BEGINNING OF JOURNEY In 2004 I was working full time as Customer Service Manager for a direct selling company and in October went to see a muscular-skeletal specialist as I had a nagging groin injury for some 6 months which was getting worse. He sent me for an MRI. I told work I would be back later that Friday afternoon after I got the results. Well, I got the results and it was a secondary cancer in the femur. From there, I never went back to work. An Orthopaedic Surgeon suggested I get crutches straight away and go and see him on the Monday. Tuesday I had a Bone and CT Scan, saw him again on the Wednesday and on the operating table at the Wesley on the Thursday. Phew!!! Whilst recuperating in hospital they found a lump in my left breast and my lymph gland on the left side and realised this was my primary. After I left hospital I had 10 radium treatments on my femur and (fingers crossed) it has stopped it from spreading. I have had chemotheraphy treatment. My lump in my breast has shrunk from 2.8cm to 1.8cm and at this point in time haven’t had to have any surgery but most probably will have to have a lumpectomy in the near future. My “hot spots” in my bones have been contained and not spreading – so that is fantastic news!!!!

ABOUT ME I have come to terms with my illness, and value every single moment of my life. There are times when I do get down, but with the support from Choices and this support group, you pick yourself up. I have met the most amazing women through having my illness and that is the positive thing of having cancer. I live in my own home in Albany Creek. I grew up in Essendon in Melbourne and moved to Brisbane with my ex husband and children in 1995. I am now back on the Sole Parent pension (living in poverty!!!!) but have just decided to start selling jewellery through party plan for an extra income (and an interest) and I can work it around my treatment.

ABOUT MY FAMILY I am a single Mum with two teenage children. Clint is 16yrs and now lives with his father and Rachel who is nearly 13yrs (who still lives with me). I have been happily divorced since 1997 and have no partner at the moment. My Dad died when I was 8 yrs old and Mum brought me and my older brother up on her own. Mum died of vulva cancer 3 years ago. So I only have my brother left who lives in Melbourne and we have regular contact. My children have accepted my illness and I am quite open to them. My daughter thought I looked pretty groove when I lost my hair!!! We all have a good laugh about it.

Well, that is my story and I value sharing this information with the other fabulous women in this group.

BEGINNING OF JOURNEY 29.01.2002 – R. Mastectomy for invasive lobular carcinoma. 39/45 lymph nodes cancerous. Not good.

Because of high nodal involvement I was given very aggressive chemo & radiation treatment. This took some 8 months & then CT & bone scans, done after the mastectomy, were repeated. A hot spot on T4 on the bone scan that had been previously dismissed as not a metastasis was now investigated further. A large tumour was found on T4 with suspected smaller lesions on T3, L3 & L4. So straight from the primary to the secondary diagnosis and onto the next regime of treatment. 15 rads to T4 followed. I was then treated with the hormonal Femara (my cancer is highly oestrogen positive) and the bisphosphonate Zometa which kept my bone mets relatively stable until November 2004. I had been having increasing eating problems, namely pain and difficulty swallowing. An endoscopy identified lobular stomach mets. Four months of Taxotare kept these mets at bay but progression occurred when it was ceased. Hormonal treatments have now been ceased as I have progressed on both Femara & Aromasin. I am now taking Xeloda & my eating has improved dramatically so it appears to be working. So I am eating up because who knows how long I will get from this drug.

ABOUT ME Home: Varsity Lakes, Gold Coast My main interests are fishing, gardening, reading, share trading, travel, & for all my initial intentions to modify/moderate my diet I still love good food & wine.
Family: Divorcee. 3 independent sons currently (January 2006) aged 28, 26 & 22.
Share house with friend Jeanette, a dog & a cat.
Employment History: Psychologist for 20 years. Financial Planner 13 years. Retired June 2003 – a decision made easier by access to an income protection policy which means I am financially OK. Once my metastatic diagnosis was made I decided to bring forward all the things I was going to do. I ceased work. I have travelled to North America, Borneo, Japan & many parts of Australia. I sold my house in Brisbane & moved to the Gold Coast to fulfil a dream that one day I would live on the water which is where I now reside. I have had a jetty built so the dog, the fishing rods, & I can happily while away the days. My philosophy is I may not have a long time but I intend having the best of times available. To date I believe I am accomplishing this goal well &, as strange as it may seem, I am fairly happy with my lot. Who knows where we go from here. As I am now on my 3rd line of chemo, & have failed on 2 hormonals, my remaining treatment options are diminishing. However, I learnt fairly early into this journey that this disease is extremely unpredictable as to its rate of progress, response to treatments, and where it might show up next. Everything is relative & rather than regret what I have lost, I try & appreciate all the positive aspects of my life.

The Group: This group has been invaluable to me. I stand in awe of the courage, dignity, humour, & loving concern of the women I have met. The collective knowledge of the group is extraordinary. I have witnessed women treading paths that no one would ever choose to venture on. It is a continual source of inspiration to me & nurtures me well when I hit the low spots.

The most difficult part has been the deaths of some of our members but this would never deter me from continuing with the group. Rather I prefer to focus on the privilege it has been to have known these ladies, each of whom has been remarkable in her own way. I once read an article by a journalist regretting not having spent more time with a relative who died suddenly. She quoted a Buddhist saying “Keep death as a friend, always sitting on your shoulder.” In other words live your days as best you can. I now welcome each day on awakening, marvel at the beauty that surrounds me, and look forward to spending more time doing the things I enjoy.

BEGINNING OF JOURNEY November 2002  I waited till my son’s HSC exams were finished before investigating a lump; had had many cysts. After an exhausting day at the Wesley Breast Clinic, I was told that I would need a mastectomy. Shock, horror – and I’d gone alone to the clinic. A week later I had a mastectomy. I’m OK with losing my breast, even had a farewell to breast night with my two girls and took some photos. I’m quite used to the prosthesis, except for when it fell out at Yoga!

Six months on a variety of chemos, a dose of Barmah Forest virus and shingles (from the lowered immune system) plus a frozen shoulder, 6 weeks of radiotherapy and then my Dad’s death took a lot out of me. I went to a week long stay at the Petrea King Quest for Life centre which for me was the most healing part of 2003. I slowly recovered and returned gradually to work.

I decided it was time to start doing some of the things I wanted to do, having been a single mum for the previous 12 years and working full time. My 3 children were out of home by then and relatively independent. A trip overseas had always been part of my reward to myself, so I had 6 wonderful weeks in Europe, on my own like a backpacker, painting, hiking and staying with locals as part of the voluntary organization Servas.

DIAGNOSIS OF SECONDARIES  I found a lump on my mastectomy scar and started to get very tired so cut short my visit to 6weeks. I learned on my return that I had tumours in my liver and lungs and was started on Xolada – it was myself who suggested the oncologist test me for Her2, rather a shabby oversight on his part I thought, given that a rapid return of cancer is often an indicator. So I was put on Hercepton and Taxotere again , changed oncologists and was off work for another 7 months.

ABOUT ME I have three children who are a delight to me – aged 28, 25 and 21 and live with my dog Mindy, but have a very supportive network of friends and family, enjoy my painting and job (social worker at the local Rehabilitation Ward in the hospital) and have been fitting in as many holidays and getaways as my finances will allow. My plan is to get back to rural France, or maybe Patagonia?

Besides painting and travelling, the other passion I’ve been able to indulge since my diagnosis has been reading – it’s kept me sane, entertained, enlightened and eye strained through many a bleak period. Hundreds (literally) of books have flowed through my home. At times I still have to pinch myself to believe that I have cancer, but my regular bouts of exhaustion remind me. I’ve joined Dragons Abreast at Currumbin, this support group and the local one. I get down at times but also enjoy some things much more intensely at other times. It’s sometimes like the calm between storms and though life is very different, it’s mostly OK at the moment. Cancer is a life altering experience for me – in some ways it has been life enriching also.

BEGINNING OF BREAST CANCER JOURNEY  In May 1996, I was a 40 year old secondary school teacher with a 10 year old daughter, when I found a lump. The treatment was a mastectomy and immediate tram flap reconstruction, followed by 6 months of CMF chemotherapy. In May 1997, I had a localised recurrence which required day surgery and radiotherapy. Although the breast cancer experience was very demanding, I got on with life and hoped I would be one of the approximate 70% for whom cancer does not return.

DIAGNOSIS OF METASTATIC BREAST CANCER In June 1999, a sore hip and a persistent cough lead to the diagnosis of breast cancer in my bones and small nodules in my lungs. I took sick leave and had 6 months chemotherapy, this time Epirubicin and Taxotere. I lost my hair, but didn’t have too many other side effects, except fatigue & menopause. I did a lot of reading and decided to ‘embrace’ the treatment and imagine the chemotherapy was full of little pack men, running around my body, gobbling up the cancer. For the past 6 years, I have been on treatment, currently Herceptin, Zometa and chemotherapy. It is tough and inconvenient at times, but I manage the cancer as a chronic illness and generally have good quality of life. I am very much a partner in my treatment and have accessed second opinions 3 times in the 6 years.

ABOUT ME AND MY FAMILY I realised there was a reasonable amount of formal support for women with early breast cancer, but very little for women with advanced. (This has changed a bit over the past 6 years). I was pretty devastated when I learned metastatic breast cancer had no cure and my life could be considerably cut short. Despite having a very supportive family, I really needed someone to talk to and felt very alone. I looked for help but could not find specialised support for advanced breast cancer. In November 1999, I joined this support group. I have found it particularly helpful to meet and share with other women in a similar position in a safe supportive environment; and I have made (and lost) some wonderful friends.

In October 1999, my partner and I married and our wedding day was fantastic, despite the fact that I was wearing a wig. My daughter and two step-sons and our families and friends attended.

In 2000 I decided to retire from teaching in order to have more time for my daughter who was 13 by this time, my husband, my parents, family and friends; and to do more of the things I wanted to do, such as ‘smell the roses’ and undertake trips in Australia and overseas. My step-sons are now 23 and 26 years old and live in Sydney; and my daughter is flatting and works full-time. She will be 20 soon.

In 2002 I became the voluntary State Representative for Breast Cancer Network Australia (BCNA) and I enjoy promoting the goals of seeking to empower Australians personally affected by breast cancer and improve their care by advocacy, the provision of information and targeted support.

I try hard not to be fearful of the cancer. I once heard Nelson Mandela interviewed about his unjust imprisonment for many years. He explained that his enemies could take away his freedom, but they could not take his mind or his spirit. He said he would have had to give those away and he did not. This struck a cord with me and I determined I would not let the cancer break my spirit; and I would strive to live a happy and purposeful life despite the cancer. I just try to work around it, over it, under it and enjoy the life I have. I try not to regret or fret for what might have been. Of course, I am very lucky to have such a supportive husband and parents.

Veronica’s Speech

In 1996 I was a 40 year old secondary school teacher with a ten year old daughter, when I found a lump and was diagnosed with primary breast cancer. The treatment was a mastectomy followed by 6 months of chemotherapy.

Unfortunately, in 1999, aged 43, a persistent cough and a sore hip lead to a diagnosis of secondary or metastatic breast cancer. Like Kay, Jane McGrath (the cricketer’s wife) and Belinda Emmett (Rove’s wife) and many women in Australia, the cancer had spread into my bones and small nodules in my lungs. Breast cancer is the main cancer which affects women and is the main cause of cancer death.

By this time, I was much better informed about breast cancer and I was also told by my oncologist that advanced breast cancer could not be cured, but there was treatment which would hopefully extend my survival. This time round, I really needed someone to talk to besides my wonderful husband and parents. I had to face a life of living with an illness, ongoing treatment and the possibility of an early death. I needed help to realise that I had done nothing to deserve this diagnosis – that I was just one of the unlucky ones and it was bloody bad luck! I needed to meet other women with a similar diagnosis to help me feel normal again. I needed to see that I could still strive to live joyfully despite this major challenge.

There was little or no real organised support for women with advanced breast cancer at this time and in fact some of us experienced a lack of understanding from the breast cancer community. We were women living with advanced breast cancer who could not be cured and apparently this was many women’s worst nightmare. It almost seemed, and still does at times, that it is better for others, if we do not speak out. The emphasis is on being positive, that most women survive breast cancer; and the majority do, thanks to early detection due to screening and advancing treatment. Each year in Australia, over 11, 500 women and 100 men are diagnosed with breast cancer and over 2,600 women die. The most recent stat for Qld is 460 Queensland women died from breast cancer in 2003. The five year survival rate for breast cancer has increased from 71% to 87% over the past 15 years since breast screening was introduced. However, only 68% of women diagnosed are surviving 10 years or more.

Between one quarter and one third of women diagnosed will be diagnosed with or develop advanced breast cancer. This is a considerable minority! Proper statistics are not recorded. Cancer registries just record initial diagnosis and death. We want them to record both primary diagnosis and secondary diagnosis. How can governments and health systems plan for the treatment, care and support of people with advanced cancer without up-to-date, correct statistics of incidence and length of survival?

Luckily for me I had a very caring breast surgeon, Dr Chris Pyke, who told me about this support group which had just commenced and I joined in late 1999. This group, facilitated by professionals and in partnership with the women members, has made a tremendous difference to my quality of life. I realise that I am not alone. It is a friendship circle of women across Qld, who understand what I go though and gives additional, specialised support. This illness is ongoing for me and over time it has progressed. For the past 4 years I had been more on, than off chemotherapy. There really does need to be options of psychosocial support for women like us. This website is an extension of the service of our group and expands the options available. It is very important that these services be funded and I am not embarrassed to make a special plea to our Qld Members of Parliament, present tonight, to make sure these services and others are funded on an ongoing basis. This group is well established, supported by experienced professionals with specialised knowledge and understanding of advanced breast cancer, and based on good, solid psychosocial theory and practice. It is a leader in its field and it has teleconferencing facilities for rural, regional and remote Queensland women. It delivers a lot for a relatively small amount of money. It is a service which Qld Health presently funds and can be justly proud of. Thanks to the foresight of Dr Bronwen Beacham, Mary O’Brien and Pia Hirsch, Queensland has an excellent, ‘state of the art’ psychosocial support service for women living with advanced breast cancer. It helps women like me, live with a better quality of life, so that I can continue to contribute to my family and community. Current women members will be able to help support new women using this website.

Veronica Macaulay-Cross, OAM, died peacefully on 15 March 2007. She lived, inspirationally, with advanced breast cancer for eight years, always working to better the treatment and support for all women living with the illness. She was a role model to women in the group, encouraging and supporting group members to live the best lives they are able while dealing with advanced breast cancer. She will be greatly missed.

DIAGNOSIS OF METASTATIC BREAST CANCER In June 1999, a sore hip and a persistent cough lead to the diagnosis of breast cancer in my bones and small nodules in my lungs. I took sick leave and had 6 months chemotherapy, this time Epirubicin and Taxotere. I lost my hair, but didn’t have too many other side effects, except fatigue & menopause. I did a lot of reading and decided to ‘embrace’ the treatment and imagine the chemotherapy was full of little pack men, running around my body, gobbling up the cancer. For the past 6 years, I have been on treatment, currently Herceptin, Zometa and chemotherapy. It is tough and inconvenient at times, but I manage the cancer as a chronic illness and generally have good quality of life. I am very much a partner in my treatment and have accessed second opinions 3 times in the 6 years.

ABOUT ME AND MY FAMILY I realised there was a reasonable amount of formal support for women with early breast cancer, but very little for women with advanced. (This has changed a bit over the past 6 years). I was pretty devastated when I learned metastatic breast cancer had no cure and my life could be considerably cut short. Despite having a very supportive family, I really needed someone to talk to and felt very alone. I looked for help but could not find specialised support for advanced breast cancer. In November 1999, I joined this support group. I have found it particularly helpful to meet and share with other women in a similar position in a safe supportive environment; and I have made (and lost) some wonderful friends.

In October 1999, my partner and I married and our wedding day was fantastic, despite the fact that I was wearing a wig. My daughter and two step-sons and our families and friends attended.

In 2000 I decided to retire from teaching in order to have more time for my daughter who was 13 by this time, my husband, my parents, family and friends; and to do more of the things I wanted to do, such as ‘smell the roses’ and undertake trips in Australia and overseas. My step-sons are now 23 and 26 years old and live in Sydney; and my daughter is flatting and works full-time. She will be 20 soon.

In 2002 I became the voluntary State Representative for Breast Cancer Network Australia (BCNA) and I enjoy promoting the goals of seeking to empower Australians personally affected by breast cancer and improve their care by advocacy, the provision of information and targeted support.

I try hard not to be fearful of the cancer. I once heard Nelson Mandela interviewed about his unjust imprisonment for many years. He explained that his enemies could take away his freedom, but they could not take his mind or his spirit. He said he would have had to give those away and he did not. This struck a cord with me and I determined I would not let the cancer break my spirit; and I would strive to live a happy and purposeful life despite the cancer. I just try to work around it, over it, under it and enjoy the life I have. I try not to regret or fret for what might have been. Of course, I am very lucky to have such a supportive husband and parents.

BEGINNING OF JOURNEY In 1996 I found a lump in my left breast. Tests were done then, and all came back clear. 10 months later I found a second lump. Tests showed that the first lump had turned malignant, and the second one was as well. I had the lumps and lymph nodes removed, and I had chemo and radiation. I had mammograms and scans done every year since then, and had no problems.

DIAGNOSIS OF SECONDARIES In 2003 I had a very sore back. I had Bowen Therapy, but the pain was becoming worse, and the therapist suggested I have an Xray, which showed tumours in the spine. Further tests revealed other tumours in the bones. In 2005 a mammogram and scan showed a return of cancer to the ducts in the left breast. In 2005, on Melbourne Cup day, I noticed swelling in my left arm and hand, and now have a sleeve and glove to wear. I am still receiving one or another type of treatment.

ABOUT ME I studied teaching, and worked until my eldest child was born, when I stopped teaching, as I wanted to stay home. I breastfed our children for 15 years. The myth of breastfeed = no breast cancer flew with the wind for me.

When my youngest child was one I went back as a relief teacher. I do not do a lot of relief teaching now. I believe that now when I mention, “No, not today thanks because I am having this or that treatment,” the school secretary tends not to ring again for a number of days.

I do weekly meditation, and attend a weekly discussion group where most people have some form of cancer. They are great groups. I also attend a Know Your Bible group. I enjoy crochet, and have made tablecloths for several family members.

ABOUT MY FAMILY I have 2 older brothers and a younger sister. I met my husband in 1980 when I was playing hockey and he was in the army. He returned to Townsville after his discharge, and we were married in 1982. We have 5 children, 3 girls and 2 boys, and 2 grandchildren. Three of our children are still living at home, and one lives in Newcastle with her children. One child is in the army, and the other is studying teaching.

BEGINNING OF BREAST CANCER JOURNEY: I was diagnosed with breast cancer in November 2001 and had a mastectomy a week later. I’m not sure how long the lump was there, I thought it was a cyst and I was not due for another mammogram for six months. At the end of January 2002 I started a course of six cycles of chemotherapy (Epirubicin/cyclophosphamide) in Bundaberg. In July I went to Brisbane for five weeks of radiotherapy. I was then prescribed Tamoxifen.

DIAGNOSIS OF SECONDARIES: In February 2004 I stated to feel some pain in my back. I was told by my doctor I had arthritis and at a medical centre while visiting our daughter in October I was treated with physio for tissue damage. Then in November 2004 I was diagnosed with multiple bone/liver metastases. I think I saw my doctor’s face change colour when he realised he had been wrong. Arimidex replaced tamoxifen and I was also prescribed Bonefos. A CT scan two months later showed that arimidex was not effective so I had another six cycles of chemo (Docetaxel). After that I was prescribed Exemestane and then Provera. Neither of these has slowed down the tumour growth in my liver so I am now taking Xeloda.

ABOUT ME AND MY FAMILY: My husband, Alan & I moved to Burnett Heads from Dubbo in NSW, where we both had grown up. Mid life crisis! Three of our children – Allison, Carolin and Dennis , live with their families in this area now after gradually following us up here. Our youngest daughter Laura lives with her husband at Labrador. We have eight beautiful grandchildren. I am very grateful that they all live close by and I can have a kiddie fix whenever I need it.

After my experience with doctors and the hospital system (first with diagnosis and then having to chase up appointments etc for chemo) I was feeling very isolated, and I have found this support group very helpful as I sometimes find it hard to talk to doctors.