A new normal.

Walking out of the treatment bubble

Despite the long list of ‘crappy’ inevitabilities from treatment this year, there is a level of comfort and protection created from the constant hospital visits, cancer-fighting drugs, specialist appointments, and general routine check-ups.

But then the day comes when you burst the treatment bubble. The last day of treatment. In anyone’s book, this would be a day to celebrate. And it is. But like any good party, there is a massive hangover waiting for you…

It’s one thing to manage and push through the staggering list of physical changes/impacts/side-effects of treatment. In some ways, these are the easy things to manage because most of them are, by nature, temporary, while undergoing treatment. Like chemo nausea and fatigue or radiation burns. Within all of it is the emergent emotional roller-coaster that serves up heavy doses of fear and anxiety from dealing with treatment, such as hair loss or infertility or waiting for pathology results. But again, these are largely temporary and eventually pass through you the closer you move towards acceptance.

Now, at the end of treatment, the physical side of ‘normal’ is beginning to return. My hair style is resembling that of Johnny Howard – the back and sides have filled in, but I’m sporting patchy bum-fluff/bald patches on top (always the last bit of hair to grow back!) instead of a desert wasteland of hair follicles. Even my eyebrows and eyelashes have started to emerge (no more stick-on eyebrows!).

But the longer-term emotional changes and impacts have apparently been sitting patiently on the sidelines in wait.  I felt the first sting when packing up my make-shift pharmacy (in my bathroom) – the bicarb soda/saline washes, dressings, anti-nausea tablets, etc were easily thrown in the bin. But then I came across the over-shoulder bag that I carried my surgical drains around in for three weeks. And then I looked at my chemo caps. And fake fringes. Should I throw those out too? What if I need them again? And the fear almost winded me – “What if it comes back?”.

It’s like throwing out the ‘big’ clothes you used to have hidden in your wardrobe because you don't want to give yourself permission to gain weight again, yet you find yourself hanging onto them just in case you indulge a bit too much over Xmas... But by holding onto things like surgery bags and chemo caps, am I passively giving into the thought that it could come back?

Cancer feels like it has left me with a port-wine-stain birthmark ... it is now permanently and visibly a part of me and my identity. And while I could wish it away or choose to cover it up, it has changed who I am, how I view myself, how I view others, and how I view my place in the world. I could not possibly have achieved such a dramatic change in perspective without the enormity that comes from facing one’s mortality.

I appreciate, however, that some instead choose to sprint to the finish line of treatment and slam the door in Mortality’s face. It comes from a deep, desperate desire to feel the comforts of ‘normal’, familiarity, routine, and everything B.C. (Before Cancer). I can only imagine the purge that must come in the form of a skip-bin-sized dumping of all physical and emotional traces that would suggest life was “back to normal”.

But I don’t want to go back. I don’t actually think I could, even if I wanted to. I have grieved many aspects of my life this year, and permanently laid them to rest. Some of that grief is wrapped up in relationships that have not withstood the emotional burdens that have come with supporting me in my need to fall and break so that I could rebuild and reclaim my life. There is also grief in the way I used to work – my professional identity. I am no longer willing or able to quantify my self-worth or my confidence on the basis of job titles, status and a long list of career achievements. They are now part of my story; my world view, but they no longer define me.

The largest part of the grief pie has been divided up for me and my personal identity. Never has this been more absolute than looking at an old photo of myself from last year - laughing, long hair, care-free, and cancer-free. I will never be ‘her’ again.

The laughing is returning, and in fact held my hand through the worst of times this year.

The long hair is at least five years away, but it’s just hair, and I’ve come to accept my reflection and embrace my bald head as a way of respecting that this entire year gave me the strength to be laid bare.

The care-free is now a mandatory part of my approach to walking slowly and smelling the roses/jasmine/frangipanis on the path to living a happy life. But it’s a qualified state of being, where I am both humbled by, and grateful for, the randomness of life, while also keeping Anxiety in my peripheral vision about whether the other shoe will ever drop …

Which brings me to the cancer-free part. That part will reside in a silent prayer every night and every day for the rest of my life. But it keeps me grounded in the super-human powers I didn't know I had. It keeps me grateful for the new strengths to relationships I didn't know were there. It keeps me connected to new friends and new experiences that I would have never had ‘but for’ cancer. And it keeps me forever appreciative of the infinite wonder that the human body (my body) represents, as each eyelash, eyebrow, hair follicle, and healthy cell regenerates and offers me renewed life.

I’m now standing in front of the blank canvas that is my life, being invited to paint my hopes and dreams A.C. (After Cancer). The paint palette is the same as B.C., but I can now see so many wonderful new ways to mix the colours.  

Post-traumatic treatment disorder.

Dealing with delayed grief

I had a follow-up appointment with my surgeon recently, and it felt like I was approaching this huge milestone in ‘the year that was’. It had been about 8 months since my surgeries, and I turned up, having nearly finished my cancer treatment regime, feeling on the verge of heroic. But sitting in the waiting room, I was confronted by six women, one after the other, standing at the counter booking in their pre-admission clinics and surgeries. I was like seeing myself six times over, walking in and out of a revolving door. Each of them wearing their own stage of shock on their faces; their bodies covered in the C-bomb [cancer] residue.

It was like I was experiencing it all fully for the first time again, on repeat. That day when I was standing at that same counter mechanically going through the motions of writing down my own pre-admission times and tests and follow up appointments. I don’t remember crying that day, although I’m sure I did. Many times. But I cried instead when I got to my car after leaving the doctor’s clinic. I grieved for each of those women, and I extended my heart to each of their families standing by their side, witnessing their loved one’s life forever changing before their eyes.

It’s the start of a long meandering grieving process, regardless of the diagnosis and prognosis. And by the end, it will become an acknowledgement that there are certain things that will never, and should never, be the same.

Like the way we overly complicate what happiness means.

Like the way we love, without the protections of our armour, that allows us to suffocate in the embrace of hope and joy.

Like the way we take for granted the smell of frangipani flowers. Or fresh coffee. Or babies. Or an open fire. Or rain.

Like the way we grant permission to change our choices, decisions, purpose, perspectives, that honours our self and others.

It sometimes feels like I’m carrying a new burden of hope and possibilities – that I’ve been gifted a second chance in Life’s Lottery. When I think about the beautiful souls of people that I’ve met this year that are instead planning their funerals rather than a New York holiday, I stop to catch my breath. It’s a funny expression, ‘catching one’s breath’, but it’s the most obvious reason to exercise gratitude. It’s almost like a perverse survivor’s guilt syndrome because I’m taking on a renewed responsibility to live my best life, and in doing so, am living for those that will never get the privilege.

My ultimate promise to myself and others is now to embrace change and uncertainty; to embrace the courage to be imperfect and vulnerable; and to embrace a new me.

Conquering change.

What it really meant to finish chemo

“I conquered this moment”. That’s the sign on the wall of the chemo clinic above a big brass bell to represent whatever people need it to represent. Most of the time, the ringing of the bell is about celebrating the last chemo session ... But for me on my last day recently, it felt more like an apology than a party. Like I should have been standing at a private wake rather than a public celebration. There was an applause and cheer from the nurses and even the patients. But I just went back to my hospital chair and cried quietly while I packed up my bag and walked away. 

I thought I'd feel elated, excited, proud. I thought I'd be breaking out the Hawaiian shirts and pina coladas and balloons. That the only heaviness I'd feel would be from the world boxing champ belt that I would have otherwise been wearing after going 12 rounds with chemo. But the heaviness was on my heart (and my backside from the weight I've put on in the last few months). 

I did feel proud that I had come through all of this (relatively) in one piece, but I realised it was much more than finishing chemo. 'This' was really about the last six months since diagnosis when my world decided to flip on its own axis.  I was also just unsurprised by it all... Did I ever give myself permission NOT to get through it? Was there ever any other choice I offered myself? Well, yes there was. I could have put on the pink boxing gloves and taken this all on as a fight. I could have pushed back in denial. I could have allowed myself to become victim to my anxiety about all the things that could go wrong. 

But I didn't. I surrendered to it all with the perspective of treatment, not toxins. I surrendered to the facts like I would lose my hair and that I would have some really crappy days. What I also did was trust. I trusted that there were medical experts who deal with people like me every single day.

I also trusted myself. I have come to realise the hard way that the strongest and most reliable friend I had in all of this was me. And when I say me, I really mean my mind. The messages I tell myself. The choices I make for myself. The decisions I commit to that are about looking after me. Sometimes those decisions and choices have been to shut out the noise of the "should" list and instead spend a morning in my linen cupboard throwing everything on the floor and creating a new colour-coordinated Tower of Towels. And sheets. And cushion covers. And crap I didn't even know was in there (And who can really make those damn fitted sheets have square edges!?). Sometimes it's not answering a phone call because I'm simply too tired/brain-fried/wired to try and string two words together. 

I couldn't tell you what I've done in the last six months. Sometimes it feels like its been one continuous day. People keep asking me though so I've started to think a bit more about a better way to answer it other than coordinating linen cupboards and binge watching house renovation TV shows. 

What I've done is lived. And the last six months is really just a snap shot in time of a life. A life that could belong to anyone. I've done whatever I've had to do to survive. And I don't mean from a life/death perspective (even though it's in the context of a life-threatening disease). I mean to survive each day by nurturing myself enough or asking for help enough to know I can get up the next day. 

I have grieved so many things - lost plans, lost opportunities, lost choices, lost identity, and lost confidence. 
I have persevered with love and compassion in the face of bitter brutal disappointment from people closest to me who were never supposed to know how to deliver such blows. 
I have suffered pain, fear, hurt, anxiety, sadness, grief, anger. 
I have surrendered, fallen over, laid down naked, and not gotten up. 

But I've also received with absolute clarity the gifts of trust. Of kindness. Forgiveness. Openness. Vulnerability. Hope. Love. Laughter. Courage. 

I have honoured myself, my life, and the choices I’ve made.

I have embraced all the unknowns and all the choices I still have in front of me.

I have heard quiet for the first time in a long time. 

I have given myself permission to shred the Should list(s) and replace them with Today I think I feel like...lists. 

And above all else I have evolved. I have changed. Pain had gifted me that.