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I should have known.

I had been waiting for this news. I had given myself permission to accept it could happen. I dared to be believe that it would.

So it follows, naturally, that it wouldn’t.

I should have known.

I looked down at my hands and interlocked my fingers and squeezed them together. I had to keep it together. I was so bitterly disappointed. But I had my support team sitting with me, waiting to see my response, ready to react to my reaction.

So I smiled.

“Ok”.

And I let out a light laugh.

“Of course! Dammit.”

And I sank into my chair and listened to the details.

It had been six weeks since my surgery. Since my impossible became possible. Since my bowel and liver were lopped, seemingly removing all the active cancer from my body. Dreams can come true.

The six weeks had been both enormously rewarding and incredibly frustrating – probably in equal measure. My heart was full of love and my life was full of opportunity. But my body – my body was simply sapped and I was over it. My physical recovery was taking far longer than I anticipated, and my emotional and mental recovery was a struggle as a result.

Many surgeons throw around “six weeks” as a standard marker of recovery time from major surgery. Now, at the risk of ruffling feathers – I find this to be a somewhat arbitrary (read: lazy) timeframe, lacking relevant evidentiary support. And I have been told as much by my own medical team, a number of times (words to the effect of: “the numbers say six weeks, but that does not necessarily apply to someone of your age or fitness level or focus).

A tailored statement is empowering to me, the ultimate owner of my body. But they are exceptionally rare, based on my albeit anecdotal experience. “Six weeks” is a far more straightforward , risk-mitigating piece of advice. This is frustrating, given the majority of us would tend toward taking medical advice very seriously, and very exactly.

Statistics require expert interpretation and a personalised prescription: “Perhaps recovery is available to you sooner. Perhaps your body could benefit from movement today, not tomorrow”. Nuance that professional competence should deliver more often. It makes a difference.

I digress.

I had lost a massive amount of weight and muscle strength. An astonishing 7 kilos had dropped off me in the week that followed my surgery as my body’s resources were redirected to healing my wounds and regenerating my liver.

61 staples held my weeping abdomen together. Soon, this cut would transform into a scar. My scar. My trophy. It would boast of my fight for life without saying a word. But first, it was a freaking painful giant slice right down the centre of me. From my breast bone to my pubic bone – it couldn’t have been any longer.

I was in hospital for just under a week. I was forced out of my bed, my chair, my room, before I was altogether comfortable. But that is how recovery happens. I left the hospital for an afternoon to walk around a shopping mall – it was warm and dry and safe, offering scope to increase my step count while also offering plenty of public toilets.

By week two, I could blow dry my hair. At week two and two days, I had my first ‘pain-killer-free’ day.

At week three, I ventured to the local pool and introduced my scar to the public for the first time. I had stood in the bedroom for some time before we left, a bikini in one hand and one-piece swimsuit in the other. It was such a significant decision for me, deciding to show off my scar. I didn’t know whether it would even be noticed. It was. I dubbed the experience “scargazing” and relished every moment of showing off my trophy. I was so immensely proud.

At week four, I ditched my loose, floaty clothes for active-wear, finally drove the car (two kilometres to the supermarket) and cooked my first post-surgery meal.

During week 5, I was told by my oncologist that I could exercise again. We are not talking ‘trotting around in the park’ exercise, which I had been doing every day since I got home. Nope. I was told in no uncertain terms that it was time for weight-bearing movements in the gym. My oncologist prescribed exercise, just as he did the very first time I had met him. It was time to reactivate my immune system.

I wasn’t prepared to risk injury or delay my recovery, so I kicked off my new post-surgery workout regime with a qualified exercise physiologist. I got two sessions in before the six-week-post-surgery mark, which felt like an immense personal achievement. And this wasn’t really about beating a dictatorial and somewhat obsolete timeline. My satisfaction was much more about proving to myself that I could reach a post-surgery physical recovery milestone according to my own timeline. And importantly, before chemotherapy resumed – because, of course, as soon as it did, my physical performance was set to deteriorate once more.

And so goes the pattern of my cancer experience. I take a hit, I bounce, I build, I recover, and repeat.

For the most part, my emotional recovery from surgery kept step with my physical recovery: whether body or mind, I was on a general trend up but I took plenty of plunges down.

I have mourned the loss of so much over the last year, but the loss of my independence has continued to be a very difficult change for me to tolerate. At barely a year into the after of my before, I already feel like I have pinned down some of my more significant life lessons. Lesson #247: Nicole needs space to feel like herself. Post-surgery, my independence was stripped of me once again. I couldn’t lift or move the way I wanted to or needed to. And being unable to cook or clean or drive means being surrounded by invaluable help, all hours of the day. Help I couldn’t have lived without, but equally needed to have a break from, particularly before I returned to the chemotherapy roundabout.

Which brings me to December 11, 2017. Six weeks. Recovered, according to the stats. Christmas trees were up and my scan results were in and I was heading back to chemo.

I try to treat chemotherapy as a time-consuming enabler. And importantly, a necessity, rather than an evil. Kinda like brushing teeth or changing a nappy: sure, there are better things to be doing, but there are worse things. Generally, this outlook comes naturally to me. On occasion, I need to halt a catastrophising snowball of woe (I cannot do this nausea again; I want to be able to feel my feet in nice shoes; Why can’t my endless hours in the gym create a figure I am proud of; My hair looks like straw; Will I ever get my life back?). But I generally pull back from this kind of indulgent self-pity in the space of a few minutes, with a deep breath and a small dose of positive self-talk (Yes you can; The shoes look hot regardless; Your body is a project; Nothing a bit of dry shampoo can’t fix; Your life Is all yours).

Returning to my first round of chemo after my surgery was different. I felt triumphant. I was almost smug. As I walked into the hospital for my pre-treatment appointment with my oncologist, I smiled at every person I saw. Most smiled back. I wondered if they realised that I was beating stage IV cancer. Do we ever see what is right in front of us?

I see my oncologist before every chemotherapy infusion. We waited until the appointment time arrived and then waited for the additional mandatory block of time that we seem to wait for any specialist appointment. His door finally opened and he smiled and motioned us in and shook my hand and greeted my family and collected an extra chair and we all sat with an awkward smile, perched on the edge of our seats as we prepared for what was about to be said.

This was it.

This was the moment.

Time for the news: I was about to be told we had cut out my active cancer, meaning I was now free of demonstrable disease.

Except, of course, I wasn’t.

As he spoke and I tried to focus, I looked down at my legs and then over his shoulder to the streets below us. Trees, sun, wind, footpaths. Focus.

He told me that the small spot of cancer on my lung had turned back on during the three month period I had been off chemo. It was not any larger than it had been on my original 2017 scans, but it had clearly demonstrated that the chemotherapy hadn’t killed it, as we had hoped.

I felt a quiver in my lip and I bit into my cheek to stop it. My mind instantly went to the cruellest of conclusions: if the lung cancer wasn’t dead, the liver wasn’t either. This cancer wasn’t gone. This cancer was everywhere. This cancer was going to get me.

This news was such a severe blow to my outlook and my optimism. I had given myself permission to believe I could escape my dire prognosis, and with this result, I felt like a fool.

It took me at least a fortnight to straighten out my head and gain perspective on my news. To realise that actually, this was good news. My cancer hadn’t progressed. It was contained, and we knew that because we worked so hard to get a baseline before we commenced treatment. And now, we had an opportunity to take action against this stubborn piece of disease. The fact that the rest of my cancer had responded so well to treatment meant that I was an ideal candidate to have this piece carved out, with the full support of my growing medical team. I did my research and told my oncologist that I wanted it out – best practice told me it was the right thing to do. He agreed, and referred me to a cardiothoracic surgeon, and I went to meet him as soon as he was available. I explained my story, and he explained his thoughts and we agreed to do another six rounds of chemotherapy before we reassessed.

I walked away from that meeting with a renewed, somewhat recalibrated future focus. I wrapped up my six rounds of chemo, not to mention my Christmas, my New Year and my summer.

I have to acknowledge that I have been very quiet on my blog: not because I haven’t wanted to write, and not because I haven’t tried. This life-fighting business eats up a lot of time, as it turns out. My chemo has been a true enabler. I have worked, on my day job and my passion projects. I have relished my days with my boys and pushed myself in the gym and quietly counted down the weeks until my next set of scans. In late February 2018, we got those scan results back: the lung lesion was once again asleep. The chemo had done its job and I had done mine. And now, dead or alive, that pesky piece of possible cancer is coming out.

News can be good and can be bad. Sometimes, it is controllable. Sometimes, it is not. I am always learning about how to take news – how to best process it and act on it. And oddly enough, good news has proven at times to be more difficult for me to unpack and understand. Standing boldly in the face of bad news, determined to fight, comes more naturally to me than accepting and celebrating that things are going just perfectly. There is an inherent vulnerability in being perfectly happy. A vulnerability I know all too well.

I am engaged in a battle for my life – which will last, quite fittingly, for my lifetime. There will continue to be news: it may be good, and it may be bad. But every breath is an advance on the last. Even if that breath has to transit through a left lung that is missing a sizable chunk of its lower lobe.

Today, I am free of demonstrable disease. And also today, we are taking that sneaky lung shadow out, just in case. And then, we commence remission: and the five year countdown to cure that is now within reach.

I should have known.

 

 

 

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