find it helpful to know more about the cancer and the treatments they might have. Many people find that knowing more about the situation can make it easier to cope with.
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
Specialist nurses
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.
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 phone number.
Family and friends
Talking to your family and friends 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.
If you find it easier to talk to someone other than your friends and family, you may prefer to speak to a counsellor.
Cancer Chat
Chat to other people affected by cancer in our online forum. Our friendly team of moderators and nurses are also on hand to support you.
Physical effects
Kidney cancer and its treatment may cause physical changes in your body. Some changes may result from having surgery, such as scars. Or having targeted or immunotherapy drugs might cause changes such as thinning of your hair or hair loss.
These may affect the way you feel about yourself. They can affect your self esteem and how you relate to family, friends and other people.
Or there may be changes inside your body that affect your energy levels and how you feel physically. You may have to cope with feeling very tired (fatigue) and lethargic during treatment and for a while afterwards.
You may want to make some changes such as giving up smoking or eating a healthier diet. This can be difficult at first. But it will help keep your kidneys or remaining kidney healthy.
Your doctor or specialist nurse will help you manage any changes. They can also refer you to other health professionals such as:
- dietitians
- the symptom control team
- physiotherapists
psychotherapists 
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
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
Your doctor or nurse will tell you before you go home who to contact if you have any problems.
If you are having treatment for kidney cancer you should contact your hospital advice line if you have any side effects.
GP
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 nurses
These nurses work in different places in your local area and may visit you in your home. They can:
-
give medicines or injections
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check temperature, blood pressure and breathing
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clean and dress wounds
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monitor or set up drips
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give emotional support
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teach basic caring skills to family members where needed
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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.
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.
Spiritual support
Some people find great comfort in religion. You might find it helpful to talk to:
- a local minister
- a hospital chaplain
- a religious leader of your faith
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 groups
You may find it helpful to contact a charity or support group to talk to other people affected by kidney cancer.
