Article for Colvin Chatter, the Cancer Patients Assistance Society of NSW (CanAssist) community newsletter, Autumn 2008.

It was early Spring and the jonquils were flowering, I remember. I was looking forward to another overseas trip to research a new book and my only worry, it seemed, was what clothes to pack for the northern winter–until I received a letter reminding me that the Breast Screen bus was in Forbes and I was due for another mammogram.

My maternal grandmother had died soon after a mastectomy in 1965 and two of her three daughters, as well as one of my first cousins, are survivors who now boast only 2.5 breasts between them (plus a little cosmetic ‘stuffing’) … so I was very aware of the importance of regular breast check-ups. In more than a decade of mammograms I’d only been called back once, and on that occasion the suspect spot was diagnosed as a benign cyst. I felt very confident, therefore, that this time too any blobs and blurs would be similarly diagnosed, and chatted nonchalantly with the radiologist as she squashed my mammaries between the glass plates of her infernal machine.

Breast cancer touches everyone: headstone over the grave of my grandmother who passed away after an unsuccessful mastectomy. In the weeks before her death she managed to plant 100 gladioli bulbs which bloomed in her absence. Condobolin Cemetery, 2007.

Several weeks after my visit to the breast screen bus in Forbes I was asked to attend the clinic in Orange, a regional centre just over 100 kilometres away. This second round of x-rays and the accompanying ultrasound examination confirmed that yes, the benign cyst was still there, but now there was a raggedy star-shaped formation peeking out from behind it. Almost before I knew what was happening an alarmingly large needle was being inserted into my right breast to extract enough cells from the lesion for a biopsy. One nurse was holding my hand, another was stroking my arm, and the doctor was speaking kind words to me, but no-one would answer the question I now urgently needed answered: was it or wasn’t it? They had to wait for the pathology report, they said.

Not a pretty sight: the author ‘coming to’ after her lumpectomy at Orange Base Hospital, September 2007.

When Di Priestly, the breast care nurse, finally rang me with the results there was a long silence on my end of the line as I digested her news: an invasive ductal carcinoma. In the following weeks my emotions were all over the place while I came to terms with my tumour, negotiated specialists’ appointments and surgical procedures … and postponed my overseas trip.

Confusion, fear, anxiety, panic, helplessness, sadness, numbness, extreme vulnerability, depression … I felt them all. Plus a disturbing sense that my brain had turned to mush. I seemed to have stopped thinking. I needed to talk to someone but people in the bush, including members of my own family, tend to be very uncomfortable, embarrassed even, talking about feelings, their own or other people’s. I didn’t know where to turn – until I discovered the ‘hidden’ fellowship of cancer survivors and health carers who were able to share their own experiences and give me the empathy and practical support I needed.

People like Wendy Dunstan, secretary of the Forbes branch of CanAssist, for example. Wendy’s husband, Kerry, had been diagnosed with cancer soon after they were married and in the decades since then this couple has assisted hundreds of other locals through the disease. Wendy likens the initial diagnosis to “being hit by a ten tonne truck and you’ve got to pick up the pieces.” She understands the full weight of the challenges involved, including the psychological and financial dimensions.

Preparing the work bench: Radiation Oncology Services Unit, St Vincent’s Hospital, Sydney, where I underwent radiation therapy for breast cancer. Photo by Merrill Findlay, 15 December, 2007.

“Being in the country you’re isolated and you have to travel to your doctors, to your specialists, and it’s all very expensive,” Wendy acknowledges. “You think How am I going to do it? How do I get to Sydney. How do I afford the costs? Where do I stay? And it’s a big thing to ask for assistance, a huge thing.”

In my case surgery could be performed in Orange but I had to go to Sydney 390 km away for follow-up radiotherapy. To maintain myself for six or seven weeks in the ‘Big Smoke’ with daily visits to a radiation oncology centre seemed impossible at the time. And it would have been were it not for the Jean Colvin Hospital, CanAssist’s city sanctuary for rural cancer patients.

Jean Colvin Hospital, CanAssist’s refuge for country cancer patients, Darling Point, Sydney. Photo by Merrill Findlay, December 2007.

I didn’t realise it then, but the cost of caring for public patients like me is subsidised by our hometown communities through local branches of CanAssist. The Forbes branch currently contributes $2,000 on a confidential basis towards the care of each local patient without private healthcare cover, for example, a figure Wendy Dunstan and her small team of volunteers hope to increase to $3,000 in 2008.

“The money can come from anywhere,” Wendy explains. “We have our raffles. The High School girls have a ball every year and donate their profits to CanAssist. The local service clubs and handicrafts centres send us cheques. People give money in lieu of flowers at funerals. We collect aluminium cans and sell them. Several families give donations instead of Christmas presents, and sometimes farmers even ask their stock and station agents to send the proceeds from the sale of a couple of sheep to CanAssist.”

For those of us who are not used to accepting charity, this community cost-sharing is extremely humbling, all the more so because staying at Jean Colvin is such an overwhelmingly positive experience in every way: the beauty of the historic house itself; its setting on one of Sydney’s most exclusive harbour peninsulas; the professionalism and kindness of all the staff; the excellent food; the proximity to the city (and the Cruising Yacht Club at the bottom of the hill where patients enjoy the occasional late night out), and the quality of the emotional support fellow survivors give one another.

The view I woke to each morning at the Jean Colvin. Photo by Merrill Findlay, December 2007.

What I remember most vividly now, however, is the view from the balcony of the room I shared: the boats bobbing on Rushcutters Bay, the sails of the Opera House unfurling over the hump of Garden Island, and that coat-hanger bridge soaring across the skyline. I had to pinch myself every morning when I woke to this view and, as the weeks rolled by, my fellow survivors and I raised our glasses many times to our good fortune of being able to share this time together at the Jean Colvin, and to the medical, administrative and housekeeping staff, to the sponsors, and to all the folk back home who were making our healing possible. What more can we say but thank you. Having cancer has been a life-changing experience in so many ways.

_______

Merrill Findlay, Forbes, February 2008.

Article commissioned by CanAssist for the Autumn 2008 issue of the Jean Colvin Hospital newsletter, Colvin Chatter [pdf 1,327 kb]. All content protected by copyright.

I’d like to personally thank the staff at the Breast Screening Clinic in Orange, the Orange Base Hospital and the Greater Western Area Health Service’s Anson Cottage, especially social worker Nancy Gordon; all the cancer network volunteers who supported me emotionally, including Gwen Coulter who celebrated her 40th anniversary as a survivor of breast cancer soon after I was diagnosed; all the volunteers associated with CanAssist, including Wendy Dunstan in Forbes; all the specialists and other medical professionals who treated me in Orange and Sydney, including the staff of the Radiation Oncology Services Unit at the Sacred Heart campus of St Vincent’s Hospital; all the staff at Jean Colvin Hospital who went way beyond their job descriptions in caring for their ‘guests’; all the friends who phoned, visited and emailed me or sent me Get Well cards or flowers, including the Bogan Gate Branch of the Country Women’s Association, and Jim Donaldson, a retired Anglican vicar from Melbourne who shares my interest in rural Australia but whom I didn’t know was a cancer survivor himself until I had the privilege of receiving his wonderfully supportive epistles; plus all my friends in Pakistan (the destination of the overseas trip I had to postpone) who emailed or telephoned me to tell me they were praying for me … which is especially poignant to me because Pakistan has the highest rate of breast cancer in Asia and no national screening program, so tumours are generally not diagnosed until it is too late.

And, of course, my thanks to my family, and to my fellow breast cancer survivors, a powerful sisterhood I’m now part of.

It takes a global village to recover from this disease …

Page created 6 February 2008. Last revised 20 December 08. Posted on this new site on 23 January 2011.