It looks like cancer, the doctor said.
It looks like cancer, or it is cancer?
In 2002 Harriet Alida Lye was diagnosed with a rare, indeed unique, form of natural killer cell leukaemia. At the time there were no known survivors of natural killer leukaemia, and in writing this memoir, Harriet shares her experiences not only of cancer (she is expressly not a "survivor" or a "fighter") but also the shock and joy of becoming pregnant, something her doctors told her would probably be impossible.
I couldn't let myself fall in love with my new baby before I knew it was safe
Harriet Alida Lye is a novelist, and the book has a poetic, haunting quality, familiar to readers who enjoyed The Honey Farm, her first novel. By combining her journal of the time with notes from her parents and current reflections on her pregnancy, the book combines sadness and desperation with joy and humour.
For me, the saddest moments were when describing the friends she made at SickKids Hospital in Toronto, Canada, most of whom died. There was Sofia, who she shared digital makeovers with, who had osteosarcoma, and whose funeral was in the local mosque, with all the mourners sat on the floor. There was Owen, a rare teenager (like Harriet) in SickKids, whose tumour couldn't be found despite constant tests, and whose face was always blurred in her memories.
Despite the topic, there is both warmth and laugh out loud humour. Visiting the miserable, cold isolation of the bone marrow transplant ward, where Harriet expects to soon stay, her father David comments: "Well, this is good to see isn't it", with the misplaced optimism of an Alan Bennett character in Talking Heads. Five days of chemo meant staying in the "noisy and chaotic" Group Room, which "almost made me wish for an infection", as that would mean banishment to the quieter private room. A moment of great tragicomedy comes in a frantic call to a cancer care line, following a later diagnosis of pre-cancer of the cervix. The nightmare of cancer returning. But the only care line Harriet can find is in Ireland, whilst the Canadian author is living in France. "Are you Irish?" No. "Do you live in Ireland?" No. "Well... here's what I can tell you..."
In a paper in Cancer Genetics and Cytogenetics published in 2005, the doctors from SickKids described a catastrophic translocation of chromosomes in Harriet's myeloid cells. The long arm of chromosome 12 had jumped to the short arm of chromosome 19. A section of the long arm was also missing from chromosome 13. The tumour cells were myeloid in origin, but were also positive for CD4 and CD56, markers of monocytes and natural killer cells, and even more unusually, for CD33, a B cell marker. It was these monocyte / NK / B cells that were killing her. Before Harriet, there were no known survivors, and a Google search suggested that this was still the case, despite her apparent existence.
I need people to know that I exist
I have a personal interest, as Harriet and I are cousins, just a few years apart, and although we have never lived in the same country, we stay in touch over Twitter, Instagram and email. We met in Paris and London whilst Harriet lived in France, and at the time Harriet became an author, I became a scientist, before moving into publishing. Our careers now connect, as I advise on patient and public involvement and engagement (PPIE) for a UK health data institute. Natural Killer contains a wealth of anecdotes on how not to talk to a patient and is a must-read book for anyone working in PPIE. The doctor who says illness is a punishment for crimes committed in a previous life; the parent who says that Harriet must feel more grateful for life now that she is at risk of losing it. Too few researchers have this depth of information about real world experiences of cancer, especially in children.
But for me, ultimately, this is a story of birth, of joy, and of a family that created new life, despite everything.