Home Newly diagnosed Rural & remote Rural and Remote Working Party Rural & Remote Working Party Members

Rural & Remote Working Party Members

The current members of BCNA's Rural and Remote Working Party are Anna Wellings Booth (ACT), Yvonne Shaw (NSW), Vivienne Gregg (NSW), Lesley Reilly (NT), Margaret Gleeson (NT), Anne Cameron (Tas), Marlene Parsons (Vic) and Pauline Venn (Vic). If you would like more information about the Rural & Remote Working Party, please contact the Rural and Remote Working Party coordinator at BCNA on 1800 500 258, or write to us at 293 Camberwell Road, Camberwell Victoria 3124, or email This e-mail address is being protected from spam bots, you need JavaScript enabled to view it Anna Wellings Booth (ACT) In 1987, at the age of 45, I was diagnosed with breast cancer and had a lumpectomy and radiotherapy. I've been a board member of Breast Cancer Network Australia and was an ACT rep since the launch of the Network until 2006. Prior to the launch of the Network I was a member of the National Breast Cancer Centre's Consumer Advisory Group. I've also been a past Board member of the ACT Cancer Council as well as being a support volunteer. I am a volunteer with ACT Hospice and the Palliative Care Society and have represented Health Care Consumers on the Hospice and Palliative Care Partnership Team. I am a founding member and past Vice-President of Bosom Buddies Breast Cancer Support Group in Canberra and have represented consumers on various local committees.  Currently I am a member of the Southern Area Health Services Breast Cancer Reference Group. I am passionate about lymphoedema and was a member of the steering committee for the now established Lymphoedema Clinic at Calvary Hospital and in 2007 was appointed as a consumer on the Australasian Lymphology Association Council.  I was responsible for the planting of the very first Field of Women in Canberra in 1998 and have been involved every year since. I was the driving force behind the formation of Dragons Abreast (ACT and Region) Dragon Boat team and joined five Australians in Toronto as a member of Internationally Abreast in June 2001. I was a member of the Organising Committee for Abreast in Australia 2007 and co-compiler of A Dragon's Tale the history of Dragons Abreast Australia. I'm married to David who is my rock and strength  and am the mother of four children Sarah Adam,Sam and Laura (deceased) and three grandchildren. My other interests include theatre, gardening, reading, music, rugby (watching!) and keeping in touch with young people. I retired early in 2003 and completed a Clinical Pastoral Education course at the Canberra Hospital where I was part of the Chaplaincy team. February 2008 Anne Cameron (Tas) I'm Anne Cameron and I live with my husband Jim in Wynyard on the north west coast of Tasmania. I am 56 years of age and I have two daughters and a son. Between us, my husband and I have 14 grandchildren. I was diagnosed with breast cancer in December 1998. It was suspected that I had lymph node activity. My treatment consisted of three sessions of chemo. I then had a radical mastectomy, three more sessions of chemo followed by 25 days of radiotherapy. One year earlier my sister died of breast cancer. My mother had bi-lateral breast cancer and survived each time. I work as a home-carer with Health and Human Resources. I am a volunteer support person for Cancer Connect and the hospice. I am also a Red Cross volunteer which includes patient transport. October 2004 Julia Leeds (QLD) I’m Julia Leeds. I’m 49 years old and I live on a cattle property 120km south-east of Charleville in south-west Queensland (1.5 hours from town). I am married to Christopher who has spent his entire life in the bush, apart from boarding school in Brisbane. He grew up on a neighbouring property; his family were some of the original settlers but unfortunately he is the last of his family on the land. He is a died-in-the-wool bushie! We have three wonderful children. Christopher (21 at university), Isabel (19 and about to start uni after a gap of 18 months, most of which she spent in Switzerland as an au pair and travelling in Europe) and Sophie (16 still at school in Brisbane). In another life I was a general practitioner in Charleville. I went there for one year, met Christopher and never left. I was the Flying Doctor for 18 months, until morning sickness grounded me, and then in general practice the last five years as a solo practitioner. In 1998, after many years of commuting between Charleville and the property, we moved full-time to the property. The children attended School of Distance Education (school of the air). This was a wonderful and very precious time, all together at home. I was a very casual home tutor so we all had a fabulous time. Then the children left one by one to go to boarding school in Brisbane. Sophie went in Grade 6 to Toowoomba Prep as it was too lonely at home. In 2004, one week before my birthday, I was diagnosed with breast cancer. The sentinel node was involved so I had the usual course of surgery, chemotherapy and radiotherapy, followed by tamoxifen and now Femara. I had to relocate to Brisbane for this for over six months. Poor old Christopher came down when he could as we were still recovering from the drought. However, as with most clouds there is a silver lining. I was fortunate enough to rent a unit, close to the Mater Private Hospital, which is also close to the girls' boarding school. So they came out of boarding and lived with me and attended school as day girls. Our son was living in Brisbane (going to uni) and he and his friends were very regular visitors, mostly for some home cooking! They were all very helpful with any of the chores that were sometimes beyond me (eg grocery shopping and taking the girls to sport). Despite the whole ordeal, it was great to spend that time with the kids and have some inner city living.   I was also lucky as I knew all my doctors previously. I did, in fact, have a contingency plan in place for treatment, never in my wildest dreams thinking I would have to put it in place. There is no family history of breast cancer or any other type of malignancy. All my chosen specialists were wonderful, kind and compassionate and extremely skilled. In November 2005, I elected to have a total hysterectomy as part of my treatment. I have been on the Board of Directors of the Royal Flying Doctor Service, Queensland Section for several years. Life is full and rewarding with this, the property and several other rural organisations, to which I belong. I am now in a position to be more involved in breast cancer issues, particularly as they relate to rural and remote women. June 2007 Pauline Venn (Vic) In March of 2003, two months after bushfires ravaged North Eastern Victoria I brought a house in Benambra and had a tree change by moving to the picturesque Victorian  high country in the far north east of the state.  2004 marked the year of my 40th birthday and began in grand style with a new car and a Kimberley's holiday. Things turned somewhat sour towards the end of 2004 when my son was diagnosed with High Functioning Autism and in December of the same year I was diagnosed with a Grade 3 breast cancer tumour. 2005 was one of personal growth and self discovery. Surgery, chemo and radiotherapy all in a Melbourne hospital took me and my then 11 year old son away from our mountain home and on an adventure to a big city. I was particularly concerned about my son and what impact the change in location and the situation was having on him. Housing was a problem as family units are very rare as I found out. We both survived by drifting from place to place, always together. My decision to become a rural and remote working party member was born from a social injustice I discovered in my breast cancer journey. I recognised that changes to the current system were required so rural and remote women can access family styled accommodation whilst receiving breast cancer treatments. I also found the Patient Assistance Schemes varied from state to state with vast inadequacies. I wanted to be part of a national voice that could lobby and influence the bureaucratic decision makers. In January of 2007 I rented a second home and moved to Benalla to support my teenage son in a special school setting that deals with his complex learning difficulties. I currently work two days a week as an assistant to the Vineyard manager at Baileys Winery of Glenrowan. Apart from my rural and remote working party role:- I hold a committee role as the rural Community Advisor (C.A.C) for Austin Health. Bi annually attend Monash University's School of Rural Health in Bendigo as a representative of Health Consumers of Rural and remote Australia Recently contributed to a Health Issues Centre reference group, for a report to Dept of Human Services into the inadequacies of the Victorian Patient Transport Assistance Scheme (VPTAS) January 2008  Marlene Parsons (Vic) I live with my two teenage sons, Mat and Nik, and Gypsy the dog in a home overlooking the ever-changing water of the Gippsland Lakes in eastern Victoria. My home is nestled in amongst the Cootamundra Wattles and towering gums that give home to a menagerie of rosellas, lorikeets, magpies, kangaroos, emus and koalas. In 1993, at the age of 34, I was diagnosed with an aggressive, stage 3 breast cancer with 17/18 positive lymph nodes. A radical mastectomy was performed, followed by participation in a clinical trial in Melbourne – (High Dose, Stem Cell Rescue). This involved a five month stay in Melbourne away from my two sons, family and friends. A local recurrence in 2000 resulted in another seven weeks spent away from my sons whilst I underwent radiotherapy in Melbourne. I have since been cancer free with low blood counts its only legacy. In 2004, after numerous false alarms I made the decision to have my right breast removed. I remained “breastless” until expanders were inserted in 2006. Mid 2007 my right breast sprung a leak and I am once again lopsided, on the opposite side this time. I will have 2 prostheses inserted in the near future and will have a “normal” silhouette for the first time in 15 years. When first diagnosed, I made it my primary goal to live to see my two boys reach maturity and able to be self sufficient—a goal now realised. I’m passionate about getting a fair deal for women who are living and dealing with breast cancer in the rural/remote areas of Australia, after experiencing the difficulties I faced after my breast cancer diagnosis. I sit on numerous committees and programs. I founded and am an active member of the Waratah Breast Cancer Support Group; which celebrates it’s 13th birthday in February 2008. From 20001 – 2006 I was Co-project Manager for the Heartsongs project. This involved a year spent travelling to different areas across rural Victoria, offering writing workshops to women living with breast cancer. These workshops provided the women with a safe, nurturing environment to explore, share and finally document their personal journeys with breast cancer. The finished manuscript was published and released in 2005.   The Heartsongs project has been a journey of self-discovery. It gave me the opportunity to share my journey with others, but more importantly, the chance to meet, work, laugh and cry with an inspiring group of special women; who prove every day that it is possible to live ‘well’ after a diagnosis of breast cancer. January 2008 Lesley Reilly (NT)  I am Lesley Reilly, originally from Goondiwindi, Queensland. In 1973, I came to the NT with the intention of staying a few months, and 34 years later, am still here! From 1973 to 1987, I lived and worked on remote aboriginal communities in the Top End, Central Australia and the Barkly Tableland. During that time, I met my husband, David. We married in 1981, then spent 6 years with the Alyewarre people at Alpurrurulam. During that time our two older children, Michael and Kathryn were born. When our third child was on the way, we moved to Alice Springs, where after spending 10 years in the township, we moved to a rural property, a spectacular spot some 20 k's west in the MacDonnell Ranges. In December, 2000, I received a recall to a BreastScreen Assessment clinic. Radiology and open biopsy results showed high grade DCIS 40mm. In one of life's strange quirks of fate, my good friend Liz, was diagnosed at this same assessment clinic, so we have been travelling together ever since on the breast cancer journey.  I had a mastectomy here in Alice Springs, performed by a general surgeon. As margins weren't clear, radiotherapy was advised, and I spent 6 weeks in Adelaide, 1500 k's away, having this treatment.  I was fortunate to stay at Greenhill Lodge in Adelaide, an excellent accommodation facility operated by the Cancer Council of SA, where I was able to focus on regaining my health. Separation from family was not easy, but it's such times that you know you can count on the great support that comes from living in a small community. On return from Adelaide, I found Liz, who had had bilateral mastectomy in Brisbane, in the process of exploring ways to support women who had experienced breast cancer diagnosis. No Breast Care Nurse position existed at the time, and our most committed supporter was Nina Odgers, then Radiographer and Co-ordinator of BreastScreen. In mid 2001, with Nina as a catalyst, and with the help of consumers and Zonta, Bosom Buddies came into being. As founding members ,we have continued with the original purpose of providing support for women diagnosed with breast cancer, and have also become involved in advocacy, community consultations, and raising public awareness of breast cancer issues. While Bosom Buddies became a member group of BCNA from its early days, being able to attend  the BCNA 2nd National  Conference in Melbourne in 2004 was another pivotal experience for myself and other Centralian women. The presentations, the workshops and meeting so many inspirational women was a fantastic experience. We were asked to have a group member join the BCNA Rural and Remote Working Party, so I became part of  that in late 2004. I also attended the Science and Advocacy Training Course that year. Meantime, working at a local level in Central Australia has meant involvement at Committee level in issues to do with lymphoedema, and its treatment. A federally funded project, auspiced through the Central Australian  Division of Primary Health Care in 2006, saw the introduction of a laser scanner, which has greatly improved outcomes for patients in the  Alice Springs area. Our group is committed to practical projects, in particular bringing a specialist fitter periodically to assist women with prosthesis and bra fittings. We  to liaising with the Breast Care Nurse, Palliative Care and other health professionals and to improving service delivery for women in the region of Central Australia. We promote the use of the "My Journey Kit" in all our public displays, and refer women to the BCNA website as a primary source of information. In 2005 our group held the inaugural Mini-field in Alice Springs., Liz and I were local co-ordinators for the Satellite telecasts, in 2006, of "Surviving Cancer in Rural and Remote Australia", and the NSW Breast Cancer Institute's "Breast Cancer in Younger Women" and in 2007  "Life After Breast Cancer." In  July 2007, we hosted a Forum with guest speakers from the Australia  New Zealand Breast Cancer Trials Group, Professor John Forbes, Dr Linda Reaby, and Dr Joanne Zujewski from the National Cancer Institute, USA. The same month, myself and two other members of Bosom Buddies gave evidence, following our submission, to the Senate Committee Hearing into Patient Assisted Travel Schemes. This is one of our most passionate areas of advocacy, particularly as  many of us have lived in places much more remote than Alice Springs. Another area of advocacy is around patient options for treatment. Since the NT Government  announced its intention in late 2004, of building a radiotherapy unit in Darwin (1500 km's north) our group has been lobbying the NT Government to allow cancer patients in Central Australia the choice to continue accessing radiotherapy treatment interstate, where many have family and emotional support. Consumers, members of the medical profession and Alice Springs residents support retaining choice. In 2006, Bosom Buddies was invited to have a consumer representative on the CanNET Network Management Group. I have been involved in that field now for just on a year, and look forward to an outcome of service enhancement for cancer patients in the NT. The most significant role of our group remains in giving support to those in our community affected by breast cancer, through our regular informal gatherings where we share experiences and provide information and access to other relevant resources. For me, being part of a team that can make a contribution to the support and wellbeing of others is a rewarding and enriching experience. I grateful most of all for the wonderful friendships which have developed along the way. February 2008   Vivienne Gregg (NSW)  As a mother of two wonderful, dependable, supportive and praiseworthy young adults who are my greatest friends (Julia is 21 and Michael 25) I am fully enjoying my life in retirement. There is yoga and tai chi, bushwalking and walking group participation, reading and book clubs, gym classes, the retired lady-teachers (Old Chalkie Chooks as we are known by some!) monthly lunches, coffee times and more, more, more. My days certainly seem full (a bit of dabbling in the garden occurs from time to time). And overseas trips are also a main item on my agenda. Hopefully I will soon undertake a master's degree in art therapy, which is a long-held dream. Since 1995, when first diagnosed with breast cancer, and following a lumpectomy, chemotherapy and radiotherapy, I have been a volunteer with the Cancer Council NSW.  Living in Armidale, NSW, 500 plus kilometres from Sydney meant that treatment was away from family and friends. I first joined the local branch of the Cancer Council's ‘Cancer Action Group' and served for a number of years on the committee as president and executive member. I am the founding coordinator of the Armidale and district breast cancer support group, which currently has over 80 members. As well, I am the local organiser for the BCNA annual Mini Fields of Women and a member of the BCNA Rural and Remote Working Party.  I am also a consumer representative for BCNA. Armidale was the first regional area to hold a Relay for Life, and I served on that committee and on each subsequent Relay for Life in Armidale (four events to date). I am a volunteer with the Cancer Council NSW ‘Cancer Connect' scheme which means personal contact with those who have a diagnosis of breast cancer. I am currently the regional facilitator for the North West on the Cancer Council's regional advocacy network. In May 2006 I was appointed to the Interim Board of the Cancer Council NSW, and in August 2006 I was elected to the Board of Directors (the only regional director, the only consumer representative and one of only two women on the ten-person Board). I am the initial coordinator and trainer for Encore, a program of gentle exercise for those who have had breast cancer, a series of group activities run by YWCA and funded by NSW Health. I have been until recently a board member of Dragons Abreast Australia, and the state representative. I resigned this position in October 2006 for personal family reasons. Other experiences: Primary school teacher and relieving principal (to 2004). 1981-1990 grief and loss in-service leader for Department of Education. Careline volunteer for four years as a telephone counsellor for those in crisis. Committee member of Armidale Sanctuary Humanitarian Group for Resettlement of Approved Refugees. Committee member of Friends of the Armidale Dumaresq Library. Publicity/public relations for Sanctuary and FOADL as well as for local breast cancer support group. Language volunteer tutor at TAFE and in private homes with the Adult Migrant Education Service (a course completed in 2004). Training in advocacy skills, media skills and public speaking with Cancer Council NSW, Breast Cancer Network Australia, Dragons Abreast Australia. December 2006  Yvonne Shaw (NSW) My name is Yvonne Isabel Shaw and I live in Forbes, a beautiful town in the Central West of NSW. I was born in Melbourne on 18th October 1937 and educated at Tintern Grammer School, now at East Ringwood. I trained at Prince Henry’s Hospital, Melbourne, completing my General Nursing Certificate (1955-1958). And I did my Mid. at St Georges Hospital, Kew, Victoria (1958-1960). I was married to Ian Shaw on 20th May 1961 and moved to Bombala in NSW following our marriage. We moved to Tottenham in the centre of NSW in 1962 and we lived there for 28 years. We have three children: daughter, Sandra, who is 43, and two sons, John 42 and Peter 38. We now have five grandchildren. (All beautiful of course!) Whilst at Tottenham I worked as a Generalist Community Nurse (1975-1987) for the NSW Department of Health covering the Tottenham area. In 1987 I trained with the NSW Family Planning Association and NSW College of Nursing and completed a Post Graduate Diploma in Women's Health. As a Clinical Nurse Consultant/ Women's Health my role covered the following: Provided outreach services in 13 towns surrounding Forbes, Tottenham, Parkes area. Improved coverage of Pap smear screening and breast examinations. Developed referral networks. Established the Parkes/Forbes Breast Cancer Support Service in 1992. Worked in consultation with the Western Area NSW Cancer Council in Cancer prevention. I retired from the workforce and Community Health in 2000 following my diagnosis in 1998. My involvement in Community matters has been long and varied. In Tottenham NSW (1964-1989) I was involved in many organisations. We moved to Forbes in 1989 following the sale of the property at Tottenham. In Forbes some of the organisations I have been involved in include: Forbes Youth 2000 and Beyond Committee-Foundation Chair and successful in obtaining and establishing a Youth and Community Centre. Joined Rotary Club of Forbes in 1993, President 1997/98 and current President 2006/2007, District Governor's Assistant 2000-2003, President Elect for 2006/2007. Forbes NSW Cancer Council Relay for Life-Inaugural Chairperson for 2003 and Chair for 2004. Co-ordinator for Parkes/Forbes Breast Cancer Support. My other commitments: Represented NSW Cancer Council at National Forums eg Living with Cancer National Conference February 2002. Attended the NSW Cancer Council of NSW 2002 Awards-Received a Highly Commended Certificate for Public Advocacy. Completed the Breast Cancer Network Australia, Advocacy and Science Training Program in Melbourne November 2003. Registered as a consumer representative for Breast Cancer Network Australia. Member of the BCNA Rural and Remote Working Party 2007. My cancer history: In December 1998, I was diagnosed with lobular cancer of the left breast. I had a mastectomy, followed by chemotherapy and Tamoxifen for five years. Good health and prognosis good. I might add that my daughter was diagnosed with a DCIS of the right breast in November 1998 just before me. She had a lumpectomy and radiotherapy and is very well and has had a baby since then. Following my annual CA125 tumour marker test in March 2005 I was diagnosed with a Grade 3 serous carcinoma of the right fallopian tube which led to a complete hysterectomy and all the rest! I was lucky! Chemotherapy was given as a precaution and I completed that in July 2005. I am in good health and prognosis is good and I feel very well at present although I never seem to get all the things done I want. My real passion is to get some ‘referral' system in place so that we can get access to the newly diagnosed women with breast cancer. I have not had any newly diagnosed women coming to the group for nearly three years. They keep telling me it's the ‘Privacy Laws'. I know from experience that you have to ask someone personally to come you cannot leave it to them to come to a group of women they do not know. Ian and I have a caravan and we travel in that when we can, a lot with other Rotarians. It is a great way to see the country. April 2007