We’re all in this together Dealing with cancer—a guide for mums
Welcome to Mummy’s Wish We are so glad you have found us and rest assured we will do our best to support you and your family through the days and months ahead. Through this guide we hope to provide you with some of the basic information you need to know including how to cope with your diagnosis; tell your children you have cancer; ask for help; and ways to enjoy time with your kids, even when you’re unwell. We understand how a cancer diagnosis can have a different impact on mums than on other members of the family, so we’re here to help you get the assistance you need and to access further support services that are available. But most importantly, we want you to know that you are not alone.
About Mummy’s Wish Mummy’s Wish is the only Australian independent charity dedicated to providing practical support to mums who are diagnosed with cancer while their children are young (under 12). Mummy’s Wish was started in 2007 by two mums who met while undergoing cancer treatment. As they chatted over chemotherapy, the pair identified a growing need for support for mums with cancer and decided to do something about it. In the years since, Mummy’s Wish has grown from a small, local support group to a national charity which aims to provide support to more than 1000 mums and their young families across Australia each year, with plans to expand and help the approximately 5000 mums diagnosed with cancer each year. We could not provide this support without the generosity of our supporters, corporate partners and community fundraising advocates.
Dealing with cancer: A guide for mums was made possible thanks to a grant from Dry July. Dry July is committed to improving the wellbeing of Australians with cancer. 2 Dealing with cancer
“ Thank you so much Mummy’s Wish for the access to a cleaner for the week after my chemo cycles. Thank you doesn’t seem enough for the stress it took away to allow me to recuperate.” Trudi, 40.
Why Mummy’s Wish?
Some of the ways we can help include:
Around 130,000 new cases of cancer will be diagnosed in Australia this year. Of these—in the 25 to 54 year old age group—cancer will affect more women than men and, in the majority of cases, these women are likely to have dependent children; to have the majority share of childcare and domestics tasks; and to be in the paid workforce1.
● organising house cleaning sessions
How we help At Mummy’s Wish, we have worked with thousands of families and our Support Coordinators bring to our team their professional knowledge and skills, in addition to a personal experience of cancer, cancer treatment and motherhood. in addition to an understanding of the impact a cancer diagnosis can have on a mum and her family. Following a referral, one of our Support Coordinators will contact you to discuss your individual circumstances and support needs, working with you to find a practical way to take the pressure off.
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● providing a voice-recordable Comfort Bear for each of your children aged under 12 years so you can leave a little message for them to hear if/when you’re not together ● arranging delivery of nutritious family meals during treatment ● hospital car parking vouchers ● providing information and links to other organisations that may be useful to you ● providing books and/or other resources to help you talk to your children about what you’re going through and how it may affect them ● referrals to other support agencies best suited to your family’s needs. We have carefully prepared this guide so that it contains information, tips and resources that are relevant for you—a mum trying to deal with a cancer diagnosis while raising a family— although it may also be a helpful read for family and friends.
ustralian Institute of Health & Welfare, 2017 https://www.aihw.gov.au/reports/cancer/ A cancer-compendium-information-and-trends-by-cancer-type/data
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When you’re a mum with cancer Being diagnosed with cancer often comes as a shock and it may be a difficult time as you come to terms with your diagnosis and start medical treatment. Challenges may be emotional, psychological, physical and practical. For many mums, a cancer diagnosis compounds the usual challenges of parenting. It can mean that you’re torn between attending to your own needs and the needs of your family. This may lead to feelings of guilt, anger, depression and self-doubt.
Cancer can seem like an unwanted visitor that has come to stay with you. If you want to do something or to go out somewhere, it becomes something else you feel you have to juggle.
It can also be difficult to help your children deal with the news of your diagnosis, especially if you’re struggling yourself, so it can help to talk things through with your partner or a trusted friend or family member, or to seek professional support from an a cancer care social worker, psychologist or counsellor.
Coping Strategies Different coping strategies can be useful for different situations. For situations that cannot be changed (ie. learning about treatment plans or test results) try to use strategies like relaxation, meditation, exercise, journalling or even simply talking with others to manage your thoughts and feelings. For situations that you can have an impact on (ie. family routines, child care, finances) try to implement strategies which include asking for help from others; seeking information and professional advice; and utilising online tools. We know that kids cope best if they can maintain a normal routine and continue to participate in sport and recreational activities. But this is not always possible when you’re adjusting to your diagnosis or experiencing the side effects of cancer treatment.
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Being honest with your kids about how you’re feeling; acknowledging that they may feel hurt or disappointed that their routine has been affected; and giving them an opportunity to help out with age-appropriate chores can be a constructive way to cope on the not-sogood days. For tips on how to tell your children about your diagnosis, turn to page 10.
Closed Facebook Support Group Treatment schedules and geographical distance can make it tricky to connect with other mums with cancer. Mummy’s Wish has created a closed Facebook support group for registered mums that will provide you with a safe and supportive space easily accessed from any physical location, at any time of the day. This is a peer to peer support group, moderated by Mummy’s Wish staff on a regular basis. Go to the Mummy’s Wish Private Mums’ Group Facebook page and ask to join. The group is open to Australian mums with any form of cancer who have registered with Mummy’s Wish.
Recommended resources: Cancer Council: Emotions and Cancer https://www.cancercouncil.com.au/ cancer-information/when-you-are-firstdiagnosed/emotions-and-cancer/ Breast Cancer Network Australia: Anxiety, depression and breast cancer https://www.bcna.org.au/resource/factsheet-anxiety-depression-and-breastcancer/ Breast Cancer Network Australia: Feeling sad or worried https://www.bcna.org.au/understandingbreast-cancer/resources/accessibleresources/feeling-sad-or-worried/ Breast Cancer Network Australia: GP Mental Health Treatment Plan https://www.bcna.org.au/media/2843/ bcna-fact-sheet-gp-mental-health-plan. pdf This information is suitable for all cancer types. You can search each of these titles on the internet to be taken to the relevant information.
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It’s okay to not be okay Cancer treatment can throw you a few unexpected curve balls. Since 2007, Mummy’s Wish has helped thousands of Australian families. While each family has their own unique story to tell, they often share the same common concerns and worries.
Here are a few things our mums have shared over the years: ● Your kids will be fine if they occasionally end up with take away or a bowl of cereal for dinner. ● Asking questions of caregivers and medical professionals is not rude or annoying. You are entitled to understand what is happening to you—now and into the future. ● Friends and relatives wanting to know how you are and when you’ll be ‘better’ may start to feel intrusive or draining—nominate one friend to deal with these enquiries. ● Your family are only human so they will occasionally forget how sick you are and will sometimes ask for love in unloving ways. ● Sometimes your house will be messy. It’s okay! Take a deep breath and let it go.
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“ Rest when your body is telling you it needs rest and stay strong. It’s okay to let the tears flow, but know there is light at the end of the long, dark tunnel. Let friends/family help out and just do what’s right for you.” Shannon
● Some days you may feel almost ‘normal’, we promise! ● Cancer is expensive. No matter how financially secure you were before your diagnosis, there will be times when money will be tight. Seek financial advice or help before you get to that stage. ● Sometimes you might not be able to pick your kids up from school because of appointments, ill-health, exhaustion or simply because you just can’t do it that day. Having a couple of back-ups can be a big help at this time.
Having a tough time and need someone to talk to right now? Lifeline are there to listen and help you out. They are confidential and available 24/7. Phone 13 11 14. Or ask your GP to recommend a local psychologist or counsellor for you to speak to.
● It’s okay to feel angry that this is happening to you and that other people seem to be happily getting on with their lives when it feels like yours is falling apart or will never be the same. ● Sometimes friends don’t know how to help, so they won’t. Be prepared to be disappointed by some of your closest friends and delighted by people you never dreamed would be a great support to you.
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Spouses and partners Your spouse or partner may feel just as scared by your cancer diagnosis as you do. You both may feel anxious, helpless, or afraid. You may even find it hard to be taken care of by someone you love. Nearly all couples feel more stress than usual when cancer occurs. They often feel stress about: ● knowing how to best support each other and how to communicate ● dealing with new feelings that come up
These differences can cause tension because each person may expect the other to act the way they would in their place. To reduce stress, it may help to remind yourself that everyone reacts differently.
Ways to improve communication Some couples find it easier to talk about serious issues than other couples. The sections below may help you think about ways to communicate that work for both of you.
● making decisions
Share the decisions
● juggling lots of roles (such as childcare, housekeeping, work, and caregiving)
Including your spouse or partner in treatment decisions is important; meet with your doctor together to learn about common symptoms, your treatment choices, and their side effects. This will help you both plan for the upcoming weeks and months.
● changes to their social life ● changes to their daily routine ● not feeling connected sexually. It can help to know that people express their emotions in different ways. Some like to talk about things or focus on other people, while others like to focus inward by doing things, such as washing the dishes or fixing things around the house.
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Help each other Everyone needs to feel loved and needed. You may have always been the “strong one” in your family, but now is the time to let your loved one help you. And in turn, make sure you help your partner by expressing gratitude and letting them know you understand it’s a tough time for them too.
Be open about stress Some things that cause stress for you and your partner can’t be solved right now, but it can still be helpful to talk these things through. Getting things out into the open may help you both. Be a team You and your partner need to be a team now more than ever. Talk about what decisions you can or should make together and which ones you should make alone. You may also want to decide what tasks to share and if other people in your life could help with them. Make dates Many couples find that it helps to plan special occasions. These dates don’t have to be fancy or expensive; it’s about spending time together. Think about making time to watch a movie together, going out to eat or for an event, or looking through old photos. You can also plan these dates to include other people if you miss being around others.
Recommended resources Cancer Council: Caring for Someone with Cancer https://www.cancer.org.au/content/ about_cancer/ebooks/Caring%20for%20 someone%20with%20Cancer%20 booklet.pdf Cancer Council: Partners Guide to Coping with Cancer https://cancerqld.org.au/content/ resources/library/partners%20guide%20 to%20coping%20with%20cancer.pdf This information is suitable for all cancer types. You can search each of these titles on the internet to be taken to the relevant information.
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Telling the kids It can be helpful to take some time and prepare for this conversation to ensure that you’re not feeling overwhelmed by your own emotions and to work out what information and messages about your diagnosis and treatment that you wish to relay to your children.
There is no ‘correct’ way to tell your children about your cancer diagnosis, but keep in mind that you understand their needs and feelings best. Here are some key points to consider:
If you have more than one child in your family, you might talk with the children together or tell each child what has happened individually. Their individual ages, personalities and needs can help guide how and what you tell them.
● Give them a simple, clear explanation of your diagnosis and treatment. Be prepared to provide more detailed information if they ask, or as the situation changes.
● Be honest and open. Sharing information with your kids about what is going on for you can prevent confusion and helps them to feel included.
● Ask questions. Find out what your children already know—or believe—about your cancer diagnosis. Kids will often surprise you with what they know or may give you clues as to their concerns or misunderstandings. ● Let them know what to expect. Children often need to be reassured that someone will be available to look after them if you’re in hospital or feeling unwell.
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“ Research shows that being open and honest is one of the best ways to help children cope with the cancer diagnosis of someone close to them.” Talking to Kids About Cancer, Cancer Council Australia
● Let them know that you will need to share information about your diagnosis with a few key people such as their teacher, but give them the opportunity to decide if they want to share this information with their friends or classmates. ● Give your children the opportunity to come back to you for reassurance or to ask questions. Often, kids feel more comfortable having these conversations in the car, taking the dog for a walk or over dinner. ● Express hope about your prognosis but try to balance this with the reality that cancer is a serious illness and that treatment can be difficult. It is not helpful to make promises that you cannot keep. ● It’s okay to show your feelings. Honesty about your fears and feelings will give your children the message that it is okay to express their feelings, which can have a positive impact on your relationship and will help their ability to cope.
Recommended resources Cancer Council: Talking to Kids About Cancer https://www.cancer.org. au/content/pdf/News/2013-CAN737TalkingToKids-NSW-lo.pdf Cancer Council: What is happening to my Mummy? https://cancerqld.org. au/wp-content/uploads/ccq-resources/ what%20is%20happening%20to%20 my%20mummy.pdf Camp Quality https://www.campquality.org.au CanTeen https://www.canteen.org.au Breast Cancer Network Australia: MediKidz comic https://www.bcna.org. au/resource/medikidz-comic/ Breast Cancer Network Australia: Telling your children https://www.bcna.org.au/understandingbreast-cancer/talking-to-family-andfriends/telling-your-children/ This information is suitable for all cancer types. You can search each of these titles on the internet to be taken to the relevant information.
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Telling others who need to know Letting your children’s teachers and other key caregivers know about your diagnosis and treatment can be helpful as it gives the school/ child care provider a heads-up about potential changes to your kids’ routine. It also provides another opportunity for emotional support for your kids, and may help in garnering some extra practical support for your family.
Recommended resources: Cancer in the School Community: A guide for staff members https://www.cancercouncil.com.au/ cancer-information/schools-and-teachers/ cancer-in-the-school-community/ Camp Quality Education Program https://www.campquality.org.au/how-wehelp/find-a-program?_type=at-school
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Here is a template that you may wish to use to inform your children’s school/child care provider about your situation. Every family is different so you can edit it to reflect your individual circumstances. If you would like us to email you an electronic copy of this letter, please email contact@mummyswish.org.au, alternatively you can download a copy from our website.
Dear (insert name here),
I am writing to let you know that I have been diagnosed with (insert diagnosis here). (Child’s name) knows that I (am sick/have cancer) and we have told (him/her) that (managing/curing) this will take some time and will involve (insert any relevant treatment details). At home we refer to my illness as (insert whatever words you use at home when speaking of your illness) and the treatment as (insert words used by the child when chatting about the treatment). We are keeping a close eye on (child’s name) but would appreciate if you would do so also and get in touch if you have any concerns about a change in (child’s name)’s behaviour. (Partner’s name if applicable) and I would also love it if you would let us know if there is any curriculum content or school activities coming up that may be distressing to (child’s name) so we can work together, in advance, on a course of action to manage this. My intention is to keep you up to date with my treatment progress on a regular basis to ensure that we continue to work to make this as easy as possible for (child’s name), the teaching team and our entire family. We (would prefer at this stage to keep the news of my diagnosis fairly quiet/we are comfortable if (child’s name)’s classmates and families know of my diagnosis). I have mentioned to (child’s name) that I am sending this through to you and (he/she) has indicated that she is (happy for you to check in with him/her occasionally on how he/she is coping OR he/she would prefer school to be a place where she/he does not need to worry or focus on my health). I am gathering that my treatment is going to be busy and challenging so I have asked (insert Town Crier’s name) to be the contact for those wanting to make contact and ask questions. He/she can be contacted on (insert email address). In addition, (insert name) has offered to field any offers of help that may come up from the school community. He/she can be contacted on (insert email address or phone number). Thank you for all that you do for (child’s name) and please don’t hesitate to get in touch with any questions or concerns you may have.
Yours sincerely, (Parent’s name)
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It takes a village As mums we are used to putting the needs of others before ourselves so it can be difficult to ask for—and accept—help. However, cancer treatment will often require a lot of your time and energy, so you may find yourself needing to build a support team of family and friends to help you manage some of the practical tasks of daily family life—not just at the time of diagnosis, but throughout your treatment and recovery. In most cases, family and friends want to help in any way they can, but they may not always know the best way to do so. Be specific about what your family and friends can do to help you and give them an opportunity to choose activities that match their abilities and availability.
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Find a town crier Everyone who cares about you will be very interested in how you are doing and what is happening for you during your treatment. And while it is wonderful that so many people care, it can be both physically and emotionally draining trying to keep everyone in the loop. If you feel your partner is already carrying too much, ask a relative or friend to act as a contact person to update others about your condition and treatment. Through this role they can help you manage the flow of information; screen and respond to calls, emails and social media posts; and coordinate offers of help. There are also online tools to help with this—including our website, Simple Things (simplethings.org.au)—or you could set up something as simple as a closed Facebook group for family and friends etc.
Find a straight talker
Some ways your work, school and social community may be able to help include:
Having a trusted relative, friend or teacher who is able to check in with your child and partner about any questions or concerns they may have can be helpful.
● organising the making of and/or delivery of nutritious meals, school lunches or healthy snacks
Children will sometimes try to ‘protect’ their parents or may sense that their parents are trying to shield them from difficult information or emotions, it might be helpful for another trusted adult to talk things through with your child.
● taking care of the school and sport pickup and drop off
Appoint a chore fairy You will be surprised at how much everyone wants to help at times like this but coordinating this can be hard work and may sometimes feel embarrassing. If you want to maximise the benefit to your family then ask someone to be the ‘go-to’ person to bring all these good intentions to life.
● helping you get to and from treatment
● grocery shopping ● helping with the laundry, ironing or house cleaning ● arrange play dates for the kids ● taking photos and cheering on your kids at school events and/or sporting and recreational activities if you’re not able to be there. Having a ‘chore fairy’ can also help you avoid drowning under a mountain of well intentioned ‘cancer casseroles’ when what you need is so much more than a freezer exploding with pasta! Don’t underestimate the value of friends who can just be there for you as friends— listening without offering advice, getting you out and about, and having fun.
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“ My girlfriend took each Monday off work to drive me to the hospital and sit with me during chemo (often in silence), then drop me home so that my hubby could keep our daughter’s routine as normal as possible.” Christel, 37
Note: Sometimes family and friends react to your cancer diagnosis in insensitive or disappointing ways. These reactions most likely reflect how they handle strong feelings such as fear and anxiety in their own lives, or stem from an uncertainty about what they should say or do. People don’t usually mean to make things worse or upset you, but if the relationship is important to you, consider communicating with them about how their reaction and response affects you.
Recommended resources: Breast Cancer Network Australia: Helping a friend or colleague with breast cancer https://www.bcna.org.au/media/2128/ bcn_helping_a_friend_brochure_web.pdf Ovarian Cancer Australia: Family & Friends booklet https://ovariancancer.net.au/treatmentsupport/family-friends-support/ Cancer Council: When cancer strikes— How to be a friend https://www.cancer.org.au/news/ blog/support/when-cancer-strikes%E2%80%93-how-to-be-a-friend.html ‘How not to say the wrong thing’ http://articles.latimes.com/2013/ apr/07/opinion/la-oe-0407-silk-ringtheory-20130407 This information is suitable for all cancer types. You can search each of these titles on the internet to be taken to the relevant information.
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Keeping things ‘normal’ at home Routine is key During your treatment, life may become a little chaotic but where possible, keep as much consistency as you can in your children’s dayto-day schedules. Familiar routines provide emotional safety for children so don’t be afraid to call on relatives, friends, school connections or local community groups to help keep their days as normal as possible. It won’t work all the time and hiccups are unavoidable but people want to help and it is okay to ask. Maintaining usual limits and boundaries around behaviour is also important; it may seem hard when you all feel pretty vulnerable and want to let things slide, however this routine will help kids feel emotionally safe.
The importance of meal time Make a point of eating at the table with your children when you are well enough to do so. Eating and talking as a family ensures that you can share information and fears about your
cancer experience with the whole family in a safe environment, as well as giving them a chance to share their news and feelings. It can be tempting to use TV or electronic devices to ensure ‘peace’ during meals when you are unwell, but children need to connect with you and meal times is a great time to do that.
Time means the most Cancer gets busy. Your treatment schedule is busy, concerned friends and relatives may be in constant contact, you may be scared and unwell and you may feel like handling the ‘admin’ of cancer is taking over your world. Give yourself permission to set aside some little chunks of time where you get to be ‘Mum’; to hear your children’s stories, listen to their fears and focus on just being together. Playing, laughing and having fun is the important work of childhood so even if you have to schedule time in to do this, it’s a great way of giving your kids permission to enjoy themselves, even when there’s serious stuff going on.
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When mum needs a sick day Mums don’t generally get to take sick days, but when you’re going through treatment for cancer, there will be days when you just can’t get up and go. Here is a list of fun kids’ activities for smaller children, which require minimal supervision on your part so you can rest and recover without worrying too much about what they’re doing! Indoor picnic Pop a doona or blanket down on the floor, cover it with pillows and let them have a picnic with snacks, or make some popcorn and put on a movie or their favourite TV show. Scavenger hunt If you know your kids can roam around the house unsupervised without getting into too much trouble, send them on a scavenger hunt. Depending on their age, you could write them a list of things to find, or if they’re younger, send them off to find items of a particular colour.
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Indoor camping Set up a pop up tent indoors—or throw a blanket over the dining table—fill it with blankets, pillows, a torch and their favourite books and pretend you’re camping. They can pretend to sleep under the stars, sing around a campfire or just hide out while you doze nearby. Balloon art Blow up a few balloons and have your child draw on faces using felt pens. You can even ask them to draw the members of your family or your pets! Story time The perfect activity to snuggle up together on the couch or in bed. Once you’ve read to your kids, ask them to pick a favourite book and read it to you—if they can’t read themselves, they’ll make things up as they go along as they try to remember the story from hearing you tell it. Rainy day box Set aside some special colouring or activity books, toys or activities which you can pull out on days when you’re really struggling so they have something new to do.
Indoor bowling Buy a cheap indoor bowling set for kids, or save up some empty plastic bottles, line them up at the end of your hallway and set the task of knocking them down with a soft ball. Board games
Tip: If you really need a nap, set a timer so your kids know how long you’ll be out of action and when they can wake you up. It works a treat and sometimes a one-hour power nap is enough to get you through the rest of the day!
Card games like Uno or Go Fish and any of the quieter board games (snakes and ladders) are great because they don’t require you to move around too much. If your kids are older, set them up with a bunch of games to play amongst themselves and tell them to keep score so you can see who the overall champ is. Hang up a scoreboard so they can keep the battle running over weeks or months! Fashion parade Kids love any opportunity to dress up, so let them loose to dress themselves from either their wardrobe or yours! You can even set them a task to wear so many pieces at once before parading them for you.
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When things aren’t getting better Finding out that your cancer is advanced or that your condition is life-limiting is tough and experiencing strong emotions such as fear, anger, sadness, guilt, denial and loneliness are normal reactions to this news. For many mums, this is the time they focus on their family; on the time they have left, on how much they love their children and what they can do to help them cope with this loss.
Telling your children There is no easy way for a child to hear that their mum isn’t going to get better, but children of all ages benefit from being prepared in advance for the death of their mum. The pain of losing you may be intensified if they’re not prepared and, depending on their age, they may feel confused, hurt and angry that this wasn’t shared with them sooner. Talking about death with children isn’t easy; the last thing you want to do is scare your kids; make them feel like you are about to die at any moment; or make them feel panicky or worried about going to sleep. Starting the conversation can be the hardest part, so consider beginning with what your child already knows or has been told previously, e.g. ‘You know that mummy has been very ill over the past few weeks...’ or ‘You remember we talked about mum’s cancer...’ Younger children (under eight years) might not understand what death means, so you might need to describe it and make sure they understand that death doesn’t go away. For example, ‘Dying means that my body will stop working so I won’t be here to see you or cuddle you anymore’.
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Try to encourage your children to ask questions and talk about how they are feeling. Reassure your children that you will be there to support them for as long as you can and then explain to them who will be there to help them when you’re gone. Remember, it’s okay for your child to see that you’re sad, or to see you cry, however it’s also a good idea to explain your feelings to them. For example, ‘I’m crying because I feel very sad that I won’t be here to see you grow up.’’ Just like adults, children’s feelings can range from sadness to anxiety and everything in between, but children don’t always have words to express their feelings. This means they might need your help to understand, name and cope with their feelings. It may be useful to link your child in with a children’s counsellor, so that they can make a connection with someone who can help them express and understand their feelings and fears before and after your death. It is also important that your partner or other caregiver is well supported in addressing their own grief. Their ability to do this will greatly influence your child/children’s adjustment going forward.
Recommended resources: Cancer Council: Living with Advanced Cancer https://www.cancerwa.asn. au/resources/2017-01-18-living-withadvanced-cancer.pdf Cancer Council: Understanding Palliative Care https://www.cancer.org. au/content/about_cancer/treatment/ Understanding%20palliative%20care_ booklet_April%202015.pdf Cancer Council: Facing End of Life https://www.cancer.org.au/content/about_ cancer/ebooks/aftercancer/Facing%20 end%20of%20life_booklet_February%20 2014.pdf CanTeen: When Your Parent’s Cancer Can’t Be Cured https://www.canteen.org. au/resource/when-your-parents-cancercant-be-cured/ This information is suitable for all cancer types. You can search each of these titles on the internet to be taken to the relevant information.
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Making memories Dealing with a cancer diagnosis can be physically and emotionally exhausting, not just for you, but for your family. You may worry about what the future holds for them, how they’ll cope if/when you’re away having treatment and what you should do to show them how much you love them. When you’re feeling up to it, doing something with your child/children to make some fun and happy memories during this time can be particularly helpful, for mothers and kids. And trust us, the cleaning and laundry can wait!
Here are some ideas to get you started:
Voice-recordable Comfort Bears Mummy’s Wish can provide you with a voice-recordable Comfort Bear for each of your children so you can record a short message that can help a little in easing the anxiety of when you’re apart. Family photo sessions So often in life, it’s mum who is the family photographer, snapping moments to be stored away as precious memories. But now is the time to give someone else the camera and get in the photo. As well as taking photos yourselves, you can also arrange to have a professional photographer take photos of your family enjoying time together at home or in a location that is special to you. If you need advice on how to find a photographer, email us at contact@ mummyswish.org.au. Handprint project Using paint or plaster, make hand prints of your hands with your kids and have them decorate these with you.
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“ I have had so many late nights with chemotherapy and haven’t been able to tuck my children in but it is so nice to know that they still hear a little message from their mum at bedtime, even when I can’t be there. Thank you.” Cara, 36
Letters, cards or gifts: personalised messages for future occasions Sometimes, when faced with an uncertain future, it can be easier to write letters to your loved ones, especially if there are things you are struggling to say to them. You may wish to include messages of love and pride; words of advice and encouragement; and stories related to special occasions—milestone birthdays, graduations, weddings and the birth of children. If you’re struggling to know what to write, start with small cards with messages like: ‘I love you because...’, ‘Thank you for…’, ‘When we’re not together, what I miss most about you is…’, or ‘Remember when…’. Write in a journal, diary or create a blog for the family or each child Keeping a journal or a blog gives you the chance to write about feelings and events that are important to you. You can add sections about your life, what you’ve achieved, your travels, work and hobbies. Include your
favourite memories together, funny stories, your child’s birth story, memories of your own childhood, your quirks and personality traits, favourite recipes and songs, etc. Art/craft projects Make a memory quilt or pillow case for your child using fabric that holds a special meaning for you— it could be made from pieces of your favourite shirts or dresses, your wedding gown or their baby blanket. Memory boxes Many mums like to put together a memory box filled with mementos for their children. For some it’s just a small box filled with a couple of key items, while others have filled up a small chest. You can put in anything that’s important to you or your children, or that will remind them of a particular memory—photos, holiday momentos, tickets to special events, perfume (our sense of smell is one of the most powerful ways to stimulate memories), favourite books, music or movies, clothing and jewellery, letters and cards, videos and voice recordings, etc. You could add a note with each item to explain why they are important to you.
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Note: Creating a memory box can be a very emotional experience as you reflect on your own memories. You may find it helpful to have a relative, friend, social worker or counsellor support you through the process. Make videos While photos are nice, videos are even better and these days they’re easy to make from the privacy of your own home. They’re also the ultimate way to leave your children with a little piece of yourself—they can see you smile and laugh and hear your voice. Individual videos can be made for each child or loved one, with the emphasis on making them as personal as possible. Mums of young children may choose to read favourite bedtime stories, sing lullabies, or simply talk about the love that they have for their children.
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Conversations and cuddles are just as important as any memories you could jot down on paper or physically make. You’ve been making memories throughout all of your time together; from family holidays to playing in the backyards; sitting around the dinner table, at bedtime and every time you’ve said, “I love you”. If you are facing a terminal prognosis, you might worry that leaving messages behind after you die may be too hard for your family and friends to handle or you might not feel well enough, or strong enough, to do any of these things. And that’s okay! There are no rules about how you should feel or what you should do. Do what is right for you and what you feel able to do.
Financial and legal help We understand that legal and financial issues can add to the stress of a cancer diagnosis. Suddenly, you may be earning less because you have to work fewer hours—or not work at all—while also experiencing additional financial pressure due to medical bills, travel and parking costs and additional childcare. Mummy’s Wish can put you in touch with people and organisations who can provide you the information and assistance to address financial and legal concerns such as: ● Eligibility and access to superannuation funds ● Eligibility and access to life and/or disability insurance funds ● Information regarding TPD (Total and Permanent Disability) ● Workers’ Compensation Claims ● Knowing workplace rights ● Eligibility and access to financial support (Centrelink, hardship programs and special childcare benefits) ● Appointing enduring powers of attorney ● Completing advance care plans ● Making your Will.
Aside from Mummy’s Wish, other sources of practical support include your Cancer Care Coordinator, Social Work and Welfare staff, GP, Patient Advocate, support organisations (specialist cancer nurses etc), and peer support groups.
If you are on a low income or unable to work because of your cancer, you and your partner may also be eligible for payments or services from Centrelink including: Sickness allowance, Mobility allowance, Disability support pension, Health Care Cards, Carer allowance, Financial Information Service and Social work services. You can visit a Centrelink office or phone 13 27 17 for help with applications and claims. You can also ask to speak to a social worker (phone 13 25 80) or contact the Financial Information Service (phone 13 23 00) for advice. It is best to contact Centrelink as soon as possible, as there might be a waiting period before payments can start to be paid to you. If you are feeling too unwell to have this discussion, your partner or a family member can seek advice on your behalf. You can nominate your partner or a family member to represent you, so that Centrelink can deal directly with that person instead of you.
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Making a Will Nobody likes to think about a time when they may not be alive, but getting your affairs in order helps your loved ones if the worst does happen—and it just makes good financial sense, whether you have cancer or not.
What if I don’t have a Will?
A Will is a legal document that says what you would like to happen with your money, belongings and other assets (your estate) when you pass away. It names who you want to give your estate to (your beneficiaries) and who you would like to administer your estate once you’re gone (your executor).
● your family or friends may not be provided for as you wish
Wills also designate guardians of children, specify preferred funeral arrangements and nominate who takes possession of sentimental items. Even the family pet can be included.
There are two main options for writing your legally binding Will—with assistance from a professional Will writer or by using a do-ityourself kit.
A Will also lets you:
If your circumstances are simple, then a do-ityourself kit is an easy and convenient way to write your Will, although it is best to have this checked by someone from the State/Public Trustee to ensure it has been done correctly.
● name one or more guardians for your children ● establish a trust to provide for your children or a person with a disability ● preserve your assets ● give money to charity and philanthropic organisations such as Mummy’s Wish.
Why you need a Will Having a valid Will is the only reliable way to ensure that your estate goes to family or friends of your choice after you pass away. Having a valid and up-to-date Will can help reduce stress for your family and friends, limit the costs to administer your estate, and lessen the possibility of disputes over your estate.
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If you pass away without a valid will, you pass away ‘intestate’. This means: ● there is no guarantee that your assets will be distributed as you would like
● it may take more time and money to finalise your estate.
How do I write a Will?
If your circumstances are complex, you should take advantage of the expertise of a Will writer such as a solicitor or the State or Public Trustees in your state.
Where should I keep my Will? A Will should be kept in a safe place, i.e. safety deposit box or locked filing cabinet, together with your other personal papers. To find out more about making a Will, contact the State or Public Trustee in the state in which you live, or speak to a solicitor.
Other resources Useful links In addition to the information you receive from your treatment team, you might find it helpful to get information from different sources. There are many other government, private and not for profit community services and agencies available to assist you with concerns and issues while dealing with cancer. These include Cancer Council, Centrelink, disability, aged care and palliative care services.
For younger children When Someone Has A Very Serious Illness by Marge Heegaard A practical workbook to help children learn the basic concepts of illness and age-appropriate ways of coping with it. What Is Happening To My Mummy? by Noela Moran and Teresa Jordan A colour-in story book for children to help understand cancer treatments. My Mum’s Got Cancer by Dr Lucy Blunt. A picture book to help normalise the treatment of cancer. The Invisible String by Patrice Karst A picture book offering a child-centred approach to overcoming separation fears.
Help Me Say Goodbye: Activities To Help Kids Cope When A Special Person Dies by Janice Silverman An art therapy and activity book to help children prepare for, and cope with, the death of a special person. Camp Quality Camp Quality provides support for young children aged 13 years and under in dealing with the effect of cancer in their lives. www.campquality.org.au
For older children What About Me? by Cancer Council Qld A booklet of short comics providing basic factual information. It explores the possible feelings, fears and concerns children may have when their parent has cancer. Now What? by CanTeen A series of booklets that provide information, understanding and support about the challenges older children may face as a result of their parent’s cancer diagnosis. CanTeen CanTeen provides support and information for young people aged 12 to 24 years in dealing with the effect of cancer in their lives. www.canteen.org.au
Beginnings And Endings With Lifetimes in Between by Bryan Mellonie & Robert Ingpen A picture book using nature and living things as a way of explaining the concept of life and death.
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For adults When a Parent Has Cancer — A Guide To Caring For Your Children by Wendy Schlessel Harpham, M.D. (includes supplement book for children, Becky & The Worry Cup) Children’s Grief — A Guide for Parents by Pam Heaney Cancer Council publications — available to download from www.cancercouncil.com.au: Coping with cancer Living with advanced cancer Partners guide to coping with cancer Talking to kids about cancer
Online tools and resources Simple Things Developed by Mummy’s Wish, Simple Things is an easy-to-use platform for friends and family to organise and coordinate help for mums (ie. meals, school pick ups, transport to hospital, etc). simplethings.org.au
Cancer Australia A government website that provides information and links to relevant support organisations. canceraustralia.gov.au Cancer Council Australia Provides up to date information regarding all aspects of cancer including research, treatment and support. cancer.org.au Cancer Connections A moderated online forum by Cancer Council Australia. cancerconnections.com.au
Other useful contacts Centrelink Information about government support and financial assistance; 13 27 17 www.centrelink.gov.au Lifeline 25 hour personal crisis support: 13 11 14 Lifeline.org.au
Hey Sigmund
Griefline
A free website sharing the latest research and news about psychology — including information on children and adolescents. Heysigmund.com
Online and phone counselling open 12pm to 3am daily; 1300 845 745. Griefline.org.au
Open Leaves Books
Information about Medicare claims. General enquiries: 13 20 11 medicareaustralia.gov.au
A specialist book retailer providing a vast collection of counselling and therapy books. openleaves.com.au Little Parachutes Provides information about books for young children to help with life’s challenges. littleparachutes.com
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Medicare
How you can help At Mummy’s Wish, we are dedicated to helping mums with young families as they navigate the challenges that come with juggling parenting with a cancer diagnosis. Our dedicated Support Coordinators work with each family to tailor support to meet their unique needs. We also offer a range of practical and support services for mums diagnosed with cancer including meal delivery; household help including cleaning and garden work; hospital parking vouchers and family photography sessions. All of these services would not be possible without community support, great and small.
Buy Mummy’s Wish products Every purchase made from the Mummy’s Wish online store helps provide support services to more mums in need.
Share your story By sharing your story, you can help other mums realise they are not alone and help us raise awareness of the important work being done by Mummy’s Wish to help make a difficult time easier for families. To find out more about how you, your family and friends can help, please contact Mummy’s Wish on 1800 045 741 or email contact@mummyswish.org.au.
Fundraise for Mummy’s Wish If your family, friends or colleagues are looking for other ways to show their support for you, we’d love them to organise an event or activity that raises awareness about the impact of cancer on mums and supports the work we do. Fundraising can be anything you want it to be! Think about what you are interested in and what you have time for. You can make your activity as big or as small as you like.
Donate a Mummy’s Wish Comfort Bear Our special Comfort Bears are one of the ways we support mums and their families. Inside each bear is a magical voice-recordable heart, that will share mum’s reassuring words and radiate her unconditional love every time the bear is hugged. When a mum registers with Mummy’s Wish, she’s sent one of our Comfort Bears for each of her children aged under 12.
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Important numbers Name
Phone
GP
Day: Emergency:
Oncologist
Day: Emergency:
Radiation Oncologist
Day: Emergency:
Surgeon
Day: Emergency:
Pharmacy
Day: Emergency:
Nurse (Oncology)
Day: Emergency:
Nurse (Radiology)
Day: Emergency:
Nurse (other)
Day: Emergency:
Dietician/ Nutritionist
Day: Emergency:
Social Worker
Day: Emergency:
Physiotherapist
Day: Emergency:
Occupational therapist
Day: Emergency:
Psychologist
Day: Emergency:
Hospital
Day: Emergency:
School or day care
Day: Emergency:
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Other information
Notes
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Mummy’s Wish Registered charity CH1656 Address: PO Box 165, Northgate, QLD 4013 Phone: 1300 045 741 Email: contact@mummyswish.org.au www.mummyswish.org.au
This guide has been printed with the generous support of Dry July.
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