Other people's reactions

Some people worry that older people in the family or children will not cope with the news. It is usually best to tell your family/whānau and your closest friends about your cancer sooner rather than later. If you do not tell your family, they may sense that something is wrong.

You may find your friends and family don’t know what to say to you: they may also have difficulty with their feelings. Some people feel so uncomfortable they avoid you. Others expect you to lead the way and tell them what you need. You may feel able to approach your friends directly and tell them what you need, or you may prefer to approach a close family member or friend to act as an agent to speak for you.

The Elephant in the Room

“There’s an elephant in the room. It is large and squatting, So it is hard to get around it. Yet we squeeze by with ‘How are you?’ and ‘I’m fine...’ And a thousand other forms of trivial chatter. We talk about everything else – except the elephant in the room.

There’s an elephant in the room. We all know it is there. We are thinking about the elephant as we talk together. It is constantly on our minds. For, you see, it is a very big elephant. It has hurt us all. But we do not talk about the elephant in the room.”

An extract from “The Elephant in the Room” by Terry Kettering

Some people will want to tell you stories of relatives’ or friends’ cancers, or talk about alternative remedies or miracle cures. At times you may find this helpful, but if not, it’s okay to tell people you don’t want to hear their cancer stories right now.

While you are having treatment your needs should come first. Some friends are better at doing something practical to help than sitting and talking. Some find it so difficult that they may stop visiting for a while. Everyone is different.

“People have shown concern in so many ways: by holding my hand after surgery, letting me cuddle their babies and play with their kids, leaving messages on my answering machine, emailing their best wishes, and by not being too afraid to ask how I am.” Joyce  

Parenting with advanced cancer

Should children be told?

  • Children like to know about anything that affects the family.
  • Children will pick up that something is wrong. If you protect them by saying nothing, they may have fears which are worse than the real situation.
  • Not talking about cancer may suggest it is a subject too terrible to be discussed. This may lead to your children having an abnormal fear of cancer or other illness.
  • Children may find out about your cancer from someone else, or get misleading information from other sources.
  • Children can feel isolated if they are not told. They might feel they are not important enough to be included in a family matter.
  • Children are good at noticing things but poor at understanding what they mean. For example: “Grandad died in hospital. Now Dad has to go into hospital. He is going to die too”, or “I was cross with Mummy when she told me to pick up my toys. Then she was ill. Maybe I made her ill.”
  • Children who know the situation can be a comfort to you. You won’t need to feel secretive and isolated in your own family.
  • Children have an amazing ability and capacity to deal with truth. Even very sad truths will relieve the anxiety of too much uncertainty. We cannot take their sadness away, but if we share our feelings and give them information about what is happening, we can offer them support in their sadness.
  • Coping with cancer in the family can be an opportunity for children to learn about the body, cancer, treatment, and healing. They can learn about feelings and the strength of the human spirit in difficult times.

Children need assurance that there will be someone there to look after them when you get sicker. Talk to your children about who the adults are who will be there for them.

It is important to talk to their teachers about your situation so that they are aware of the changing needs of your child and can be prepared to address any questions and concerns your child may have.

Teenage children

Adolescence is a time of exploration, experimentation, and introspection. Teenagers strive to be independent while still wanting to be taken care of by their parents.

When a parent is diagnosed with advanced cancer, it presents new and unique challenges to the teenager and his/her family/whānau.

  1. Teenagers are unpredictable. Recognise that there is a variety of responses teenagers may have, and keep in mind that teenagers may be uncomfortable with some or all of their feelings and thoughts about your cancer.
  2. Teenagers want detailed information. This is especially true when it comes to information about diagnosis, treatment, and prognosis. They may seek out further information on their own in addition to what you have provided.
  3. Teenagers need to know the truth and may feel particularly sensitive to information they feel is incomplete or inaccurate.
  4. Teenagers need privacy. They may or may not want to talk about the experience with their family. Reassure your teenagers that they can receive support from other sources, like an aunt, a friend’s parent, a teacher, somebody from your church, or another member of their extended family/whānau.
  5. Teenagers often write about and reflect upon their inner thoughts. Encourage your teenagers to share these feelings and concerns. They can also channel this energy into sport, writing a diary, or other creative arts.
  6. Teenagers who want to contribute should be encouraged to participate in caring.
  7. Encourage teenagers who want to accompany their family member to treatment in order to see the facility and meet the treatment team. This can help them feel more in control about how your medical care is provided.
  8. Teenagers need consistency. Make an effort to ensure that they still attend usual activities and social events.
  9. Teenagers struggle with the need for independence. A parent’s illness may make this more difficult. Teenagers may need a break from the situation at home; for example, a family holiday, a trip with peers, or a regular night out.
  10. Teenagers are often self-conscious. A teenager whose parent has cancer may feel different. To help your teenagers understand there are others going through a similar experience, you might suggest that they participate in a support group, peer-to-peer network, or online chat room. (Source: CancerCare)
  11. Skylight (0800 299 100) is a national organisation which supports children and young people who are dealing with change, loss, and grief in their lives. For more information, visit Skylight’s website.

If you are a single parent it may be especially difficult to plan, and you might want to discuss your situation with someone who can offer expert advice, such as a lawyer or social worker. Your local Citizens Advice Bureau is able to refer you to low-cost legal advice.

Adult children

Adult children will struggle too, particularly if they do not live in your town. You may feel you have to, or want to, carry on as the head of the family, reassuring everyone that things are the same as always.

Adult children can become aware of their own need to have their parent forever available.

“That night, while looking at my small daughter as she slept, I cried. I thought, ‘No! Don’t you dare die Mum. I’m not ready for you to die yet. I still need you.’ Selfish thoughts? Maybe. But they were real ones.” Sally

Parents

It is one of life’s most painful experiences to be the parent of someone with advanced cancer. It goes against nature to outlive your children. Your parents are likely to feel overwhelmed with sorrow and helplessness at first. It may take them a long time to adjust.

“I tried to tell Mum, but she blocked it, and I thought, so be it. She’ll feel the pain all in good time. Why force it on her now?” Fiona

Partners

We use the word ‘partner’ to mean husband, wife, girlfriend, or boyfriend.

“We have faced many trials and traumas together, always managing somehow to get round, get over, or get under them. There had always been a way out. The diagnosis was ovarian cancer, giving a one-in-three chance of survival.” Wayne

Often, you may find that your thoughts and feelings are not ‘in synch’. This can cause frustration and misery, or it can help you to cope: as each new event presents itself, you may find that one of you expresses hope while the other is more pessimistic. Sometimes it can be hard for your partner to help you to make decisions about treatment. Your partner may overwhelm you by trying to protect you.

“My husband thinks if you talk a lot about it you worry more.” Carol
“When the outlook was reduced my husband went into himself. He was ‘brassed off’. He had visions of us growing old together. I had to tell him you don’t lie down; you go on with your life together otherwise you’re waiting to die really.” Stephanie

There may be role changes for each of you. It may be an opportunity to teach your partner new skills. Feeling frustrated about not being able to do what you used to is almost universal among people as their cancer advances.

It helps to work out what you need from your partner when things are tough and ask for it. Women often say that their biggest single need is for a sympathetic listener; many male partners acknowledge their difficulty providing this.

If your partner struggles with this don’t expect that he or she will be able to change, especially in a time of stress. Try to find someone else to provide this for you. If family and friends are not available there may be a counsellor, social worker, or support person available either through your hospital or local Cancer Society.

“I have often lacked the ability to encourage and to say the right thing at the right time.On the plus side, I have become quite adept at using the washing machine and the clothes drier.” Lloyd

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