Marlene's story
Eleven years ago I was enjoying the simple life with my sons, Mat aged 7 and Nik aged 7. Our home was situated on a gentle rise overlooking the ever-changing water of the Gippsland Lakes in eastern Victoria, nestled in amongst the Cootamundra Wattles and towering gums that gave home to a menagerie of Rosellas, Lorekeetes, Magpies, Kangaroos, Emus and Koalas. We had just celebrated my 34th birthday and Nik’s 7th birthday; Christmas was just around the corner.
During a shower on the morning of my final accounting class before exams, I found a lump in my left breast. It was quite large and palpable and I immediately made a doctor’s appointment for later that morning. I drove the ¾’s of an hour trip into town stressing about missing my final class, deciding to continue on to class after a quick consultation with the doc. He was undecided, and referred me on to a surgeon the following day. Small niggles of doubt began to surface. I had expected a verdict of ‘It’s a cyst, nothing for you to worry about, your too young for breast cancer’. The surgeon’s verdict was for me to have a mammogram.
After a long three week wait, the mammogram was performed and I was immediately sent back across the road to the surgeon's rooms. The lump appeared to be cancerous and my only option was a biopsy. A pathologist would be on hand, and if the lump did proved to be positive, a radical mastectomy would be performed at the same time. The possibility of reconstruction was not mentioned. Surgery was booked for the following Thursday, December 16, at our nearest hospital in Sale 67 kms away.
The following 5 days were a blur of final Christmas shopping, my 2 son’s school concert and numerous Christmas celebrations. There was no guarantee that I would make it home in time for Christmas and if I did, what shape I would be in.
A radical mastectomy was performed and lymph nodes taken. At no stage was I ever informed what they were or why they had been removed. I was surprised at my quick recovery and was allowed to go home 6 days later. Christmas was a quiet time; I spent it being pampered by family and friends.
After six weeks I returned for my routine check up, my surgeon informed me that he was extremely happy with the surgery and referred me on to a cardiologist (who oversaw oncology patients for ‘normal’ chemotherapy under the guidance of Peter Mac doctors), just to be on the safe side. This oncology appointment was given no urgency and we were blissfully unprepared for the news I was about to receive. That night the champagne flowed as we celebrated the positive news. Late that night my parents opened up and shared the fears they had experienced at the thought of loosing me.
I walked into that cardiologist’s room with a light step. It only took a few minutes for my world to change. Seventeen out of the 18 lymph nodes removed at surgery were positive. I was coldly handed a prognosis of two years, maybe five if I underwent mainstream chemotherapy.
With a few ill-chosen words everything changed. For a few moments I sat shell-shocked, refusing to accept his virtual death sentence. I then rallied and was determined not to leave without receiving something, anything that I could at least pin my hopes on. Finally, I was thrown a slender lifeline - a clinical trial being performed at the Royal Melbourne Hospital (high dose chemotherapy with stem cell rescue), nearly four hours away. The fact that this was an unknown and dangerous route was emphasised but I believed then, and still do to this day, that this was my only chance at survival - I could not see that I had a choice. After numerous tests, including a bone marrow biopsy and bone and liver scans which showed no spread of the disease, I was accepted onto the trial.
My two young sons moved in with my parents, who fortunately lived nearby. Their lives continued on as normal. They were told that Mum would to be away for three months, or maybe even longer, with only the possibility of a weekend visit each month. I moved to Melbourne in the first week of February, setting up residence with friends. I was sent to the Essendon hospital, where they performed a bone marrow rescue and inserted a Hickman catheter. Then the real test began.
Three rounds of chemo, which involved four days in hospital (which blew out to three weeks during my final dose) followed by daily trips into hospital for blood tests, GCSF injections and numerous blood transfusions. When my blood counts finally rose to an accepted level, I was allowed home for a flying overnight visit before once again returning for the next bout.
Looking back, the following three months were a blur of infections (one life threatening), nausea, vomiting, instant menopause, surgery to insert a new catheter when the first one fell out, raging temperatures, ulcerated mouth, loss of 90 percent of all hair, loss of finger and toe nails and loss of appetite. (This is a particularly aggressive type of chemotherapy and has very aggressive side effects). But during it all, not once did I ever loose the will to survive.
In late May, I finally returned home. I remember being unable to halt the tears; they rolled down my cheeks as I watched Melbourne disappearing in the rear-view mirror. They were tears of happiness, I was finally returning to my sons, my family and my friends. But they were also tears of fear at losing my support team. After nearly four long months I was watching my safety net disappear. I no longer felt safe or protected; it was long drive home.
For the next month, I slept. My parents speak now of the near-corpse that returned to them, they both feared for my life. Within a year, our lives were back to normal, although I was often tired -- the toxicity of the drug regime had damaged my bone marrow. Life continued, but now with a vivid awareness of how fleeting it can be, of how so many of us take it for granted.
Finally, when I was able to return home with my two sons, I went in search of local support. There was nothing that was right for me. The Sale cancer support group was attended by (in my 34 year old eyes) elderly men and women, the youngest being a 65 year old male. This was not what I needed. Waratah Breast Cancer Support Group -- a self help group for women living in the Wellington and East Gippsland shires in Eastern Victoria -- was born from the frustration and difficulties I experienced during and after my breast cancer diagnosis. Its inaugural meeting was held on Februrary1995, and it now has a mailing list of over 100 women. I sit on numerous other committees and projects, which have and hopefully continue to make a difference for all of us.
During yearly routine check up in 2000, 3 new suspicious lumps were found in my left armpit underneath the tip of my mastectomy scar. This time, three hook-wires were inserted. During the subsequent surgery, the surgeon used them to guide him to the three small lumps which were removed for biopsy. The trip home, later that afternoon, was a memorable one. Lyn Swinburne (from Breast Cancer Network Australia) rang offering me the honour of being an Olympic torch-bearer for BCNA. After hanging up on her a couple of times, the information finally sank through my anesthetic fuddled mind. What a positive finish to an otherwise lousy day! Of course -- I accepted; ‘walking’ with the Olympic torch is one of the highlights of my life. My torch, was lit by a true hero -- Peter Davidson -- he was the medivac hero who was lowered down into the water of a raging Bass Strait to save crew members in that now infamous Sydney to Hobart Yacht race. My torch now proudly sits behind glass on our dining room wall.
A few days later I was given the biopsy results. 2 of them were cancerous. Once again I had to make the move to Melbourne for daily radiotherapy; another seven weeks away from my sons, another stay with Nan & Pa for my 2 sons. This time I was able to return home on Fridays and stay with my boys until Monday morning. They were given the chance to look after me for each of the weekends. This was important for them as they had been too young during my first breast cancer treatment. Their memory of my first bout was that I had been taken away from them for a long, long time.
The radiation battered my already-damaged bone marrow and I have had to resort to blood transfusions and copious amounts of sleep to compensate. I have since been diagnosed with having Haemochromatosis, an excess of iron in the blood.
I am passionate about getting a fair deal for women who are living and dealing with breast cancer in the rural/remote areas of Australia. My frustration grew after attending numerous conferences and forums where the rural issue was raised and then seemingly forgotten, usually placed into the ‘too hard basket’. After communication with another frustrated rural women, Judy Shepherdson from Echuca, we decided to take action ourselves and Project BREAST – Building Rural Equality And Strengthening Ties – was born, it was financed by a BCNA Community Grant. We invited an inspiring group of women from every state and territory to join us, and then identified and prioritised the major issues rural women faced. In June 2004 BREAST changed from a one-off, time limited Project to an official BCNA Working Party – The Rural and Remote Working Party, supported and coordinated by a staff member at BCNA.
Over the last 3 years I have also been involved in the Heartsongs project. This has involved a year spent travelling to different areas across rural Victoria, offering writing workshops to women living with breast cancer. These workshops have provided the women with a safe, nurturing environment to explore, share and finally document their personal journeys with breast cancer. The result is a bitter/sweet though unsentimental collection of work, which is heartbreaking, inspiring and uplifting. It contains material that is practical, whimsical, angry, challenging and compelling. The finished manuscript will be published and released in 2005.
The Heartsongs journey has been a journey of self-discovery for me. It has given me the opportunity to learn the art of story telling thus now having the ability to share my journey with others. In the 2004 Victorian Cancer Council Daffodil Art Awards my piece ‘The Unveiling’, was highly commended.
More importantly, Heartsongs has given me the chance to meet, work, laugh and cry with an inspiring group of special women. Women who prove every day that it is possible to live ‘well’ after a diagnosis of breast cancer.
In February 2004 I finally made the decision to have my right breast removed. This was done for a number of reasons. I was 16DD and could see no reason to lug around a prosthesis of the same size, I had also began to have exploratory investigation into lumps in my so called ‘good breast’. It is now October 2004 and I have yet to have the reconstruction I have promised myself - two small, perky breasts. Over the last ten years my body has undergone 10 major operations, and I’m finding my recovery takes longer each time. This surgery will happen when the time is right for me.
Every year I undergo tests - mammogram, breast ultrasound, bone scan, liver scan, numerous blood tests. As invasive as I find them, they are a necessary part of my life. Now, nearly eleven years after my darkest days, I take solace in a favourite quote: "Life is not measured by the number of breaths taken, but by those moments that steal our breath away".
--Marlene , Rural Victoria
