My Sister Jo

Jo (Josephine) was my elder sister. She died in 1985 at the age of 47 after the breast cancer she contracted three years earlier had metastasized to her bones and other parts of her body. When I think of what happened to her, I am gripped by fear because I am afraid it will happen to me. The way I’ve chosen to cope with this is to try to furnish myself with as much information as possible about her cancer and the procedures and treatment she would have undergone in 1982 in the hope that I will discover why she died and why, 22 years later I won’t. There is no-one alive today that I am aware of who has any information about her, not even where she was hospitalized.

There’s not much I remember about her cancer. At the time, the word inspired such fear (it still does, but the subject is discussed so much more and there is such a glut of information about it that the word loses some of the mystique of earlier times), I had no idea what to ask or even how to digest what she’d told me.

I knew nothing about her illness until the day I received a letter from her informing me that she’d had an operation and that the tumor had been encapsulated. She described how for six months, she had to cover her breast and not allow it to get wet when taking a bath. When I visited England some time later, I remember her telling me that she was going into early menopause and that her breasts were becoming very large. I remember my mother mentioning it in worried tones.

At the time, our family doctor told me that an encapsulated tumor presented the best chance for survival and when I asked why in that case Jo had died, she theorized that a cell must have escaped. From the little information I have, it seems likely that Jo too underwent radiation treatment and that she was also taking hormonal treatment, probably Tomoxifen—which I will be taking in another month.

My questions focus on the differences in knowledge about the disease and the efficacy of diagnoses and different treatments in 1982 and 2007. Although there is no way of ever finding out, I wonder if an errant cell escaped and metastasized or did Jo have a recurrence which remained unidentified? This question is as imperative today as it was then.

I would assume that laboratory techniques for analyzing tumors in 1982 were less sophisticated than they are today. What would they not have known then that they regularly test for today?

I don’t have to avoid wetting the radiated area, on the contrary, I’m supposed to smother it in creams. How do radiation treatments differ in the last 22 years? What radiation treatment is it likely she received?

Have the components of Tomoxifen improved over the last 22 years or has it remained essentially the same?

Were lymph nodes automatically removed in the case of an encapsulated tumor? Is it possible that hers were not removed and that the cancer had already migrated to her lymph nodes?

According to a document published by the Breast Cancer Campaign called The History of Breast Cancer, the gene HER2/neu and its role in aggressive breast cancers had been discovered in the 1980s, although it’s not clear during which part of the decade and whether its discovery impacted in any way on my sister’s treatment.

Locating hospital records from 1982 is problematic. So far, I’ve learned that she was not hospitalized in St. Mary’s or St. George’s. I’m still waiting to hear from the Royal Marsden.

Jo was my senior by nine years. She didn’t take much notice of me when I was a child but we began to establish a rapport around about the time I was 12 and she was 21, or, more precisely, when I began to exhibit an interest in boys and make-up. She was fun, her wit made me laugh, she was tall and elegant and always seemed so confident. If any facet of her personality stands out, it was her sense of humor.

She chose not to die in a hospital. I arrived too late to find her alive at the home of her friend Sylvia, who, with incredible charity and compassion, had lent her home to Jo in her last days. Sylvia told me how she broke the news to Jo that her situation was terminal but she refused to accept it, saying she would go kicking and screaming. When Sylvia suggested that Jo call her place of work, she declined, saying, What if they take away my car and then they find a cure!

I often think how Jo would have enjoyed the world of advanced communications we live in today, how she would have been amongst the first to take advantage of the internet. She was an artist, though she claimed she wasn’t a very good one because our parents tried to force her, a left-hander, to use her right hand. Instead of art, she built a career in public relations and at the time of her death was doing PR for a firm producing 5.5 in floppy disks. She never had children of her own but was a perfect aunt to my three kids and my brother Tony’s son, Jonathan.

Jo’s death left me shocked. It dispelled any notion I might have had that death didn’t exist, at least, not in my family. And inevitably, the reality of her death brought into question my own mortality. For years, her lifestyle was the talisman I conjured to rationalize why I would not suffer her fate. She smoked, she’d never given birth, she ate mainly unhealthy restaurant or pre-packaged meals, she’d been on birth control pills for over 15 years. I’d given up smoking, I’d had three children, I ate healthy home-cooked meals and I used an IUD.

How smug I was! Today, in order to avoid smugness, I fall foul of the other side of the coin which is fear of meeting the same fate.

About nine months before she died, Jo and I had an argument as a result of some miscommunication. I remember writing a long letter to her explaining exactly why she was wrong and I was right and then I threw it away. But I was surprised, and not a little distressed, that for the first time, Jo didn’t send David a birthday card. At the time, I thought it was because she was still angry with me. Now I realize that it was more likely an oversight and that it was not in her nature to be spiteful to a child because of differences with his mother. When I returned home to Israel after her funeral, I found an anniversary card from her in which she wrote that I should expect a letter from her soon. Of course, there never was a letter from her ever again.