The Cancer Book Which Doesn’t Look Like A Sympathy Card, And Took Me Four Years To Write
By Jo Hilder on September 08, 2012
This week, I’ve published a book I’ve been trying to write for about four years - definitely cause for celebration. However, the actual book of Things Not To Say To Someone Who Has Cancer didn’t take anywhere near that time to write - it took closer to four weeks. How can it take someone four years to write and publish a book of less than two hundred pages?
There’s no problem with my expertise in the subject matter - I’ve experienced cancer first hand, as well as working for several years in cancer supportive care as an advocate and program facilitator for a leading Australian cancer charity. I’ve known for a long time I wanted to write a book and design a program to help those with a loved one diagnosed with cancer to navigate the experience with sensitivity and compassion. I’ve yet to meet anyone directly affected by cancer who didn’t have social and emotional issues stemming from it, and in my experience, the impacts of cancer always transcend the obvious physical ones. People would ask me, “My friend has just been diagnosed with cancer - what do I say?” and after we'd talked they’d say, “You really need to write a book - if a book existed, and what you just said was in it, I’d buy it.” I had the message - one that people needed to know - a book I knew I could write and people told me they wanted. I even knew what the cover would look like.
So why didn’t I just write the book?
At the time I was diagnosed in 2003 with Non-Hodgkins Lymphoma, my life was pretty darn great. Married to Ben for 14 years and with four children aged 3 to 15, we lived in a gorgeous seaside town in New South Wales, and I was managing my own successful retail business. Christians since childhood, our family attended our local Assemblies of God church where I was worship leader. We had a great life. There was just one problem. For some reason my body wanted out.
The cancer was quite advanced by the time it was diagnosed, seven months after I’d begun feeling unwell. I’d been repeatedly dismissed by my family doctor as an overworked, hysterical, middle-aged female. One day, I went to work and didn’t go home again. I almost collapsed in my shop, and Ben took me to hospital. Within the hour, an x-ray revealed the huge tumour in my chest. I was taken from that country hospital to a nearby town with a bigger hospital, then flown by air ambulance to Sydney. When I went home two weeks later, I commenced six months of treatment - six cycles of fortnightly chemotherapy, and two months of radiotherapy and a stem cell harvest. With no facilities for the latter two procedures in my region, I was obliged to travel and stay in Sydney without my family for November and December of 2003. Those eight weeks changed my life forever. I was exposed to the reality of cancer and how it really affects people, socially, emotionally and physically. My identity shifted as I went from being a wife, mother, businesswoman and solid Christian to brave, compliant patient, recipient of others kindness and charity, and dubiously lucky owner of a very interesting cancer.
I had questions, as anyone would. Would the treatment work? Would I survive? Would I see my children marry, have their own children? Was my husband coping? Would this particular chapter of my life be over soon, or was this the way things would be for the rest of my life, however long that might be? I expected these questions, not just to come, but to stay, and so they didn’t really disturb or surprise me. I understood only the passing of time could give me the answers I needed. Uncertainties were something I thought I’d have. It wasn’t the questions I struggled with when I had cancer.
It was the certainties.
“You don’t have cancer.”
Desperate for clues to my mystery illness, I’d asked my family doctor straight out if what I had could be some kind of cancer. He'd dismissed my concerns - but he was wrong. And I was angry. It took me a long time to rebuild my trust in the medical profession. And something else had to be rebuilt - my confidence about my instincts. I’d suspected I had something serious, and I’d been spot on the whole time. My experience of being ill and being right taught me that sometimes we know exactly when something isn't okay with us, or for us, but if someone authoritative tells us otherwise we may relinquish our trust in our own gut feelings. I promised myself when it came to my health, and maybe even to other things as well, I’d never do that again.
"You’ll be safe."
When I had cancer, it unsettled some other certainties in my life. People are drawn to faith in God for many reasons, and one of the reasons I became a Christian was to anchor myself. Life is hard. Life is rough. Life is unpredictable. But God is our rock, our fortress and our deliverer. God is everywhere, and He can do anything. Just believe and pray, and He will look out for you. He’ll take care of it all. Believe and pray, and you’ll be safe in the shadow of His wings.
I believed, and I prayed, and I worshipped and obeyed. But believing, praying, obedience, abiding, sheltering, and worshipping was not enough to protect me from the worst thing that could happen to me. I still got cancer. I learned the hard way that God, even though He is big and awesome, doesn’t always stop bad things from happening to us. I also learned along the way that when those bad things happen, He also doesn’t always make them go away even if we ask Him very nicely, and even if we put everything on the line and call it faith trying to get Him to take those bad things away. This was a very, very hard lesson to learn, and probably much harder for the souls whom I grew to know and love who lost their dear ones despite praying for God to heal them.
And just as I had with my doctor, when confronted with the dichotomy between what I’d been told was the truth about God and my lived reality, I became angry. But strangely, it wasn’t really God I was angry with. I perceived God had never left me the whole time I was sick. When I felt alone, I'd still sensed His closeness. But in my mind and soul, because of what I’d seen and the people I’d met, God became somehow bigger than cancer or even my possible death. My having cancer started to come into some perspective. To me, God had been a way to be shielded from the bad things in the world, a way to stay safe and protected, and all I had to do was believe and ask. But I’d been through something awful, and I’d survived. And just as I had with my doctor, I began to think perhaps I could trust myself a little more than I’d been led to believe. Something shifted in my soul.
Part of this shift had me spending less time micro-examining my own cancer experience and had me much more interested in the experiences of others. I began volunteering for a cancer charity, and ended up working in cancer supportive care. Listening and talking to other people about their cancer experiences made me feel absolutely alive. I was totally fascinated by how cancer affected people in various ways, socially, emotionally and psychologically. Much of my former faith-based thinking had been about reducing the bad things in life down into manageable packages and associating them with various spiritual or personal deficits which could be proclaimed away with affirmations or behavioural changes, but all these ways of thinking had become a luxury I just couldn’t afford. Besides, they had no practical application in the real world. People didn’t always get better when they prayed, and the people who didn’t pray sometimes got better. In the real world, and in the church, I had seen people confused by their own cancer experiences, and those of others, usually because of erroneous beliefs and expectations. I had seen cancer driving people apart, and I knew I could help. I wanted to be with these people who were hurt by cancer and their loved ones and friends, and somehow have cancer bring them all closer together instead of making them feel afraid and ashamed.
I started to think I needed to write a book.
Sick of fighting cancer
I wanted to write a book that would help people talk to each other about cancer without using the typical “battle” cliche’s, which I had seen did not help everyone. I wanted to write a book which talked about cancer as if it were something that happened to people every day, because I knew it did happen to people every day, and to which we did not need to ascribe a kind of culture of failure or brokenness. I wanted to write a book which didn't act as if cancer somehow changed people from what they were yesterday into “heroes” or “victims”, and which didn't make grand proclamations about its causes or cures. I did some research into the kinds of books people wrote about cancer. As a Christian, I felt I probably wanted to include some of my spiritual insights, so I explored the kinds of books Christian people were writing about cancer. I found they fell into two categories - the kind that talked about causes and cures, ephemeral and tangible, or the kind that talked about cancer as a kind of shortcoming or brokenness God needed to fix. Most Christian authors seemed to assume people with cancer wanted to look at books that resembled a two hundred page “With Deepest Sympathy” greeting card. I knew I didn't want to write a book like that. How could I be a Christian and write about cancer, if I didn't want to write a book like that?
I eventually stopped looking at books about cancer because I came to see I didn’t have to write a book like those books - probably about four years later than I ought to.
So this week, I published that book I’ve been wanting to write, the one which talks about cancer as if it’s something that happens to people everyday - not because I want to invalidate its true impact on the diagnosed, but because statistics* report cancer incidence at one in two, and that means in real life, cancer is actually neither rare nor special. My book doesn’t talk about cancer as a kind of personal failure, or provide ways to correct it by addressing certain shortcomings you may have, physical, spiritual, emotional or otherwise. My book doesn’t talk about diet plans, chemicals, toxins, alternative therapies or mention all the things you might have eaten or breathed in which can cause cancer. My book doesn’t look like a bereavement greeting card. Things Not To Say To Someone Who Has Cancer is about people. People who have cancer, and the people who love them. It’s about the way we talk about cancer, and to the people who have it. It’s about how to talk to your friend who has cancer without resorting to cliche’s or platitudes, because they stop all the conversations and have us changing the subject. It’s about what to say instead of those cliche’s like “What doesn’t kill you makes you stronger!”, because it’s no good telling someone not to do something without suggesting what they can do instead. My book tells the stories of many of the folks I’ve met along my journey - cancer survivors and their carers - so you can learn what it’s really like to have cancer, rather than relying the way people with cancer are portrayed on TV and in movies. My book suggests different ways to talk about cancer other than the usual “battle” metaphors, because it’s hard to fight and be positive and brave all the time.
My book won’t embed you in an abstract fantasy cancer world of fighting and heroes. I’ve instead tried to dispel some of the language and stereotypes, because I’ve seen that when someone is diagnosed with cancer, the way we talk about it changes the way we talk to people when they have it. In my book, I’ve decided to quit the romanticism, the mythology and the denial. Cancer happens. Cancer is here. Cancer is not special, and cancer is not a failure. Nobody wants to get cancer, but cancer is happening anyway. But it doesn’t have to drive us apart, or cause us anywhere near the terror it often does. When we’re afraid, the first thing to suffer is communication, and fear will often drive us from the source, even if we happen to love that source with all our heart. I’ve seen cancer ruin relationships and change people, even when the subject of the disease survives. My hope is that while ever cancer is here and happening - and let’s all hope that’s not too much longer - we can find ways to not let it kill us in a million different ways. I hope my book find its way to you and your loved ones, and helps in the ways I’ve imagined it might.