Cancer in the School Community
A guide for staff members Cancer in the School Community A guide for staff members
First published March 2008 © The Cancer Council New South Wales 2008 ISBN 978-1-921041-65-8
Writer and Editor: Laura Wuellner Designer: Suzanne Pye, Starfish Design Cartoonist: Greg Smith Cover art: Katherine Chadwick, Designland Contributor: Carol Fallows Series editor: Alyssa White Director, Cancer Information and Support Services: Gillian Batt Manager, Supportive Care Development Unit: Dr Kendra Sundquist
Images on pages 8 and 9 courtesy of The Cancer Council Victoria. Table on pages 18 to 21 and “Gemma” case study on page 43 adapted from When a Parent Has Cancer: how to talk to your kids (The Cancer Council NSW, August 2007, pages 16 to 17 and 21).
Acknowledgements We are grateful to many school staff members, parents and young people, whose real-life stories have added to the richness and relevance of this book.
We thank the expert reviewers: Warwick Chipman, Professional Officer, NSW Secondary Principals Council; Leigh Kurth, Senior Project and Services Officer, Redkite; Kate Lovelace, Student Health Coordinator, NSW Department of Education and Training; Jeremy Medlock, consumer; Katrina Sheraton-Yu, Education Program Coordinator, Back on Track; Dr Michael Stevens a m f r a c p , Senior Staff Specialist, Oncology Unit, The Children’s Hospital at Westmead; Tim Rogers, General Manager, National Services, Redkite; Jane Turner, Senior Lecturer, Department of Psychiatry, The University of Queensland; Maria Twigg, Grant and Projects Manager, Redkite; and Daphne Walshe, Oncology Community Clinical Nurse Consultant.
We also thank staff members of private and public schools across NSW, and employees of The Cancer Council NSW. Your feedback has been instrumental in the development of this book.
The Cancer Council New South Wales The Cancer Council is the leading cancer charity in NSW. It plays a unique and important role in the fight against cancer through undertaking high-quality research, advocating on cancer issues, providing information and services to the public and people with cancer, and raising funds for cancer programs.
This booklet is funded through the generosity of the people of NSW. To make a donation to help defeat cancer, visit the Cancer Council’s website at www.cancercouncil.com.au or phone 1300 780 113.
Before commencing any health treatment, always consult your doctor. This booklet is intended as a general introduction to the topic and should not be seen as a substitute for your own doctor’s or health professional’s advice. All care is taken to ensure that the information contained here is accurate at the time of publication.
The Cancer Council New South Wales 153 Dowling Street Woolloomooloo NSW 2011
Cancer Council Helpline: 13 11 20 Telephone: (02) 9334 1900 Facsimile: (02) 9334 1741 Email: [email protected] Website: www.cancercouncil.com.au About this book Who this book is for
Cancer in the School Community is a resource wide range of people. This book will also for public and private school staff members be useful for parents, students and family who would like to better support students, members. parents and colleagues with cancer. We hope it will provide you with the information and Cancer affects not only an individual and tools you need to understand and respond to their immediate family, but also has a ripple issues that arise when someone you know is effect throughout the school community. It affected by cancer. can help to acknowledge your feelings and work through them with the help of others Although this book was written for an and by using resources from organisations audience of public and private school staff including the Cancer Council NSW. members, the content is also relevant to a
How this book was developed
Cancer in the School Community evolved from interviews with experts in oncology – To avoid gender-specific references, we have such as oncologists, nurses, social workers, used third person plural pronouns (“they”, pyschologists and counsellors – school “their”) in place of third person singular pronouns (“his or her”, “him or her”) throughout this staff members, family members, CanTeen, publication. Camp Quality, the NSW Department of Education and Training, hospital school staff and students.
The quotations and stories in this book are authentic, however some names have been changed to protect people’s privacy. How to use this book
This publication is a resource and starting Please keep in mind that Chapter 7: Cancer, point for those seeking information and death and the school community may be advice about supporting someone with confronting for some readers, and may not cancer. There are practical strategies for be applicable to your school community. supporting colleagues, parents or students with cancer, and there is information about cancer, grief and support resources. The double-page spread Cancer in the school While you may choose to read the book in community: 10 ways your school can help one sitting, we encourage you to read each can be photocopied and distributed to start chapter as it becomes relevant to your discussions about cancer (see pages 4 to 5). school. Each section explores a particular You can also contact the Cancer Council issue your school community might address Helpline on 13 11 20 for one-on-one advice. – for example, if a staff member has cancer. Contents
Cancer in the school community: 10 ways your school can help 4
A snapshot of the best strategies for supporting a person with cancer. You may distribute copies of this section within your school community to start discussions.
Chapter One: Information about cancer 7
An introduction to cancer. This section includes information about common types of cancer treatments and their side effects.
Chapter Two: Talking about cancer 13
Information to help you talk to different audiences about cancer. It includes strategies for respecting a family’s privacy and appointing a liaison person.
Chapter Three: When a student has cancer 23
Ways for you to support a student through all stages of their cancer and help classmates understand what is happening.
Chapter Four: When a parent has cancer 39
Information about how a family member’s cancer can affect students, and tips about how your school can support the family.
Chapter Five: When a staff member has cancer 45
Facts about how cancer may impact a staff member’s life and how your school can help support someone at any stage of their illness.
Chapter Six: A principal’s guide for supporting staff 51
Tailored advice for principals on how to support colleagues with cancer, including ways to reduce someone’s cancer-related stress and how to address HR concerns.
Chapter Seven: Cancer, death and the school community 57
Guidance about students’ understanding of death, ways to prepare for death, and how to help the bereaved. It also advises on how to plan a memorial service.
Chapter Eight: Events and fundraising 67
Details about ways to raise cancer awareness in your community. This includes information about fundraising and organising a cancer awareness presentation.
Chapter Nine: Support services, resources and information 71
Contact details for the Cancer Council and other support organisations. This section also contains websites for further information and sample letters.
Chapter Ten: Glossary and chapter index 79
Information about how to define common cancer-related words for people of all ages, and an index to help you navigate this book. Cancer in the school community: 10 ways your school can help
Respect a family’s wishes Appoint a liaison person Everyone has a different preference about what information Help a family affected by they’d like to share with others, cancer by appointing a single who they want informed and point of contact within your when they want to share news. school. This liaison person can Be sure to respect someone’s keep up with a family’s ongoing wishes and ask for their input, needs and ensure information particularly if they want to keep isn’t duplicated or overlooked. their diagnosis private.
Be flexible School or work may be the last thing a person thinks about when they are diagnosed with cancer. Keep in touch Remember, a person’s schedule Stay in touch with the person and expectations may change, and who is absent, if they would like your school should try to to maintain contact. Peer support accommodate these changes. and friendships can provide a welcome relief from thinking about cancer. Keeping in touch also gives the person with cancer an opportunity to discuss any concerns that may arise. Be ready to help When you make yourself available to a person with cancer, they may feel more confident asking for assistance. Your school’s welfare or learning support officer can also provide support.
4 The Cancer Council NSW Cancer in the school community: 10 ways your school can help
Empower the person with cancer Acknowledge that the person with Utilise school networks cancer is the expert when it comes Involve key members of your school to their illness. You can also help network, such as student welfare by maintaining normality as much as staff, P&C representatives and ancillary possible and communicating openly. staff when you are developing strategies for supporting people with cancer in your school community.
Set up strategies Your school’s student welfare team or learning support team has experience working with students, families and staff members. Tap into their knowledge about the best ways to support a person with cancer.
Be sensitive to different cultural groups
People from different cultural backgrounds have their own attitudes and understanding of cancer, and it is important to be Raise cancer awareness aware that these may not be Establishing links to cancer the same as your own. Always ask in core curriculum or exploring someone for their perspective. other ways to present information about cancer can help raise awareness in your school community.
Cancer in the school community: 10 ways your school can help 5 “I wanted to keep things as normal as possible “I absolutely couldn’t have at work. That helped me keep things normal at managed if I hadn’t been able home, because I have four children, and two are to work part-time. That was young. Routine helps them cope well.” so helpful.”
Janet, primary school canteen manager with cancer Susan, primary school teacher with cancer
“The school was fantastic. The reverend, head of senior school and counsellor came to the hospital to discuss my situation with my family. They said my health was the first priority, and they laid out the options: I could either give up on Year 11 and try next year, or I could try to keep up with the minimum curriculum requirements.
My parents encouraged me to give up Year 11 and do it next year, but I didn’t want to be left behind by my friends. I decided to try to do the minimum requirements.
My parents encouraged me to stick to my decision. We established this system, where I’d try to do at least a little bit of work every day, focusing on the key concepts my teachers identified. As we went on, though, there were days when I just wasn’t up to doing any schoolwork. We called those days Chemo Days. I didn’t do any schoolwork on Chemo Days.”
Jeremy, secondary school student with cancer
“He does worry that his hair “The principal was picking my son up and taking will fall out; he has told us him to school at one stage. We lived quite a while that. He would let us know away, but the principal lived near us. It was helpful if anyone picked on him. because I couldn’t drive, and that way my son And we look out for him.” didn’t have to spend an hour on the train or bus.”
Kristin, primary school teacher of a Carmen, parent who has cancer student with cancer
6 The Cancer Council NSW Chapter One
Information about cancer
When someone in your school community is diagnosed with cancer, it is helpful to know something about the disease, its treatments and side effects. This chapter will help you understand some basic information about cancer.
7 What is cancer?
Cancer is a disease of the body’s cells, which A tumour can be benign (not cancer) or are the body’s basic building blocks. Our malignant (cancer). A benign tumour does bodies constantly make new cells: to help us not spread outside its normal boundary to to grow, to replace worn-out cells, or to heal other parts of the body. However, if a benign damaged cells after an injury. tumour continues to grow at the original site, it may cause a problem by pressing on Normally, cells grow and multiply in an nearby organs. orderly way, but sometimes something goes wrong with this process and cells grow in an A malignant tumour is made up of cancer uncontrolled way. This uncontrolled growth cells. When it first develops, this tumour may may result in abnormal blood or lymphocyte not have invaded nearby tissue. This is known cells, or a lump called a tumour. as a cancer in-situ, or carcinoma in-situ.
The beginnings of cancer
Normal cells Abnormal cells Abnormal cells Malignant or multiply invasive cancer
Boundary
Lymph vessel
Blood vessel The Cancer Council Victoria © The Cancer Council Victoria
Some benign tumours are precancerous and may progress to cancer if left untreated. Other benign tumours do not develop into cancer.
8 The Cancer Council NSW As the tumour grows, it invades surrounding tissue, becoming invasive cancer. An invasive Cancer is not: cancer that has not spread to other parts of • contagious the body is called primary cancer. • an inevitable death sentence Sometimes cells move away from the • caused by something someone has primary cancer and invade other organs and said, or a punishment for bad bones. When these cells reach a new site, behaviour. they may continue to grow and form another tumour. This is called a secondary cancer or metastasis.
How cancer spreads Primary cancer Local invasion
Angiogenesis – tumours grow their own blood vessels
Lymph vessel
Boundary
Metastasis – cells move away from the primary tumour and invade other parts of the body via blood vessels and lymph vessels
The Cancer Council Victoria © The Cancer Council Victoria Blood vessel
Information about cancer 9 Cancer treatments and their side effects
There are many types of cancer treatments. The following table provides an overview of some treatments and side effects. For more detailed information, call the Cancer Council Helpline. Facts about accommodating side effects in the school setting are included in the following chapters.
Cancer treatment / description Side effects
Chemotherapy • Side effects vary greatly from patient to patient. Some side effects start within a few • Chemotherapy is the use of drugs that hours of treatment. Others may not occur for kill or slow the growth of cancer cells. two to four weeks. Nausea and vomiting may persist for days after chemotherapy is • Chemotherapy can be administered dispensed. In some cases, symptoms may orally in tablet form, but it is most begin before the drug is administered. commonly given by injection or infusion at intervals of one to three weeks over • Most effects, such as hair loss and mouth a designated period of time. ulcers, disappear within a few weeks of stopping chemotherapy.
• Some drugs may cause cognitive impairment, which can affect work or school performance. For more information, see pages 33 and 50.
Radiotherapy • The side effects of radiotherapy are localised and depend on which parts of the body are • Radiotherapy uses radiation to kill or receiving treatment. damage cancer cells so they cannot multiply. It can be used to treat the • Short-term side effects appear towards the original (primary) cancer and to treat the end of a course of treatment, and commonly symptoms of a cancer that has spread include nausea, headaches, lethargy, (metastasised). drowsiness, hair loss and a reddening of the skin near the treatment area. • Radiation affects all cells in the area exposed to it. However, normal cells • Delayed effects of radiotherapy may include are better able to resist or recover from growth failure, thyroid nodules, infertility and its effects. a second malignancy later in life.
Surgery • The effects of surgery depend on what part of the body is affected. Pain at the site of the • This involves the partial or total removal operation is the most common side effect. of the tumour. Sometimes this requires Infections and reactions to the anaesthetic are the removal of part of the body affected also possible. by cancer (such as an amputation).
10 The Cancer Council NSW Cancer treatment / description Side effects
Steroid therapy • Temporary side effects include mood swings, sleeping problems, fluid • Steroid therapy uses corticosteroid drugs to retention, increased facial hair, increased improve appetite and reduce nausea or thirst and appetite, muscle weakness, swelling to the brain. It may be administered chubby cheeks, weight gain, abdominal orally or by injection. fat and fat at the back of the neck.
Stem cell and bone marrow transplantation • After this type of treatment, a person’s immunity levels will be very low, and • Stem cells are found in bone marrow. They they will be particularly susceptible to give the body a constant source of blood cells. bacterial infections in the first six weeks. Stem cell transplants are given to resupply the bone marrow when it has been destroyed by • A reaction called Graft Versus Host disease, chemotherapy or radiation. Disease (GVHD) can occur when donor cells attack certain organs (such as the • Depending on the source of the stem cells, skin) of the patient. The person will often the procedure is called a bone marrow have to leave school or work to receive transplant, a peripheral blood stem cell further treatment if GVHD develops. transplant or a cord blood transplant.
Hormone therapy • The impact of hormone therapy will depend on the age of the person • Hormones are chemicals produced in one part receiving treatment. of the body for transmission to another part of the body, where they exert their effects. • Males may suffer from tiredness, weight gain, hot flushes, depression, • The growth of some cancers is dependent osteoporosis, erection problems, on, or stimulated by, the presence of certain reduced sex drive and breast tenderness. hormones. Hormone therapies work by either removing or reducing the production • Females may experience blood clots, of a stimulating hormone, or by preventing weight gain, generalised swelling, hot the hormone from stimulating cancer cells. flushes, vaginal dryness and/or discharge, irregular menstrual periods and a decrease in libido.
Complementary and alternative therapies • The side effects depend on the therapies the patient is undergoing. Some • Complementary therapies, such as massage, alternative therapies may cause serious acupuncture, yoga and art therapy, are used side effects. in conjunction with conventional therapy. These therapies focus on the physical and • Complementary therapies, however, emotional well-being of a patient. often can decrease the side effects of conventional treatments. • Alternative therapies are unproven therapies used in place of traditional hospital-based therapy. For example, some patients elect to make drastic changes to their diet.
Information about cancer 11 Who gets cancer?
The likelihood that a person will get cancer In adult men, the most common forms of increases with age. An estimated one in cancer are prostate, bowel, melanoma and three Australians will be diagnosed with lung cancer. Adult women are most often cancer in their lifetime. It is predominantly diagnosed with breast, bowel, melanoma a disease that affects the elderly – children and lung cancer. For more information in late childhood have the lowest incidence. about cancer incidence rates, call the Unfortunately, however, some young people Cancer Council Helpline on 13 11 20. are diagnosed with cancer.
Common young people’s cancers
There are several types of cancer more categories of lymphoma, commonly typically diagnosed in young people. The referred to as Hodgkin’s disease and most common are: non-Hodgkin’s disease • acute leukaemia, which is a cancer that • neuroblastoma, which is a cancer of the affects the blood cells – there are two nervous system. types: acute lymphoblastic leukaemia and acute myeloid leukaemia Thanks to advancements in treatments and follow-up care, the survival rate for children • sarcoma, which is a tumour that develops and young adults is about 70%. in the bone, muscle or connective tissue • brain tumours, the most common of To find out more about the different types which is a medulloblastoma or a primitive of cancer go to www.cancercouncil.com.au neuroectodermal tumour or call the Cancer Council Helpline on • lymphoma, a cancer that develops in the 13 11 20. lymphatic system – there are two main
After my first chemo session I was okay to begin with. But within a few days I felt queasy, lethargic and fatigued. Chemo made me nauseous and gave me diarrhoea and anxiety problems.
Jeremy, secondary school student with cancer
12 The Cancer Council NSW Chapter Two
Talking about cancer
Talking about cancer is never easy, and it can be especially difficult to talk to others in your school community. Deciding who should be told and remaining respectful of a person’s privacy can be challenging.
However, your school already has an existing student welfare policy and avenues of communication which can be used to provide support for individuals affected by cancer. In this chapter, we will outline how to use your existing skills and resources to communicate with others.
13 Talking to someone with cancer
I waited until I could call the It can be very difficult for someone to talk about a cancer diagnosis. Some people wish deputy principal without to keep their diagnosis private, while others weeping. I talked to him on may want to share this information. It’s Saturday because I was important to respect a person’s wishes, no matter what they decide. diagnosed on a Friday and had a surgeon’s appointment on When you’re having a conversation, avoid giving unsolicited advice or telling the Monday, so I wouldn’t be in. person you know exactly how they feel, I told him I had breast cancer even if you have been in a similar situation. and I was happy to talk It is best to use phrases like, “That sounds really difficult” or “Hearing what you’ve about it, but I asked if he would gone through upsets me. Is there anything tell the staff at the Monday I can do to help?” morning meeting. Most importantly, just be yourself and try not to worry about doing ‘the right thing’. Shirley, secondary school teacher with cancer
Students sometimes find it especially difficult to talk to a peer with cancer. See Helping students talk to a friend with cancer on page 35 for information about how you can guide them.
14 The Cancer Council NSW Helpful conversation tips
If you talk to a person with cancer, it may • Acknowledge their feelings. It is be helpful to: acceptable for someone to feel sad or • Listen and let them lead the angry about their cancer diagnosis – you conversation. If the conversation stops, shouldn’t try to change their feelings. it’s not always necessary to fill in the • Tell the person if talking about cancer gaps. Silence can be just as important makes you emotional. as talking. • Invite them places. If you used to eat • Offer them support. For example, a lunch in the staff common room, share parent undergoing treatment may coffee breaks or sit together on benefit from a carpool service. playground duty, continue to ask the • Enjoy a laugh. People living with cancer person along. If you think they are too want to talk about other things too. ill, suggest another activity or join them Not every conversation has to revolve where they are comfortable. around illness. Students, especially, may • Ask questions if you’re confused about come to school to regain a sense of something. normality and routine.
Importance of respecting privacy
Some people wish to keep their cancer If you have a colleague with cancer, they diagnosis private. There are several reasons may want to continue working and focus on someone may be concerned with their privacy. their day-to-day activities. Some teachers worry that their students are too young to Students may see school as a return to understand cancer. They may wish to keep normality and their pre-cancer life. They their prognosis private if they don’t know also may fear the reactions of their peers. how long it will be possible to continue working. Parents or family members may want to avoid gossip or probing questions. These are legitimate concerns, and people’s Sometimes parents need more time to talk to rights should be respected unless there are relatives or decide on a treatment plan. overriding health and safety issues.
Talking about cancer 15 Appointing a school liaison person
Your school’s student welfare team can helpful and convenient to have a single point support a person with cancer by appointing of contact within the school. This ensures a willing staff member (such as a member of that one person is aware of the family’s a student’s learning support team) to liaise ongoing and changing needs. with them. In cases where students or family members are affected, a liaison person can Remember, the school community plays a provide a channel for keeping the family and central role in some families, but for others the school up to date. – often those with strong family networks – it is not as important. A family may not ask Though it can require a significant time the school for support or assistance. commitment, families usually find it quite
I don’t mind being a liaison person. I’ve gotten quite close to Mark’s mum. It’s easy to do and quite important.
Kristin, primary school teacher of a student who has cancer
Understanding cultural differences
If your school community has a mixture of making anyone uncomfortable. For diverse cultural groups, people will probably example, you can ask what kind of support have different attitudes regarding health care a colleague, family or student would like, and how to communicate about it. rather than assuming you know the best way to help. If the person is uncomfortable The word cancer can have different discussing cancer or has privacy concerns meanings for people from certain cultural due to cultural reasons, they will be able to backgrounds, and some people may not let you know. want to talk about it openly. Some cultures believe that cancer is contagious, caused by bad luck or always fatal. For more information about how different cultures regard cancer, or to obtain information It is important to be open and honest to about cancer in a different language, call the avoid confusion. When you talk about Cancer Council Helpline on 13 11 20. cancer, try to be as direct as possible without
16 The Cancer Council NSW Balancing everyone’s needs
Schools must always consider and balance accommodate their needs in the classroom the needs of students and staff members in and playground. If the teacher is aware of the community. For example, if a student the situation, they can anticipate questions has cancer, the school must respect their from pupils, colleagues or family members privacy while continuing to focus on its and distribute information. primary purpose and obligation, which is to educate students. It is essential that in all cases, the person with cancer or their parent has given their consent However, a teacher might need to know regarding who they feel comfortable knowing certain details about the student’s illness to about their cancer diagnosis.
Communicating with people of all ages
A person’s understanding of cancer depends Remember that each person is unique and on their age, maturity level and experience these are broad guidelines. with the disease. You can also read the Glossary section on The following tables on pages 18 to 21 page 80 for a list of cancer-related words. provide some basic information about how This glossary provides two definitions for some people without cancer may understand each term – one that is appropriate for adults, the illness, their possible reactions, and how teenagers and older children, and another you can talk to them about it. which is more suitable for younger children.
Often people are most disturbed by what they don’t know, so I took a very up-front approach. If people are brave enough to ask questions, I don’t think there should be fog and mirrors. No mystery.
Shirley, secondary school teacher with cancer
Talking about cancer 17 Preschool / Kindergarten-age students (3-5 years)
Understanding of illness Possible reactions Suggested approaches
• They have a beginning • thumb-sucking • Listen and be alert to level of understanding their feelings, which they about illness. • fear of the dark, monsters, may express through animals, strangers and the speech or play. • Children may believe unknown that they caused the • Talk about the illness with cancer (e.g. by being • nightmares pictures, dolls or stuffed angry with their parent • sleepwalking animals. Read a picture or thinking bad thoughts book about cancer. about a classmate or • sleeptalking teacher). This is an • Read a story about example of magical • bed-wetting aggression or other thinking. reactions. • stuttering • Preschoolers are • Explain what they can • baby talk egocentric – they consider expect; describe changes to their school schedule. themselves the centre of • hyperactivity the universe. This means • Reassure them that they • apathy they cannot yet empathise will be taken care of and with other people. • fear of separation from will not be forgotten. others (especially at • Children may think cancer • Provide brief and simple bedtime and going to is contagious. explanations. Repeat your preschool) • Illness may be regarded explanations if necessary. • aggression (hitting or as a punishment for • Encourage them to have biting, for example) naughty behaviour. fun at school or participate • repeated questions about in activities. This can help the same topic, even if it them to have fun or has been discussed achieve goals. several times • Assure them that they have not caused the illness by their behaviour or thoughts.
• Continue usual discipline and limit-setting – provide outlets for aggression that are positive, such as running in the playground. Be sure they get physical activity to use up excess energy and anxiety.
• Assure them they cannot catch cancer, like a cold or flu.
Adapted from When a Parent Has Cancer: how to talk to your kids, The Cancer Council NSW, August 2007.
18 The Cancer Council NSW Primary school-age children (6-12 years)
Understanding of illness Possible reactions Suggested approaches
• They are able to • irritability • Listen and be alert to understand more complex their feelings, which they explanations of cancer, • sadness, crying may express through and they can understand • anxiety, guilt, envy speech or play. basic information about cancer cells. • physical complaints • Use books to explain such as headaches and illness, treatment and • They still may feel stomach-aches potential outcomes. responsible for causing cancer because of bad • separation anxiety when • Assure them their behaviour. going to school behaviour or thoughts did not cause the cancer. • In many cases, children • hostile reactions, like in the middle of this fighting or yelling • Reassure them about period understand that their care and schedule. • poor concentration at parents, teachers or • Assure them that though classmates can die. school, daydreaming, lack of attention it is possible, the chances However, if a child has of someone else getting been exposed to illness • poor marks cancer are slim. A or death at a young age, counsellor or social they may have a more • withdrawal from friends worker may help initiate mature/advanced and family this conversation. understanding of death and dying. • difficulty adapting to • Let them know how they changes (such as a can help a teacher, replacement teacher classmate or parent with or new schedule after cancer. school) • Take time to listen and let • fear of performance, them know you care punishment or new about their feelings. situations • Social workers or • super-sensitivity to shame psychologists may help and embarrassment to gently broach the topic of a parent, teacher or classmate dying.
• See also the ideas on how to approach preschoolers.
Adapted from When a Parent Has Cancer: how to talk to your kids, The Cancer Council NSW, August 2007.
Talking about cancer 19 Secondary school-age children/teenagers (13-18 years)
Understanding of illness Possible reactions Suggested approaches
• They are capable of • worry about being • Encourage them to talk abstract thinking: they can different and not fitting in about their feelings, but think about things they realise it may be hard for have not experienced • desire to be more them to confide in you. themselves and feel independent and to be They may find it easier to sympathetic to others. treated like adults confide in their parents or closest friends. • They are able to begin • angry and rebellious thinking more like adults. • critical of how parents, • Listen to them, don’t just talk to them. • They are able to teachers or classmates understand that people handle the situation • Express your feelings are fragile. • depression (for example, mention that you miss a teacher • They are able to • anxiety who is on sick leave). understand complex relationships between • poor judgment and risky • Provide privacy as events. behaviour such as needed. smoking, binge drinking • They are able to or unsafe sex • Encourage them to recognise prevention maintain activities and measures and symptoms. • withdrawal friendships at school, if possible. • They are more likely to • apathy deny fear or worry in order • If they have severe to avoid a discussion. • physical symptoms: reactions, provide stomach-aches, opportunities for headaches, rashes counselling.
• more likely to turn • Don’t rely on the student feelings inward (so to take on too many extra parents, teachers and responsibilities. friends are less likely to see reactions) • Take advantage of in-school opportunities for • regression: tendency to them to learn more about lapse into previous habits cancer and receive or behaviours, such as support. watching children’s TV shows or being especially • See also the ideas on dependent on parents how to approach primary school-age children.
Adapted from When a Parent Has Cancer: how to talk to your kids, The Cancer Council NSW, August 2007.
20 The Cancer Council NSW Adults (such as parents and staff members)
Understanding of illness Possible reactions Suggested approaches
• They are capable of • depression • When it comes to talking abstract thinking: they about cancer, different may have close friends or • anxiety people will feel family members with • withdrawal comfortable with different cancer, so they can approaches. For ways a imagine what it may be • physical symptoms such school can talk to parents like. This can sometimes as headaches about a staff member’s bring up feelings of cancer, see the Choosing sadness about their own • for some, the need to to tell parents section on experiences with cancer. talk about how they are page 49. feeling with others • They feel sympathetic to • Adults should be provided others. • putting extra energy with simple and factual into work or distracting information if a student • They are able to activities has cancer. This will alert understand the impact of them to the student’s diagnosis and treatment potential needs and on all aspects of life (for encourage them to seek instance, school and further information as personal relationships). necessary. You should • They understand complex discuss and agree on the relationships between information that may be events. shared with the students and their families. • They are able to recognise symptoms and understand prevention measures.
Adapted from When a Parent Has Cancer: how to talk to your kids, The Cancer Council NSW, August 2007.
My 15-year-old daughter is in class with a student who has cancer, and I have cancer, too. My daughter is very empathetic and now knows how to talk about cancer.
My younger children have reacted differently. My three-year-old understands what is going on – he says, ‘Mummy’s boob is sick.’ But he does act very naughty the weeks I receive chemo.
Janet, primary school canteen manager with cancer
Talking about cancer 21 Where to get information or assistance
Talking about cancer in your school about the best ways to communicate about community can be very difficult, and there cancer and deal with a diagnosis. They can are many reasons you might seek the support also send you written information, direct of experts. The Cancer Council offers a free you to resources in your area or provide you and confidential telephone information with reliable Internet links. service (called the Cancer Council Helpline) where you can discuss questions you may You can reach the Cancer Council Helpline have. Calling the Helpline costs the same as on 13 11 20. If you are calling outside making a local call. business hours, leave a message on the answering machine and your call will be The Helpline is staffed by experienced returned the next business day. cancer health professionals, including oncology nurses and counsellors. They are You can also visit the Cancer Council’s available Monday to Friday, from 9am to website, www.cancercouncil.com.au. 5pm, and can provide detailed information
22 The Cancer Council NSW Chapter Three
When a student has cancer
It is heartbreaking when a student is diagnosed with cancer. Though the experience is undeniably difficult for a family or school to address, in most cases, young people with cancer are very resilient, demonstrating maturity and wisdom beyond their age.
Your school can help a student with cancer in several ways. This chapter will teach you how to support a student through all stages of their cancer, make in-school adjustments and help classmates understand what is going on.
23 When a student is diagnosed
When a student is diagnosed with cancer, it may come as a shock to many people in Helpful tips your school community. If or when a family informs your It is difficult for families to receive this school that their child has cancer, you upsetting news, and they often describe the (or one of your colleagues) should: days and weeks after diagnosis as a • Offer support to the family. Families whirlwind. Family members not only have may not be aware of the support to come to grips with the diagnosis, but they that your school network can give, also have to make decisions about their or they may feel uncomfortable child’s treatment protocol and inform their requesting help unless approached. extended family network. This can be Your school may link the family to especially difficult for single-parent families, school counselling services. large families or parents with demanding • Inform them about the school’s usual work schedules. At this early stage, plan of action. Your school may families may not inform the school of a involve the student welfare team, student’s illness. appoint a liaison person, or notify the principal or teacher/s. Telling the family what to expect will make the process smoother. Teachers or peers may notice a student’s • Respect their wishes. A person with absences and speculate about the student’s cancer may wish to keep their behaviour. You should endeavour to minimise diagnosis private. The school rumours, even if you suspect (or have confirmed, community should respect the family’s in confidence), that the student has cancer. A liaison person or member of the student welfare wishes and give family members time team may contact the family to offer support. to decide what they would like to do.
The day in hospital when all my friends went back to school and I didn’t – well, I found that very depressing. I kept thinking of my mates back at school, and it made me feel left out. I worried I was going to miss out socially.
Jeremy, secondary school student with cancer
24 The Cancer Council NSW Setting up a communication channel
Talking and communicating openly about cancer helps people understand what is Ways to communicate happening and adjust to the news. Different Schools can use a number of methods schools have preferred ways of disseminating to communicate about cancer, such as: information into the community. This may depend on how urgent the message is, the • small group meetings content of the message or how many people • parent and teacher conferences need to be informed. The most important • school/community newsletters, thing for your school is to inform those newspapers or magazines, either immediately involved and be as candid and online or in print form direct as possible. • teaching and learning programs or information sessions The family, school staff members and liaison person should meet to discuss the preferred • letters (for some sample letters, way that the school should communicate see pages 75 to 78) about the issue. For example, some families • emails may want you, or one of your colleagues, to • classroom discussions or guest discuss cancer with their child’s classmates. speakers (such as a visit to the school Others may want your school to send a by a member of the patient’s general letter to parents about cancer. treatment team with parental consent) • direct phone calls. Communicating openly can help students to demystify health problems and let people know that it is okay to talk about cancer and ask questions. Just be sure to respect the family’s privacy and ask for consent before sharing any information.
His parents are so distressed, and his mum is the one who distributes the information to me. I don’t want to force her to relay news to us several times, so she just talks to me and I talk to the principal. She just hates to talk about it. She hates to even say that he has cancer.
Kristin, primary school teacher of a student who has cancer
When a student has cancer 25 Supporting a student during treatment
Keeping in touch How to maintain contact Whether a young person is healthy or sick, school is an enormous part of their life. It Members of the school community is upsetting when a student must disrupt could choose to: their routine because of cancer. Attending • post letters, drawings and paintings school is about more than just education – • record a tape/DVD of a school event, it establishes a familiar routine and provides or record personal messages a stable environment and an opportunity for • send photos or small gifts socialisation. • email notes, photos or videos If the student is absent for a long period of • create a website about what is time, it may be beneficial to maintain happening at school contact with classmates. Young people with • use a computer social networking or cancer find it easier to return to school if messaging system (such as Facebook, relationships with their friends have been AOL Instant Messenger or MSN maintained throughout their absence. Messenger) when not at school. Communication can make the patient feel special, as young people often look forward to hearing from friends.
Remember, not all families want to maintain close contact with the school, and the young person may not be able to reciprocate, depending on their age and prognosis.
26 The Cancer Council NSW All my teachers and friends Helping with school work were in contact via email. I was Long-term patients in some bigger public never out of touch with the hospitals may be linked to a hospital school that caters to students of all ages, from group because of email. kindergarten to Year 12. The aim of a hospital school is to provide continuity of They also sent me lots of cards education to make the return to school and letters. Being given 25 as easy as possible and to boost a young letters at once was very person’s spirits and self-esteem. overwhelming and made me When a young person is in hospital for feel very happy. People in my several days, the hospital school may collaborate with your school to organise its year also organised large cards, curriculum. It is natural to feel anxious which they got over 300 people about how the student is going to manage the work. to write on. They kept me entertained for hours! Talk to the student’s parents about their expectations about keeping up with school Jeremy, secondary school student with cancer work. A patient may not be able to manage a full workload due to their treatment regime.
Ways to support a student who is absent
You (and/or the school liaison person) can • letting the hospital know if the student help by: needs extension activities or a • providing the hospital school with remediation program outlines of the curriculum • facilitating online access to assignments • providing the hospital school with a list or applicable websites with information of necessary textbooks about school activities, if possible • sending copies of worksheets and • organising visits to the hospital by projects to the hospital school classmates, if approved by the student’s parents. • making sure the student receives school emails and any handouts
When a student has cancer 27 The Back on Track program Redkite
The Back on Track program, funded by the Redkite is a charity that supports children, Fight Cancer Foundation, aims to support young people and their families through students whose educational progress has cancer by providing financial assistance, been compromised by school absences and educational services and emotional support. periods of hospitalisation. This program It provides professional tutoring grants helps patients by keeping them educationally for students trying to catch up with school and socially connected. work and scholarships for students with a particular goal in mind. Back on Track provides a variety of services, including tutoring and access to technology, While Redkite’s educational assistance is to link the student with their NSW school. usually coordinated by hospital social When a student is enrolled in the program, workers, you can play an important role an Education Program Coordinator (who is by making parents aware of Redkite’s a trained school teacher) liaises with the support services or directly referring a student’s school, family and hospital staff to student. Patients or family members as create and implement an individualised plan. old as 21 years old can receive educational This plan may facilitate a smooth transition assistance from Redkite. for students returning to school or entering a tertiary institution on completion of their Redkite also provides telephone and email treatment. support for young people diagnosed with cancer, their families and support networks. At the time of print, Back on Track is only For more details call 1800 334 771 or visit available for young people receiving www.redkite.org.au. treatment at The Children’s Hospital at Westmead, however there are plans to expand the program throughout NSW. For more information, call (02) 9845 0423.
The Children’s Hospital at Westmead has a hospital school. They have a Years 9 to 12 group that meets around 9am to noon some days, but I was immunosuppressed and couldn’t be around other kids. The teachers came around to our bedsides to tutor us in the afternoons.
Jeremy, secondary school student with cancer
28 The Cancer Council NSW Supporting the student’s classmates
School fosters close relationships between they can ‘catch’ cancer or if their classmate students, so you can expect a range of will die. You should approach the class in a reactions when you talk to students about sensitive manner. In some cases, a member their classmate’s cancer. It’s important to of the patient’s treatment team (such as the remember that everyone reacts community nurse) may be present to help differently to a stressful you to answer the students’ questions. situation. You might notice that students are visibly Refer to the Communicating with upset. Others may people of all ages section (page be angry, confused or 17 to 21) for some strategies annoyed. Some may have no on how to talk to children of outward reaction to the news. all ages. If you are particularly concerned with fielding No matter how close a student is questions about death, to their classmate with cancer, see What young people they will have feelings about it. understand about death The best thing you can do is on page 61. communicate as openly and honestly as possible with the It is wise to establish students and their parents beforehand if some (considering any confidentiality students will be particularly requirements). susceptible to being upset because of a close association with a person with Give the students opportunities to voice their cancer. If a student becomes very distressed feelings or ask questions. They might ask they may need time out with a counsellor or some difficult or sensitive questions, like if teacher with whom they feel comfortable.
The hardest thing is speaking to her classmates. We can’t ignore the physical side effects. The class is very aware that something is going on, and they’re worried about her.
John, primary school teacher of a student with cancer
When a student has cancer 29 Supporting a student after treatment
Returning to school If you have difficulty dealing with a parent’s reaction, talk to the student welfare Getting back into a school routine is very coordinator, a school counsellor or a clinical important to children and young adults – it nurse consultant about how best to handle maintains continuity in their education and the situation. Sometimes parents need their social relationships, and it is also reassurance that the school will adequately reassuring because it reinforces the idea that monitor their child. life will go on and they have a future.
It is normal for parents to have a wide range of responses to their child returning to “When a child is just off treatment, the school school. Some may be overprotective or really needs to know about keeping them away stressed about the transition, while others from chickenpox and measles – for the first six months if they’ve had chemotherapy, 12 months may be relieved or pleased. if they’ve had a bone marrow transplant.”
Kylie, clinical nurse consultant to young people with cancer
I worried about leaving my parents and returning to school – but I didn’t tell anyone. They’d been there for me throughout my entire treatment and I was scared to leave them behind and to be doing something without their help – even though I was 17.
Jeremy, secondary school student with cancer
30 The Cancer Council NSW A student who has been absent will also have concerns when they return to school. They might worry about:
• Being left out or rejected. You can assure the student that their classmates missed their company, and though peers may be shy initially, they will eventually be more welcoming. You should prime classmates for the student’s return before they arrive.
• Keeping up with work. You can enlist the help of your school’s student welfare team or liaison • Relapsing or returning to hospital. person, or you can arrange tutoring or Some students have a compromised special assistance to help the student catch immune system due to treatment up. Assure the student that they won’t be (immunosuppression). This means they expected to be immediately up to date. are highly susceptible to contracting infectious diseases. Implementing • Being bullied or teased. Your school standard infection control measures and will have policies to counter bullying, encouraging general hygiene such as hand discrimination and harassment. Closely washing can help prevent a student’s monitor the reactions of other students and exposure to common germs. A school be aware of your school’s strategies to counsellor or parent can also assure the identify, report and address bullying student about their health. See page 75 behaviour (see page 34). Resentment on for a suggested letter to parents about the part of other students can play a part infection control. in this type of behaviour. You should equip the student with cancer with strategies to The school liaison person may also be able respond to any bullying behaviour. to assist by obtaining relevant information • Fitting in with other classmates. A student about the young person’s medical condition, who looks different (due to weight gain adjusting grading procedures or adapting or loss, hair loss, a physical disability or sporting events and physical education. a swollen face, for example) might worry This will ease the worries of parents and the about their peers’ reactions. Again, student with cancer. talking with classmates honestly may alleviate the stress.
When a student has cancer 31 Helping the student settle back in One way to alleviate these concerns in a primary school classroom is to use an A student returning to school may have to emotions thermometer, a simple device that manage side effects and delayed effects of allows the student to show how they’re treatment, which can appear months or even feeling each day. years after treatment has ended. They might have difficulties with spelling and writing, A student can decide on the feelings that reading comprehension or mathematics. should be included on the thermometer and A student might also have difficulties taking make a pointer that can move between the notes or copying information, remembering feelings. Some examples of statements might things, organising and planning, or be, “I need some space to myself today”, or completing tasks on time. “I would appreciate some help taking notes today”. The young person’s teacher or a Your school may need to make classroom aide will need to help the student accommodations for students with cancer. manage the thermometer. This may include providing catch-up work in different key learning areas, organising an in-class buddy (who can help with note taking or recording assignment due dates) or adjusting homework assignments and deadlines. You (and your school’s learning support team) should work with the student’s family to arrange a suitable routine.
In addition to concerns about academic performance, a young person might worry about how to communicate their feelings to staff or peers.
The principal introduced Sean to all the staff and they put a picture of him on the teachers’ noticeboard so any relief teachers would know who he was.
Jim, father of primary school student with cancer
32 The Cancer Council NSW Making practical modifications for students
Accessibility Sensitivity to sunlight
In some cases, students with cancer can Some students who receive treatment become physically disabled as a result of must stay out of the sunlight. Your school treatment. For example, a student may may have to ensure there are shaded have had an amputation, or they may areas or indoor activities available. need access to a wheelchair. School buildings may already be modified to meet the needs of students with physical disabilities. However, additional Central venous access devices adjustments, such as access to a lift or timetable changes, may be necessary Some students will have a central venous to ensure the young person has physical access device (line), which is a tube access around the school. inserted into a vein in the neck, groin or chest. This line allows doctors to easily administer intravenous drugs or draw blood.
If knocked or jarred, a central venous line Cognitive impairment may bleed. Ask the student’s parents whether they can participate in contact One possible side effect of cancer or its sports, and don’t allow peers to use rough treatments may be cognitive impairment. physical contact. Also, some types of Some young people with cancer may need central lines should not be submerged in more time to process information, or they water. Relevant school staff should be may have to deal with short-term memory aware if the student is not allowed to swim. loss. Some students have particular trouble solving maths problems or remembering The central line should not require regular lists of facts. maintenance from school staff unless it bleeds. In this case, the area between the You should make accommodations for line and the bleeding site should be students who struggle to keep up, such pinched or compressed while medical as providing extra tutoring, allowing assistance is sought. If a cap has fallen more time for homework or assigning an off, it may have become dirty, so it should in-class buddy to take notes or record not be inserted back into the end of the assignment information. line without medical assistance.
When a student has cancer 33 Dealing with teasing and bullying
Unfortunately, young people can be cruel to The best way to prevent bullying is to be as each other. Most teasing and bullying occurs open as possible about a student’s cancer. when a young person wants attention, feels Cancer is frightening to young people – the resentful or hurt, or doesn’t understand more students know about cancer, the more something. likely they are to be supportive.
If you work at a public school, you will be You should also realise that some students familiar with the NSW Department of may feel resentful when a student with Education and Training’s Student Discipline in cancer returns to class. They may believe Government Schools Policy, and you should their peer is receiving undue special implement strategies to prevent bullying in treatment. You can explain why the student your school community. Private schools also requires extra attention, then endeavour to have relevant anti-harassment policies. maintain a normal classroom atmosphere.
Supporting the student’s parents
When a family has a child with cancer, after-school activities, providing meals or communication with the school can provide helping with household chores. significant support. If your school has a liaison person, a buddy system, a welcoming network Remember, the school community plays a or parent contact lists, you are already set up central role in some families, but for others it to provide support. A support network can does not. Be sure to consider the privacy help in many ways, such as taking children to concerns of the family before taking action.
We’re working with his parents to help him make the transition to secondary school. We help all the kids, but we need to take special care with Jason. Because he’s ill, he must really balance education with the happiness and contentment he feels being around friends.
Kristin, primary school teacher to student with cancer
34 The Cancer Council NSW Helping young people understand cancer
It can be extremely difficult to talk to the discussion. You might practise what you children and young adults about cancer. If will say, or ask the family how they would you talk to students, you should consider like you to approach the class. See page 17 how old they are – and anticipate difficult for specific ways you can talk about cancer questions they might ask – before starting with young people.
Helping students talk to a friend with cancer
It is not uncommon for the classmates of a • Encouraging emotional expression. student with cancer to feel helpless and Painting, writing, composing music or unsure about what to do or say around participating in other activities may help them. Sometimes students will look to the student with cancer feel at ease. teachers or their parents for guidance on • Inviting a member of the student’s medical how to act, but at other times you might team to speak to the class, with the notice that the students are uncomfortable. written consent of all students’ parents, including the student with cancer. This You can help by: will help mature students gain a better • Listening to students’ concerns. understanding of what their classmate is • Encouraging discussion and talking experiencing. openly about what cancer is, its treatments and possible side effects. This will help prepare students for physical and emotional changes in their classmate. See Chapter 1 for more facts about cancer. • Answering questions, or finding out the answers if you don’t know. When you discuss the facts openly and honestly, anxieties and uncertainties will diminish. • Advising the students on how to act around a classmate with cancer. For some examples on how to guide students, refer to the following section, Advising students on how to act.
When a student has cancer 35 Advising students on how to act
You might want to help students talk to a • Try to talk normally about day-to-day friend with cancer. You can advise them to: things. You should remind students that • Acknowledge the situation. You might their classmate is probably tired of talking recommend that they say, “I don’t know about cancer all the time. what to say, but I want you to know I • Understand that the student might act a care”, “We missed you”, “How are you little differently. You can point out to going?” or “Is there anything I can do to students that aside from health-related help in class?”. modifications to their routine, their • Take cues from their friend with cancer. classmate will follow the same school By observing how their friend acts, rules as everyone else. students might learn how to respond.
Planning a lesson about cancer
In some cases, a lesson or class discussion may provide some guidance on how to about cancer can help students understand incorporate information about cancer into what is going on with their classmate. The the core curriculum. For more information NSW Board of Studies, which serves call (02) 9367 8111 or visit www. government and non-government schools, curriculumsupport.education.nsw.gov.au.
I explained what would happen when he went to hospital. I didn’t get too detailed, but I was open to questions. The students just wanted to know basic information – they’re very interested and bright. I think my approach worked. They were pleased to be told the truth.
John, primary school teacher of a student with cancer
36 The Cancer Council NSW Special provisions for the HSC
Although all students are required to meet based on their scores throughout the school course requirements, the NSW Board of term/s, rather than the usual combination of Studies (BoS) can adapt HSC assessments in-school assessments and external exams. to accommodate special needs of secondary school students with cancer. If possible, the NSW BoS prefers that Illness/misadventure provisions may also students sit their exams, then appeal for a be available for students who have family different marking procedure. However, if members with cancer. you know a student might be eligible for special provisions for an upcoming exam, The permitted HSC modifications depend you should talk to the student about their on each student’s circumstances. For options. You can contact the NSW BoS example, some students may be allowed Special Provisions Section on (02) 9367 8111 time to rest between examinations. Other or www.boardofstudies.nsw.edu.au and students may need to have physical help the student apply. Applications may disabilities accommodated. The NSW BoS take two weeks to two months to process. may also consider marking the student
The school’s special ed department organised someone to help me apply for special help for the HSC. I was a slow writer and had problems writing essays within the time limits. They arranged for extra time for me, and a laptop, because I type faster than I write. I sat all the exams at the same time as the other students, but I was in an area with other kids with the same considerations. All those accommodations were fantastic.
Jeremy, secondary school student with cancer
When a student has cancer 37 Gaining access to tertiary study
The Universities Admission Centre (UAC) EAS may help the student gain admission. has a variety of Educational Access Schemes A student would apply to both the selected (EAS) that may help a student gain access university and the UAC. Each university to tertiary study if they have experienced applies its own EAS to calculate the educational disadvantage due to student’s score and determine if they will be circumstances such as a cancer diagnosis admitted into their elected program of study. or treatment. For more information about how you If a student’s Universities Admission Index can help a student apply for an EAS, see score (UAI) has not already been adjusted www.uac.edu.au/equity/eas.html. considering their medical circumstances, an
I applied for the Broadway Scheme, which allowed the University of Sydney to give me extra marks because of my special circumstances. If my UAI was 95 and I received two extra points from admissions, I could enrol in a course that requires a 97 minimum.
It’s easy to apply for, and it’s fair. In the end, I didn’t use the Scheme because I got good enough marks. But it helps if you’re disadvantaged. It makes you feel like your uni plans won’t be ruined just because you had cancer.
Jeremy, secondary school student with cancer
38 The Cancer Council NSW Chapter Four
When a parent has cancer
When a parent has cancer, it has a profound impact on their children. Each parent addresses cancer in their own way, depending on their circumstances.
If your school is aware that a student’s parent has cancer, you might need to make a few special considerations for the student. You may note changes in a student’s attendance, school performance, social relationships and behaviour.
Though it specifically addresses when a parent has cancer, the information in this chapter is relevant if another significant person in a student’s life (such as a grandparent or guardian) has cancer. This chapter also specifically addresses the impact of a sibling’s cancer on a student’s life.
39 How cancer affects family members
Each year in NSW, about 35,000 people are told? How will it affect their lives? The diagnosed with cancer. About one-quarter of parent may make many difficult personal these people have a child under 18. decisions, experience financial strain, feel overwhelmed or become more protective When a parent is told they have cancer, their of their children. These are all normal first worries are often for their family. How reactions. will the children react? What should they be
Our routines had to change. I couldn’t drive or do the shopping after surgery. My husband did as much as he could, and my kids picked up extra responsibilities. My son got interested in cooking – he would plan out the menus.
But it was overwhelming in many ways. We were looking after my mother with dementia, too. It affects your family.
Carmen, parent who has cancer
40 The Cancer Council NSW How young people react
Children and young adults can have many ask their parent not to tell the school about different reactions to the news that their the cancer. They might not want their peers parent has cancer. A person’s response or teachers to perceive them differently. depends on their age, the relationship with their parent and their understanding These are understandable responses from of cancer. young people. Because members of your school community notice changes in a When a parent has cancer, their child may student’s behaviour, parents usually choose misbehave in the classroom, mirror their to tell select people about their diagnosis. parent’s symptoms or side effects, and be This allows school staff to create a positive distracted, sad, angry or withdrawn. A young school environment for students. person may also be unable to keep up with their school work due to changes at home For more information on how people react (for example, they may have to go straight to to cancer, see the Communicating with the hospital after school). Some young people people of all ages section on pages 17 to 21.
When my husband was sick, my son would be quite rambunctious at school. I talked to his teacher to warn her about this type of reaction.
Patricia, parent with spouse who has cancer
Changes in school performance
When a parent has cancer, their child will You, or a school liaison person, should probably be very preoccupied with what is anticipate changes in the student’s academic going on at home. Outside of the classroom, performance. You should also talk to the a young person may be acting as a carer, student’s family about changes in their spending time as a hospital visitor or expectations. While many families may hope looking after their siblings. Studying and their child can keep up with peers, others completing homework may not always be may acknowledge a need for flexible their main priority. deadlines or extra tutoring, if appropriate.
When a parent has cancer 41 How your school can help
There are many ways your school can assist • Get in touch with CanTeen, an a parent with cancer or their child. With the organisation for young people living with family’s consent, you might: cancer, including siblings and offspring. • Mobilise a group of community members to help a parent keep track of excursions, homework or school activities. They may also give the student lifts to and The NSW Board of Studies (BoS) can adapt HSC from school. assessments for students who have a family member with cancer. If you know a student • Appoint a welfare coordinator to monitor who might be eligible for special provisions, you the student’s behaviour and help keep should talk to them and contact the NSW BoS. track of assignments and school events. Visit www.boardofstudies.nsw.edu.au or call • Put the parent in touch with another (02) 9367 8111. parent who has experienced cancer.
Talking about a parent’s cancer
A young person may see school as a sanctuary be necessary and appropriate in some – a place where they don’t have to constantly situations to offer counselling support to a think about their parent’s cancer. Thus, a student who has a parent with cancer. student may not want to talk much about cancer in the school setting. You should never For general information about how a parent force a student to discuss their parent’s cancer. might talk to their children about cancer, see the booklet When a Parent Has Cancer: how If a student would like to talk about their to talk to your kids. This may give you more situation, you should involve members of strategies about how to discuss cancer in a your school’s student welfare team. It may school setting. Ring 13 11 20 for a free copy.
I went to the school counsellor, just to talk about what was going on. He didn’t know about my mum’s cancer. It might have been helpful if he’d known, but it was nice to vent to him anyway.
Katie, secondary student with a parent who had cancer
42 The Cancer Council NSW Helping classmates understand
A parent with cancer may be especially Talking about the situation can reduce the concerned about the responses of their classmates’ curiosity and gossip, and may child’s classmates to the situation. Young make life easier for the affected student. people of all ages can be particularly image- Remember that other students may not intend conscious and sensitive to others’ reactions. to be unkind – they often lack the maturity to understand appropriate ways to react. Your school may integrate information about cancer into the core curriculum or plan cancer awareness activities to teach students more about cancer.
Gemma, aged 8, asked her mother, Gayle, not to pick her up from school because Gayle was wearing a wig. Children at school had teased Gemma about the way her mother looked. Gayle confronted the issue directly.
After asking permission from Gemma, the school and her classmates’ parents, Gayle visited the class and spoke about her cancer and treatment side effects, and why she wore the wig. Once the children understood, the teasing immediately stopped, and the children started to support Gemma.
When a parent has cancer 43 When a sibling has cancer
Young people with a brother or sister who You and other school staff should work to has cancer sometimes feel overlooked adapt to the student’s schedule, monitor because of the time and energy their parents their progress and encourage them to do fun give to their sibling. They may feel angry or things or help out at school. The student jealous that things have changed at home, might even confide their feelings about lonely, guilty about their sibling’s cancer, having a brother or sister with cancer to a afraid that their sibling will die, or worried respected teacher or counsellor. You should that they themselves will get cancer and die. make their parents aware if you notice any These feelings can cause the healthy sibling alarming or out-of-character behaviour. to misbehave, withdraw from others, act demanding or clingy, feel sick, get angry, CanTeen is an excellent organisation that demonstrate ‘extra good’ behaviour, or have offers support for siblings of cancer patients. difficulty at school. See page 74 for more information on how to contact CanTeen. Your school community can provide a strong support system for a sibling of a cancer patient. If you are aware that a student’s sibling is ill, try to keep things My way of coping was keeping consistent at school. Just like a young very busy during the day. person with cancer, a sibling may view school as a safe, comfortable place. They That way I didn’t have time to might enjoy feeling normal, or even take think about it. pleasure in receiving attention from teachers or classmates. Jamie, secondary school-age sibling of someone with cancer
Respecting a family’s privacy Though some families choose to share information about their health with school staff, others may wish to keep the information private. Your school should respect a parent’s decision. Remember that the parent does not have an obligation to share information with you unless it somehow jeopardises the education of their child.
44 The Cancer Council NSW Chapter Five
When a staff member has cancer
If a staff member in your school has been diagnosed with cancer, you know it will affect every aspect of their life – including their employment. Work is an important part of life for most people – besides income, working at school may provide satisfaction, enjoyable challenges and a chance to mix with people from different age groups and backgrounds.
Someone with cancer may have to take an extended leave of absence from work, and it will probably be difficult for them to decide how to approach colleagues about their diagnosis. This chapter offers practical tips about the issues that might arise during and after treatment.
45 How cancer affects school staff
When one of your colleagues is diagnosed • Their plan of action. While some people with cancer, it has a broad impact. They will may continue working, others may take a have to confront several issues. A person leave of absence or retire. For more with cancer may have to decide: information about how staff members can modify their work schedule, see Ways to • Who to tell (and how to say it). Some reduce cancer-related stress on page 55. people may decide they want to keep their diagnosis private. Their wishes should be respected. Others may talk to the principal, a staff support officer or their colleagues. In some cases, a person with cancer will make a personal announcement, but they might also consider other methods of communicating information about their illness and any absences from work. For more information about communicating with students and parents, see the Choosing to tell students and Choosing to tell parents sections, on pages 48 and 49, respectively.
The hardest part is going for tests. I had constant tests – three-month tests, scans, doctor appointments. It takes it out of you. I would try to do it all in one day, so I didn’t have to take too much time off school, but it was exhausting…I made the decision to take six months off. The administration was supportive of my decision.
Susan, primary school teacher with cancer
46 The Cancer Council NSW How people may react
When people in your school community learn class of a teacher with cancer because they about a colleague’s cancer, there will be a feel their child’s schooling will be disrupted. variety of reactions. Some people will ask questions or be extremely helpful; others will The principal and school counsellor should pretend they don’t know or will go out of make themselves available to anyone in the their way to avoid the person with cancer. school community who needs more Uncommonly, there may be parents who will information about cancer or would like to make it clear they don’t want their child in the access counselling services.
I never actually told the students. As far as my colleagues were concerned, some were comfortable enough to be openly supportive. But some were so uncomfortable that they didn’t ever talk about it. I don’t think that those people had a lack of concern, I just think they had no idea what to say.
Shirley, secondary school teacher with cancer
When the staff member is a parent
Many employees are parents themselves, You should also be prepared to answer and this adds to their stress when they have students’ questions about the staff member’s cancer. They will likely be preoccupied with child, particularly if the child attends managing changes at home. Your school the same school. For more information may make special accommodations or offer about how to answer students’ questions, extra help if a staff member needs it. see page 29.
When a staff member has cancer 47 Choosing to tell students
A staff member is not obligated to tell Young people’s ages and maturity also affect students about their cancer, but some people their level of understanding. choose to share some information with students and parents. If they choose to talk It is recommended that a person outlines about their cancer, the person should take a what to say in advance (using words the sensitive approach. Remember, students come students will understand) and prepares to from all different backgrounds, so some of answer questions from the students. them may not know much about cancer and Sometimes it is beneficial to send home a others may have personal experience with it. letter to parents on the same day, to prepare them if their children have questions about cancer. Any letter home should also contain Students only have a right to know information about a staff member’s health if it directly access details for appropriate support impacts upon the students’ well-being. services and resources. An example letter is provided on page 77.
I don’t know that the students noticed my diminished schedule, but they didn’t ask me questions. Maybe they’d been told not to. But I honestly didn’t mind.
Susan, primary school teacher with cancer
48 The Cancer Council NSW Choosing to tell parents
If a staff member has elected to talk to Unfortunately, this is not always the case. parents in the school community about their If any member of your school community cancer, they should decide on the best way reacts in a severe or harsh manner, the to address the issue. Their approach should person with cancer should speak to your be discussed in consultation with the school principal or staff welfare officer. principal, counsellor, student welfare team and/or staff welfare officers, as appropriate.
Most families will appreciate a staff Ways to share information member’s straightforward approach, so if possible, the person with cancer should Some ways that a teacher might inform make an effort to talk to parents directly. parents are: At this time, the teacher can clearly • sending a letter – for a suggested articulate that the school will continue to format, see page 77 look after the students. • telling the P&C or a similar committee While young people sometimes aren’t • phoning the parents mature enough to realise their questions • holding a meeting with parents. may be too probing, parents will typically be much more tactful and considerate.
Some parents are concerned their child’s education will be disrupted, but if you tell them what the school is doing, they are more understanding.
Bill, primary school teacher with cancer
When a staff member has cancer 49 Dealing with side effects
People diagnosed with cancer or undergoing treatment. Sometimes getting extra sleep, treatment often experience a range of side making to-do lists and avoiding situations effects, such as nausea, vomiting, lethargy where quick thinking might be required can and depression. They can also experience help people cope with cognitive difficulties. cognitive impairment, such as short-term memory loss or difficulty concentrating. Employees should talk to their employer to ensure they can manage their workload. A person may elect to decrease their workload You can ask a colleague with cancer how for several months or years after their you can help lighten their workload.
After chemo, I definitely had some problems concentrating and remembering things, both at work and at home. I did a lot of knitting because you can pick it up and put it down.
Janet, primary school canteen manager with cancer
How parents in the community can help
If parents are aware of your colleague’s children or help around the home. Many cancer, they might offer to help in and out of teachers have their own personal support the classroom. The teacher – or a colleague network outside the school community, so serving as a contact person – can decide they may not feel comfortable combining whether or not to accept these requests. their professional and personal lives. However, others gratefully accept offers Depending on school policy, a parent’s of help. assistance as a classroom aide may be extremely helpful at this time. If a teacher with cancer is uncomfortable with direct attention, your school might The teacher with cancer may receive offers consider hosting a general fundraising for assistance outside the classroom. Parents or cancer education day. See page 68 for might offer to prepare food, mind their more information.
50 The Cancer Council NSW Chapter Six
A principal’s guide for supporting staff
Although you might feel uncertain about managing staff members with cancer, as a principal, you should be prepared to address several issues, including the impact of cancer on an employee, other staff and students; ways to reduce an employee’s cancer-related stress; and other HR issues (such as sick leave entitlements and work scheduling).
51 Cancer in the workplace
Studies estimate that between 10% and 38% School staff members with cancer are often of employees do not return to work following very anxious about returning to work cancer treatment – this varies depending on a after treatment because they will have to person’s age, position and prognosis. As more address cancer-related fatigue, employer people are diagnosed in early stages – and as expectations, and changes in their workload, survival rates and treatments improve – it is productivity and relationships with increasingly likely that an employee will colleagues and students. return to work in some capacity.
Talking to a colleague with cancer
First and foremost, you should be sensitive If there is another school staff member with and sympathetic when a staff member cancer, you may consider putting the informs you that they have cancer. employees in contact with one another (with Remember that in addition to addressing their permission). Talking to someone in a work concerns, the person may be making similar situation may be helpful. several difficult personal decisions.
If the person has been recently diagnosed, they may feel like they are being bombarded If a colleague is returning to work after an with information. When the employee first absence, set up an initial return-to-work meeting and arrange for regular consultations. approaches you, you might not want to add This will help the person to manage their to this ‘information overload’. Instead, you workload and give them an opportunity to bring can set up a meeting at a later time and come up any ongoing concerns. prepared with relevant information (such as more detailed information about working arrangements and sick leave entitlements).
The first time around, the principal was very involved. I took off for some tests and he rang me that night. When I told him the results, he was just as devastated as I was.
Susan, primary school teacher with cancer
52 The Cancer Council NSW When a colleague has a serious illness
As a principal, you can play an important role For example, it may be beneficial to organise in providing advice and guidance regarding a single relief teacher, where necessary changes to a colleague’s work schedule. The and possible. This can maintain continuity staff member with cancer may consider being for students during extended absences. released from duties, changing their workload or arranging a flexible work schedule. You should always respect a colleague’s preferences about how much they would like You can help a colleague with cancer to make to disclose about their cancer, and who they these decisions in accordance with leave would like to tell. and relief staffing procedures. You should consider the most appropriate way to minimise any impact on student learning programs and normal school procedures.
Because I knew the relief teacher, I gave her full access to everything I owned. I left my plans and diary on the desk and she would write in it as if it were hers. When I came back, I could look at what she’d done. We also left ourselves Post-its and called each other, so that was absolutely the ideal situation.
Shirley, secondary school teacher with cancer
A principal’s guide for supporting staff 53 How cancer affects someone’s colleagues
When an employee has cancer, you must also If an employee has to take a leave of attend to their colleagues’ concerns. If you’ve absence, you may also have to work with talked to the staff member with cancer, they colleagues to organise substitutes for the may ask you to liaise with colleagues on absent employee. Most colleagues are likely their behalf. Support should be offered to to be flexible and accommodating, but if employees who are upset. If your school there is a great deal of work, you may need offers an Employee Assistance Program to hire a temporary substitute or permanent (EAP), you may refer staff to this service. replacement.
How cancer affects students and families
Providing support to a colleague if they If you talk to students, assure them that you decide to talk to students and parents about are supporting their teacher and, if you are their cancer is important. You may help the aware, tell them if their teacher will be taking person to share information with colleagues, time off. You should also tell students that parents or students, if that is their wish (for school staff are available to support them. example, a teacher may be uncomfortable standing up in front of the class or calling For more information about how a teacher parents, so they may ask you for support – might talk to students, see the Choosing to see the Choosing to tell parents section on tell students section on page 48. page 49 for more information). You can reduce the burden on a colleague by helping to liaise with concerned parents.
I took an extended leave because if I had been intermittently there and gone, there would have been a huge reaction from parents and students. My decision was just borne from experience.
Susan, primary school teacher with cancer
54 The Cancer Council NSW Ways to reduce cancer-related stress
There are several ways you can reduce an A colleague volunteered to do employee’s anxiety and help them during their transition back to work. You should: my playground duty, and I was • meet regularly to talk through their grateful. While I was managing concerns (such as job security) to stand in front of classes, • adjust their work schedule and workload I didn’t think I could walk the • take a proactive role in liaising with yard and keep kids from doing parents and students, if appropriate • make necessary physical accommodations all the awful things they could • liaise with other staff (act as a contact do in a schoolyard. person or coordinate offers of help) • offer counselling/EAP support for the Shirley, secondary school teacher with cancer person and their family • support the employee’s decisions and boost their morale.
A principal’s guide for supporting staff 55 Addressing HR concerns
The following resources may be helpful if • A NSW Department of Education and you have any additional queries: Training staff welfare officer in your region. • Cancer Council publications, such as • A representative from the Association of Working with Cancer: a workplace Independent Schools of NSW or the resource for leaders, managers, trainers Catholic Education Commission NSW. and employees. There are also several publications relating to specific types of cancer and treatment. These may be relevant if you would like to learn more In the event of a death, public school principals about an employee’s cancer. For more should implement the procedures outlined in information call the Helpline on 13 11 20 the NSW Department of Education and Training’s Guidelines for Schools and TAFE or visit www.cancercouncil.com.au. NSW Colleges and Campuses: Management of • The Australian Government workplace Serious Incidents. Private school principals and employee relations website, should adhere to their school’s relevant www.workplace.gov.au. This site has guidelines. See Chapter 7 to learn more about information about industrial relations death, or see page 78 for a sample letter about a death in the school community. laws and workplace issues. • The NSW Department of Commerce Office of Industrial Relations website, www.industrialrelations.nsw.gov.au. This site has information about workplace laws and employer practices.
The main issue was that the school didn’t want me to return. But I wanted to, and I had to for financial reasons. I felt like the school saw me as a liability. If I hadn’t had a letter from the surgeon and demanded it, I don’t think they would have done much. I think schools need to take a more humanitarian approach.
Anne, primary school teacher with cancer
56 The Cancer Council NSW Chapter Seven
Cancer, death and the school community
This chapter is an introduction to a very difficult issue – one that hopefully never affects your school community. Though cancer survival rates are increasing due to better treatments and early detection, some people with cancer do die.
The information in this section will explain ways to prepare for death, how to help the bereaved, and how to break the news and organise a memorial.
57 How to prepare for a cancer death
When a cancer patient’s prognosis is poor After the person dies, you can consider and it is known that they are going to die, helping students, parents and colleagues to your school community should plan ahead organise a memorial scholarship, host a to prepare people for what might happen. special service, attend bereavement This might include: counselling or fundraise. • visiting the person, if desired by their Remember, different plans will be useful in family different situations. For example, if a • continuing to communicate with the classmate or prominent teacher has advanced person in other ways (via letters and cancer, students will probably feel very emails, for example) emotional. You might prepare students for • keeping community members up to date death by discussing it and sending about the prognosis correspondence to the person with cancer. • having age-appropriate discussions about death People who are not heavily involved in the school network may not feel directly • informing key community members of affected, so they might prepare for the the situation. situation privately.
We were told to say our goodbyes, but I wasn’t ready to say it. Friends and family always said that at least I had the opportunity to say goodbye because his death didn’t happen suddenly in an accident. The truth is, it is just as bad either way, and you are not prepared for it even if you are expecting it. From the day my father was diagnosed to the last day was the hardest eight months I will ever face.
Daniel, student with parent who had cancer
58 The Cancer Council NSW Action to take when someone dies
When someone in your school community dies – particularly a student or colleague – When death is sudden a school must decide how to inform people. Though members of your school It is usually better to tell students in their community will usually be aware if normal class groups or in small groups, someone is near death, in some cases, rather than holding an all-school assembly. a person’s death will be sudden or unexpected. It can be hard for some Staff members who people to grieve – and react to a crisis – will talk to the if they feel they were unprepared. groups of students should be briefed Students might feel shocked that they with the following weren’t informed of the person’s information: prognosis in advance. Others might feel • an outline of key points which clearly hurt or angry that they did not have the explains the circumstances of the death chance to say goodbye. For ways to help the bereaved, see the following section. • some positive words of reminiscence • details of how the school will honour the You and your colleagues will have to be person who has died, if appropriate particularly sensitive if the death was sudden. You should be prepared for more • details of the funeral service and emotional reactions, and be able to offer arrangements for attendance, if known support (such as counselling) to those and appropriate who need it. Additionally, you should • information about support and inform others (for example, by sending a counselling services available. letter to parents).
Remember, the purpose of telling students is to draw the school community together and facilitate the grieving process. Not everyone in the school community will be informed by class meetings, so it may be important for See page 78 for an example of a letter you and your colleagues to spread the informing people in your school community information through other means. For about a death. example, you can send a letter to parents, update the school’s daily or weekly bulletin and meet separately with your colleagues.
Cancer, death and the school community 59 How to help the bereaved
If someone in your school community dies, things if they aren’t interested. each person’s reaction and grieving process Correspondingly, let the person cry, act will be unique. Grief does not operate on a angry or talk about something else. timetable – it is an individual experience. • If you can, offer support to the family or Bereavement depends on someone’s closest friends of the person who has died. personality, the nature of the relationship Sending a note of sympathy is a simple and degree of attachment to the person who but effective way to show support. has died, and their access to support • Accept that it may take some time for the services. Bear in mind that it is normal for intensely painful feelings of grief to abate. someone to feel out of control, overwhelmed Eventually the bereaved will have better or even disbelief. control over their emotions, though life has forever changed. As time goes by, it If you want to help someone in your school can become easier to recognise birthdays, community mourn the loss of someone anniversaries and other significant special, you can: occasions. • Encourage the bereaved person to talk about the deceased. If you have a Bereavement support services may help you conversation, be attentive and non- or someone you know who is going through judgmental. a difficult time. See page 65 for contact • Allow the person to silently reflect on details. their loss. Don’t try to talk about other
When (my husband) Colin died, it was after his cancer metastasised and he had a sudden stroke on our son’s seventh birthday. That was so hard. When my son returned to school, though, the teacher and all the kids had made a book about Joey’s dad. It was so thoughtful, and it means a lot to have a tangible keepsake like that. The kids really don’t have many things like that.
Patricia, parent with spouse who had cancer
60 The Cancer Council NSW What young people understand about death
Children and young adults understand loss (e.g. illness or old age). They’re less likely to in different ways, depending on their age blame themselves for the loss, but they still and maturity level. It is important not to might blame someone else. consider the following guidelines too rigidly. If you have any questions about how young They will still want to know the facts people understand loss, consult a member of about death – including what happens after your school’s student welfare team or a death. Children in this age group will be social worker. better able to articulate their feelings and act sympathetically towards others. Early primary school students are only just beginning to understand that death is Secondary school students or teenagers permanent. They might realise that death usually understand the facts of death, but means someone isn’t around any more, but they might respond in a self-centred way. they may not understand the cause of death. Teenagers often feel and act as if they are Children sometimes believe death was the invincible, and the death of someone in the result of their own behaviour. school community can force them to come to terms with their own mortality. Younger students have many different concerns when they think about death. If a Students will express their feelings in parent or teacher dies, they might wonder different ways. They may abuse drugs or who will look after them or teach them. alcohol, act recklessly or skip classes. Some If a peer dies, they will wonder if cancer is young people will express their feelings in contagious, or if they will die, too. Children more positive ways, by listening to music, in early primary school will be very open playing sports or writing in a journal. with their questions, which may sometimes Teenagers usually want to spend more time be very confronting. with their friends after a loss, but they find it helpful to know other support and Later primary school students will counselling is available. They might also understand death is permanent, and they find it especially helpful to participate in a will know some reasons why death happens private or public memorial service.
Cancer, death and the school community 61 When a student dies
The cure rates of cancer for children and understandably saddened when they die. young adults have improved substantially You will need to take time to deal with your over the last 20 years. Today, more than own feelings before talking to students. It 70% overall of young people with cancer may be helpful to attend a funeral service. will be cured, and this rate is expected to increase due to improvements in treatments. The student’s classmates will react in However, some children and young adults different ways, depending on how old they do die from cancer. are. (For more information about how young people understand death, see the The death of a young person is an enormous previous section.) Their reactions will tragedy, and it can be difficult to accept. It is depend on their relationship with the important that your school community student and their own coping mechanisms. responds in a compassionate manner. Classmates should be able to turn to school staff for guidance and support. You or the student welfare coordinator should ask the family of the deceased student what the school can do to help, how the parents would like to inform staff and In some cases, schools acknowledge the death students (if they don’t already know) and if of a former student, respecting the relationship a memorial can be organised. between past and present school members. Though the person was no longer a student, If you or one of your colleagues worked their death may be confronting to some people. closely with the student, you will feel
I was devastated when Lisa died. I didn’t think it would happen. She was my best friend and school just wasn’t the same without her.
Melissa, classmate of a student who had cancer
62 The Cancer Council NSW When a parent dies
When a parent in the school community Other parents who are aware of the loss dies, the reactions of community members may reach out to help the family. Parents can be quite varied. If a parent has a child can help make meals, keep track of the attending the school or was a well-known child’s homework or provide transportation community member, people may outwardly to school and after-school activities. grieve the loss. If the parent was not particularly well known in the community, You and other school staff members will many people may be unaware of their death. probably be aware of the death, and you should explain the situation to students, if Students who know a classmate’s parent has necessary. You will need to grieve the death died will probably worry about their own in your own way and provide in-class family. They may express sympathetic support (such as more flexible homework sentiments and wonder how to support their deadlines) to a student who has lost a parent. friend. Some students may attend the funeral service to support their classmate.
The principal of the kids’ school attended my husband’s funeral. I truly appreciated that. It was above and beyond.
Patricia, parent with spouse who had cancer
When a student’s sibling dies
The loss of a student’s sibling is extremely is away from school, and try to help them traumatic. No matter how close the young manage their schoolwork on their return. It person was to their sibling, they will need is understandable that a student will be more time to mourn their loss. The student may focused on their family than on schoolwork have to take time away from school, and for a certain period of time. Sometimes it their parents will likely be occupied with is helpful to refer a grieving child or young making funeral and other arrangements. adult to counselling services, in consultation You should be supportive when the student with their family.
Cancer, death and the school community 63 When a staff member dies
When a prominent member of the Students can also take the death of a teacher community, such as a teacher, dies, there is a particularly hard. They will mourn in far-reaching impact. You and your colleagues individual ways. The principal or a counsellor will be confronted by your own feelings, can talk to students about ways to honour and in the midst of your own grief, you must their teacher and how to deal with grief. continue working and counsel students who may also be grieving.
If you are grieving, you should be made aware In some schools, or for some individuals, faith or religious tradition plays a central role in dealing of all available employee support services and with loss. If you work at a school that employs a take time to deal with your own feelings. chaplain or spiritual adviser, they may be able to provide pastoral care, religious and personal If you worked closely with the person, you advice and support to the bereaved. will probably wish to attend a funeral or memorial service. This can help you honour your colleague. A service may also allow parents and students to pay their respects.
Planning a memorial
Your school might hold a memorial service • Who will attend. You can make a public to honour the life of a student, parent or or school-wide announcement to let colleague. Community members can people know about the service. collaborate with family members to organise • Who will lead the service. There may be the event. When planning a service, you colleagues, friends, students or family should think about: who would like to be involved. • How to share favourite memories or • Whether there will be flowers or an thoughts. Will there be a program? opportunity to make charitable donations. • The setting. Will the service be held at the school? How formal will it be? Is there any special music that could be played?
64 The Cancer Council NSW Seeking professional support
Some people need professional support to deal with the death of a classmate, parent or Bereavement support services staff member. Your school counsellors can There are several community services help people who need it. that offer support to people who are A person should be referred to professional bereaved. These services include: help if they: • The Bereavement Care Centre – trained counsellors provide support • say they want to die too to adults and children who are • are extremely preoccupied with dying bereaved. Call (02) 9804 6909 or • suffer academically or at work for an visit www.bereavementcare.com.au. extended period after the death • Relationships Australia – specialist • act sad and withdrawn, or demonstrate grief counselling helps people address severe behaviour like self-mutilation their feelings and discuss their loss. • have trouble socialising See www.relationships.com.au or call • simply need someone to talk to. 1300 364 277. • The Cancer Council Helpline – Talk to your school about ways to support consultants can refer callers to local members of your school community, or services or recommend a telephone contact one of the organisations listed in support group. Call 13 11 20 or visit Chapter 9 of this book. www.cancercouncil.com.au.
Cancer, death and the school community 65 We are living with the impact of cancer every day. The fact is, my husband died of metastatic bowel cancer six years ago. My kids don’t have a father, and they transferred schools to be near their cousins. The school knows that.
But the school should also know that I’m not a single parent – I’m not someone who’s separated from their partner. I’m a sole parent, and my children have experienced a different kind of loss. This affects how they act around men their father’s age, such as teachers. I think the school should still reach out and offer support, even after time has passed.
Patricia, parent with spouse who had cancer
66 The Cancer Council NSW Chapter Eight
Events and fundraising
When a school community is confronted by cancer, people usually ask: “How can we help?” Often, a school will ask a person with cancer or their family if it is okay to arrange a fundraising program or cancer education day. These events can empower school community members, help educate others and spread a message of support and hope.
This chapter details some fundraising options for your school and information about how you can organise a cancer education day, if you choose to do so.
67 Hosting a school cancer education day
While it is preferable to integrate information about cancer into the core curriculum, your school may also consider hosting a cancer awareness and education day. Though many awareness days involve some kind of fundraising, such as buying ribbons, your school does not have to collect funds.
The cancer education day could involve brief in-class discussions or lessons from teachers. Young students could draw pictures, write stories or watch a puppet show. Older students may want to hang posters, make presentations about cancer, or set up a stall to distribute information.
Camp Quality puppet shows
Camp Quality is a not-for-profit organisation Planning tips that presents free puppet shows to primary school students. The puppet shows address When you are organising an awareness bullying and teach tolerance to children who day, you should: are learning about cancer. To date, over • Ask the person with cancer (or their 2.5 million children in Australia have enjoyed family) if they are comfortable with these shows. See page 74 for more details the idea. Though the information about how to book a Camp Quality puppet can be presented in a very general show for your school. way, families may want to ensure certain details are kept private. • Send a letter to parents informing them of the upcoming event (and providing some details). For The week Sean started, an example, see page 76. the Camp Quality cancer • Do not force students to attend. Plan alternative activities for those puppets did a performance. who are not attending. After that there was a • If you are hoping to invite guest noticeable change in how the speakers, book well in advance. Up to two months notice is usually required. other kids treated him.
Jim, father of primary school student with cancer
68 The Cancer Council NSW Fundraising options
Some families face financial hardship as a result of a cancer diagnosis. Though the primary role of schools is to educate Organised by CanTeen, the Australian students, some schools allow students and organisation for young people living with staff to organise fundraising programs. The cancer, this event sells bandannas, which are funds raised may be directly donated to the a symbol of cancer’s impact on young person with cancer, or they can support people. It is held each year in October. cancer-related charities. Some fundraising To find out more, visit www.canteen.org.au events that support people with cancer are: or contact CanTeen on 1800 226 833
Every May, more than a million Australians Relay for Life is a fun, outdoor community come together at school, work, home and in event where teams of 10 to 15 people take their community to donate money for cups turns walking or running around a local oval of tea and coffee. The Cancer Council uses to raise funds. In many cases, the event is this money to perform cancer research held on a school campus. To find out more and support those affected by cancer. Visit about upcoming Relay events, call 13 11 20 www.biggestmorningtea.com.au or call or see www.relay.cancercouncil.com.au. 13 11 20 for more facts about this fundraiser.
Focused on raising awareness and funding for research into breast cancer, this event is held The daffodil is a sign of hope, and Daffodil in October. The proceeds Day is a day to remember people touched by from sales of pink cancer, celebrate survivorship, hope for a ribbons, bracelets and brighter future and raise money to fight other merchandise go cancer. Daffodil Day is held by the Cancer towards women’s cancer research. For Council in August. To learn more, visit more information, call 13 11 20 or visit www.daffodilday.com.au or call 13 11 20. www.pinkribbonday.com.au.
Events and fundraising 69 Each May, Starlight holds a fundraiser for Make-A-Wish Australia’s national day of children and families who live with serious celebration aims to raise awareness and funds illness and hospitalisation. For further to help grant children with a life-threatening information, visit www.starlightday.org.au illness a cherished wish. To find out more or phone 1300 727 827. about Wish Day, call 1800 032 260 or visit www.makeawish.org.au.
This annual family-focused picnic event is Sponsored by the Leukaemia Foundation, hosted by The Children’s Hospital at this annual event raises funds for leukaemia Westmead to support treatments for their patients. There is also a related school-based young patients. Tickets are sold individually event called Crazy Chin Day, where students or in packages. Visit www.chw.edu.au/tbp decorate their chins to raise money. Visit or call (02) 9845 3364 for more information. www.worldsgreatestshave.com or call 1800 500 088 for more information.
A male colleague and two students offered to shave for a cure. In three weeks, the students raised almost $2,500 during roll call. A Year 8 student ended up cutting my hair.
Shirley, secondary school teacher with cancer
70 The Cancer Council NSW Chapter Nine
Support services, resources and information
A great deal of cancer research is being done in Australia and overseas, and there is continually new information available. This chapter includes a list of some reliable Internet sites, books, library resources and organisations where you can learn more about school- or cancer-related issues.
This section includes some sample letters, which you may send to families in the school community. The letters include information about cancer awareness, students and staff with cancer, and a death in the school community.
71 Finding information
The Internet can be a useful source of information, although not all websites are reliable. The websites listed below are good sources of information.
Australian
Association of Independent Schools of NSW ...... www.aisnsw.edu.au
Australian Government Workplace Relations ...... www.workplace.gov.au
Cancer Institute NSW ...... www.cancerinstitute.org.au
Catholic Education Commission NSW ...... www.cecnsw.catholic.edu.au
NSW Board of Studies ...... www.boardofstudies.nsw.edu.au
NSW Department of Commerce Office of Industrial Relations ...... www.industrialrelations.nsw.gov.au
NSW Department of Education and Training ...... www.det.nsw.edu.au
NSW Health ...... www.health.nsw.gov.au
The Cancer Council Australia ...... www.cancer.org.au
The Cancer Council NSW ...... www.cancercouncil.com.au
International
American Cancer Society ...... www.cancer.org
MacMillan Cancerbackup ...... www.cancerbackup.org.uk
US National Cancer Institute ...... www.cancer.gov/cancer_information
School support services
Schools can access support from several • the NSW Department of Education and different areas, including: Training’s Physical As Anything, which • student welfare teams, which may include provides health information, or resources school counsellors from the The Association of Independent Schools of NSW or the Catholic Education • disability programs consultants or special Commission NSW. education teams • staff welfare officers
72 The Cancer Council NSW The Cancer Council services
The Cancer Council NSW offers a variety of Patients, carers, friends and family members services which may help you support someone can participate in several peer support during their cancer journey. programs that can be accessed via the Cancer Council. These include: The Cancer Council Helpline (13 11 20) is • face-to-face support groups, which are many people’s first point of contact if they often held in community centres or have a cancer-related question. This telephone hospitals information service, which is only the cost of • tumour- or situation-specific telephone a local call, gives you an opportunity to support groups, which are facilitated discuss your concerns confidentially with by trained counsellors from the Cancer oncology health professionals. Council The Cancer Council also produces • online discussion forums, such as publications about cancer. The www.cancersupportonline.com.au, Understanding Cancer series is a good where people can connect with each other source for basic information about cancer. any time For a list of titles in the series, visit • Cancer Council Connect, a program that www.cancercouncil.com.au and go to the matches a person with cancer with a Patient Support/Booklets and Information volunteer who has been through a similar section or call 13 11 20. cancer experience
You can access other cancer-specific • the Understanding Cancer program, information at the Cancer Council’s consumer a one-day course that offers practical library, located in Woolloomooloo. Contact information about many issues for our librarian on (02) 9334 1900 or email people affected by cancer. Call 13 11 20 [email protected] to organise a loan. to learn more.
Support services, resources and information 73 Other organisations that can help
There are several other not-for-profit • Redkite – a foundation that offers organisations that support people with financial, emotional and educational cancer. These organisations include: support for children with cancer and their families. Telephone and email support is • Camp Quality – an organisation also available for young people diagnosed committed to bringing hope and happiness with cancer and their families. Go to to every child living with cancer through www.redkite.org.au or call 1800 334 771. educational puppet shows, camping programs and other events. See page 68, • Ronald McDonald House Charities go to www.campquality.org.au or call Learning Program – an educational (02) 9876 0500. catch-up program for young people whose education has been disrupted • CanTeen – the national support due to serious illness. Contact Learning organisation for young people (aged 12 Links on (02) 9534 1710 or visit to 24) living with cancer, offspring of www.learninglinks.org.au. people with cancer and siblings of people with cancer. Visit www.canteen.org.au or • Starlight Children’s Foundation Australia call 1800 226 833 to learn more. – a national organisation that supports seriously ill children by providing • Make-A-Wish Australia – this in-hospital programs, granting wishes and organisation grants wishes to young organising family escapes. To learn people with a life-threatening illness. more go to www.starlight.org.au or call Visit www.makeawish.org.au or call (02) 9437 4311. 1800 032 260.
74 The Cancer Council NSW Sample letters to communicate with parents
A letter about a child with cancer
School’s address and contact details
Date
Dear parent/guardian,
I am writing to advise you that our school currently has a student who is receiving medical treatment for cancer. Currently he/she is actively involved in the school community and recovering from treatments and their side effects.
As this student has a compromised immune system (which makes him/ her more vulnerable to disease), it is important that you do not send your child to school if he/she is unwell. For example, if your child has an infectious disease (such as the measles, chickenpox or flu), he/she should stay at home until no longer contagious. For more information about how long an illness is contagious, contact your GP or visit the NSW Health website at www.health.nsw.gov.au.
I would also appreciate it if you would notify me if your child has an infectious disease. This will allow me to assess if the student with cancer was exposed, and to notify the student’s parents, if necessary.
We appreciate your cooperation. Please do not hesitate to contact me if you have any questions.
Yours sincerely,
School principal/teacher
Support services, resources and information 75 A letter about a cancer awareness day
School’s address and contact details
Date
Dear parent/guardian,
I am writing to advise you that our school is planning to host a cancer awareness day on Monday, 1 February. We currently have a student undergoing treatment for cancer, and we would like to educate other students about cancer.
On this day, our students will present some information about different types of cancer, recent research and prevention measures. We are also asking students to donate a gold coin to a cancer research fund. This is voluntary.
Attendance at cancer awareness day activities is not compulsory, but we encourage participation. If you would rather your child not attend, alternative activities will be provided.
Please notify me by 25 January if you do not want your child to attend the cancer awareness day. Thank you.
Yours sincerely,
School principal/teacher
76 The Cancer Council NSW A letter about a staff member with cancer
School’s address and contact details
Date
Dear parent/guardian,
I am writing to inform you that one of our staff members, Mr Glen, is undergoing treatment for cancer. Mr Glen asked me to share this information with you.
Mr Glen will be taking an extended leave of absence commencing immediately. Mrs Lee, the head of the English/History Department, will be covering his classes while he is away.
Your child has been told that Mr Glen has cancer, and may have questions about it. Please let me know if I can help you talk to your child. You can also call the Cancer Council Helpline on 13 11 20 to learn more about communicating with your child about cancer.
Mrs Lee and I will endeavour to ensure that your child’s education is not disrupted by these changes and that any of your child’s needs are addressed. Please feel free to contact me if you have any concerns about changes to your child’s schedule.
Yours sincerely,
School principal/teacher
Support services, resources and information 77 A letter about a death in the school community
School’s address and contact details
Date
Dear parent/guardian,
It is with sadness that I write to inform you that Ms Christine Jones, a teacher in our Science Department, passed away yesterday. Ms Jones had been undergoing treatment for cancer over the last few months.
Ms Jones was a well-respected staff member. She was passionate about teaching young people and she will be sorely missed. We have informed the students of Ms Jones’s death and about the school counselling services available to them. Please encourage your child to access these services, if appropriate.
Many students have expressed a desire to attend a service honouring Ms Jones. I have been in contact with the Jones family, and am organising a memorial for Friday, 7 May, in place of our weekly assembly. Parents are welcome to attend the service, which will be held in the assembly hall from 10-11am. The P&C will be holding a morning tea in the staff common room for staff and parents following the service.
If you would like to attend the memorial service for Ms Jones, please contact the school office by 6 May. On behalf of our school community of students, staff and parents, I will be sending our sincere condolences to the Jones family.
Yours sincerely,
School principal/teacher
78 The Cancer Council NSW Chapter Ten
Glossary and chapter index
This glossary, which includes definitions suitable for young children, teenagers and adults, may help you define and explain common cancer-related words.
An index is also included in this chapter. You can use the index to navigate this book, as it lists the key topics addressed in each chapter.
79 Glossary
Definition for younger Definition for older children, Word children teenagers or adults
Benign Not cancer. Cells that are not malignant (cancerous).
Cancer Cancer is when bad cells – or Cancer is the name for more troublemaker cells – stop the than 100 diseases in which good cells from doing their job. abnormal cells grow and rapidly These bad cells can grow into a divide. These cells usually lump and can spread to other develop into a lump called a parts of the body. tumour. Cancer can spread to other parts of the body.
Cells The body is made up of millions Cells are the microscopic of tiny things called cells, and building blocks of the body. Our each has a job to make your bodies constantly make new body work and stay healthy. cells: to enable us to grow, to replace worn-out cells, or to heal damaged cells after an injury.
Chemotherapy Medicine that kills the bad Special drugs that kill cancer cancer cells. cells or slow their growth.
Malignant Another word for cancer. Cancer. Malignant cells can spread to other parts of the body.
Metastasis When the bad cells have travelled When cancer has spread from (advanced cancer) to another part of the body. one part of the body to another.
Palliative care Sometimes the doctors and Treatment that controls nurses can’t stop the cancer symptoms without trying to cure from growing, and they will give the cancer. someone medicine to make them feel better and ease any pain, even though the cancer can’t be stopped.
80 The Cancer Council NSW Definition for younger Definition for older children, Word children teenagers or adults
Prognosis What the doctors think might The likely outcome of a disease. happen after treatment, and This helps doctors decide on someone’s chances of getting treatment options. better.
Radiotherapy X-rays or a laser beam that go The use of x-rays to kill or injure into the body to kill cancer cells cancer cells so they can’t grow and make the cancer smaller. or multiply.
Recurrence/ If cancer cells are left in the body, When the cancer comes back relapse they can start to grow again, and because not all cells were the cancer comes back. destroyed by treatment.
Remission When the doctors can’t see any When cancer cells and more cancer cells in the body. symptoms disappear. Remission doesn’t necessarily mean the cancer is cured, but that it is under control.
Side effects Problems that can make The unwanted effects of someone feel sick or tired or treatment, such as nausea, hair lose their hair after treatment. loss, weight loss or gain, and Someone might gain or lose fatigue. weight or experience other changes. This is because the treatment stops some good parts of the body growing as well as the bad parts.
Surgery When someone has an operation An operation to remove the and a surgeon cuts out the cancer. cancer. Sometimes large parts of the body will be removed with the cancer, such as a breast or the bladder.
Glossary and chapter index 81 Chapter index
Cancer in the school community: 10 ways your school can help ...... 4
Chapter One: Information about cancer ...... 7
What is cancer? ...... 8
Cancer treatments and their side effects ...... 10
Who gets cancer ...... 12
Common young people’s cancers ...... 12
Chapter Two: Talking about cancer ...... 13
Talking to someone with cancer ...... 14
Importance of respecting privacy ...... 15
Appointing a school liaison person ...... 16
Understanding cultural differences ...... 16
Balancing everyone’s needs ...... 17
Communicating with people of all ages ...... 17
Where to get information or assistance ...... 22
Chapter Three: When a student has cancer ...... 23
When a student is diagnosed ...... 24
Setting up a communication channel ...... 25
Supporting a student during treatment ...... 26
Supporting the student’s classmates ...... 29
Supporting a student after treatment ...... 30
Making practical modifications for students ...... 33
Dealing with teasing and bullying ...... 34
Supporting the student’s parents ...... 34
Helping young people understand cancer ...... 35
Helping students talk to a friend with cancer ...... 35
Advising students on how to act ...... 36
Planning a lesson about cancer ...... 36
Special provisions for the HSC ...... 37
Gaining access to tertiary study ...... 38
Chapter Four: When a parent has cancer ...... 39
How cancer affects family members ...... 40
How young people react ...... 41
Changes in school performance ...... 41
How your school can help ...... 42
Talking about a parent’s cancer ...... 42
Helping classmates understand ...... 43
When a sibling has cancer ...... 44
82 The Cancer Council NSW Chapter Five: When a staff member has cancer ...... 45
How cancer affects school staff ...... 46
How people may react ...... 47
When the staff member is a parent ...... 47
Choosing to tell students ...... 48
Choosing to tell parents ...... 49
Dealing with side effects ...... 50
How parents in the community can help ...... 50
Chapter Six: A principal’s guide for supporting staff ...... 51
Cancer in the workplace ...... 52
Talking to a colleague with cancer ...... 52
When a colleague has a serious illness ...... 53
How cancer affects someone’s colleagues ...... 54
How cancer affects students and families ...... 54
Ways to reduce cancer-related stress ...... 55
Addressing HR concerns ...... 56
Chapter Seven: Cancer, death and the school community ...... 57
How to prepare for a cancer death ...... 58
Action to take when someone dies ...... 59
How to help the bereaved ...... 60
What young people understand about death ...... 61
When a student dies ...... 62
When a parent dies ...... 63
When a student’s sibling dies ...... 63
When a staff member dies ...... 64
Planning a memorial ...... 64
Seeking professional support ...... 65
Chapter Eight: Events and fundraising ...... 67
Hosting a school cancer education day ...... 68
Fundraising options ...... 69
Chapter Nine: Support services, resources and information ...... 71
Finding information ...... 72
School support services ...... 72
The Cancer Council NSW services ...... 73
Other organisations that can help ...... 74
Sample letters to communicate with parents ...... 75
Chapter Ten: Glossary ...... 79
Regional offices ...... 85
Glossary and chapter index 83 “There was one administrator I went “I think it’s really important to keep to for help when I was back at him at school for the social contact. school. She was so helpful. When I’m not worried about the academic I was on crutches or in a wheelchair, side. You can always get extra she made sure all my classrooms tutoring. School takes his mind off were close by. That helped me get himself, gives him something else around easily.” to think about.”
Jeremy, secondary school student with cancer Kim, mother of a primary school student with cancer
“After my surgery, I said to the students, ‘I’m going to be writing on the bottom of the board, so you’re going to have to cope.’ One of the students asked why and I said I’d had some lymph nodes removed and I couldn’t reach up to write on the top of the board. They just adapted to that.”
Shirley, secondary school teacher with cancer
“Her friends are very caring, and “Since his treatment, he’s had some they’d all have a good cry together difficulty remembering numbers like out of the blue. I’d ask, ‘What’s the times table. He’s having tutoring going on?’ and they’d say, ‘No, now and he’s got a few tricks that it’s got nothing to do with you.’ the tutor’s taught him.” You know, certain things they just Rebecca, mother of a secondary school student don’t tell you.” with cancer
Sarah, mother of a secondary school student with cancer
84 The Cancer Council NSW Regional offices
Central Coast Region South West Region 127 Erina Street, Gosford NSW 2250 1/37 Tompson Street, Wagga Wagga NSW 2650 Ph: (02) 4325 5444 Fax: (02) 4325 5688 Ph: (02) 6937 2600 Fax: (02) 6921 3680
Far North Coast Region Southern Region 101-103 Main Street, Alstonville NSW 2477 1 Lowden Square, Wollongong NSW 2500 Ph: (02) 4225 3660 Fax: (02) 4225 1700 Ph: (02) 6681 1933 Fax: (02) 6681 1936 Sydney Metropolitan Region and Head Office Hunter Region 153 Dowling Street, Woolloomooloo NSW 2011 22 Lambton Road, Broadmeadow NSW 2292 (PO Box 572 Kings Cross NSW 1340) Ph: (02) 4961 0988 Fax: (02) 4961 0955 Ph: (02) 9334 1900 Fax: (02) 9334 1739 Mid North Coast Region Western Sydney Region 121 High Street, Coffs Harbour NSW 2450 43 Hunter Street, Parramatta NSW 2150 Ph: (02) 6651 5732 Fax: (02) 6652 1530 Ph: (02) 9687 1399 Fax: (02) 9687 1118
North West Region Western Region Shop 2, 218 Peel Street, Tamworth NSW 2340 84 Byng Street, Orange NSW 2800 Ph: (02) 6766 1164 Fax: (02) 6766 7053 Ph: (02) 6361 1333 Fax: (02) 6361 1863
How you can help
At the Cancer Council NSW we’re dedicated to defeating cancer. As well as funding more cancer research than any other charity in the state, we advocate for the highest quality of care for cancer patients and their families, and create cancer-smart communities by empowering people with knowledge about cancer, its prevention and early detection. We also offer direct financial assistance for those people in hardship as a result of having cancer. These achievements would not be possible without community support, great and small.
There are many ways that you can make a contribution to support our efforts. You can make a donation, join a Cancer Council community fundraising event, or become a Cancer Council volunteer or advocate. Also, every purchase of sun protection products from our retail stores contributes financially to our work.
To find out more about how your school community, or you and your family and friends can help, please call 1300 780 113. Cancer Council Helpline 13 11 20 For support and information on cancer and cancer-related issues, call the Cancer Council Helpline. This is a free and confidential service.
Cancer Council Helpline ...... 13 11 20 (cost of a local call)
TTY ...... (02) 9334 1865 for deaf and hearing-impaired
Cantonese and Mandarin ...... 1300 300 935
Greek ...... 1300 301 449
Italian ...... 1300 301 431
Arabic ...... 1300 301 625
For further information and details please visit our website: www.cancercouncil.com.au
CAN/08/02A Date: 03/08 ABN 51 116 463 846