Impact on family

"This is my personal opinion, but I think it’s actually harder on the families than it is on the person suffering the illness" (Interview 18).

Having a person with cancer in the family changes the way that members of the family relate to one another and therefore can have a profound effect on the lives of everyone concerned including your grandparents, parents, brothers and sisters. Here young people talk about the impact that their illness and treatment had on family members and how their cancer changed family relationships.

Parents are naturally shocked and devastated when their son or daughter is diagnosed with a life threatening illness such as a cancer. As a result they can feel angry and powerless and say that would much rather have the cancer themselves than see their child with the disease. Parents may try to compensate by trying to do everything they possibly can for their son or daughter. One young woman got a particular insight into how helpless you feel when someone you love is diagnosed with cancer when her mother also needed treatment for her own cancer. They became even closer as a result of the shared experience.

Just as she was finishing treatment her mother was also diagnosed with ovarian cancer. She thinks that her father had a particularly hard time.

Some parents tended to bottle up their emotions as their own particular way of coping. Those who were badly affected turned to anti-depressants to help them through. One 21-year-old man had a mother who was already depressed even before he was diagnosed with leukaemia.

His mother had depression so when he was diagnosed with leukaemia he tried to prevent his family from finding out.

Says that has to reassure his mother that he will not relapse. Sometimes this means that he does not tell her about health problems that worry him.

Describes how her illness has affected her family. Her mother wants to know everything but her younger sister has not been able to talk about it.

Many busy families have to decide which parent will stay in hospital with the young person and which will carry working or looking after the rest of the family. Usually it was the mother who stayed with in the hospital, and many also gave up work to do so. Brothers and sisters may sometimes have to be looked after by friends or relatives. Fathers often had to continue working and make do with less frequent visits or phone calls. Like young people without cancer, those who were being treated with cancer, who had separated or divorced parents sometimes did not see their fathers at all while they were ill.

Says that everyone in the family was affected but particularly his mother who had to stop working while he was on treatment.

Parents tend to cope with difficult situations by assuming different roles and responsibilities. Mothers were often the ’nurturers’, making sure that they could be around during their treatment and follow up appointments. Fathers tended to be more practical and find out as much information about the cancer as they possible could. One young woman said that her father learned to clean her intravenous Hickman line and gave her some of the injections that she needed. A young man said that since his diagnosis although his dad had given up smoking, he did not think his father really understood what he was going through with his cancer treatment.

Her mother, father and sister all helped her during her illness but in very different ways.

Many young people said that they tried to reassure their family by trying to remain positive throughout their treatment. They did not want their families to be upset or suffer so they put on a brave face (see ’Coping with cancer’). At the same time, they also realised that members of their family were trying hard to be positive for their sakes during the treatment. Quite naturally and very thoughtfully, everyone was trying to protect everyone else. However there is also, under these circumstances, frequently a very real need to talk about your innermost feelings and if members of your family cannot talk to one another you might want to consider confiding with some trusted friend or relative outside of your immediate family.

He thinks that his positive attitude has helped his parents and grandmother to cope with the fact that he has cancer.

Said that his grandparents and friends frequently visited him in hospital and they used to tease him. In turn, he tried to stay cheerful to avoid upsetting his family.

He enjoyed the love and support from many family members but also found it useful to see a counsellor who specialises in post cancer treatment.

Young people found that the support, love and attention they got from their families was priceless and felt very reassured to have this stable force there supporting them. Young people from one parent family backgrounds particularly stressed the support and strong bonding they have with their mothers.

Has become much closer to his Mum but his Dad (who does not live with them and has given up smoking because of the cancer) does not seem to understand what he's going through.

His father did not visit him but he has felt the support of many family members in the UK and India who offered prayers and fasted for his recovery.

Brothers and sisters can find it especially difficult to have a sibling with cancer, and this can be worse the younger they are. Even very young children are often aware that cancer is a life threatening illness so it is probably best for parents to talk to them honestly about what is happening and answer their questions as best they can. Some brothers and sisters were very upset by the changes made to family routine during the treatment period, especially if it was all happening far away from home and their mother had to be absent looking after the sibling with cancer. Brothers and sisters who had to stay with friends, a child minder or relatives could sometimes feel very left out. The young person with the cancer could often be very aware of this and felt guilty because they were taking their parents’ attention away from the rest of their family. A young man who was only 14 when his brother was diagnosed with Leukemia started to look after his other younger brother and his sister when his parents were at the hospital.

Feels a bit guilty because when he relapsed his parents concentrated on him and he thinks that his younger sister felt left out.

Thinks that her 7-year-old sister had a hard time because their mother spent most weeks at the hospital.

Suggests that his brother and sister had less attention because his parents were so preoccupied with him and his illness.

When his brother was taken seriously ill to hospital he talked to his other brother and sister so they could understand what was going on.

One fourteen-year-old boy, who was the brother of a young cancer patient, talked to his headmistress when his brother was in hospital. He said he would have liked to have talked more to someone who understood how he was feeling at the time.

Said that the only person he talked to during the time his brother was in hospital was his headmistress but he wished he could have talk to the sibling of another young cancer patient.

Sometimes brothers and sisters suddenly become much kinder, nicer and more caring than usual - though this didn’t always last long after their sibling’s cancer treatment had stopped! Siblings also sometimes admitted that they had found it difficult visiting their brother or sister in hospital because they looked so ill and so different.