A Road Less Travelled

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This was not the life I had imagined I would be leading.

When I imagined myself as an ‘adult’, it was an image with a husband, a home and probably some children. I’d have had a well-paid and rewarding career, although the details of said career had yet to be ironed out. I knew I could just have my fun in my mid to late 20’s. Everyone else I knew was.

I only had 6 months of this adulthood.

After two years in Brisbane I had gotten fed up with the mindless office jobs and started to think of my future. After researching study options, I found a counselling degree that I could do in Wellington.

Graduation.

Graduation.

This is it. I knew I had found my calling.

Fast forward three years, I found myself employed in my dream job that I’d moved to Masterton for. I’d just graduated with a degree, I was so proud of my achievement. I was an adult. I had just turned 30.

Dirty thirties! They’d all tell me. Better than your twenties. What happened next hit me like a tonne of bricks. It all came spectacularly crashing down around me.

“Hi, have a seat. It’s not good news. Its Leukaemia”. (On call Doctor)

Four years later, I still remember the events of that day, diagnosis day or D Day as we like to call it. Like a movie stuck on repeat, I vividly relive sections of that day continually.

The day everything changed, the day the earth shook violently beneath my feet and knocked me flying. I was left frantically scrambling to regain my balance.

What the f*** is happening?

“Mum, am I gonna die?”

Those first 5 weeks in hospital after D Day I didn’t think I’d ever stop crying. Terror would pool in my eyes and cascade down my face all day every day. The nurses began to know me as the “anxious one”.

What led me to the Dr’s office that day? Most people are curious how I knew. The first symptom was my gums. They began bleeding, and the blood had a putrid smell. My gums stung and hurt and throbbed all at once. They were swollen, and in some areas the swelling covered most of my teeth. Chewing became too painful. Then came the sweating. I had swollen glands in my throat accompanied with a pain I hadn’t experienced before. I began taking two hour naps once I was home from work, and woke with raging fevers. The fatigue was indescribable. I had two trips to the dentist, and two visits to the GP over the month leading up to D Day and countless sick days. Had my new GP not agreed to do bloodwork, begrudgingly, I could have had a very different outcome. He even rang me the following week to apologise for his misdiagnosis. He had been steadfast in his semi-retired belief I was suffering from stress, not acute myeloid leukaemia.

What followed was a whirlwind of agonising multi-chemotherapy high dose rounds of ‘treatment’ and more time in hospital than I cared to count.

I was powerless over every aspect of my life. Everything was in complete disarray. Most people have an abstract knowledge of their mortality, idly expecting to reach an old age.  Sure, no-one lives forever, but it’s not something people are usually consciously aware of until they are much older. That bubble burst on D Day, and facing death, avoiding death, and trying not to die came to the fore. I was no longer bullet proof, no longer able to go about my days with the comfort of expecting to live a long and healthy life. Death was everywhere and it coloured my soul black for quite some time.

Another thing people want to know is, “so the cancer’s gone? Great what are you doing with your life NOW?”. You know, because, everything happens for a reason. Right?

It took me 6 months to claw my way back to some semblance of a life, although I no longer felt that I belonged with all the happy humans. It was like I was stuck in some parallel universe looking in on people’s lives pressing on with a frustrating normality to them, while I felt left behind. While my days were spent in hospital rooms, it seemed everyone else was preoccupied with work, their relationships, celebrations, and, everything I was no longer a part of.

I spent the 18 months between treatment finishing and my second diagnosis waiting for the axe to fall. And fell it did: I relapsed. Did I will it back? I know I have thought that numerous times, because I didn’t have the right ‘think positive’ attitude that myself and everyone else thought I should have had. Bitterness, depression, and anxiety about my cancer returning clouded my entire being.

In a weird way, there was a part of me that felt relief at the cancer returning. Like the other shoe had dropped. I could stop dreading it. The fear of something occurring is often worse than the actuality of that something occurring. I felt it in me weeks before it was re-diagnosed, snaking its way back into my bone marrow. I felt it in my spiked anxiety as I turned to wine in the evenings, and lorazepam during the days. I could see it in what I called my sweat attacks, feel it leaden every step.

Here we go again.

I’d always said I could never go through with a bone marrow transplant if it came back. Well as it turns out, I did. Only just. My brother’s words ring in my ear that day we were all crowded in my haematologists office discussing the next steps. “Well do you want to die?”.

Not really, no. I’m only 32. I just don’t think I can do this. Again.

Somehow, with a few hiccups along the way, I made it out the other side. The best part of 2015 spent in that damn place again. I emerged with a lot more scars, mentally and physically. But surviving had nothing to do with a positive attitude, or being brave and strong. It is a lottery.

So, back to what am I doing now? That is a very complicated question.

Some days I wonder how I did it, other days it’s a struggle to get up in the mornings. Most days I wonder what the point of it all is.

I don’t have time for it to swallow me. It wants to, and Jesus does it try. It would be so easy to let it engulf me, wrapping me in chains to the couch with my eyes firmly glued to the TV, empty junk food wrappers littering the floor around me. I just need to press on as it’s a hard road back from there too.

But I miss the old me, my old life. I miss what I felt like, and the direction I had been going in. I look through old pictures and see someone unrecognisable. Sometimes I feel like I’m still on pause, while everyone’s kids get older and jobs progress and more destinations are ticked off the travel list. My lists consist of hospital appointments and blood tests, and my transplant birthday. However, with each day approaching 29 July, my stem cell birthday, the chance of relapse lessens.

I know what people are wanting me to say when I’m asked, “So what now?”. They don’t want to hear about my side effects, post-traumatic stress, fear of recurrence and grief. They want to hear that I’m back working, and it’s been put firmly behind me.

Onwards and upwards/can’t dwell on the negative/there are far worse off people than you/chin up

I’m not back working full time, but I am working. Not in my “dream” job though, as after the second leukaemia the company had little choice but to medically retire me.

This is not where I thought I’d be at 34, with the constant hospital appointments for weird and wonderful graft versus host disease complications. My Mum thinks I’m morbid when I say I don’t need a retirement fund; but the statistics on 5-year survival rates for bone marrow transplant recipients is low at 26%.

This is the life I could never have imagined I’d be living.