Contents
Part 3
Where to get more information and help
What should I say?
Just relax and be yourself. It’s better to say, “I don’t know what to say” than something you don’t mean, or to avoid the situation completely.
• Just say, “How are you going?” every now and again so your friend can talk about how they are feeling if they want to (or not if they don’t).
• Your friend is not expecting you to have all the answers or to offer advice. Just let them know you care.
• You don’t have to be cheerful and positive. It’s OK to let them know you find this hard too.
• It’s OK to say the word ‘cancer’.
• It’s OK for there to be silent moments. Don’t rush to fill them up.
• You don’t always have to talk about serious stuff, sometimes your friend will just want to talk about normal things and to catch up on the goss.
Remember: Sometimes your friend will want to talk about it and other times they will definitely not want to talk about it. The best plan is to follow their lead.
Try not to be offended if your friend chooses not to talk, or if they open up to someone else. This doesn’t mean you have done anything wrong. They might gravitate towards people who have gone through a similar thing.
Tips for listening If your friend does want to talk:
• Don’t change the topic, or interrupt.
• Don’t judge or try to change their feelings.
• Reassure them that whatever they feel is normal and understandable.
• Show you can relate to their feelings by saying things like, “That sounds really hard”.
• Ask questions to show you’re interested.
• Don’t fill in the silent spaces, it’s OK to just be quiet together.
• Don’t jump in with your own experiences of illness or grief.
• Keep what they say private, unless they ask you directly to tell someone else.
• Encourage them to talk to others too, especially if you are concerned about what your friend tells you.
“The least helpful thing was friends pressuring me to take my wig off, which I was embarrassed and shy about.” Alex
What should I not say?
Despite our best intentions, some of the things we say when we are trying to be helpful can be taken in a different way by someone who is stressed and upset.
Best to avoid:
“I know how you feel.”
You don’t, because you’re not them. Only your friend really knows how they feel.
“Don’t worry. You’ll be fine.”
Cancer is unpredictable. If your friend feels sad or negative or afraid, that’s OK.
“Everything happens for a reason.”
There’s no reason why anyone gets cancer. Don’t put pressure on your friend to find some greater significance in their experience.
“You’re so brave.”
Don’t put pressure on your friend to appear strong and hide how scared they might really feel.
“Stay positive. My grandma was given a week to live and she’s still here twenty years later.”
It doesn’t always help to compare different experiences. Cancer is different every single time.
“Cheer up. It could be worse.”
Cancer is a big deal. It’s OK for your friend to be freaked out and think that the whole thing sucks.
Sometimes you might make mistakes. But don’t dwell on the things you shouldn’t have said or could have said better.
The biggest mistake would be to not try to talk at all.
Further down the track
Often people get heaps of support when they are first diagnosed, but later on it can seem like everyone has forgotten about it or thinks that they should be ‘over it’ by now.
Cancer can go on for a really long time. And its effects can linger even after treatment is finished.
When treatment ends:
• When your friend has finally finished their treatment, their hair grows back and they go back to school, it’s easy to think that everything will snap back to normal. But ‘normal’ may not look exactly the way it did before.
• There might be lasting physical effects that will never go away and things they won’t be able to do anymore, like mucking around, playing sport, or staying up late.
• Your friend might have trouble getting a job, or studying because they still have issues with concentration or energy. • They might have had to rethink their plans or dreams for the future.
• Their outlook on life might be different. Even their identity or sense of who they are can change. Maybe before cancer they were the joker, or the sporty one, or the academic, but cancer has altered this.
• There might be ongoing uncertainty and fear that the cancer will come back. There will never be a guarantee that nothing bad will happen.
• Roles and relationships in their family might have changed.
• They might feel guilty for surviving when others didn’t.
• They might not “trust’’ their body and be worried when they have aches or pains.
• They might worry about telling new people and being treated differently.
Beyond cancer
Some people say that an experience with cancer never actually ends. There are so many things that continue to impact their life that there isn’t really an ‘after’ to cancer at all.
The way your friend feels about their experience will be really unique. Some people might want to talk about it a million times. Some people might feel uncomfortable talking about it at all. Other people will just want to put it all behind them.
It can be important not to ignore what has happened, however long ago it was. Keep checking in with them and asking how they are going, even ten years later.
If cancer comes back
There is a very small chance that cancer can come back after a period when it seemed to be gone. This is called a ‘relapse’. It happens because some cancer cells were left behind despite the treatment they received.
The cancer may still be curable, but it can feel like the end of the world to have to go through it all again.
Your friend might feel many of the things they felt when they were first diagnosed – their feelings might even be more intense this time.
Your friend will need as much support now as they ever have.
Here are some thoughts to offer them:
• Hope is flexible. There is always something to be hopeful for.
• You have gotten through this before and you can do it again.
• You are not alone.
“When my friends were first told I had cancer they were really helpful and wanted to just drop everything and see me. But after about the first month most of them backed right off and didn’t keep the link of communication with me.” Bailey
Friendships may change
Some friendships will grow stronger through an experience like this. But other friends will drift apart and some friendships might end.
A lot of people say that a crisis shows you who your true friends are. But other friends will drift apart and some friendships might end.
Your friend has gone through a big life-changing experience that will affect them in a lot of ways.
They might develop a new perspective on life and think different things are important now.
You will also develop new interests and views as you grow up and change and you may get to a point where you realise you don’t have that much in common anymore.
It can be really sad when friendships end, but it’s not necessarily anyone’s fault. Be forgiving and remember that friends will come and go throughout your life, cancer or no cancer.
“Some have stayed friends, others haven’t. The ones that have stayed have definitely become closer.” Kym
Glossary
Benign: A tumour that is not cancer and is unlikely to spread.
Biopsy: The removal of a small piece of tissue from the body to look at under a microscope.
Cancer: A general term for over 100 diseases that have uncontrolled growth and spread of abnormal cells.
Carer: A family member or friend who looks after someone who has a chronic illness (like cancer) or disability.
Chemotherapy or ‘chemo’: The use of special drugs to treat cancer by killing cancer cells or slowing down their growth.
Chronic illness: A medical condition that is permanent or lasts for a long time.
Counsellor: A professional who is trained to give emotional and practical support to people who are going through tough times.
Diagnosis: The identification of a disease.
Malignant: A tumour that is a cancer.
Metastasis: A cancer that has spread to another part of the body. Also known as a secondary tumour or cancer.
Oncologist: A doctor who is a specialist in treating people with cancer.
Palliative care: Treatment that focuses on relieving side effects or symptoms of a disease, but will not cure it.
Prognosis: The likely outcome of a person’s disease. Cancer has a different outcome in every single case.
Psychologist: A professional who helps with emotional and mental well being.
Radiation therapy or radiotherapy: Treatment using X-rays to kill cancer cells, stop them growing or reduce pain.
Relapse: The return of signs of cancer after a period when it seemed to be gone.
Remission: When there are no signs or symptoms of active disease.
Side effects: Problems caused when cancer treatment affects healthy cells in the body.
Social worker: A professional who provides information as well as emotional and practical support for someone who is going through difficult times.
Surgery: An operation to remove or repair a part of the body.
Symptoms: Signs of an illness, such as pain, fever or nausea.
Terminal: When a disease can’t be cured.
Transplant: The replacement of tissue with tissue from the patient’s own body or from another person.
Tumour: Abnormal growth of cells that clump together and crowd out normal cells.
X-ray: A type of high-energy radiation. In low doses, X-rays are used to spot diseases by making pictures of the inside of the body. In high doses, X-rays are used to treat cancer.
Where to get more information and help
Information and support services for your friend:
Canteen helps young people cope with their own cancer or cancer in their family. Visit the website to join our online community, get some answers and chat to a counsellor if you want to.
Specialist treatment and support for young people with cancer aged 15-25 is provided by the Youth Cancer Services (YCS) based in major hospitals throughout Australia.
Cancer Council provides information and support to families dealing with cancer. Access Cancer Council in your local state from this national website.canceraustralia.gov.au Information and resources provided by the Australian Government, including the Cancer - how are you travelling? resource.
Redkite provides emotional, financial and educational help for young people (aged 0-18) with cancer and their families.
Camp Quality provides free recreation programs and other support for children (aged 0-14) who have cancer and their siblings.
Useful phone numbers
Canteen 1800 226 833
Cancer Council Helpline 13 11 20
Kids Helpline 1800 55 1800
LifeLine 13 11 14
