Inside Issue of concern 3 My story 11 Reviews 12 Member group profile 13 the BEACON Thank you 14 Breast Cancer Network ’s Magazine Issue 46 Autumn 2009 ISSN 1834-5921

What’s in a word?

The world of cancer is, for most clear’ simply does not exist, even of us, an alien place: unknown though many of us will experience territory for which many of us are Runner beats the disease as a one-off set-back. inexperienced and ill-equipped. The theme of this issue of The The breast cancer landscape is breast cancer ... Beacon is ‘I never thought I full of concepts and words we would … if I hadn’t had breast have never before encountered Survivor cancer’. Women have once again and we do our best to make shared their inspiring stories sense of it all and to position Gutsy battle about living life not as victims but ourselves for the best outcome. as survivors. As a community, we are certainly I have to say we have been at a loss to express our feelings thrilled by the response to our about a disease which comes cancer were particularly aggressive new ‘Survivor’s Pin’ – clearly this unannounced and which shakes and that the treatments were wide-ranging responses. In this struck a chord with many of our own sense of mortality ultimately unsuccessful. case, it is impossible to find a you, and our sparkly pin will be a and steadiness in life. With the term with which we are all happy. sign to all that we have at some passing in 2008 of well-known There were a number of articles For me personally, I am proud time been diagnosed with breast women such as Jane McGrath in the media, especially after to say that I am a ‘15-year breast cancer, however we choose to and Kerryn McCann, much was Kerryn’s death, that took up the cancer survivor’, and I know many refer to ourselves. written and spoken in the media issue of language and cancer. A Beacon readers feel the same about these brave women ‘losing young woman, Tamar Lyn Swinburne way. Even women whose breast Chief Executive Officer their battles’ with breast cancer. Paluch, wrote a beautiful piece cancers are in a very advanced that was published in The Age Although I understood that people state can refer to themselves as newspaper, called ‘Living with speaking in this way were well- ‘survivors’ – they see themselves If you would like to buy our cancer is much more that a win/ meaning, expressions such as this ‘living with the disease, not dying new sparkling ‘Survivor’s Pin’ loss equation’. She wrote about are often misplaced. They infer from it’. Other women object visit our website www.bcna. her own mother’s upset response that if they’d fought harder and vehemently, again rejecting the org.au > Visit our shop or call to certain terms, including the not given up, then they’d be alive whole notion that survivors are us on 1800 500 258 (freecall). notion ‘all clear’, citing an old today. Anyone who knew Jane and those who have ‘fought hard’. clipping from her fridge about Kerryn would realise that there Some women refer to themselves Kerryn McCann headlined ‘Runner is nothing further from the truth. as women ‘living with breast beats breast cancer’. You can read Both women had much to live cancer’; others say ‘women who Tamar’s piece on our website for – husbands, family and friends have had breast cancer’. at www.bcna.org.au > stories > who loved them, dreams to fulfil Family & Friends The truth is we are all living with and small children to nurture and some degree of uncertainty and see grow up. The truth is that The term ‘breast cancer survivor’ we know unfortunately that, with these women’s types of breast is also one which brings very breast cancer, the concept of ‘all

www.bcna.org.au Autumn 2009 (Issue 46)  BCNA around Australia MRI rebate The Minister for Health and Ageing Nicola Roxon’s Over the past few years, BCNA’s You can read more about the The theme of the forums is ‘Love announcement of a new Forums have brought women Forum on our website, and Breast Cancer – its impact on Medicare rebate for MRI together to hear about the latest www.bcna.org.au > Events women, their families & friends’. (Magnetic Resonance Imaging) in breast cancer treatment and >BCNA Forums. See the ‘Upcoming Events’ section screening from February this care, meet BCNA representatives year is great news for women On 25 March we visit Bendigo, on page 16 for registration details. and, most importantly, gather at high risk of developing breast Victoria where our Forum will We couldn’t organise and and share a cuppa with other cancer. again feature guest presenters present these forums without women with breast cancer in on the latest in breast cancer assistance from our Community To be eligible women must their local area. treatment, and on living well after Liaisons and women from our be under the age of 50 and In 2009 we will be presenting a breast cancer diagnosis. Member Groups, who help with have a strong family history BCNA Forums in all states and of breast cancer, or carry a BCNA is supporting the promotions, setting up on the day, territories, and supporting some known genetic mutation such as Tasmanian Breast Cancer welcoming women and a host of major breast cancer events for BRCA1 or BRCA2. The rebate Network’s conference for other general leg work involved women, organised by local groups. does not apply to women who women in Launceston, on in presenting these events. Their have already been diagnosed In February 300 women 28 and 29 March. Contact involvement highlights that BCNA with breast cancer. in Sydney heard Associate Pauline Watson on 03 6344 8968 truly is an extensive network of Professor Michael Bilous and or [email protected] to dedicated women. Women who meet these Associate Professor Fran Boyle register. At this stage, we are planning criteria are usually advised to presented the reasons behind Forums in all other states and have an annual MRI scan as In April women will come those breast cancer pathology part of their regular screening together at our Canberra territories throughout the rest of tests and how they help program. This is because Forum which will focus on life 2009. We will update our website oncologists choose treatment MRI can be more effective in after breast cancer. www.bcna.org.au > Events > options for women. Stephanie BCNA Forums as destinations, detecting early signs of breast On 24 May we will support Dowrick motivated the audience dates and venues are confirmed, cancer in younger women the Hunter Breast Cancer to take practical steps to build and they will also be listed in who tend to have dense Education and Support and nurture their emotional future issues of The Beacon. breast tissue, often making it selves after breast cancer. Committee’s annual breast difficult for doctors to read a cancer forum in Newcastle. mammogram. To claim the rebate women need a referral for an MRI scan from a breast cancer specialist. In addition, the MRI must be conducted by a Medicare- eligible provider. It is therefore advisable to check the provider’s Medicare eligibility before making an appointment for a scan. Further information about the MRI rebate, including the full eligibility criteria, is available on BCNA’s website at www.bcna. org.au > Information > A-Z > MRI rebate, or phone us on 1800 500 258 (freecall) and we will post a copy to you. Asking a question at our Melbourne Forum held in October 2008.

 Autumn 2009 (Issue 46) Breast Cancer Network Australia Issue of concern

I never thought I would have to pay for my mammogram after breast cancer

‘It seems wrong that women who This is what we found: Women’s comments confirmed – so a day off work, organising the have had a diagnosis of breast the strong feelings that had been children for after-school care, then the cancer and have had to cope with Cost of previously expressed to BCNA. cost of petrol and the procedure. It all the associated costs, should then mammograms Around a third of respondents should be free …’ have to pay for their mammograms, Most of the women surveyed stated that tests, with a particular while those blessed with not having were having annual follow-up focus on mammograms, should be Where to from here? the disease get theirs free.’ mammograms after their breast available at no cost. BCNA has written to the Federal Many women may be surprised cancer treatment. Sixty-three ‘… consideration must be given to Government, the National Breast to find that, after completing their per cent of women having making these services (ongoing tests & Ovarian Centre and other key treatment for breast cancer, they mammograms contributed to the after breast cancer) totally rebatable agencies to inform them of the often have to pay for their follow- cost. There was great variation or free of charge.’ results, with a view to improving in the charges. While some outcomes for women around this up mammograms. Previously Overall, many women felt that women paid under $50, and one issue. We will keep our members many of these women were the costs of these tests added to woman paid $400, the cost to informed on progress through eligible for free mammograms the already substantial burden of most women was between $50 updates on our website and in under the BreastScreen program. breast cancer. and $150. The Beacon magazine. ‘Friends and family could not believe ‘Add the cost of hormone therapy To read the research report The that I was further out-of-pocket (for and other medication… follow up Cost of ultrasounds out of pocket cost of follow-up care: mammograms) after experiencing visits with surgeons, GPs, day charges The trend was similar for the 67% Mammogram, ultrasound and MRI, all the expenses last year and what in hospital, mammograms and of women having ultrasounds. visit www.bcna.org.au > Policy with the ongoing cost of medication ultrasounds, and you have a very Sixty-four per cent of these and advocacy > Research reports now.’ high ongoing cost …’ women incurred out-of-pocket and surveys, or phone us on In response to women’s concerns, costs. The cost to most women Some raised their concern that 1800 500 258 (freecall) and we BCNA invited 250 women with was between $51 and $200. the costs of the tests may be will send you a copy. breast cancer to complete an prohibitive. online survey. We asked women MRI (Magnetic ‘I am very pleased that this issue is about the out-of-pocket costs Resonance Imaging) being addressed. It is quite expensive related to their mammograms We would like to thank all Twenty-one women reported to have the essential annual follow- and other follow-up imaging tests, the women who participated having breast or full-body MRI up mammograms/ultrasounds – I and invited them to comment in this survey. If you would scans after their breast cancer worry that some women may not on the impact of these costs. like to get involved in future treatment, usually in response have them for that reason.’ We received completed surveys research surveys you can join to a particular concern, or It was found that women in rural from 160 women. Most of the our Review & Survey Group. because of their age. Around areas and younger women were respondents were women with Visit www.bcna.org.au > Policy 39% of women having MRIs were particularly affected by the costs early breast cancer. There was & Advocacy > Seat at the Table between the ages of 31 and 50 of these tests. a good spread of women from > Get involved or phone us years. While MRI is not usually across Australia. ‘The costs of a mammogram for the on 1800 500 258 (freecall) for part of regular follow-up care, under 50s in some cases is prohibitive, more information. it highlighted that some women especially in the country where you do incur this additional cost have to travel a 100 kilometres – sometimes up to $700.

www.bcna.org.au Autumn 2009 (Issue 46)  Ask the expert

Kathryn Watts and Clare John do things in a more public way, are breast care nurses at like fundraising for example. Sydney’s Mater Hospital for One woman we know has put Cancer Care and Research. They her energy into . She support women before, during plans to run in a multi- and after their breast cancer across the Simpson Desert in surgery. Kathryn and Clare spoke September this year, with a view about some of the changes that to raising $250,000. She is only women make in their lives after one year out of treatment, and breast cancer. her enthusiasm is contagious. Kathryn: All women are heroes Another young woman has in their own way. Everyone deals written a book, to be published with things differently. this year, for kids whose mums A few women go into meltdown have early breast cancer. She now on hearing the word ‘cancer’. Kathryn Watts Clare John has secondaries, and is writing a A few weeks after the surgery, book for kids about that. they might come around and talk women are adjusting to the very supportive during the course And yet another has changed her about it. Over time, they get effects of treatment. They may of their treatment. In general, diet radically. She hasn’t had a soft there. experience fatigue and side women may look to decrease drink or a coffee in three and a For some women, having breast effects from hormonal treatment stress in their lives, and increase half years. Her perseverance is cancer raises unresolved issues. for example. Often at this time their overall quality of life. amazing. We still can’t believe that Some have been angry or they are really getting used to Sometimes having breast cancer she hasn’t had a chocolate in all defensive. It’s our job to listen. the ‘new normal’. They may find is a wake-up call to make a that time! it hard to find positives in the It’s important that women feel major change in one’s life, such Clare: It is our experience that, breast cancer experience. they can tell you anything. as to leave a stressful job or an in the long run, having breast Even if women are struggling, Once things settle down, we unsupportive relationship. A cancer seems to give women they often keep going with their often hear that women have made few women have gone on to do coping strategies to help deal jobs, keep taking kids to sport, or positive changes in their lives. They volunteer work in the cancer with other things that might arise looking after elderly parents for may change their diet, or join a sector. Many women start to in their lives. The majority of example. There are a lot of quiet gym or a group such as Dragons put themselves first, instead of women make some great changes, achievers out there. Abreast. Some find that they prioritising everyone else’s needs. and go on to live long, fulfilling become closer to family or to a lives. This is the most rewarding Clare: In the first year after Kathryn: There are also the colleague who turned out to be part of our job. a diagnosis, for the most part, women who have the drive to

New McGrath breast care nurses in 44 communities When women gathered at the (see above), at a crucial time in Government, the McGrath For more information and first BCNA National Breast their breast cancer journeys. Foundation is looking to to see which Australian Cancer Conference in Canberra The McGrath Foundation now appoint new breast care nurses communities will have a new in 1998, they placed breast care champions the creation and in another 44 communities McGrath beast care nurse nurses at the very top of the list appointment of new breast across the country within the in the coming months, visit of important issues for women care nurse positions across the next 12 months. Most of the www.mcgrathfoundation.com. diagnosed with breast cancer. country and we are proud to appointments will be in rural and au/nurses. We will update you Since then, more and more support them in their efforts. regional locations, where many as the new positions are filled women have been supported Thanks to funding recently women have previously missed in upcoming issues of The by dedicated breast care nurses, provided by the Australian out on this valuable and essential Beacon. such as Kathryn and Clare support.

 Autumn 2009 (Issue 46) Breast Cancer Network Australia Flamin’ Dragons

I was diagnosed with breast being in a happy boat is one of My club, Flamin’ Dragons Abreast, cancer In March 2004 and after the best experiences in life. had less than a boatload (20) a lumpectomy and radiotherapy Although I don’t compete when I joined but the club now settled back into my life in Port anymore I have competed in has almost 82 members, both Macquarie. Towards the end regattas on the Wyong, Georges survivors and supporters. of that year I heard from a and Clarence Rivers and at I never thought I would be friend that she was going to try the Olympic Rowing Centre in paddling on the river in a dragon paddling with Dragons Abreast. Penrith. My sons were open- boat at my age, much less be I thought I would like to try this mouthed at the sight of me president of the club. I have met but at 70, and walking with a drenched with perspiration the most wonderful women along crutch, wondered if it would be after racing! I also competed in this journey: they are the happiest, possible, but when my surgeon Abreast in Australia, in Caloundra, bravest, kindest good friends to gave me the OK I went along Queensland, last year. It was a me and I have had many, many and was totally hooked. I’m not a huge thrill to be part of a regatta wonderful times with them and good look getting into the boat for breast cancer survivors with their partners. We support each but, once in, I thoroughly enjoy over 2300 women from various other when needed and I am paddling on the river. I’ll never be countries attending. indebted to breast cancer for Jan dressed in her a brilliant paddler but the joy of making it all possible. Flamin’ Dragons’ gear. Jan Barnard Port Macquarie, NSW Moon bear rescue

I was diagnosed with breast Rescue Centre near Chengdu in cancer in February 2004 when China established by the Animals I was working full-time as a Asia Foundation. For 16 weeks I primary school teacher. After worked mainly as the small animal a mastectomy I became ill with carer looking after cats and dogs, depression and retired from many of whom were victims of teaching. This was a huge life the 2008 earthquake. What a joy change and led me to choose it was to restore these delightful two activities which I never animals to good health, animals thought I would be involved in. who were often disabled or had First I joined a Dragons Abreast been neglected but who took team. As part of this team I have joy in simple pleasures and had travelled to international regattas boundless love to share. in Singapore and Caloundra Every day as I walked my dogs and numerous times to Sydney, around the sanctuary I also Grafton, Port Macquarie and saw the Moon bears enjoying Taree for local regattas. Paddling their freedom – eating, playing, in a local dragon boat team is fun, swimming and snoozing. After exciting and hard work and I love Anne with a Chinese dog called Ji Ge, who was rescued from the years of cruel treatment on bear earthquake zone near Chengdu. Ji Ge’s left eye had to be removed. it. Through this sport I have also ‘bile’ farms, trapped in tiny cages, met many inspiring, joyful and they are now free to enjoy life in I also retrained as a vet nurse experience the most rewarding loving friends who have enriched peaceful natural surroundings. so that I could work with my life. time of my life. In July 2008 I animals and this enabled me to travelled to the Moon Bear Anne Ditton Forster, NSW

www.bcna.org.au Autumn 2009 (Issue 46)  Becoming a Fenceliner

I am fond of telling people that the Hans Heysen trail in South breast cancer isn’t the worst Australia in 2003. thing that’s ever happened to During our trip we talked to me, not that I could see that different groups at night about when I was diagnosed in 1996 who we were and why we did and undergoing radiation and these adventures. We wanted chemo. to prove that having had breast Four years later I read in our cancer was not a death sentence. local paper about a group of I’m sure we got the message survivors doing a 1000km bike across many times. After all, we ride around Tasmania with a were living proof of survivors not group called Fenceliners. I knew sufferers. Both trips were filled the trip was for me. with fun and laughter and I’m I trained hard on my new bike grateful I had breast cancer so I and set off to join them in March Sue during her cycle around Tasmania. could join them. It’s just one hell 2001 and it’s the best adventure of an entrance fee! I’ve ever had. I learned more and got fit. Undulating became a After the trip I joined the Sue Lane about breast cancer, met some swearword. There are a few hills Fenceliners’ committee and Browns Plains, Queensland wonderful survivors and made down in Tassie! helped organise the fourth life-long friends, plus saw Tasmania adventure – a 500km walk of

Talking about expensive treatments

‘Doctors shouldn’t make judgements to a woman and her family if it Ninety-six per cent of the they want, and what kind of on whether or not women, rich or turns out that she cannot afford women involved in the survey information they want. poor, can afford a drug – we should to pay for the treatment. told us that they would want to ‘In an ideal world it would be great all be given the opportunity to use We decided it was important to discuss an expensive drug with if your doctor found out how much the drug rather than shutting the find out whether women who their oncologist, even if they were you wanted to know before diving in.’ door and making assumptions.’ unlikely to be able to afford it. have had breast cancer actually Eighty-nine per cent of women Many of our readers know how want their oncologists to tell We also asked women what style said that they were comfortable expensive medications for women them about costly drugs, and of communication they would like discussing their financial situation with breast cancer can be. Drugs if so, how they would like that their oncologist to use. Eighty- with their oncologist, with some such as Herceptin and Tykerb communicated, or if they would seven per cent said that they women noting that they had cost thousands of dollars before rather not know about them. preferred their oncologist to take discussed far more personal they were made available at no BCNA worked with researchers an honest and direct approach issues with their doctors. cost through the government’s when discussing expensive drugs. from the University of Sydney to These findings are being used Pharmaceutical Benefits Scheme develop a survey to ask women ‘My doctor is very upfront about by others in communication (PBS). this question. things. He’s not warm and fuzzy, but skills training for breast cancer Research has shown that many Forty-seven women from across he’s very consistent and that is very clinicians. We will continue to oncologists worry about talking Australia participated in the survey. reassuring.’ seek opportunities to promote to women about expensive Just over half the participants had Women told us that taking an the outcomes to women and treatment options. They are often secondary breast cancer. upfront approach could include their doctors. concerned about causing distress asking how much information

 Autumn 2009 (Issue 46) Breast Cancer Network Australia The Jelly Bean Lady

February 2008 marked the professional and scientist, I fourth anniversary of my breast soon became aware of the cancer treatment and my first lack of patient-friendly and article in the Medical Journal of evidence-based information on Australia (MJA). complementary and alternative Breast cancer has given me a medicine (CAM), so I used my challenging and exciting chapter skills to create an advertising-free, in my life, which has seen me health information website that is stretch my own abilities with now number four in the world in a host of new life experiences. its field. Then, focusing on weight Never for a moment could I have management, I identified more foreseen the evolution of events than 1000 government-approved, that followed that devastating but ineffective, products. This diagnosis; and it has all been good. detailed research, which I presented in my persona of ‘The I owe my life to early detection Jelly Bean Lady’, led to television, and modern medicine and I radio and published articles wanted to find a way to say thank including the MJA report that I you. I volunteered to be in the had collaborated on with other Sentinel Node versus Axilliary scientists. Because of our work, Clearance (SNAC) clinical trial new guidelines for weight loss Loretta the Jelly Bean Lady. but I knew I could do more. products have now been written. When I gained weight I looked I would like to continue focusing as an informed consumer in I know that I can still do more. to natural remedies. I researched on ways to improve the wellbeing several research projects. With the growth in usage of what was available to see what of cancer patients through CAM and with access to a world- My next chapter has begun. would work for me, only to be integrative medicine. I have wide range of CAM research, Loretta Marron disappointed. As a computer already been invited to participate Burpengary, Queensland Singing in paradise

I was diagnosed with breast content – but a safe, interesting and a cappella choir and was hooked. cancer in 2002. It was the long supportive group of women of all That was in November 2007. It stay, during treatment, that I had ages and stages of their ‘journey’. was so good I went back in May at Jacaranda House, attached to I look forward to our monthly 2008 and have also joined ‘Sing the San Hospital at Wahroonga meetings, which help me not only Australia’. that gave me time to rethink to catch up but to move on. So, my priorities now are to be where I was going in my life. However, the most rewarding as happy as I can be, not in the I did try returning to work part- thing I have done is take up singing, hedonistic sense but to seize the time, but realised that too many in the safety of a choir. A friend day – carpe diem. For too long I bits of my mind and spirit had told me she was going ‘Singing in felt the glass was half empty, not been jangled by the experience. I Paradise’ and asked if I wanted to half full and I defy anyone to feel couldn’t return to where I’d been. go. I said ‘I can’t read music, don’t depressed when they are singing Marika in Fiji. When I had a second ‘scare’ think I can sing and have never in a choir. The heart and soul – luckily a false alarm – I decided The local Breast Cancer Support been in a choir since primary are too bound up in the song to to reorganise what I was doing Group was wonderful – not all school’. Despite this I went to deviate sideways. and how I was living. gloom, doom and medical in Fiji for a week as part of an Marika Privett Port Macquarie, NSW

www.bcna.org.au Autumn 2009 (Issue 46)  An artist’s muse

I never thought I would be an continued through chemotherapy, artist’s muse. I could never have hair loss and radiotherapy. Some imagined that at 48 and as an of the paintings were beautiful, avoider of communal changing some very confronting. All were rooms, I would sit naked in an truthful. John was dealing with artist’s studio. his own on-going journey with Shortly after having a wide local a rare genetic cancer and what excision for breast cancer I resulted was something about enrolled in a life drawing class. both of us, expressed in paint and ‘I wouldn’t mind being a model charcoal. An exhibition is planned sometime’ I half jested to John entitled ‘Muses – Inspiration my art teacher, ‘I’m an interesting and Intimacies’. A year after colour at the moment with two my diagnosis I am feeling well, bright red scars and blue dyed confident and hopeful about the skin’. Later I was far from sure future. that this was something I could Being an artist’s muse was an Sarah Holmes see through. intrinsic and tangible part of my However, I had recently been half- recovery from the physical and to chest wall. It was all very So I took off my clothes, and was naked with complete strangers, emotional challenges of breast necessary, all very medical. just me. A woman, comfortable had my breasts squashed by cancer and treatment. I cannot This, I reasoned, was about in my altered body, looked at for mammogram plates, lain under finish this without acknowledging restoring balance into my life, proportion and colour, for light the cold gel of an ultrasound my exceptional husband Paul, bringing slowness, softness and and shadow, for the wonder of probe, had a piece of breast tissue who has shared my medical and gentleness. This was about curves life. This was my way of weighing cored out for biopsy, and radio- artistic journey with me, slightly and contours, beauty and light. art against science and leaving me active isotopes injected around bemused, but always with love. This was transcending the merely whole. my nipple. Finally my breast Sarah Holmes medical and was about triumph After that first time I returned had been cut open from nipple Canberra, ACT and life. every week to the studio. This Tree change

On a good day, during a long with a plan but rather cancer course of treatment, I was called ‘STOP!’ and then recovery pottering around my inner allowed me to go on in a new suburban garden. We had direction. Change became tradesmen in the house and possible in the present, rather one of them observed me from than in a distant future idea, once the verandah as he enjoyed my ‘normal’ life was interrupted. his morning cuppa. Something I sometimes ask myself whether in what I was doing prompted Judy with her purebred chooks. I would be here if I hadn’t had him to ask, ‘You a country girl are ya?’. Without thinking, I cancer. I don’t have the answer to answered, ‘Only in my dreams’. in the country, joyously tending a Somehow cancer gave me the that question, just the knowledge large food garden, revelling in the breathing space to reassess, that here is where I want to be. I had breast cancer in 2000 and physical work, followed around by a to articulate the ‘dream’ and Judy Margolis another primary cancer in 2002, so beautiful flock of purebred chooks, gradually bring it to reality. It’s Portarlington, Victoria there were years of treatment and enjoying the peace. not that I set out consciously illness. Yet here I am in 2008, living

 Autumn 2009 (Issue 46) Breast Cancer Network Australia Walking Kokoda

Having had two benign lumps Kokoda was physically very hard removed from my left breast I but the most amazing experience wasn’t too worried when I found and one which I will never forget. a lump in my right breast. So The people I went with were when I saw my doctor after my terrific, everyone supported mammogram the last thing I each other and the local PNG expected to hear was ‘Sorry Jane people are very caring; I couldn’t this is a nasty one’. have done the track without my My appointments with the breast porter Buddy. We walked 96km surgeon were a blur, especially in seven days, eight nights. when she told me I would need I’m proud of my group and feel to have a mastectomy. I do, honoured to have shared a very however, remember saying to her emotional journey with them. I ‘I don’t have time for this’. With now feel I can conquer the world! the support of my fantastic family Jane Ashcroft and friends I have not let this Jane walking the Kokoda Track with the help of her porter Buddy. Red Hill South, Victoria horrible disease slow me down. In September 2008 I walked something I never thought I could the attitude ‘live life like there the Kokoda Track, which is do. However, having had breast is no tomorrow’ and I am very cancer, I now go through life with thankful that there is! Becoming a storyteller

In 2004, while working as the and treatment, I have rekindled my director of a child care centre, I creativity, working together with a was diagnosed with breast cancer. dear friend creating a storytelling Following a mastectomy and quilt to help me express and chemo, I returned to work. reflect on the emotions of this I found that there were few current journey. Again, I would appropriate resources to help never have believed that one day I my preschoolers understand the would work on a project involving issues related to cancer. So began fabric, threads, design, colour and a new journey for me. I wrote a drawing: skills I did not know I picture book based on my own had! story and the book Safina and the I believe my cancer journeys have Hat Tree was published in 2004. allowed me to explore a creative It is currently listed as a useful Cynthia dressed and ready to tell a story. self which had been lying dormant resource and tool by BCNA for many years. I continue to be and the NSW Cancer Council it would be one related to a puppets and hats and sharing creative in writing stories for my to help young children in their personal journey. magic time with these young grandchildren and engaging them understanding of cancer. Writing Since writing the book, I have children! I continued on this in storytelling performances, this book was enormously stopped working as a director and career path until January 2008 and hope in the near future to fulfilling, as I always had a desire commenced storytelling; doing when I was diagnosed with cancer be able to return to storytelling to write a children’s book, but I performances in preschools using in the other breast. Throughout professionally. would never have thought that stories, song and dance, masks, the year, following a mastectomy Cynthia Hartman Thirroul, NSW www.bcna.org.au Autumn 2009 (Issue 46)  I never thought I’d fall in love again

My husband Maurice and I met Last Wednesday I had a through work and married in mastectomy after I was diagnosed 2000. There is not much surprise with invasive breast cancer. I in our life and everything is just woke up feeling so weak but the normal. As we don’t have kids first thing I saw was Maurice most of our fights were related wearing very formal clothes, to ridiculous things; for example jumping up and down with tears, I complained that he has never and kissing me everywhere in shown enough passion towards front of the nurses, saying ‘Honey, me in public. Sometimes when I love you, I love you, I love you! we walk our dog together, he ... the Doctor said you are okay tends to walk in front of me and and I am going to be good, I went I walk behind. to have a hair cut for you’. I burst Also, I hate to see Maurice out laughing. always wearing shabby clothes, So if you asked me when I really even when attending important decided that I will spend the rest occasions. One time when Stephanie with Maurice and their dog Teddy. of my life with this man, love we rushed to a friend’s party, him dearly, deeply for the rest of I realised he was wearing an To me Maurice is a stubborn because of our differing opinions. my life, until death do us apart, old t-shirt that had a stain on person who likes to follow his I cried so much and wanted to it was at 8.30pm on the 3rd of it. So I had to drag him to the own rules. He doesn’t like to get leave him. I seriously doubted if December, 2008. nearest shop to buy a new shirt. his hair cut, he doesn’t like to our marriage could last forever. Stephanie Hsu That night all I heard was him attend parties and he doesn’t like He was such a different person Epping, NSW whingeing about my wasting to meet new friends. A few times and all we seemed to do was money on unnecessary things we got into serious arguments argue. and that it was really making him uncomfortable to dress formally. Becoming a hospital chaplain

I never thought I would be a chaplain at the same hospital; Pentecostal hospital chaplain. If he visits the men and I visit the my life had not changed after women. breast cancer, I certainly would The other passion I have had for not be visiting patients in hospital. almost 20 years was to re-visit I had never envisaged doing this Italy, as our first visit was a long with my life. time ago and quite short. After I now meet many wonderful, collecting information about Italy brave people suffering all kinds of for years, we decided it was time medical conditions. The work is to go. We went in the spring last very rewarding to me personally year for nine weeks. We booked as from time to time I meet a 500-year-old cottage in a hill the whole family, relatives, the town in Umbria for a month. The husband or friends. I meet so entire trip was wonderful and we many caring people as well as met many interesting people. nurses tending to their patients. Joan Brown My husband is also a hospital West Beach, South Australia Joan with her husband Malcolm.

10 Autumn 2009 (Issue 46) Breast Cancer Network Australia My story I never thought I would …

On my 35th birthday in September 1979 I never thought I would be diagnosed with breast cancer, however a month later I was. My children were aged 8 and 10. At the time I thought I would never see my two daughters grow into wonderful mothers. They now each have three children. I take great pleasure in watching their development and being involved in the nurturing of five granddaughters and one grandson. I also thought I would never complete a further nine years of study, finally achieving a Bachelor of Business in 1986. I am still working as a self-employed accountant. I never thought I would get to see more of our wonderful country but my husband and I have undertaken extensive Barbara inside the cheetahs’ enclosure at the National Zoo in Canberra. travel. We have driven more than 150,000km around Australia and • drive the infamous Gibb River As I approach my 30th New Zealand. These trips allow More stories me to indulge three passions road anniversary on this journey, I can say that I never thought I would You can visit our website at – planning the trips, photography • do a sunrise walk to the www.bcna.org.au > Stories to and collecting books on summit of Mt Kosciuszko see my 65th birthday. To celebrate Australian history and Australian I am planning two trips. The first read more personal stories • be a passenger on several mail travellers’ tales. I have written and will be 30 days driving around from women and men about runs in the outback illustrated a book based on our Tasmania and the second will be how breast cancer has affected travels for our grandchildren. • climb the sand dune called Big 30 days driving around Australia their lives. Red in the Simpson Desert taking in all the mainland states. Some of the other things I Also visit www.bcna.org.au thought I would never do but • be shown sacred Aboriginal Barbara Satterley > Stories >Seeking stories Lockleys, South Australia now have: tribal lands by an elder in the to see what types of stories Pilbara we would like to receive for • fly in an open Tiger Moth future issues of The Beacon. plane • spend time inside the enclosure with cheetahs at the National Zoo in Canberra.

www.bcna.org.au Autumn 2009 (Issue 46) 11 Reviews

In Part 1 ‘Put your diagnosis what tomorrow would bring, into perspective’ Kerslake roadblocks or days where discusses many commonly held everything seems to be easy, and misconceptions, including the the days of not knowing what origin of cancers. His theory is lies ahead, but being able to trust that since it is not known how yourself and the direction in or why the cancers form, it is which Polly was heading. therefore much more important Polly’s ability to ‘go with the for people to focus on their flow’ and the opportunities the recovery. This struck a chord with Lions’ Club of Australia gave Polly me, as did his statement that the by opening up a new world of cancer patient has not helped Polly’s GlobalWalk (DVD) friendships and camaraderie from create the cancer. These are both others around the world, were statements that we know to be On 1 August 1999, Polly Letofsky admirable. true, but it is comforting to have left her home in Vail, USA, and Polly is an inspirational person them repeated! headed west. She travelled across four continents, 22 countries and who has been able to bring Life, Happiness … As this book was written by a more than 14,000 miles, by foot, the ‘breast cancer crusade’ to survivor, I feel that it is most & Cancer as an awareness campaign for places where it had usually been suited to people who are in By Phil Kerslake; Publisher: breast cancer. In each country a subject that was not openly recovery, or who are post- Fontaine Press 2nd Revised she chose a breast cancer discussed, an encouraging sign for Edition 2008. Format: Paperback. treatment and are looking for organisation to receive the women across the world that this Number of pages: 150. a bit of reassurance and help in money she raised while walking subject should be heard. moving forward. It is designed It is always good to hear of in that country. In Australia she The DVD is a thoroughly to be a handbook that you can chose BCNA and managed to long-term cancer survivors. enjoyable walk that enabled me refer to when needed and not raise $30,000 during her time in The positive message of this to travel, albeit through Polly’s necessarily read cover to cover. Australia. The DVD of Polly’s walk book begins in Phil Kerslake’s eyes, to places in the world that has recently been released. We introduction when he states that I do not entirely agree with I would never have been able to asked members of our Review he has been living with cancer all his methods and ideas, but visit. I hope Polly’s friendships & Survey Group to review it for 25 years, has overcome six acknowledge that they have made on this journey stay with for us. cancer diagnoses, and is currently certainly worked for him, and her forever. therefore other readers may be Polly’s GlobalWalk is a wonderful in remission. Marie Craw able to relate them to their own opportunity to be a virtual The book is divided into four Werribee, Victoria circumstances and benefit from participant in Polly’s journey. parts, starting with putting your The DVD is available for $24.95, them. I felt I was willing her along and diagnosis into perspective, then plus postage, from our website at wanting to be there and share moving on to taking action to It is a concisely written book www.bcna.org.au > Visit our shop. with the other breast cancer support healing, how to explore and provokes much thought. I survivors who joined her on and express yourself, and closing recommend this book because of stages of her walk. with life after cancer. The first its positive uplifting content and two parts were particularly ‘you can do it’ attitude. The survivors who joined her interesting as they reaffirm Marlene Fiebiger gave insight into the parallels some of the feelings and coping Goolwa, South Australia between Polly’s journey and mechanisms I employed during the breast cancer journey. my treatment and recovery. The wonder and worry of

12 Autumn 2009 (Issue 46) Breast Cancer Network Australia Profiling our Member Groups Linking together Over the past 10 years one of The Hills Cancer Support Group BCNA’s key priorities has been to link together Australians personally affected by breast cancer. The Hills Cancer Support Group, in Mount Barker, South Australia, The 208 breast cancer groups has been for three years around Australia that have and places a strong emphasis on come under the BCNA supporting its members through umbrella as our Member friendship and laughter. Groups are essential in linking women together. ‘We are a fun group,’ says group coordinator Mary Haimes. ‘We We welcome the following new support one another in times of BCNA Member Groups: need, but know the importance of • Bega Valley Pink Links Breast letting our hair down and having Cancer Support Group, NSW some fun.’ • Bendigo Cancer Support The group meets monthly at Group, Vic. Mount Barker Hospital. Most are • Dragons Abreast Wagga breast cancer survivors, but the Wagga Inc, NSW group caters for people with all • Livin’ Laughin’ and Lovin’ It cancers, including one brave man. Joy Ayres, Rosemary Ingles, Mary Haimes group, Townsville, Qld ‘Our volunteer facilitator, Bette and Iby Horton (front) join in the mad hatter fun at the • Mayflies (secondary cancer Hills Cancer Support Group Melbourne Cup Luncheon. Barrow, helps to make the group support group), Wodonga, Vic. so successful,’ Mary said. Bette is • Stanthorpe Cancer Support a former palliative care nurse and In between meetings, the know about the My Journey Kit Group, Qld organises a guest speaker for the group organises social activities and Hope & Hurdles Pack.’ • Young Women's Network group every three or four months. including lunches, coffee mornings Over the past two years, several and movies. They hold an annual Group – Toowoomba, Qld ‘One of the most helpful was a group members have attended a Melbourne Cup Luncheon, grief counsellor,’ Mary said. ‘Our five day retreat at Yorke Peninsula, You can visit our website to wearing ‘mad hats’ and enjoying group has lost three members organised by the Peninsula find a Member Group, including each other’s company. and the counsellor helped us with Palliative Care Service. ‘This is support groups, in your state or strategies to cope during the The group also enjoys pampering a week of fun and information, territory at www.bcna.org.au > final stages of a person’s life and days run by the Adelaide Hills and an opportunity to let our About BCNA > Member groups. afterwards.’ Community Nursing Service. The hair down,’ Mary said. ‘Last year BCNA also has 32,000 individual group works quite closely with we performed plays and even an Another valuable speaker was members across Australia. the Service and in 2008 combined Abba routine.’ The nine members a physiotherapist, who talked Our members are women, with them to host a Mini-Field of who attended were so thrilled about osteoporosis and gave the men, their family members and Women. ‘We will definitely do that they have convinced more to women some useful tips to help friends who have been affected that again in 2009,’ Mary said. ‘We attend in 2009. them better manage their daily by breast cancer and subscribe also make sure new members household tasks. to our Beacon magazine. www.bcna.org.au Autumn 2009 (Issue 46) 13 Thank you

We appreciate the financial • nabCapital – National Australia support given to us by Bank individuals, clubs, organisations • Pink Lady Golf Day – and companies around Australia. Committee, Victoria Thank you to all the staff at the Thank you to all our supporters at We would especially like to Sussan stores who were busy Pacific Brands, including: • Pymble Ladies College, NSW acknowledge the help of the selling BCNA pins over Christmas. • Berlei following recent outstanding • Roadhouse Café – Cheryl Thank you to the 4,500 women • Dunlop Flooring supporters: Davis who participated in the Sussan Women’s Fun Run, raising more • Grosby • ACT Dragons Abreast • Roost Homewares than $60,000 for BCNA. • Sleepmaker • Athletics Australia • Rubegg 4 Hair – Sandy Banks • Tontine • Ballarat and Clarendon • Roth Charitable Foundation College, Victoria • Sacred Heart Primary School, • The Berlei Group Kew, Victoria • Berwick Balcara Social Club • WA Institute of Fashion and • Robert Boysow Textiles, Swan Tafe • Braces ‘n’ Faces Orthodontics • Weipa Bowls Club, – Paul Buchholz Queensland • City of Casey, Victoria Memorials • Collins Food Group We pay tribute to the lives of: • effective Freight Management • Anthony Avery • G-Force Recruitment – People • Heather Growse At Work • Janice Burke • Hope Young and Ina Fuhlbohm • Jane Parks • Jurina Demaine • Karyn Warren • Chris Kelly • Kerryn McCann • Kingswood Golf Club, Victoria • Linda Evans • Jodi, Michele and Laura Kirkby • Linda Wordie • Laidley Hospital, Queensland – Lorraine Prole • Lorna Gibson • Le Reve Pty Ltd • Marlene Dixon • Lion Nathan We are grateful for the donations we received in their memory. • Manildra Group – The Honan family Celebrations On Saturday 10 January 2009, the inaugural Pink Lady Fundraising Day • The Michael and Andrew was held at Kembla Grange Racecourse. Bakers Delight bakeries across Wollongong hosted the day and more than $15,000 Buxton Foundation Thank you to those who celebrated a special occasion and was raised for BCNA. Thank you to all who supported the day. • Montmorency Secondary asked for donations to BCNA in College, Victoria lieu of presents. Congratulations to Carly Nairn and Simon Bryant on their recent wedding.

14 Autumn 2009 (Issue 46) Breast Cancer Network Australia Pink buns are on their way

The Pink Bun campaign for a pink bun or two. Visit our 2009 is fast approaching. website www.bcna.org.au to From 23 April to 13 May 2009 find your local bakery. Bakers Delight bakeries around • You can also vote for your Australia will turn pink. This favourite Bakers Delight campaign gives Bakers Delight bakery in the Pink Bun awards the opportunity to continue at www.bcna.org.au its generous support of Breast Cancer Network Australia The Bakers Delight staff love (BCNA). to meet women who have used BCNA’s free resources, such The campaign aims to: as the My Journey Kit and The • raise much-needed funds Beacon. We are able to provide • raise awareness of the support these resources free to women Suzanne Mullen, Betty Arthur and Linda Nadort with their BCNA available to those who are and their families thanks to the information stand outside Bakers Delight, Westfield Kotara, NSW, affected by breast cancer. generous support of Bakers during the 2008 Pink Bun campaign. Delight and our other sponsors. ‘It is great to know that 100% of all the pink bun money goes to BCNA. ‘Bakers Delight is extremely proud every dollar raised goes towards and in that time have raised They must sell an awful lot of buns.’ of its long association and unique BCNA’s work.’ more than $2.7 million. We are ­– Joan NSW partnership with BCNA … The – Roger and Lesley Gillespie, overwhelmed by their enthusiasm Bakers Delight annual “Pink Bun” Co-Founders and Directors of in making a real difference How can you help? fundraising campaign provides our Bakers Delight locally and nationally for those • Develop an appetite for pink bakeries and their staff with the Bakers Delight bakeries have personally affected by breast buns and visit your local sense of satisfaction knowing that supported BCNA since 2000 cancer. Bakers Delight bakery to buy

Spread the word in 2009

During 2008 we sent out our free it to a friend, family member, a All donations help us to continue My Journey Kit to just under 9,000 doctor – or anyone who would providing our free resources such women newly diagnosed with benefit from knowing the as the My Journey Kit and The breast cancer. With approximately My Journey Kit is available. Beacon. Further information 13,000 women diagnosed every In 2008 we launched our about the website is found on year, we need your help to reach Virtual Field of Women website the back of the My Journey Kit even more women in 2009. (www.fieldofwomen.org.au). promotional flyer in this issue of In this issue of The Beacon People can send a message of The Beacon. you will find aMy Journey Kit support to someone who has For more information or promotional flyer, which includes been diagnosed with breast more promotional flyers email ordering details. You might like cancer, while making a $20 [email protected] or call us to keep it handy, to show or give donation to BCNA. on 1800 500 258 (freecall).

BCNA gratefully acknowledges our partnership with Bakers Delight.

‘Promonesque’ by Barbara Fahey www.bcna.org.au Autumn 2009 (Issue 46) 15 PaperlinX proudly supports women with breast cancer by generously donating the paper for Upcoming Events The Beacon and The Inside Story. Printing kindly supported by Vega Press.

March 25: BCNA’s forum in Bendigo, Victoria, will feature guest speakers, with the theme Living Beyond Breast Cancer. For more details visit our website www.bcna.org.au > Events > BCNA forums or call us on 1800 500 258 (freecall). Your stories March 28 – 29: The Tasmania Breast Cancer Conference for women will be held at the Hotel Grand Chancellor, Launceston, from 12 noon Saturday to 1pm Sunday. The conference is free for women to attend, We are seeking stories for though registration is essential. For more information about the program and to register contact Pauline the Spring 2009 issue of Watson 03 6344 8968 or [email protected] or visit www.bcna.org.au > State by State > Tasmania > The Beacon about the Tas events. creative things you’ve done April: BCNA will present a forum for women in Canberra in April. For more details about the forum visit since having breast cancer. our website www.bcna.org.au > Events > BCNA forums or call us on 1800 500 258 (freecall). You may have been inspired to April 23 – May 13: Bakers Delight Pink Bun campaign where 100% of the money raised comes to BCNA. take up watercolour painting, See page 15 to read about how you can help make this campaign the best so far. scrapbooking, gospel singing May 10: The National Breast Cancer Foundation will be holding their Mothers Day Classic, in all capital cities or the rumba. You may have as well as Parramatta, Geelong and the Gold Coast. To register visit www.mothersdayclassic.org become an avid theatre goer, May 13 – 15: The UICC 15th International Reach to Recovery Breast Cancer Support Conference will bring discovered a love of outdoor women from across the world to Brisbane. Visit www.reachtorecovery2009.org for more information on this music festivals or chamber three day event, including registration options. orchestra concerts. Maybe May 24: The Hunter Breast Cancer Public Forum 2009 – Love and Breast Cancer – its impact on women, their you’ve helped with your child’s families and friends will be presented by The Hunter Breast Cancer Education and Support Committee and will be supported by BCNA. Contact Suzanne Mullen on 0404 966 788 or [email protected] for school theatre production. further information and to register. If it’s creative and you’ve done it, we’d love to hear about it. Visit our website www.bcna.org.au > Events for information about recent and upcoming events held by Please email articles of 200-300 or for BCNA. You can also visit www.bcna.org.au > State by state for information about events taking words (about half a page) to place in your state or territory. [email protected] by the end of June 2009. Would you like to be on the mailing list for The Beacon or The Inside Story? Please also include a high-resolution digital photo, Telephone 1800 500 258 (freecall), email [email protected] or fill in this coupon and send or post your photo to us, and it to: Breast Cancer Network Australia, 293 Camberwell Road, Camberwell, Victoria 3124. we will return it to you. Yes, please send me: p The Beacon, BCNA’s free quarterly magazine p The Inside Story, a four-page supplement on living with secondary breast cancer, mailed with The Beacon to those who request it.

Name: ...... the BEACON Address: ...... Layout: SUBStitution BCNA State: ...... Postcode: ...... Phone: ( ) ...... 293 Camberwell Road, Camberwell, Victoria 3124 Email: ...... 1800 500 258 (freecall), Have you had a diagnosis of breast cancer? ❑ Yes ❑ No (03) 9805 2500 [email protected] or If yes, what year were you diagnosed? ...... What year were you born? ...... www.bcna.org.au Have you had a diagnosis of secondary breast cancer? ❑ Yes ❑ No If yes, in what year...... If you wish to unsubscribe to The Beacon or The Inside Story please contact BCNA.

16 Autumn 2009 (Issue 46) Breast Cancer Network Australia