My name is Caroline and I am what I would call normal: a mother, a wife, a sister, a friend. Home in the suburbs, working living, loving - all pretty normal. Until December 2008 when I was diagnosed with cancer and my new normal began.
When the diagnosis came, it was a surprise to some, but not to me. I’d long known there was something wrong. I cannot explain why but for months I’d had a niggling feeling, a worry that interrupted my thoughts, my moods, my sleep, my peace. Despite trips back and forth to my doubtful GP; despite tests that were clear and suggestions that what I really needed was a psychologist, I knew there was something there. The lump I discovered in my neck as I sat at a photo kiosk one day confirmed it, and the follow-up biopsy sealed the deal.
“Cancer” is a frightening word and even though I had lived with it for months, it was still as frightening as if it had come out of the blue. The word “oncologist” sent a chill through me and all I could think was:” I just want to see my children grow up”!
In the days that followed, I had test after test until the call came to tell me that the cancer lay in my lungs. I was consumed with dread. I had three tumors in my right lung they explained, and two in my left. It had spread into my bronchus and into the lymph nodes across the top of my shoulders and to both sides of my neck. It was treatable but it was inoperable.
I have never wept so much. That night, I tried to sleep but kept waking up gasping and whimpering. Each time I woke it was to find my hands covering my face. In the mornings that followed, I listened to the birds singing and I hated those birds. I woke up to the nightmare that I thought was to be my life.
When my husband Simon and I met with the pessimistic oncologist that my GP referred me to we knew we needed to find a new one. We met later that day with a specialist whose news was no better but whose outlook at least gave me a chance, small though it was, and I grabbed on to this with both hands. Just as the weeks leading up to this day had filled me with dread, I was filled anew with determination and the certain feeling that I needed to have faith in me. I had known there was something wrong, despite the doubts from all quarters. It was up to me.
We found a new oncologist who was on my side. He didn’t have any trial drugs or miracle cures but he had a plan to get me well. He didn’t just shrug his shoulders. He didn’t tell me to get my affairs in order. He was part of my team and I was very happy I had him. He had already made an appointment for me to start chemo the next day.
We all approach events in our lives differently because we are all unique. The way we respond to confrontation, anger, relationships, and yes, to cancer, is different for us all. For me, I knew I couldn’t let chemotherapy be the only course of action. I wanted to be doing things that I believed would help me in between those cycles. So, about a week after starting chemo, I began putting things in place that I wanted to incorporate into my treatment. Again, this was my own approach to cancer, not one that I had read about or was told to take, but one that I began to put together that felt right for me.
Within hours of being diagnosed I knew I had to meditate. Just as I knew that I had to find a good doctor, had to breathe, had to eat, I knew I had to meditate. I can’t explain it, I just knew. I had never meditated in my life so taking this on at this time was an enormous challenge but I persisted. Looking back, I don’t believe I could have gotten through my days without meditating. When I was completely overwhelmed, I pushed myself to put on some music and shut myself away. Instead of bashing myself against the boulder that was cancer, I was able to walk around it and tolerate it.
So much love came our way from family, community and friends and along with that came advice, suggestions and theories of varying credibility and suitability to my situation. I sorted the advice agonizing over which I should take before deciding to trust myself to choose only the things that sat well with me and that I believed could fit together like a puzzle to help me get better.
Having cancer was not a time to be concerned about offending friends or family. Some of the decisions I made went against advice. These decisions may not have had any bearing on what went on with the physical cancer cells but they sure did give me the feeling I was doing something good for myself and helped keep my head in a good place. I put together my own jigsaw puzzle to see me though the uncertainty that lay ahead.
My jigsaw consisted of my family and a very close circle of girlfriends, my oncologist, meditation, acupuncture, Chinese medicine, exercise, a good diet, naturopathy and kinesiology. Each piece was a tool and had its use and was there when I needed it. Each helped me know I was doing all I could to get well.
Many people urged me to “be positive”, or “think positively”. In the early days of having cancer, I thought being positive meant I had to jump out of bed, put a smile on my face and pretend that everything was going to be just fine. Yay me! May as well put on an apron, tie a big bow in my hair and make a roast dinner! Being positive was completely unrealistic to me when I had just been diagnosed with inoperable stage 3B lung cancer and was told I had less than a 5% chance of living. I put pressure on myself to be that positive person which made everything worse. I felt I was letting myself down. I was trying to rely on positive thinking to rearrange my cells and rearrange my thoughts so I would be okay. My point is, I wasn’t feeling okay! Positive thinking was a huge mountain and I tried to conquer it in one leap. Not possible. Not for me anyway.
One day, getting out of bed and having a shower was positive when all I wanted to do was curl up in a ball and cry. Putting my runners on and walking when I wanted to throw them in the bin was positive. Sitting in meditation after I had told the world to fuck off was positive. In the darkest of days, sometimes all I could manage was a shower or to get my children to school but I did it. Every action helped because I was being true to myself and not plastering the “I’m okay, and everything’s fine” mask on my face and pretending. I like the word determined rather than positive.
I was diagnosed in mid December. By mid February I had completed 3 cycles of chemotherapy: two weeks on and one week off. I continued embracing all that I had faith in. I was able to function better, sleep better, prepare dinner, shop and even laugh a little. I spent most of my time at home alone or with my family and close friends. I went walking either with Simon or on my own, meditated and frankly, sat around a lot. But I had come such a long way from where I was in December and had faith that I had surrounded myself with everything I felt was going to help.
The CT scan in late February knocked me for six. The chemotherapy hadn’t worked. The tumors had either stayed the same or gotten bigger and the lymph nodes in my neck had all grown. I buried my head in my hands in defeat. After everything I’d done! I began wondering if I was being ridiculous in thinking that all my practices were helping. Was I so naive to think I could be in that 4%? Then my oncologist went on to suggest what we could try next.
Among the alternatives he said he had a trial drug. I had sought a trial drug back in December when there wasn’t one but there was now. I clung to this news feeling it was the piece of my jigsaw that was missing. I continued my practices of meditation, exercise, acupuncture, clean eating, Chinese medicine, kinesiology and naturopathy with my oncologists blessing.
The next couple of months were hard emotionally but I became more practiced at reading the signs and when I was about to step into a chasm of fear I meditated or walked. I know people speak about “battling” cancer. Like a soldier in battle you feel besieged and terrified, wavering between despair and hope. Cancer was not a fight or a battle to me though.I took one step after another quietly and carefully. I let the fear rise and then took a breath on my path with clarity and faith in everything I was doing.
My next CT scan was set for April and following it I saw my oncologist, Michael. As I sat down he was flicking through a series of slides on his computer. He showed them to me. He kept pointing and talking but I didn’t quite understand or take in what he was saying. The crunch came when I said, “Michael, just so I can get this straight, when people ask me if I have lung cancer what do I say?” He said, “You say you did, but you don’t any more”.
I sat in silence. As I digested the news, I swallowed hard and I cried. I was completely overwhelmed by his words. All that afternoon, during that night and the few days following, I wasn’t jumping for joy. I was simply overwhelmed.
When I had been given the all clear many said that it was a miracle but that didn’t quite sit well with me. I absolutely believe in miracles but I never believed this was one miracle. Some said it was all because of the trial drug and whilst I knew it was an integral part of the jigsaw, it wasn’t the only piece. I had worked bloody hard! I was very humbled by what had been bestowed upon me; I needed to honour it with justice and respect. I understood that no one thing or puzzle piece was the miracle. It took a while but I began to understand that for me, it was a path of miracles.
That path began when I was born and continues until this day. Nothing is a coincidence and nothing is what it seems. Unknown to me at the time, I drew on events and the not so good experiences in my childhood to stand firmly in the most determined way to do what I needed to do faced as I was with the biggest challenge of my life.
I now volunteer at two hospitals doing meditation with cancer patients, and have meditation sessions in my home. I also volunteer as an Ambassador with the NSW Cancer Council. I keep my toolbox close and continue to delve into it when I need to and because it is a way of life.
Above all, I continue to be a wife, a mother, a sister and a friend and for that I am forever grateful.
With Faith Trust and Gratitude. Caroline xo
You can read more of Caroline's story in her book: Faith Trust Gratitude and Cancer.
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