March 2006
The Young Ones
March 2006 Newsletter
In this month’s The Young Ones newsletter . . .
Thanks to Donna Gordon for stepping in to look after The Young Ones meeting last week. The girls who attended had the chance to look through the latest edition to The Young Ones library, Facing the Mirror with Cancer (see review below) as well as catch up on news and share experiences.
Each month The Young Ones newsletter keeps our members informed of news from our meetings and what’s happening in the coming month. It’s also a great place to read reviews and articles of interest.
We are always looking for contributions to the newsletter. If you’ve recently read a book, seen a website, lecture or production that you think other young women who have experienced breast cancer would be interested in, we’d love to hear from you. Thank you to Kerrie Guy and Joanne Smith who have contributed reviews and stories to this edition.
This month we are introducing a member profile, with Joanne Smith’s story. In this section we invite our members to tell us their story of diagnosis, treatment, things that got you through the tough times and life after breast cancer. To read the story of another young woman who has been through a similar experience can be a great comfort when you are diagnosed with breast cancer. The experience, particularly for young women, can be very isolating. It can also be helpful to put pen to paper, or fingers to keyboard, and write about your experiences. If you feel you’d like to share your story, send it in. We’ll include it in the Newsletter and add it to our website.
Send all contributions to ritamarigliani@netspace.net.au
Rita Marigliani, The Young Ones Coordinator
REVIEW: 6th Annual Conference for Young Women Affected by Breast Cancer
I recently had the fantastic experience of attending the 6th Annual Conference for Younger Women Affected by Breast Cancer held in Denver, Colorado, USA on 24 to 26 February 2006.
The Conference was organised by American Breast Cancer groups, Young Survivors Coalition (www.youngsurvival.org) and Living with Breast Cancer (www.lbbc.org) and is the only international Conference specifically addressing the needs and issues of Younger Women with Breast Cancer. More than 800 delegates from around the World attended the Conference from as far a field as Australia (there were six of us), Africa including Kenya, Zambia and Nigeria, Canada and England, as well as from across 48 out of the 51 States of the US. 300 of the delegates (myself included) were granted a scholarship by the organisers to attend the Conference.
The Plenary Sessions addressed medical advances in Breast Cancer in Younger Women and workshops covered a diverse range of topics including advocacy and psycho-social issues such as relationships, diet and nutrition, exercise, dealing with and relating to children, dating and intimacy issues, complementary therapies, genetic testing, clinical trials and a broad range of issues concerning advanced disease. There was also a stream of workshops specifically for caregivers and partners and supporters of Younger Women with Breast Cancer. The Conference program also provided extensive networking opportunities at a number of receptions and the Saturday Dinner and presentation during which delegates were able to meet and share stories and experiences with other Younger Women affected by Breast Cancer.
I attended a very interesting workshop on techniques to enhance your appearance during and after treatment. Lori Ovitz who presented the session did a make-up demonstration where she managed to make a woman who had just finished chemotherapy look extremely natural and very beautiful. She showed us the most amazing way to add eyebrows which did not look like they were drawn on and would not rub off or melt easily. I brought home her book (Facing the Mirror with Cancer: A Guide to Using Makeup to make a difference), and this will be available for borrowing through The Young Ones library.
One of the more interesting events was a PJ Party with Pure Romance products. Pure Romance are adult intimacy products that are sold in the US through party plan. The event was quite hilarious as products were shown and explanations provided on how to use them. Patty Brisben, the founder and CEO, made it a fun time giving away lots of products to the many women who were eager to volunteer to give small demonstrations. I declined to volunteer as I thought that I may have a difficult time explaining a vibrator at customs! You can check out their product range at www.pureromance.com
It was interesting to compare experiences with some of the other women – we are definitely up-to-date with the rest of the world with our treatment and support, and lead the way in terms of accessibility for treatment (compared with the US where treatment is extremely expensive and they are encountering quite difficult insurance issues). I was quite shocked to learn that the number of younger women in the US diagnosed with breast cancer is around 25% of all women diagnosed, compared with around 10% in Australia. I did meet many younger women - the youngest I met was 20, and she had just completed chemotherapy.
I spent a few extra days in the beautiful city of Denver with my roommate Ann Town who is from the Central Coast NSW. I did lots of shopping (great time as it was winter sales on), and went on an interesting tour around the Rockie Mountains.
I would recommend the conference to all as it was a fantastic experience to attend and meet other young survivors. I have come away with some new friendships with not only the other Aussie women who attended, but some other women from Kenya and the US. Kerri Guy
REVIEW: Facing the Mirror with Cancer - A guide to using make-up to make a difference Lori Ovitz with Joanne Kabok
Lori Ovitz is a make-up artist who works with people who are having cancer treatment to help improve their appearance. This book is full great tips on how to apply make-up and help you look like yourself at a time when treatment may make your feel like the person in the mirror is a stranger. When you’re sick some days you look and feel horrible, and no amount of make-up will change that, but other times the boost that comes from looking good, helps to make you feel good. This book can help you make the most of your good days with some great tips. I’d recommend it to anyone who is looking for easy-to-follow steps on how to use make up to improve physical appearance. Rita Marigliani
Contact Rita Marigliani if you’d like to borrow this book.
MEMBER PROFILE: JOANNE SMITH
The Diagnosis- March 16 2005
“Yes, well it has been confirmed …” the surgeon said as he uncomfortably sat down at his desk. The desk separated us. I sat still and was dumbfounded; I had been diagnosed with breast cancer at age 32. I wanted to shout, to scream, everything felt like it was moving in slow motion, as though I had woken up out of a haze when he said those words. My husband sat there, he too in a state of shock. We had been married for 14 months and had planned to try and start a family in 2005, this news had thrown these plans into disarray. I felt my dreams for the future disappear in an instant. He said I would need surgery, chemotherapy and radiotherapy. I was scared; I had never been in hospital. What would the treatment be like? I’m too young to die I thought, this isn’t fair. I recall as we left his room he handed me the name of a fertility specialist to make an appointment with. “What do I need a fertility specialist for?” I thought. Reflecting back, my mind had started to shut down to protect me, it was too much to take in. I left the surgeon’s room in shock, no tears, I couldn’t even cry. I had just been diagnosed with breast cancer.
My mind raced ahead and I began to think about all the people close to me that had been overcome by cancer, my father, grandmother, friends' parents, friends' friends. We left the consultation rooms out into the night of Melbourne, to the sound of traffic, the traffic lights turned to green, trams rushed by, people went about their daily lives. Yet at that point, I felt my life was at stand still, I felt like an observer to life, it was passing by and I was caught in shock. How would I break such news to my family, friends and what would they say, how would I deal with their reactions, how would I say it will be okay, when I didn’t know that myself? I recall the first calls, of calling my eldest brother and telling him to come over, it was a time that I wanted my family to be gathered around me, sticking together. As we drove home through Melbourne’s familiar streets, the surroundings were still the same, yet I felt something huge had changed for me and my husband and that life would never be the same again. Upon this realisation, tears started to fall.
There were a lot of decisions to make in a short period of time. One major concern was the impact the chemotherapy would have on my fertility. It was all a bit uncertain, and some of the options were not thoroughly grounded in substantial research. I felt that I had to decide quickly and it was strange to be talking about fertility issues when I was dealing with facing my own mortality. To try and hold them together was a challenge. I just want to be here I thought. Yet, we held onto hope, and wanted to do all that we could to keep the options open. My husband and I decided to freeze embryos prior to the chemotherapy and I also opted to take Zoladex injections while on chemotherapy. It was a surreal experience turning up to the IVF clinic, amongst women who were trying desperately to have children and the Nurses greeting us with excitement, yet I didn’t feel excited. I was dealing with more than possible infertility; it was just one of many issues.
As friends and family had babies, and experienced fatigued from pregnancy I was experiencing the side effects from chemotherapy and radiotherapy. It was a challenge to continue to live life as “normal”. For life had immeasurably changed. I begun to feel teary around babies, and noticed women in the street who were pregnant, attending friends’ children’s birthdays and christenings left me feeling emotional and sad. I was genuinely happy for my friends, yet I felt a sense of grief and felt empty inside. I felt isolated from my friends, how could they really understand exactly what I was grappling with? I wrestled with many dilemmas. How could I acknowledge my own feelings and experience and be open to the joy friends were experiencing of having a baby or being pregnant? If I shared with them how I was feeling, what would they say? Would I make them feel uncomfortable, guilty for having kids? I didn’t want to be the thorn in their side. If I shared my feelings they might treat me differently as though I were fragile or feel they couldn’t share with me their lives, yet all I wanted was some sensitivity. When talk turned to babies a part of me wanted my experience to be acknowledged too and not shunned away from, as this only caused me to feel even more isolated. It was like I was treading a fine line. I knew that these dilemmas would continue to have an impact on me after treatment and that I would need to learn to live beyond them, and come to a place of acceptance. This would require patience and time.
It is now a year since I was diagnosed. I have completed 10 months of treatment, which involved two operations, IVF treatment, 10 chemotherapy treatments and 6 weeks of radiotherapy. When I reflect on the last year and what things helped me during the tough times these have been the support from my husband, family and friends. It has also included becoming involved in a Buddhist healing meditation group, doing mosaics, buying/doing something nurturing after each chemotherapy, going away for weekends during treatment to focus on something external (nature I found to be a good healer), when I had my down days, allowing myself to feel however I was feeling without beating myself up and then accepting that it would pass, eating well and exercising, being informed, going to BreaCan, attending support groups, speaking to other young women who had experienced breast cancer and marking different phases with rituals and holding onto hope.
A turning point for me was going away on a holiday to mark the completion of treatment. While on holiday in Western Australia, at sunset looking out at the ocean one by one I shredded the cards from my radiotherapy appointments and threw them into the ocean. There were tears shed and it was a hard thing to do, to let go of the pain of the last year, yet it was liberating, a part of me that had been hurt could now begin to heal and I was entering a different phase of the journey, a scary phase yet also a time of opportunity.
For the last year I feel I have been climbing a mountain! It has been challenging, unpredictable, humbling, an adventure and at times I feel I have become more alive and have been jolted out of the square I was living in. I have changed and the experience has highlighted to me my own resilience and ability to deal with adversity. Like a mountain, some days the clouds hang over me, other days I can see and feel the sunshine. I am gradually learning how to live with this contrast. Joanne Smith 16/3/06
What’s happening in the next month?
BreaCan is moving
The service will close from Friday 7 April and will reopen at its new location at Queen Victoria Women’s Centre on Wednesday 19 April 2006.
BreaCan’s new details are:
BreaCan Resource Centre
Ground Floor
Queen Victoria Women’s Centre
210 Lonsdale St, Melbourne
POSTAL PO Box 1066, Melbourne VIC 3001
PHONE 1300 781 500 (cost of a local call for country callers)
FAX (03) 9921 0840
breacan@breacan.org.au
www.breacan.org.au
BreaCan is free, confidential information, support and referral service for people with breast cancer, their families and friends. Open 10am-2pm Monday, Wednesday and Thursday.
You will need to book to attend the sessions below.
Wednesday 12 & 26 April, 10.30-11.30am “Feel Good” Gentle Exercise Program for Women with Breast Cancer
Thursday 13 April, 12.00-1.30pm Hormones R Hopping – Jeffrey Zajac
Most of us know that hormones play an important role in our health and well being, but we may not understand why. Prof Jeffrey Zajac, Endocrinologist and General Physician with Austin Health, will give us an overview on hormones and how they work. He’ll explain what happens when a woman’s hormones change due to menopause - either natural or chemotherapy induced - and how these changes might impact on a younger woman versus an older woman. Jeffrey will also discuss the links between hormones and breast cancer and why hormone therapies are often recommended in the treatment of breast cancer.
Thursday, 20 & 27 April and 4 & 11 of May 2.30-3.30pm
4-Week Meditation program
Gen Rabten, a western Buddhist monk from the Kadampa Meditation Centre will be teaching meditation and how to bring stillness into your daily life. If we train our mind through meditation we can learn to be at peace, even in the most difficult situations. This is a four-week program and spaces are limited so please book in early.
Wednesday, 26 April 6.45 pm (for 7.00 pm start) - 8.30 pm Sharing It Together - A Session for Women and their Partners
Come along to a session that gives women and their partners the opportunity to talk about the practical and emotional issues in dealing with the consequences of breast cancer. Annabel Pollard, a Psychologist and Co-ordinator of Patient Support Programs at the Peter MacCallum Cancer Centre, will facilitate the discussion. Food will be provided, drinks afterwards. Limited numbers so please RSVP.
YWCA Encore exercise after breast cancer program
Next northern Melbourne metro program at Brunswick City Baths, Brunswick, Vic
1-3 pm, 27 April to 15 June
To book or for more information:
Mary Macheras-Magias
YWCA Encore Instructor
(03) 9807 3964
0412 884 996
New on The Young Ones Website
Interesting links - Shop Well With You - Shop Well with You is a not-for-profit organisation based in the US that helps women with a history of cancer by acknowledging that a woman's body image, or how she feels about her own body, affects her overall well-being. There are great tips on how to use clothing and colours to help look good and feel better
Shared Stories and Ideas - Joanne Smith's Story: The Diagnosis - March 16 2005.
Our next meeting
Our next meeting will be on Thursday April 27 at 7pm Cafe Coco, 129 Smith St Collingwood.
Contact details
Rita Marigliani
The Young Ones Coordinator:
041 123 5964
Email: ritamarigliani@netspace.net.au
Postal Address: 48 Andrew St. Windsor Vic 3181
Website: www.theyoungones.asn.au
