August 2006
The Young Ones
August 2006 Newsletter
In this month’s The Young Ones newsletter . . .
In this month’s newsletter we rejoice in the successful campaign to have Herceptin added to the PBS, putting it within reach for women with HER2 positive breast cancer. I hope you enjoy this month’s newsletter and the coming spring sunshine.
Rita Marigliani, The Young Ones Coordinator
Herceptin Update
Following on from the recommendation of the PBAC to fund Herceptin which was reported in last month’s newsletter, we have the fantastic news that the government has now approved the recommendation. Herceptin will be available with Pharmaceutical Benefits Scheme (PBS) subsidy from 1 October 2006. Anyone who started Herceptin before 1 October will be eligible for PBS subsidy after 1 October. In addition, Roche Pharmaceuticals, the manufacturers of Herceptin, have come to the party by introducing a bridging subsidy scheme to help some women now. To find out more, and the latest updates on Herceptin, visit the Breast Cancer Network Australia website at: www.bcna.org.au.
Well done to all who helped to ‘fast track’ this through the system to help women with HER2 positive early breast cancer have access to this drug at an affordable price.
Review - Heartsongs in the Key of C: Women Writing about Breast Cancer
On 23 September 2006 Heartsongs in the Key of C: Women Writing about Breast Cancer will be launched at the Otis Foundation in Mandurang near Bendigo.
Heartsongs records the joys and sorrows, the struggles, losses and achievements of ordinary women confronting an extraordinary challenge. It covers that gripping time around diagnosis, the process of coming to terms with that news, of learning and adjusting, incorporating and moving on.
Forty-eight women from across Victoria contributed to Heartsongs. Many young women are represented in the collection. Jo Ruff was 26 when she was diagnosed, Marlene Parsons, Lee-anne Hazeldene and Josè Breust, were all 34. Aged 72 at diagnosis Kath Semmler is the oldest writer. Unfortunately there are lots of women in-between too.
In ‘My Diagnosis’ Lee-anne writes about those first awful moments around diagnosis:
‘I rushed to my boss’s office, just in time to catch her and let her know I couldn’t work the next day, then burst into tears. Then I hurried back to the gymnastics, but I couldn’t stay inside to watch with all the other mothers. Back outside, I cried again. That week was filled with tests and doctors’ appointments which confirmed the worst. Living in the country has its difficulties with distances. Cancer was confirmed, over the telephone. I was in shock and just cried and cried, but I felt I needed to be brave for my children. I couldn’t possibly die, dying was not on my busy agenda!’
In ‘Again and Again and Again’ Marlene writes about the fears of recurrence:
‘… I breathe deeply, struggling to contain the fear. Breathing to compose myself. Standing, I don my bra and shirt. I shove my prosthesis in where it belongs. Taking a seat, I face him once again. Another biopsy, another row of puckered stitches to add to the tapestry on my breast. A sigh of relief; a reprieve. Once again the lump is negative.’
You might have heard about this project since it first started in 2002. For project managers Marlene Parsons and Sharyn Dickeson it has been a four-and-a-half year journey from when the idea of Heartsongs was conceived after a Warrior Women writing workshop in Sale, to applying for funding and running writing workshops throughout rural Victoria through to finally finding a publisher. Christine Gillespie was the writing mentor at the workshops and BCNA the financial auspice. The project successfully attracted funding from Australia Council for the Arts, the Alfred Felton Bequest, and VicHealth.
Judy Horacek’s illustration, ‘The Pond of Tears’, was used as a prompt in the writing workshops. This collection is loosely organised around the themes and issues that emerged from each of the six frames of her illustration. In ‘Last summer I cried’ women write about the discovery of a lump, tests and diagnosis. In ‘My tears turned into a pond’ they deal with diagnosis, surgery and treatment. ‘Over and over in my head’ deals with fears, especially of recurrence. Loss and death are broached in ‘Often I would lie by the edge’. ‘Eventually I resolved’ deals with the challenges of living and dealing with the disease. ‘Strange and beautiful things grow’ explores the beginnings of moving on.
Participating in creative writing workshops was undoubtedly was a powerful therapeutic experience for the Heartsongs writers. The published collection makes good reading, offering a range of experiences for readers. Heartsongs will resonate with anyone who has confronted uncertainty and adversity. The Heartsongs writers offer us a moving collection of writing about life.
Heartsongs in the Key of C is published by Kate Carey Productions. It’s a beautifully presented A5 hardcover book that sells for $24.95. Heartsongs can be purchased from any bookshop (some may have to order it in) or directly from the publisher, Kate Carey Productions, 51 Ormond St, Moonee Ponds Vic 3039, katecarey@overthefencepress.com.au, www.overthefencepress.com.au/katecarey.
If you would like to attend the launch and see the Otis Foundation units (a wonderful free respite for women with breast cancer) email Tess Moloney at Kate Carey Productions.
Review – BreaCan Session: “What happens when the treatment is over?”
In July this year, BreaCan hosted a seminar facilitated by Carrie Lethborg, an oncology social worker at St Vincent’s Hospital Melbourne entitled, “What happens when the treatment is over.” It was based on a study undertaken by the Oncology and Social Work department at St Vincent’s and examined the ‘lived experiences’ of women and their partners through the diagnosis, treatment and recovery phases of early breast cancer.
Carrie described diagnosis of breast cancer as a, ‘major life transition process’. She defined transition as, ‘your current reality being disrupted’. There was also some discussion about the term ‘cancer survivor’. Did we feel comfortable describing ourselves in this way? Other terms such as ‘living through cancer’, were offered as alternatives.
Diagnosis: Many women described the diagnosis as a ‘moment frozen in time’, that they will remember forever. Accompanied by the shock, were feelings of being overwhelmed and yet having to make major decisions about treatment. ‘Having to just get through.’
For many partners the shock evolves into taking on a ‘carer’ role. Trying to establish some sort of control for their loved one, but often not knowing the best way to help.
Treatment: The treatment phase is when many women stop and look at their own mortality in the face of this life-threatening illness:
“I think whenever you face your own vulnerability; it has to change you really … I think I always knew that I would die one day, but you don’t sort of have to face that. The experience of cancer means you are faced with death … for me the meaning of illness is suddenly you’re not in control.” (Barbara)
The physical side effects of treatment are mixed with trying to process the uncertainty associated with not knowing how treatment will affect you. Will I be able to cope? For partners, this can be an emotionally fatiguing phase. They are giving so much but not getting much back emotionally.
Treatment Completion: This can be the time when a woman starts to fully comprehend what she has been through and a time for the body to heal and recover. For partners and loved ones, relief is also mixed with uncertainty for what the future may hold.
Loneliness and isolation are also felt when friends, colleagues, loved ones and partners feel that life will ‘get back to normal,’ when the reality is that such a traumatic life experience often means that a person’s life is changed forever and a long recovery period is needed. From this many women realise that they need to construct a new reality for themselves, ‘a new kind of normal’ one that also involves living with the fear associated with the possibility of recurrence. Finishing treatment leaves some with the feeling that they now have to physically and emotionally fend for themselves.
“Being operated on and going through treatment was a period when I didn’t really have time to think that I had cancer … looking back it was a bit unrea l… now that treatment is finished it is becoming real … Once treatment was over, the support network starts to wind down …You haven’t got people checking on you … I’m now just on my own … cast adrift.”(Annie)
Recovery: The recovery period is filled with both relief and anxiety and it is normal to feel a gamut of emotions. The seminar described some practical ways that women and partners can manage this time:
- Sharing your feelings about the diagnosis and treatment with each other
2. Setting goals
3. Learning to live with uncertainty
4. Learning some stress management strategies
5. Talking to others in your situation.
Breast cancer is an amazing journey. We finished the seminar with some words of wisdom for the times when the journey overwhelms us with anxiety about the future and we feel unable to cope:
Break every worry and thought down, until you can bring everything back to simply dealing with and getting through the moment you are presently in.
Reference: Now What? When treatment ends: A publication for women who have completed treatment for early stage breast cancer, and their partners St Vincent’s Hospital, Melbourne
Melinda McCormack
For more information about this session, and other resources, contact BreaCan (below).
Bring your partner/support person to our October meeting
As October gets closer, make sure you’ve booked your partner/support person in to join us on October 26 for our special Young Ones meeting. We think it’s important to acknowledge that those close to us are also going through a tough time, often with little or no support. This is a great opportunity for our partners and support people to meet each other, ask questions and find comfort in shared experiences – and find out what we get up to at our meetings. Please let me know if you’re bringing someone along.
The Young Ones Christmas party- Friday 8 December, 7.30pm
Make sure you keep Friday December 8 free for The Young Ones Christmas party. This year we’re out to have some fun at Templebar Precinct, 98 Smith St Collingwood (across the road from Café Coco). It’s a Spag and Drag night - a cheap and cheerful dinner with plenty of time for us to catch up on our news before the Show starts at 8.30. No doubt we’ll be able to compare prothesis and make-up tips!
What’s Happening Next Month? (See The Young One website for updates)
YWCA Encore Program – beginning on Wednesday 11 October evening classes, 6.30pm to 8.30 pm. Healthways Fitness Centre. Dunlop Ave, Box Hill Nth. Mel ref. 46 k6.
Encore combines gentle floor and pool exercises with the support of other women. Encore aims to improve the well being of women who have experienced breast surgery in their lives. ENCORE is an 8-week NON-MEDICAL program by enrolment only. Each ENCORE co-ordinator has successfully completed the National YWCA ENCORE training.
Bookings are essential as numbers are limited. This program is provided free.
Contact Marcelle 9754 5080 – 0413 995 080 myoxon@tpg.com.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.
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
Wednesday 13 September, 12.00pm-1.30pm Older, Fitter, Stronger
Libby Oldfield, Director of Fitwise Physiotherapy, will help us understand why it’s important to maintain good health, bone density and fitness as we age. Research shows gentle weight-bearing exercises can improve well being, reduce falls and risk of fractures and osteoporosis, and help us lead an active life.
Wednesday 20 September, 12.00pm-1.30pm Tai Chi: Talk, Demonstration & Participation Event
Konrad Dorn, Chief Instructor of The Art Of Harmony Tai Chi and Qigong Centre. Konrad will provide an opportunity to learn more about and experience the benefits of Tai Chi.
Wednesday 4 October, 11.30am-2.30pm The ‘No Experience Necessary’ Writing Workshop
Well, you do need life experience for this workshop ... and women have plenty of that! Christine Gillespie will have you writing in no time. Christine is a writer, diagnosed with breast cancer in 1999. She is an experienced workshop presenter and has worked on the Warrior Women project, helping women to make sense of their experience. Whether you have early or advanced disease come along, even if you haven't written since school ... it will be fun! RSVPs essential (light lunch provided).
Newsletter Contributions
We welcome all contributions to and feedback on, 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, or would like to share your story, we’d love to hear from you. Send all your stories, reviews contributions and feedback to ritamarigliani@netspace.net.au
Our next meeting
Our next meeting will be on Thursday 28 September at 7pm Cafe Coco, 129 Smith St Collingwood. We’d love you to join us for an opportunity to meet and share experiences with other young women who’ve been diagnosed with breast cancer.
Contact details Rita Marigliani, The Young Ones Coordinator
041 123 5964
Email: ritamarigliani@netspace.net.au
Website: www.theyoungones.asn.au
