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May 09, 2017

The change.


Last night, my beautiful baby boy feel asleep in my arms. In our dark bedroom, a little after midnight, I felt his head relax into the crook of my elbow, and saw his eyes rest shut. It was a moment of pure perfection.

This was the first time I have had a sleeping baby in my arms since my cancer diagnosis. Before cancer, I got to have sleeping Joshua in my arms every night. As I breastfed him, I would often sleep too. The two of us would cuddle together in the dark, he getting his milk and his comfort, me getting to nuzzle the top of his head and drink in the smell of his delicate baby skin.

We had been starting to ween Josh from breastfeeding earlier this year, mostly to give me some more sleep overnight. He was perfect in every way, and we knew that I needed the overnight rest more than he needed the overnight breastfeeds. We now know why I needed that sleep so badly. But we didn’t know then. So when I breastfed my gorgeous baby boy on Thursday morning, 16 March 2017, before I went off for my MRI of my liver, I had no idea it was going to be the last time.

I had planned to express for a few days after my MRI, because I would be filled with a chemical contrast that could have passed to the breastmilk. But as it turned out, this was only the start of the chemical contamination of my body that was to come. So breastfeeding was over. Just like that. Gone.

We don’t have a particularly cuddly baby. I hadn’t really realised this, until my daily cuddles were taken away. Joshua doesn’t see the value in close contact during a bottle feed – he prefers to recline independently on the couch or in his cot to take his milk. Each to their own! It is quite adorable to watch, actually. But that doesn’t change the fact that my precious cuddles with my baby man were taken from me, so suddenly, and so permanently.

Not everyone breastfeeds. I am not here to debate the value or importance or otherwise of breastfeeding. For me, breastfeeding was part of my definition as a mum. It was so important. For more than the cuddles. I was providing for our little man, giving him the best start I could possibly give him at life. It made me feel important, valuable, and central to his world. Meaning, amongst all of the change that was to occur for me and for us over the period of my diagnosis, the end of breastfeeding was particularly upsetting for me.

There is so much change that accompanies a cancer diagnosis. I don’t even know where to begin in trying to account for it. The physical changes. Over a period of six months I transitioned from curvy-new-mum, via too-skinny-tired-mum, to broad-shouldered, hair-thinning, round-bellied, flat-chested, heavily-fatigued mum.

My altered sense of self. As a new mum working part time, I was already struggling with the loss of my work identity. My time to coordinate my perfect work outfit (and fit into it). My headspace to ponder new client problems. My platinum frequent flier status. Now I have cancer patient as my status, and any opportunity to define myself outside of cancer can sometimes feel like a luxury.

Shifts in my thoughts of the future. My daydreams of our next holiday or our future family home or how many babies we would like to pop out have been derailed while I instead consider whether I will be there to walk Joshua to school.

But, here’s the thing you need to know about life.

(And I don’t know if I am qualified to make such a sweeping proclamation – but just watch me. Cancer seems to have induced new levels of self-assurance!).

So – life. It is full of change. So much change. Some of it is exhilarating. Some of it is glorious. A lot of is fairly mundane. A little is merciless. But change is everywhere. All over our lives.

Some people are more aware of change than others. For some of us, change washes through our lives and is met with little more than a shrug. Others are fiercely resistant of any adjustment to what is normal and comfortably familiar. And then there are those who go chasing change to add spice to their life.

I fall into the category of people who are generally able to self-assess as they encounter change, and modify their behaviour and attitude to face it, head on. I have always been a fairly firm believer in the idea that our response to change is more important than the change itself. It is the response that directs the experience of change.

I have thought about change quite a lot. Probably more than most, actually. My job title, for some years, was Change Manager. I helped people understand the quantum of change that was coming for them at work, as a result of a new management initiative or project or plan. I would give staff strategies to cope with their new normal. I would help them see the positives in progress. I would try to unpack their fears and angers and resistance, and channel what I learnt into improvements in the initiative or project or plan.

So how do you deal with a change like cancer? Is it even possible to change manage a terminal cancer diagnosis?

I am not sure if I am qualified to speak to that with any authority either. But I will try.

Whenever I think about dealing with change, I try to draw a box around the actual change. This helps to identify what we are dealing with – to pinpoint, if you like, exactly what is new and different about now versus then. It also helps to separate what has changed, what will change, and what may not change at all.

I now have cancer. I didn’t before. I now know I may die of cancer, at some stage, in some way (but not any time soon, that’s for fucking sure). I didn’t know that before. I now have to make adjustments to my life, including my work life and my home life, to make sure that I can get the treatment I need and that I and my family can get the support that we need. That is new too. My family have had to make massive changes to their lives in order to play the role I so rely on them to play. And that has been a huge adjustment for all of us.

And at this stage – that is the extent of the change, really. Because the physical changes are significant, but they are not necessarily permanent. And hey, I have put on weight and cut my hair short in the past. The emotional upheaval is colossal, and some days I feel like screaming and sobbing and running away. But my emotional response to this change or the next change will always be passionate. I am a deep feeler. I emote with the best of them and always will. And yes, my sense of self has been profoundly challenged. But I am capable of carving out my niche in any set of circumstances, and I will use my resolve to do so now.

I am not attempting to suggest the change that I am facing is insignificant or a walk in the park. But when I was pregnant, I thought that was the most significant thing I had faced, would ever face. When I was trying to shed my baby weight and visiting a physio every week to restore my pelvic floor, I thought that was the biggest challenge I would have to face.

People who experience a life changing event will talk about the notion of living two lives: the before, and the after. The before is blissfully ignorant of the complexity of the after. And sitting in the after, it is so easy to judge the simplicity and naivety of the before. But change is relative.

I am facing the most complex and devastating of changes. Or am I? So many people face life altering medical diagnoses every day. But not all of them have the support and love and family that I have surrounding me. Sitting here, I can think of far worse changes. I am alive now, with time to consider what is important and fill every day with wonderful life experiences. I have every person who I love near to me. I have the financial means to stop work and focus on my healing. I have the most remarkable support team, which includes my family, my employer, my husband’s employer, my medical team – every single person is so giving, so willing to help me and us do this.

Death and loss is devastating. But we are not there. We are at cancer.

The change is the change. It is my response to the change that directs my experience. The change I am facing is significant, but it will not define me. It will, however, ensure that every precious moment with Joshua is lived to its fullest. It will ensure that the most complex argument I have with Tim is whether we really need to watch another football game. It will ensure that on the odd occasion I decide to have a glass of wine, it will be champagne. Because yes, I will die one day. And so will everyone else.

Cancer changes everything. But also changes nothing. And that, I can manage.

Nic x