September 13, 2018
The longing.
Cancer | SurvivalDo you remember? When everything you ever wanted in this world was exactly what you have right now?
I came across this statement last week. It rang in my head with such a haunting echo that I had to read it twice.
So hey, why not.
Do you remember? When everything you ever wanted in this world was exactly what you have right now?
Why yes. I do.
I remember. Wanting to live. Wanting to escape. I would have given anything. Certainly, I would have given plenty of organs. A third of my liver, at the very least.
It consumed me. This yearning for my life. This longing to be allowed to simply be me. The ease of being alive Nicole, rather than dead Nicole. That was all I ever wanted in this world. All I ever needed.
Please just let me live.
* * *
Now before I go any further, let’s acknowledge this: I am not there. Yet.
It may, however, be reasonable to hit pause on the terminal cancer patient definition, for the time being. At least if we use the same criteria that was used to assign that badge just 18 months ago.
If not, then what? If not dead, then alive? Not sick, then well? No. There is not an immediate and direct inverse to the terminal cancer patient definition. At least not for me. I do not have a promise of life. Not now. Not for sure. I have some very strong results. Some exceptional results. Some statistically-staggering results. But I don’t have a guarantee of recovery or a surety of survival.
But then, do we ever hold a guarantee of this life?
* * *
If someone had told me 18 months ago that I would encounter the miraculous treatment results that I have had, I would have kissed them. Danced in the waves and sung to stars. Such was my longing to escape the trauma of my mess. Of our cancer tragedy.
And now I am here. Weeks and months of meetings that delivered the most devastating of results have been comprehensively sideswiped by steadfastly outstanding outcomes. And while I regularly panic in the face of the fragility of it all, I rejoice in our success and marvel at the sheer possibility of moving back from our ledge.
But I am struck more than anything by the permanence of longing in my life. My yearning has not subsided. As it turns out – simply living will not do.
It is not enough.
I used to watch people who had recovered from a cancer diagnosis through a veil of envy and hope. Why wasn’t it me? Could it ever be me? I remember feeling fury when they complained. Of lasting nerve damage or permanent stoma bags or fatigue at their remission surveillance plan. Didn’t they know that countless people would give anything to have their problems? That their problems were not, actually, freaking problems at all?
But I have learnt so much about relativity. Of pain. Need. Despair. Trauma. And longing. The forces that we face are our own – while they might be broadly relevant to others, they cannot be measured, nor understood, in someone else’s space. When I have stage four cancer, I have a large problem. But if you have never had stage four cancer, it doesn’t mean your problems are less severe than mine. You simply have your own problems. Although, I do believe that we can learn to deal with our problems far more effectively when we share them with each other – with a view to understanding, rather than comparing and contrasting.
Now that I have some light in my dark cancer tunnel, I long for its annihilation. But the longing goes further than that. I long to escape the burden of chasing a full recovery. I wish I didn’t think about it as soon as I wake and as I try to sleep. I long to repair the fragility of my health. Remove the panic that ensues when I have an infection. The constant anxiety of monitoring the threat of a relapse.
Perhaps, in truth, I will never recover. A physical recovery is one thing. To not die of metastatic colorectal cancer this round, this time, according to the statistics. To instead, fight, win, beat it, live. But what about next year? What about the next round? I will eventually meet a recurrence – surely? And when I do, will that be the one that takes me? Do I dare to believe that I will possibly be able to beat the odds there, too?
Perhaps, in the interest of pursuing my cup to half full, let’s put aside cancer for a moment. Let’s assume I am alive and sit down with my mental anguish, instead. The lack of self-confidence. The destruction of my identity. The theft of my innocence and softness and quiet. The emotional turmoil of being a stranger in my own body. Of staring at myself in the mirror and recognising nothing. Of attempting to learn to love myself. Again. And again, with every slice and stitch.
I would have given anything for the end of cancer and the reinstatement of Nicole. But of course, there can never, ever, be such a thing. I am forever changed. Forever scarred. Fears of dying too young and being robbed of what is mine have been replaced, by fears of living incompletely and longing too much. How much time do I have? Am I using these days as I want and need to?
I feel things so much more deeply. See things, at times, too clearly. I am incapable of an untruth. The words in my head and my heart are so blunt. My internal voice can be a curt bitch. The days of white lies and kind reassurance are done. It is as if my near-death experience has stripped me of empathy for myself. It doesn’t mean that I am cruel to Nicole – but I am increasingly candid and at times, far too severe. Or am I?
I would have given anything to live in a messy, tattered, unfamiliar body. But of course, with a bright mind and full heart, I now long to look beautiful. To see the hours of work I invest in the gym return a leaner, stronger me. Bronzed skin. Thicker hair.
Isn’t it reasonable for me to want to take pride in my appearance? Or feel emotionally fulfilled. Or mentally stimulated? Or do I have to persist as perpetually grateful just to be alive. How long does that remain my operating status? And of course, as soon as I start down this road, I am enveloped by a tsunami of guilt. Painful internal accusations of being wholly selfish and entirely insensitive to everyone around me. The people who have been taken by cancer, who I have cherished and lost. The people who continue to fight this devastating disease. The people who have given so much to enable my survival. So much so, that the urge to delete this entire blog post is overwhelming.
But I persist because I am me and can only ever be me.
I am a puzzle that cannot be solved. The further I get, the more I unpack, the deeper I understand, the more I need to know. The more moments of quiet self-achievement I experience, the more I find myself questioning why I haven’t achieved anything close to meaningful lately. It is never enough. I am so quick to adjust my baseline expectations. Of course I can be engaged as a mum and raise a well-rounded little boy and run a family business and build a not-for-profit and fight cancer and spend meaningful time with my friends and family and invest in my beautiful, beautiful marriage and rebuild my body and protect my mind. Today. I mean, we are all busy, right?
I have never felt a deeper sense of satisfaction than I do right now. The clarity of my awareness for what I want and need beams in white radiant light, every day. I am so lucky and so loved and so eternally grateful. I know this. And I am learning that this sensation of yearning for more – as well as the occasional torment generated by the fear of failure – will never subside. Because, if I am honest: did I ever exist in peace and quiet? Was I ever inclined to feel satisfied by my plate? Or does cancer simply add another dimension to my experience of me?
I am in constant pursuit. My pursuit, of life and longing.