How do you carry on after a diagnosis of incurable cancer? YOU’s Books Editor Kate Figes writes with heart-wrenching honesty about finding the silver lining in her most difficult year ever.
When I was diagnosed with stage IV triple negative breast cancer in September 2016 I was determined this wouldn’t get me. I would outsmart cancer with every ounce of resilience and research into ways I could drive it back. Now, at the age of 62, after two close shaves in hospital where my distraught family sat around my bedside – first with suspected sepsis, then with a brain seizure – I have had to soften a little. This is such a powerful and aggressive disease, the treatments so debilitating physically and psychologically, that I have had to recognise that it could get me one day soon.
I don’t believe that any of us can ever accept the inevitability of our own death. Life is too bloody wonderful and many of us have the good fortune to die suddenly without having to think about it much. But there has been a surprising silver lining to this terrible year. By coming that much closer to dying I have learnt a little more about how to live well.
You have to keep going
Those living with an incurable illness all say the same thing. While you’re alive, you have to keep living. If you give in and take to your bed, waiting for a time when you might feel better, you could wait for ever. I feel compromised and weakened by the treatments, but if I let that stop me from doing the things I really want to do then what’s the point of carrying on with all the side-effects? So we make short-term plans, even if half of them have to be cancelled. I keep working as a freelance writer and editor. I keep being interested in the outside world, in what other people are doing, as a diversion from the relentlessness of daily juicing, supplement taking, exercise, yoga, repurposed drugs, hyperbaric oxygen therapy, massage, steaming in a sauna blanket and resting when I’m tired. All of this, I believe, is helping me to have enough quality of life to keep on living.
And what’s interesting about looking outside your own small private world of concern is how many others you notice, just as compromised by pain or immobility, who do the same thing. They are the ones who smile at you as they wheel themselves through the park, pleased to be out on a sunny day. They are the ones who hobble to the opera, determined to sit through five hours of Wagner for one last time. The queues for the men’s loos were longer at the opera house than the women’s because so many older men have prostate problems. I looked up at the auditorium from my posh seat in the stalls (courtesy of a kind friend) at a sea of grey hair and thought that at least half of these people probably have cancer and the other half are probably not feeling too good, but here they are.
The most resilient make the effort. They override the understandable easier option of doing nothing and staying at home. They make things happen; they don’t blame others for their situation, wait to feel better or for someone else to do something for them. That is how to grow older with dignity.
Focus on what you can do
I would go mad with grief if I thought of all the things I can’t do now – adventures in faraway lands because of the extreme infection risks with a severely compromised immune system from chemotherapy; spending time in public places; going out at night because I need a good 12 hours in bed to feel rested. There are so many things that so many people without illness cannot or will not ever do, that to feel sorry for myself when I have had such a rich life feels like an indulgence.
For me now there is the joy of matinées, and exhibitions first thing in the morning when few people are there. There is lunch with friends. There are lunchtime concerts and dancing after supper with my daughters, now aged 30 and 26, to Abba and Shania Twain, just like we used to do when they were little. There are Netflix, iPlayer and countless brilliant box sets to enjoy. There are walks in parks and on Hampstead Heath, trips to the sea and the beach hut we share with friends who look after us so well when we are staying with them and our energy is low.
I booked flights earlier this year to Amsterdam to see the Rembrandt exhibition and then had to cancel at the last minute because of yet another blood transfusion. My anaemia was so bad that I don’t think I could have managed the steps to the plane, let alone stand to look at so many wonderful pictures. I was disappointed. He is my favourite painter. But as I lay there in hospital with the blood dripping slowly into my port and felt the energy of life flow through my veins again, I found a three-part documentary on iPlayer about Rembrandt and the exhibition we had missed. We watched it when I got home.
It wasn’t the same experience, but it was in so many ways that much more satisfying because of the new knowledge I gained that I would never have discovered at the exhibition.
Love is everything
I have no doubt that it is the intense love and support of my family and close friends that has kept me alive. Without them I would have given up long ago. In fact, I would even say that it has been a surprising, hidden privilege to discover just how loved I am, something I never felt when I was equally vulnerable, as a child living through my parents’ acrimonious divorce. I was five years old when they separated, and their hostility towards each other lasted into their old age. Had I died suddenly I might never have discovered how much the love I have given to others over the years has somehow come back to me in spades. And that makes me feel complete and more at peace with the way I have given priority to loving others in the past.
For it is love that matters most. My daughters Eleanor and Grace visit often and we hug and cry a lot. I make a point of ensuring that we have meaningful conversations about their childhood and our lives together as a family so that they might remember more about how we were. I make sure I tell them as much as possible how much I love them, how being their mother has been the best 30 years of my life and that I couldn’t be more proud of them. I want their memories of this precious time together to resonate when I am gone.
And when we are alone, my husband Christoph and I have very peaceful times together. Often silent, for what is there to say after 32 years of happy togetherness? The intimacy of hugging, holding hands, the feel of just his fingers between mine is so powerful, so poignant that I never want those moments to end. I want to freeze them in time. We take our time getting up in the morning, gazing out of the bedroom window at the silver birch trees as we drink tea and pass a phone between us, playing a jocular but highly competitive game of Scrabble. The score is often close and we always laugh at the silliness of words we have never heard of but are somehow allowed to play by the computer.
Giving from the heart means that every conversation with people I love has to be meaningful, for it might be the last. No more chit-chat. I say honestly what I think about their future plans because I feel I now have not just the right but the responsibility. For I see things far more clearly. There simply isn’t the time to faff about pretending things could be otherwise.
Giving from the heart means being interested and courteous to the dozens of healthcare professionals who try to do their best for me. Patients seem to fall into two camps – those who blame and lash out and those who accept their fate with good grace. And that love even has to extend to friends who are foolish enough to utter that banal question, ‘How are you?’, those who moan about their own ailments or boast about their travel plans because, even though it can hurt and make me feel even more isolated, I know it stems from a nervousness about how to be around me. I have to be kinder to others than I would be otherwise, for only I know what it is like to be me, living with this disease. They cannot. And nor can I expect them to.
Seize the gift of each day
The temptation to rush about when you’re first diagnosed with advanced cancer is huge. I felt I had to fill each hour of every day with activity in case I should never have that day again. Now, three years on, I feel exactly the reverse. The slower I am the more I get out of that day. The more present I am the more I see the sheer wonder of the world.
The sun doesn’t just shine; it glistens like gold. The scent of a rose has never smelled so sweet, so I linger over it. There is time to stand beneath trees and listen to the wind rustling through the leaves, the birds singing, and marvel at the way every day is subtly different to the last as the seasons change, and we do too, coming closer to our own winter. I can look back over each day as I go to bed and think of dozens of small and precious moments that have made it particularly special.
Carpe diem – seize the day – couldn’t be more meaningful as I come closer to death. There is no point in regrets now, for the past cannot be rewritten and the future is even more uncertain than it is for those who are well. So don’t fool yourself that you have all the time in the world. You only really have this one precious day. Who knows what tomorrow will bring?
It’s not about being positive all the time
I have moments of deep sadness. Who wouldn’t? I grieve the fact that I might never hold my first grandchild or watch them grow up. I mourn the fact that I might never grow old with Christoph as we imagined we would. It hurts more than anything I have ever experienced to see the sadness in my daughters’ eyes. Watching them live through their first real heartbreak in love is hard enough, because there is nothing you can do to ease their pain. But this is even harder. For it is my demise they are mourning.
I reassure them with the fact that more and more people are living with advanced cancer on treatments, some for as long as ten years. I hope to be one of them. But we occupy different planets now. I am mourning my shortened life expectancy. They are coping with the uncertainty of not knowing how I am from day to day; how long I might live and how they will cope after I have gone. This is their landscape of grief to live through. I cannot ease this pain for them and nor should I.
However, I feel calmer about coming closer to dying, which perversely makes me feel stronger: by diving into that large and desperate pool of loss, fear, isolation and acute dependency that comes from my new fragility and by facing up to these emotions. It now takes me hours to bounce back from deep moments of sorrow when it used to take days, which in turn means I have more time to enjoy whatever time I have left.
I hope that with this new and growing acceptance of the inevitability of death, I am more able to be present for my family. I have also found a new, deep appreciation for the richness of the life I have lived. I can look back over decades of interesting experiences, the discovery involved in writing so many books on key life stages such as becoming a mother or the adolescent years. I can be proud of the fact that I have been a good and loyal friend. And with all these memories I know one thing for certain – I wouldn’t want to swap whatever future I have left with anybody, even someone who doesn’t or never will have cancer.
Kate’s latest book On Smaller Dogs and Larger Life Questions is published by Virago, £14.99. to order a copy for £11.99 with free p&p, go to mailshop.co.uk or call 01603 648155