Novelist Vanessa Lafaye gives a frank assessment of how incurable breast cancer has affected her life and her writing.
It is a sad fact that everyone knows someone with breast cancer. Thanks to fundraising and research campaigns, awareness of the disease is high. For most women, they will have one pretty miserable experience—involving surgery, chemotherapy, radiotherapy, hormone treatment—and then go on with their lives. This is what is known as ‘primary’ breast cancer, and it’s bad enough. I had it for the first time in 2009, and came out the other side debilitated but confident the treatment would render me disease-free.
Unfortunately, things didn’t turn out that way.
My career as a novelist has been marked by cancer since the start. When I was offered a contract for my debut novel, ‘Summertime’, the cancer recurred three months later, and I dealt with all the editorial issues and decisions while going through treatment. The cancer came back a third time in 2016, and as I was checking the copy-edits for my second book, ‘At First Light’, I learned that my terrible headaches and visual disturbance were caused by a brain tumour.
It was not brain cancer. This was breast cancer, in my brain, which also turned up in my spine and lymph system. This is what is known as ‘secondary’ or ‘metastatic’ breast cancer, or ‘Stage IV’. The word ‘secondary’ makes it sound somehow less worrisome, like it takes a back seat to ‘primary’ breast cancer. Exactly the opposite is true: secondary cancer is a killer. It destroys vital organs, and there are very few treatment options. It’s great news that cure rates for primary breast cancer have improved a lot; secondary breast cancer cannot be cured, it can only be managed.
Once I received the diagnosis, things happened very quickly. I had brain surgery, then powerful radiation, and then went on to my third chemotherapy drug to stop more from forming, and shrink the ones elsewhere. I understood that these measures could not eradicate the cancer—it was in my blood, travelling everywhere—but might succeed in holding it back.
For how long? No one could say.
So this is now my life: there are good days, when I feel capable of anything, and can almost persuade myself it has all been a big mistake. I can write, I can sing, I can exercise, and I have plenty of energy. Then there are bad days, when I am incapacitated by the side effects of the drugs, hobbling and house-bound. I am very lucky to have good days, as many women in my position have none.
Good or bad, every day feels like I am perched on the edge of a precipice. I can feel the edge with my toes. I can step away, and focus on all the wonderful things in my life: writing my third book, leading our local community choir, spending time with my husband and friends, planning trips. But the edge is never far away. I can be doing something really uplifting and enjoyable, and I’ll have a mental snapshot of my husband, alone and going on without me. Or I’ll be lying in the bath, thinking about nothing, and I’ll get a really detailed image of myself, emaciated, surrounded by machines and struggling to breathe. It can happen at any time. Images of death are always near to hand. They slip in between the walls of my carefully constructed mental fortress. Every headache, every twinge in my back brings them on.
Not being a religious person, I can take no comfort from peaceful visions of an afterlife. Death, for me, is the last curtain call. To say that I have accepted it is an exaggeration. I inch towards it, and then veer away again. It is still too huge to comprehend the end of all that is me.
I have been over the edge a few times, when shocking diagnoses have cut all my strings; when yet another drug has failed. I have spiralled down and down, so far down that I feared ever coming back up…so far down that I no longer wanted to come back up. Writing helps a lot, because it is so immersive and requires total concentration. I can block out the tests and the drugs and the fear and lose myself in my imaginary world, get caught up in another time, another place, with characters whose every thought and action I control.
Because cancer robs you of so many things—longevity, body parts, faith in the future, mobility. Control over your own life is a big loss. Just about every week involves medical appointments, where I turn to have stuff done to me. When I lead the community choir, with fifty expectant faces waiting for my instruction, that gives me some feeling of control again.
But I have always been a planner, always looking ahead to things I will enjoy, or things I need to do or watch out for. It’s now much more important to be in the now—something which has always challenged me, but I am improving. I know that some people claim cancer has enriched their lives, made them appreciate things more deeply. I wish them well, but mostly I wish I didn’t have it.
Women like me need your help to survive. Every year in the UK, 12,000 women die from secondary breast cancer, which is not enough to interest the big drug companies. Only 7% of funding is devoted to researching new treatments. Only 20% of women survive for more than five years after diagnosis.
Despite these grim statistics, I am very lucky, with an excellent medical team, wonderfully supportive husband and friends. The radiation and drugs seem to be working, my scan results and quality of life are good. The situation, for now, is stable, which is the best I can hope for. My oncologist says that women with SBC can go on for years and years, with proper management. Many do not, partly because of a dire lack of research funding.
All the pink ribbons in the world won’t fix this. But you can help.
In the meantime, I will keep stepping back from the edge.
‘At First Light’ is published by Orion 1 June.