Leanne Pooley: The Big C

Leanne Pooley. Photo / Jason Dorday

As a documentary-maker, Leanne Pooley had seen what serious illnesses can do. Now she is the patient. Here, she tells what happened when she was diagnosed with cancer and what it has taught her.

As a documentary film-maker, I've spent a fair amount of time in hospitals. Cancer, heart attacks and various other illnesses have all played starring roles in my films over the years. So when a regular mammogram led to a breast cancer diagnosis, I experienced the surreal feeling that I was in one of my own films. I was documenting my journey, not participating in it. It took me a little while to accept this was actually happening and it was happening to me.

The cancer story has been told many times, in books, on television, at the movies. You know certain things just because you're a grown-up. Surgery is scary, chemo is horrible, life will never be the same.

Not surprisingly, though, I learned that much of what I thought I knew, for me at least, wasn't true.

"Breast cancer is one of the best cancers to get." Since my diagnosis I've heard this statement many times. Friends keen to reassure me that everything will be okay say it often. Sadly, I've learned it isn't true. There are many kinds of breast cancer and there is a big difference between stage one non-invasive ductal carcinoma and stage four metastatic breast cancer. There is no best, there is just you and your cancer.

The breast is best observation sometimes precedes encouraging stories like: "My aunt had breast cancer and she's fine now." Again, although always shared with good intentions, these stories don't help. Unless Aunty had the exact same kind of cancer as me, with the same number of lymph nodes involved, at the same age, with estrogen or progesterone, or Her2, or all, or none of the above, it isn't relevant. Like childbirth or the first time you have sex, cancer can be experienced only by the person who has it. Although to be frank, "my aunt had breast cancer and died" is definitely worse.

"The best plan is to lop it off." I received this advice several times (not from doctors) in the first week of my diagnosis and, at that stage, it seemed to make sense. Get rid of "it", don't worry about how you look, it doesn't matter, they will rebuild you.

You would think a woman would be protective of her breast and it would be the doctor who would have to encourage her to part with it. Counterintuitively, however, it is common for the opposite to be true.

I was scared, very emotional and I wanted the cancer gone. "Lop it off" seemed the obvious course of action. It was my surgeon who explained that I might not need a full mastectomy; that, in my circumstance, with my particular tumour, a lumpectomy might suffice. This procedure would get rid of the cancer in my breast and a shorter, less painful recovery period may mean other treatments (chemo/radiation) could begin sooner.

It was my decision but at that early stage the noise in my head was so loud it was hard for me to hear what was being said. Thankfully, my incredible husband was able to interpret what I was being told and help me see that I had options beyond lopping it off.

"You will discover who your friends are." I didn't find this to be true either. I knew who my friends were, what I didn't know was how much I'd need them. I thought I was a pretty strong, independent sort of person but I learned that cancer renders you weak and you have to accept that. It isn't easy to be less than who you think you are but you learn to let your friends and family fill the gap.

They listen, talk, cry, laugh, cook, clean, drive, walk, swim. They never make me feel like their efforts are an effort, indeed, they act as if letting them help is a favour I'm doing them.

"You just need to stay positive." This is one of those truisms that can haunt you. It is correct that a positive attitude helps. However, it can also be a burden. I am generally a "positive person" (whatever that means), but no one can be positive all the time and, when the dark thoughts penetrate my psyche I feel guilty, like I'm letting the side down or, worse, bringing about my own demise. The pressure to stay "up" can be confusing, I found myself consoling more than one friend about my illness. Meditation, yoga, exercise may help but I'm sure many of those who've succumbed to cancer did so despite their positive attitudes. It isn't a cure - at least not yet and the fact is, sometimes you just don't feel positive.

"It will all be over before you know it." Yeah, nah. I'm still in chemo and the road ahead looks long but that isn't the real hurdle. I'd assumed that at the end of my treatment or after a year, or after five years, there would be a test, an x-ray or a scan; after which someone would say, "Yup all clear, the cancer is gone and it won't come back." Unfortunately for me and for many cancer patients this isn't the case. In my experience the lack of said test is one of the trickiest things to get my head around. I will have check-ups, mammograms and my health will be monitored in the years to come, but there is no "over". My breast cancer could pop up somewhere else in my body. Technically it would still be breast cancer even though it might be in my liver or my lungs. Like a relative who has gone away, it might return, it'll still be the same relative (breast cancer) who'll just be sleeping in a different room.

There's a good chance this won't happen, and in my heart I feel optimistic. I also understand that no one, healthy or sick, knows what's around the corner. But once cancer has become part of your life it is a presence you have to learn to live with. This is a lesson I'm still taking, because it won't ever be entirely "over".

"You'll appreciate life more." This one is true. It's cliche, I know, but I do. I so appreciate the incredible medical people we have in this country. It really is humbling to have so much effort directed toward saving one life. I'm blown away by how amazing my friends are and I enjoy their company more than ever. I relish my job and treasure the camaraderie of the people I collaborate with as well as the creative outlet it provides (I go mad when I'm not making something). My family overseas holds me close despite the distance, teaching me that the word "family" transcends oceans.

And as for those at home, after 30 years together I thought I knew how compassionate and generous my husband could be, but I've learned there is a depth to love that goes beyond our understanding. I've learned that love can sustain you when nothing else seems to work. He does that, and pretty much everything else. Then there's my kids, I've learned so much about them. They astound me with their strength, their humour, and the way they engage with the world. I resist the urge to cling to them but try instead to soak up all that they are because that's the medicine that will help me heal.

I appreciate life more. I can't explain it; it would be silly to try. I just know I'm lucky. Not lucky I got cancer (that would be daft), I'm just lucky, that's all - and I believe I've learned what that means.

Leanne Pooley is one of New Zealand's most accomplished documentary film-makers, having directed more than 20 films. In 2011 she was made a New Zealand Arts Laureate for her work, which includes Beyond The Edge-3D, about Sir Edmund Hillary's Everest conquest, and Topp Twins: Untouchable Girls. The latter won 21 international awards.