I was not quite twelve when my aunt died. Ever watchful of her figure, a fastidious housekeeper and the perfect hostess in that 1950s full-skirted style, she accepted the changes in her body with a grace I have rarely seen in another. But grace only goes so far and once cancer hits a certain point there’s no denying that you are very, very ill.
Minnie was diagnosed with ovarian cancer at the start of the 80s. For sometime she’d noticed changes in bowel habit and lower abdominal bloating, but had been reassured by her doctor after various tests that there was nothing to worry about. It was not his fault; in that day it was so difficult to diagnose and the sensitivity of many tests was so much less than today.
By the time the cancer was diagnosed, Minnie’s disease was at a late stage. She persisted with the housework and cooking, keeping the most pristine living environment in spite of her treatments – and I do mean in spite, not despite. She did not believe she would die until the very end.
My mother was a nurse, molded in a cast of the classical Florence Nightingale figure. Having married Minnie’s brother our two families grew up spending a great deal of time together. Minnie held my parents first grandchild, but never saw her own granddaughter. The photograph shows a terribly cachexic woman with the most beautiful coifed hair beaming at the camera holding her grand niece in the flowing lace christening gown. She was so pleased to hold that child.
In 1982, Minnie’s health deteriorated dramatically. She did not wish to die in hospital, so Mum coordinated her home care, teaching Minnie’s family how to care for her. The doctor visited her at home when she became too ill to attend his surgery. Mum managed the drugs, especially the pain killers that became rapidly more necessary in her final days. In the wee hours of the morning the phone would ring. My mother would answer and whilst I was in my own bed supposedly asleep, I could hear Minnie’s scream emanate through the earpiece. Not a word would be said to the caller as Mum simply hung up the phone and left the house. She would generally make it back in time to get me ready for school despite having driven halfway across Melbourne and was almost always home when I got back at the end of the school day. During school hours, Mum was caring for Minnie as well.
In her final days, Minnie would sit in the sunroom at the rear of the house with her beautiful enormous German shepherd; it was the only room her adored hound was allowed into, a concession she made when she could no longer get down the steep steps to the yard. On Easter Monday of 1982, Minnie passed away. It left a hole in my father’s heart and a bond between him and his nieces that cannot be described. Minnie did not see her 54th birthday.
The reason I’m telling you all this is because now, thirty years later, the diagnosis of ovarian cancer remains as elusive as it did when Minnie was diagnosed. There is no definitive test. The disease occurs in 1 in every 77 women; for 75% of those women it will be diagnosed at a late stage, when the cancer has already spread to other organs. Radical surgeries that remove organs such as the uterus, bowel, bladder may be necessary, leaving the patient with a colostomy or urinary bag for the remainder of their life. Radiotherapy and chemotherapy are other treatment possibilities. And the saddest thing about this is that the disease, when caught early, can be curved in 80% of women.
Breast cancer has received enormous funding from so many sources and awareness has improved since the 1990s, making services and survival rates increase dramatically; but ovarian cancer, which shares some of the genetic risks factors with breast cancer, has gone mostly unnoticed. Women with the high risk BRCA1 and BRCA2 genetic mutations sometimes elect to have both their breasts and ovaries removed long before cancer appears. Research into these two gene groups provides data for both breast and ovarian cancer, but the publicity of ovarian cancer remains poor and the lack of a highly diagnostic, specific test remains the single greatest concern.
Ovarian cancer symptoms are subtle: changes in bowel habit, weight loss or gain, bloating, vaginal bleeding, back pain, nausea, indigestion, fatigue, urinary frequency, reduction in or loss of appetite. It cannot be diagnosed by a pap smear. Symptoms such as those described can fit a range of problems, from bowel cancer to irritable bowel, Crohn’s disease and just the vagaries of the menstrual cycle. But if your bodily habits change with no recognizable cause, you should be seeking advice from your doctor.
There are other factors that have been suggested in the development of the disease, that are still under investigation. Talcum powder used in the genital region is one of them. Rather than take the risk when having your bikini wax done, why not request that the beautician not use the talc? Other risk factors include the long term use of oestrogen only hormone replacement or multiple exposures to fertility drugs, obesity, a high fat diet and smoking. These are all things within our control. There are others that are not so much, such as a small number of or no pregnancies and Ashkenazi Jewish heritage.
What I want you all to take from this story is two things. Go to your doctor and push for answers if your bodily habits change and be sure an explanation is found that fits with your symptoms. Treatment should ameliorate the discomforts and be proof that you’ve found the cause. If not, ask the doctor to do further investigation. Secondly, get behind ovarian cancer research and fundraising. Until there is a definitive test women will continue to be diagnosed at a late stage and far too many women will die before they have the chance to hold their grandchildren. After thirty years, the fact this disease remains so poorly understood and vastly devastating is simply unacceptable. I’d like to see a definitive test before another thirty have passed.
You can find further information at Ovarian Cancer Australia.
This is not a sponsored post. It is, quite simply, a cause close to heart. Minnie suffered as no-one should suffer.