Effects on parents of a child with cancer
Having a child diagnosed with cancer will affect you as parents or carers, and the people close to you.
Understandably, you’ll feel worried and stressed as you come to terms with the diagnosis and what it means for your child to go through treatment. You'll worry that your child will suffer and that your family life is going to be completely disrupted. At first, you may worry that your child is going to die.
When you’re first told the diagnosis, you may feel numb, confused, or unable to hear or remember information about your child’s diagnosis or treatment. You may also feel overwhelmed by painful and powerful emotions. These reactions are normal - remember the doctors and nurses are there to help you at this time.
You may want to find out as much as possible about the cancer and its treatment. There’s a lot of information on the internet but not all of it is reliable, so talk to the doctors about where to look.
The CCLG can send you a leaflet called How can the internet help us? It gives tips on finding reliable and user-friendly information about cancer care and treatment on the internet.
Everyone is different - you may read about a child in a similar situation to yours, but they may have a very different experience. Remember, too, that statistics are only helpful to a degree. They’re based on large numbers of people and can’t say what will happen with your child in particular.
You can ask the doctors and nurses questions again if you’ve been unable to take it all in. It may help to have someone else with you, and to write down your questions beforehand.
Some of the feelings you may experience are described briefly below. Your feelings are likely to change over time and you may not feel all the emotions described here.
Fear and denial
You may feel scared, anxious and panicky about what’s going to happen and what the future holds. Understandably, parents often want to deny that such a terrible thing could happen to their child. Some people may feel tempted to take their child from one doctor to another. At times, you may feel the fear is almost too much to bear, such as when your child is going into the operating theatre and you wave goodbye.
It’s natural to feel sad or depressed at times. Every parent wants their child to be healthy, happy and carefree. Cancer and its treatment can have a big impact on you and your child’s life. At times, you may have feelings of hopelessness. You may find it difficult to eat or sleep, or feel as though you have no energy for the things you need to do each day.
Parents often say that they feel overwhelmed by the enormity of the situation. These painful and unpleasant feelings can’t be avoided, and you're likely to have them at various times during your child’s illness. It’s important to have support to help you through these times.
It’s very common for a parent to feel guilty if their child has cancer. Some people wonder if it was something they did or didn’t do that caused the cancer, or they feel that it’s a punishment for something they did in the past. Sometimes, parents blame themselves for not noticing their child’s symptoms quickly enough.
Many parents will have strong feelings of guilt, but it’s important to remember that you're not responsible for causing your child’s cancer.
It’s normal to feel angry at times. You may feel angry with the hospital staff for putting your child through tests and treatment. You may feel angry that you have to cope with such uncertainty, and the unfamiliar world of hospitals, doctors and nurses. Some people even find that they’re angry with their child, as it’s their illness that is causing so many problems for the family. This can be distressing but it’s also normal.
Parents can feel angry at each other, especially if they have different ways of coping with their child’s illness. For example, one parent might want to talk about it a lot and the other might just want to get on with normal life as much as possible.
You may also feel angry with family or friends who make thoughtless remarks or are too busy to give you support.
Or you might feel frustrated with people who avoid you because they don’t know what to say.
There's no right or wrong way to feel. You’ll probably find that your emotions go up and down a lot during the days and weeks following the diagnosis, and that your feelings change over time.
There are many people who can help you deal with these difficult feelings and emotions. You might want to talk to someone close to you, such as your partner or other family member. However, some people find it easier to talk to someone they don’t know so well such as a healthcare professional or perhaps a colleague at work.
The staff at the hospital, including social workers, specialist nurses and doctors, can listen and talk to you. You can also talk things through with Macmillan’s cancer support specialists. Or you can contact CLIC Sargent or Leukaemia CARE.
There are many organisations that offer support to parents of a child with cancer. Many hospitals treating children have parent groups where you can meet other parents with similar fears and worries.
Looking after an ill child can cause unexpected expenses and difficulties. A CLIC Sargent social worker will be able to give you advice about benefits you may be entitled to and other financial support, such as grants.
Looking after yourself
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It’s important to take care of your own needs and to not feel guilty about doing so. For example, eating and sleeping well, exercising if possible, dealing with any health problems and taking regular breaks will help you cope and care for your child.
Parents often find it hard to express their grief and fears to each other, with the result that they bottle up their feelings, become tense and quarrel more than usual. Different people have different ways of coping with stress and what helps one can irritate another. If you can, try to talk to each other as openly as possible, and be as supportive and patient as you can.
Understandably, when you’re feeling unhappy you may want to avoid seeing friends and taking part in social activities. But it can help to keep up with your usual interests as much as possible and if your energy allows. Having a break and being distracted from the cancer and its treatment will do everyone good.
Some of your friends may not know what to say to you, so it may be up to you to bring up the subject of your child’s illness. Others may surprise you with their sympathy and understanding.
Grandparents, aunts, uncles or other close family relatives often have reactions similar to those of parents and may struggle to deal with some of the same emotions. They usually need to be given accurate information about what’s happening and, if possible, be asked to give help and support.
One of the worries you may have when you hear that your child has cancer is what to say to friends and relatives. Every family is different, but many parents find it helpful to be open and frank about the situation. It can help to keep family and friends informed over the weeks and months of treatment. It’s then easier for them to understand any changes in behaviour and to offer suitable help and support. There may be a family member or close friend who could take on the role of keeping people up-to-date if you don’t feel up to doing this yourself.