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April 06, 2017

The diagnosis.


I have been beautifully sheltered from the burden of breaking my news. I can count on one hand the number of times I have had to say "I have cancer". My husband, Tim, and my family have taken all of my tough conversations away from me.

Social media also protected me, strangely. I was able to announce cancer my way by crafting a message in my words, with my sentiment, in my time. Set the tone for the discussion with a simple Instagram post. The response was so immediately overwhelming. Uplifting. Affirming – I had done the right thing.

I knew within minutes of my formal diagnosis that I wanted to share my story. More explicitly, to write. I have always wanted to write. Yearned. I have spent years intending to write, planning to use my head and my heart (and my journalism degree), just as soon as I had a story that was worth telling. Despite being told so many times by the people around me that I do in fact have a story, I still didn’t write. I felt a little silly, like an imposter. A pretend writer.

I have a story (and already had one, if I am honest). Oh, I have a story. But, funnily enough, it is not a story about cancer. Cancer is the milestone. The marker. The change point. But I want to write about everything around it. How it is making me feel and think and react and plan. How it has changed everything and nothing at all.

But I do need to start with the diagnosis. Because it is just inconceivable to me that I am sitting here with stage IV colon cancer, at age 32. There were no symptoms, only the faintest genetic history (that none of my doctors consider remotely relevant), and I have eaten a shite load of kale. For real. How did this actually happen?

I gave birth to Joshua John Cooper on 9 July 2016. He is perfect. He didn’t sleep. I didn’t care. Honestly. I wholeheartedly justified his three hourly overnight feeds to anyone who raised an eyebrow and cherished every second of them. He woke for a maximum of 10 minutes and I got a cuddle, then we both went back to sleep. But eventually, I had to agree with a few kindly intended observations – I was looking tired. I was feeling tired. So I took myself off to the GP.

I got my first set of blood tests done in January. My GP is a champion. I questioned my body and he listened. He, like me, could see the relevance of new mum status, and certainly its link to fatigue! But I was tired. The first set of blood tests were perfect. Plenty of extra opportunities to gloat about my healthiness were afforded (“oh, look at that result, it says the range is x, I am y, I am SO HEALTHY”).

So I kept on keeping on. Lying in bed, waiting to fall asleep one night in March, I was conscious of a dull ache in my lower abdomen. Real low. Almost like period pain. The next night, it was there again. I also had a vague ache in my right arm.

I went back to my GP. He listened with infinite patience as I updated the symptom list, adding that I had lost my appetite and with it, four kilos. Fast. Faster than forecast on the new mum trend line. He said that there was nothing that stood out, but that this was a list of symptoms that needed an answer. His emphasis. He decided we should start with another blood test and an abdominal ultrasound. It didn’t align with the pain, but it would rule out gall bladder issues, and at least that was a starting point. The next thing he said to me is so vivid in my memory, and has played back to me again and again: “Once we confirm there is nothing there, we will pass you on to someone smarter than me”. To be clear, this guy is one of the smartest people I have ever met. His decisions saved my life. But we will get back to that in another post.

The ultrasound. The radiologist was poking around my liver for a while (I know that now – I didn’t even know where my liver was three weeks ago). They found a lot of lesions in my liver. A lot. The report described them as FNH, focal nodular hyperplasia, and Dr Google told me they were common, particularly for younger females who had used birth control. And rather importantly, they were benign.

My GP took such care and precision to explain this result to me, and why he was still sending me to a gastroenterologist – one who he knew, one who was good. He then phoned to get me on the list immediately. At the time, this appointment was going to clutter my diary. Tim and I were going to be visiting a gynaecologist the same week, to try to work through the pelvic floor weakness and minor prolapse that had plagued me since delivering all four kilos of Joshua ‘au naturale’. That was our focus, that was the priority, that was where our team effort was going. Getting me feeling good about my postpartum body. But hey, what’s another specialist appointment!

The gastroenterologist ordered an MRI, because that’s how you get a really good look at livers. And liver tumours. So I put an entry into Tim’s diary: “FYI: 12:45pm – Nicole MRI Liver”. And off I went.

When I got the phone call, it was late afternoon. The sun was sinking. Tim’s mum had left our house half an hour earlier. I was home with Joshua. The MRI report was back. The gastroenterologist wanted to see me now. She would wait until I got there – but I should be there soon, with Tim, without Joshua. I could hear the strain rising in my voice as I called Tim to come home from work and Tim’s mum to come back for Joshua and my mum because she is my mum.

I was told that the tumours did not look benign – at all – on MRI. I had cancer. And that was not all. This degree of tumour in my liver was likely metastasised – secondary. Spread, from my colon, perhaps from my breasts. Scopes were the place to start, and I would be having a colonoscopy and gastroscopy on Saturday. My Mum and Dad were on a plane that night.

Saturday rolled around and sure enough, there it was. A significant tumour in my colon. Big enough to look nasty in a photo. Not big enough to obstruct my bowel or give me any kind of symptom. I was referred to a leading Melbourne oncologist – they would tell me what came next.

We booked our oncology appointment for Tuesday night and flew my brothers to Melbourne and spent a long weekend doing beautiful family things. Eating lunch at Pelikan Societe in Hastings (the Cuban sandwich people, DO IT). Tasting wine at Yabby Lake. Building pyramids with Joshua’s foam blocks late into the night (Joshua may or may not have been in bed for the majority of proceedings). We gave ourselves permission to just leave well alone and do as we always do.

The diagnosis was laid out in a haphazard way. The key points: I have colon cancer that has metastasised to my liver. The liver experts had already weighed in, confirming that the tumours were unresectable (meaning they could not be removed with surgery). The immediate course of action is chemotherapy. But before we did that, we needed to consider a liver biopsy, because the biopsy that was taken of my primary tumour in my colon was inconclusive (read: it doesn’t actually tell us that you have cancer). While I and my beautiful, beautiful support team tried to process all of this, we were then told of the unorthodox nature of a liver biopsy at this stage of play, and were encouraged to speak up if we had a preferred liver surgeon, despite still reeling from the news that surgery is not, and will likely never be, an option.

The chemotherapy seemed to be the thing that we needed to discuss at this juncture, so we tried to wrap our heads around that. But the swirl and spin and blur of this discussion was starting to engulf me. Based on this headspace, journalistic integrity suggests the only thing worth reporting here is this: averages are just averages, but the average life expectancy is two and a half years with treatment.

Our team came in for a group hug. My mum, Tim’s mum, Tim, me. We held each other. We cried. We shook. We were broken. We had nothing that made sense. We were lost. And then, just as quickly as we went under, we resurfaced. Emboldened. This wasn’t going to be the way we handled this. This reaction was real, it was warranted, but now we had had it, now it was over. Time to move forward.

Positivity. As soon as I had a cancer diagnosis, I also had people telling me positivity matters. That optimism matters. So that is what I am going to be bringing to my experience of cancer. On one of those first days, I remember saying to my mum “no one is going to tell me how my experience is going to play out. No one is in charge of this story but me”. I felt immediate control and this control gave me strength. Over the next few days, we were going to discover the difference between diagnosis and prognosis, and make some powerful decisions. That, too, is for another post.

But for now, I want to say this. My doctors believe my pain in my upper right arm is likely a referred pain from my enlarged liver pressing the diaphragm and other abdominal ‘stuff’ around it. But it could have been just as easily interpreted as a result of the knots in my neck. My weight loss and loss of appetite have been vaguely attributed as possibly, maybe, a cancer thing. But I have been congratulated countless times for how great I look nine months postpartum. Which, you know, I haven’t minded. My lower abdominal pain has ceased, and was on the other side of my body from my tumour. And I am still friggin’ tired!

There were no symptoms. There were no red flags. I did a stool test – there was nothing there either. Listen to your body. Trust your instincts. If your GP says something you don’t like, find another GP (I know a good guy…).

This story is going to be about so much more than cancer. But given cancer is one of the key characters, I thought it was important to get some of the characterisation sketched out early. This story is definitely going to be about my fight, and I am looking forward to sharing that detail soon.

Thank you for reading my musings. I implore you to leave questions if you have them, and comments. Good ones. ;)

Nic x