VANESSA, THE HAPPIEST DYING WOMAN IN BRITAIN
Since getting the worst possible news, she’s married the man of her dreams, written three novels — and, as you read this, she’s scuba-diving in the Cayman Islands!
NOVELIST Vanessa Lafaye, 54, was diagnosed with breast cancer in 2009, when she was Neurosciences Editor at Oxford University Press. In 2014, the cancer returned, and secondary tumours spread to her brain, liver and lung. In this deeply moving account, Vanessa, who lives in Marlborough with husband James and their pet cats, chronicles her determination to live life to the full while dying . . .
THIS REALLY CAN’T BE HAPPENING TO ME — NOT FOR A SECOND TIME May 2014
MY ANNUAL mammogram and I’m not worried. I’ve had four clear scans since treatment for a grade-three tumour in my breast in 2009 and I’ve done everything right. Tibetan monks have more risk factors than me.
I take tamoxifen, don’t drink or eat meat and do three Zumba fitness classes per week. But the scan reveals a shadow behind the original lumpectomy site. I become a puddle. This cannot be happening again. A biopsy reveals it’s another aggressive grade-three tumour, growing inside the old scar, which is why I couldn’t detect it. Sneaky bastard, cancer. Thirty-five out of every 100 women who have primary breast cancer go on to develop secondary cancer within ten years and of these about 30 per cent have the form which doesn’t respond to hormone therapy or the drug Herceptin.
It seems I am in that sad, miserable group. Recent survival data is not encouraging. My partner, James, is usually outwardly calm and stoic, but on this occasion my emotions threaten to overwhelm both of us.
BEFORE SURGERY, A SURPRISE PROPOSAL
June I AM to have a mastectomy. But before the operation, James proposes — we’ve been together 15 years — with a ring he fashions out of cooking foil. It’s beautiful, and fits perfectly. Happiness rushes back in like a tsunami.
Both keen scuba-divers, we want to be married near the sea, so we decide on a cruise ship wedding in front of family and friends. James’s proposal means that I am determined to be back on my feet in record time.
Then another bombshell: the surgeon recommends 12 weekly chemotherapy treatments. I plunge into abject despair. The one glimmer in the darkness comes from the oncologist, who agrees to a respite from chemo for the wedding.
Our rings arrive on the same day that I have my head shaved in anticipation of chemo causing my hair to fall out. I feel freakish, broken and old. But somehow James makes me feel feminine, loved, desired — every day.
September
CHEMO: For three days after each treatment, I don’t move from the sofa. Then I recover for three days. Then it’s time for another treatment. Sometimes it seems that this is my life now, for ever.
I go for a wig fitting. After some hilariously frustrating grappling, I master the art of making it sit on my head. Everyone raves about how gorgeous and natural it is. They are so kind. That’s what I find hardest to deal with.
OUR HAPPIEST DAY IN THE CARIBBEAN September 30. Latitude 21 deg 36.9 N Longitude 69 deg 58.1 W off the Turks & Caicos Islands
OUR WEDDING day! James and I enter a beautiful room at the top of our cruise ship, hand-inhand, as the Caribbean sparkles through the huge windows. Our family and friends turn towards us with expectant smiles.
The captain is waiting, grinning, in full dress uniform. This is, without doubt, the best day of my life.
Whatever comes next, good or bad, James and I will face it together.
I THINK I CAN FEEL MY BODY HEALING November
THE FINAL chemo treatment is over. I’m done, marinated in cancer-killing chemicals. When I surface from the worst of the effects, I rejoice in my good fortune; for my wonderful husband, for the skill of the medical team who saved me, for the astounding support of my family and friends.
The first fuzz appears on my scalp. Eyelashes signal a return. I imagine that I can feel the repairs happening inside my body, as millions of cells wake up and get to work, fixing themselves.
Scars are fading, as is the dread which has been my constant companion since that day in May. We pass the winter solstice, and head back towards the sun.
January 2015
MY FIRST novel is published! After eight years of trying I have finally produced something publishable! I am an author.
More than 100 friends gather for a party in our town hall, where we sip mint juleps and I dedicate the song The Way You Look Tonight to my husband, who looks abashed and proud.
ODD CHANGES, THEN SOME AWFUL NEWS June 2016
A GREY dot has appeared in my left visual field. ‘It’s a floater,’ says my optician, reassuring me that it’s innocuous.
July
THE dot turns brighter, shimmery. Increased pressure develops inside my skull, then the vision in my left eye is repeatedly swamped by bright, jagged patterns and flashing lights.
Panicked, I go to the ophthalmologist, who diagnoses: ‘Classic ocular migraine, very common, often comes on in middle-aged women.’
Early August
MORE disconcerting changes. If I sit down for more than ten minutes, I fall asleep. Everything is a huge effort.
Another visit to the ophthalmologist reveals I have no perception in half of my left eye and part of my right. I have a biology degree. I understand the implications with agonising clarity. The problem is in my brain.
An MRI scan reveals a 4cm brain tumour. I have what is known as ‘secondary’ or ‘metastatic’ breast cancer, or ‘Stage IV’. The word ‘secondary’ makes it sound somehow less worrisome. Exactly the opposite is true: the breast cancer has spread to my brain and this secondary cancer is a killer.
I feel dull despair, like a bystander to the slow destruction of all that is me. The future
that had been opening like a flower, has closed in my face like a fist.
August 11
I WAKE from five hours of surgery, alert and chatty. Pumped full of painkillers and steroids, I recognise the familiar elation which follows survival of major surgery. But it’s more than that. The pressure inside my head has gone.
I’M ON THE EDGE OF A PRECIPICE January 30, 2017
IT HITS me: All the treatment I’ve had will never eradicate the cancer, the best I can hope for is that the drugs will hold it back. But for how long? No one can say.
There are good days, when I feel capable of anything and can almost persuade myself it has all been a big mistake, and there are also bad days. But every day feels like I am perched on the edge of a precipice.
I can step away, and focus on all the wonderful things in my life: writing (I’m now on my third book); leading our local community choir; spending time with James; planning trips. But the edge is never far away.
Images of death, of James on his own, slip in between the walls of my carefully constructed mental fortress. Every headache, every twinge in my back brings them on.
August
I’VE just learned that the cancer has now taken up residence in my lung and liver. But I am still here. And I’m not ready to go; may never be ready.
Nevertheless, this latest news forces me to engage with my death as a real, tangible event, much sooner than I ever expected: big, scary, and way too close.
FRIENDS WHO SMOKE MAKE ME FURIOUS Early September
THERE are a lot of things to be angry about: the future that I’m being denied; the unfairness of having this horrific disease; the lack of research funding into metastatic or secondary breast cancer, because there are not enough of us dying to attract drug company interest.
Only 7 per cent of the total breast cancer research budget from all sources is spent on metastatic disease. Yet it kills 11,500 women in Britain each year.
I mean no disrespect to those who benefit from the pink ribbon campaign. But this explosion of pinkness during October that encompasses everything from frilly underwear to ice cream makes me want to puke.
Now, the month-long annual fundraising campaign has turned into a Disney version of cancer. Everything is ‘boobies’ this and ‘boobies’ that, almost like it’s fun.
If you want to really help, lobby your MP to get more funding for research. Give to Second Hope and Secondary1st, the only charities working solely on metastatic disease.
I’m also angry with people who smoke. I want to hook them up to a chemo drip that will fill them with poison and make their hair fall out, so they realise the risk they take with their health. This includes several close friends. (I love you, but seriously. Look at me...)
Grief rage is cathartic. Apparently it’s a real thing, the bastard child of overwhelming sadness and unexpressed anger. So many friends say I’m brave, but it’s not the case. The only time I’m not scared is when I’m singing or asleep.
TODAY, I RESOLVED TO FEEL GRATEFUL Late September
RAILING against my misfortune won’t change the outcome, so today I’ve resolved to feel grateful. I’m the luckiest unlucky person that I know.
Yes, I have a hideous disease, which is going to kill me. On the other side of my cosmic balance sheet, I am constantly buoyed by a vast network of friends, family, fellow writers and choir members, who celebrate and commiserate with me as required.
Chief among them is James. He makes me laugh my head off every day — and on my worst days that is no mean feat. With his love, his compassion, his stoicism and his unending desire to be with me, he keeps me alive.
When I ask him how he can bear all of this, he says simply: ‘It’s the loving.’ The thought of leaving him is total, utter agony.
A TRULY WONDERFUL ALASKAN HOLIDAY Early October
WE’RE on a wonderful holiday in Alaska, but on day five I get a fullon, ice-pick-in-the-eye, pleasewill-someone-cut-off-my-head-now migraine. Lying in James’s arms I think of him walking past my ashes in their pretty urn on our mantle and weep.
He says: ‘You will always be with me.’ But he now accepts there’s no way to stop this. It has taken him longer than me to accept it, but it’s clear he finally has. And this makes me even sadder.
Meanwhile, this new pain means it’s time for another round of the oral chemo drug capecitabine.
Last time I took it, it turned my insides into molten lava. I spent the whole night in the bathroom, hugging the toilet. Reader, we needed a new carpet.
Unsurprisingly I was keen to try anything else that might work. But I did and it didn’t and here we are.
If it works this time (which we will find out from a scan in November), then I will have to stay on it indefinitely until it eventually stops working. Because all chemo drugs eventually fail. Cancer is f ***** g smart, metastatic cancer especially so. It’s not one disease; it’s different in every organ it inhabits.
A drug which dispatches brain tumours may be ineffective for liver tumours. But I’ll take the poison again. I’m doing it because, without it, the tumour in my liver will have me within a few months. I’m doing it because I have stuff I want to do.
I want more time with the people I love. I want to sing and take the choir to perform in France. I want to celebrate James’s 50th birthday in style.
THE FUTURE IS A TRAIL OF JEWELS Mid-October
ACCORDING to the data, I am one year into a possible two to three year survival time.
Now, what? Do I wait to die? Soon-ish, to fit the data?
No, I intend to deny the situation and behave as if nothing is wrong. I’m going to focus on all the wonderful things in my future that I don’t want to miss. I’m going to visualise them as a trail of jewels (I like sparkly things) stretching ahead of me, each one a reason to keep going.
I want to finish my third novel. I want to go scuba-diving again.
LOSE MY SIGHT OR FACE EARLY DEMENTIA Late October
MY LATEST brain scan shows a new crop of small malignant growths which need urgent treatment. Bad result. Worse, my doctors want to give me whole brain radiation.
To me this is terrifying because it could cause cognitive decline. But without it I could go blind as one growth is so close to the optic nerves. What a choice I’m faced with: possible blindness or dementia.
A MINOR MIRACLE AND HOPE RETURNS October 18
SURGEONS have found a way to irradiate the growth without destroying my vision after all.
Through sheer bloody mindedness — I refused the whole brain radiation — I’ve forced the medical establishment to be cleverer than they thought possible. I feel that I can face the next stage of this drama now.
Hope is amazingly powerful. With hope, I can tolerate higher degrees of pain. And I have hope again.
For the moment, with symptoms under control, I feel well. By the time you read this I’ll be diving with James in sparkling blue water in the Cayman Islands. Maybe it’s for the last time, but that’s OK.
THE only charities focused solely on metastatic cancer are Second Hope and Secondary1st. Donate at secondhope.co.uk and secondary1st.org.uk. To continue following Vanessa’s story, go to vanessalafaye.wordpress.com/ living-while-dying Vanessa’s second novel, At First Light (Orion, £8.99), is out now.