Friday, October 31, 2014

What I learned from my first year of cancer

A few months after I was diagnosed with ovarian cancer in October 2013, I published the beginnings of this article elsewhere. This is an updated version, looking back on the first year after diagnosis and treatment.

There’s nothing like staring a life challenging diagnosis in the eye to get clear on what matters, is there? I’ll let you into a secret; there have been no revelations. Everything I’ve learned has confirmed the work I’ve already done.

The joy of journaling on a regular basis means that I have my first year of this strange new world in writing, along with my thought's before diagnosis.

What I know for sure

Love and connection is the most important thing:
Family and friends matter. And they’ve been there in spades for me at such a humbling time. I’ve shed more tears of love than sadness.

Travel feeds my soul:
As much as I love working for myself, I've always loved travelling. The last few years have seen my passport getting a workout, journeying to Bali, Europe, Russia, UK, USA Thailand, and to walk the Grand Traverse in New Zealand. Relieving my holiday three months earlier Chiang Mai kept me calm as I waited to be wheeled into surgery. Planning my next overseas trip cheered me up on the tough days through treatment.

I’ve been banging on about the philosophy that I try to live by for the last 15 years. For me it’s largely about finding the balance between work and living, exploring conscious consumption, being an active part of the community I live in and trying to decrease my carbon footprint.

Connections and experience ultimately mean more to me than me than ‘stuff’ Having said that, I needed to do a huge declutter before moving to Sydney. What I really enjoyed giving a large chunk of my possessions away to friends before relocating. I still have more than enough. But I'd trade 'stuff' for more time with friends and further adventures, any day. 

I admit resilience is an overused word, especially in the context of cancer. However I see it as the "work" I've done on myself through my adult life, that's been vital to help me through traversing this uncertain episode. The Buddhist study I explored in my early years  in Melbourne gives me insight into sitting with impermanence. The good food and healthy lifestyle, helped my body deal with the physical assaults of conventional treatment. Meditation and mindfulness training keeps me sane, Following the wonderful Brene Brown’s wisdom provides a mantra there’s no shame in having cancer”. Talking to a skilled psychologist, keeps me real.

I’ve often danced with the darkness in the past and am no stranger to grief. I accept that the shadows have as much right as the light, in my life. That’s not to say I don’t feel fear, just I’m not afraid to sit with it. Invite it in and become friends with it. If I’d spent my life running from difficult emotions, I know confronting time would be even more challenging.

Work is not static, it evolves:
Over the last decade I’ve watched so many valued colleagues and mentors burn-out. Partly it’s the nature of doing such intense work but it’s also the increasing strains of running a small business. Sometimes being both an advocate of work/life balance and an early adopter of social media can be at odds with each other.

Before I got unexpectedly sick, I knew I had to make some changes. It was time to move to Sydney to be with NB as we entered our second decade of loving each other. I just didn't want to reinvent the wheel and build my business from scratch. So I begun investigating how I could work online, be location independent and still give my clients what they needed.

I'm now hitting the quarter of century in my profession. I love mentoring the new generation and going back to the grass roots of what I believe. I no longer have the ongoing agony of dealing with landlords or the tedium of physically managing a clinic. Life really is a breeze without those burdens.

Some of the shit that people don't tell you about cancer and being in treatment

You really do find out who your friends are:
NB excelled himself. He literally dropped what he was doing and drove through the night to be with me. For the next 6 months he did almost everything for me. Actually I've not vacuumed the house ever since! As humbling as it is to accept the full help of a partner, so many friends amazed me with their time, love and support; helping out, cooking great food, going for slow walks with me and having a chat. But a year on I have to say I still feel utterly hurt by those who for whatever reasons were too immobilised with their own issues, that they disappeared off the face of the earth. Loosing my ovaries is one thing, a couple of good friends - a totally different issue. 

I've had no significant income for this first year and a truckload of life expenses (fortunately due to Medicare my treatment has been almost free). Starting a new business, even on a shoestring has been costly. I also supported NB, when he took months off care of me. Without substantial savings, I don't know what I'd have done. I was too sick to apply for government assistance. Being self-employed requires a ream of paperwork, old tax returns and masses of other documentation. I just physically couldn't do it. So I went it alone. My advice for anyone who doesn't know what they can do for a self-employed or single friend going through cancer treatment is if you can't cook or clean - give them money, pay some bills, and when they're well enough - take them out to lunch.

Being part of a club I never signed up for:
I’ve learned a secret, it’s not just health professionals with cancer that believe they belong in the “cancer club”. It’s universal. But I’m in some illustrious company of some Australians who I admire who were diagnosed in the same year, including Anna Bligh and Phillip Adams.

“The woman told Bligh how early into her first chemo round she phoned a friend and told her how she felt she didn't belong there among her fellow chemo patients. "Honey," her friend had said flatly. "They don't belong there either."
"It was the best thing she could have said to me," Bligh says now. "It's true, none of us belonged there."The Australian

I felt emotionally bruised for the best (or rather worst) part of a year. My time in the world has had a tentative quality, even after the 'all clear for now' blood tests. Losing the illusion of immortality, while an amazing but humbling experience, infuses body, mind and spirit with utter vulnerability. Nothing will ever be the same.

Our healthcare system is better than most but it's still f*cked
I'm incredibly grateful to have gone through treatment in Australia but gratitude doesn't mean we don't need to improve it. Did you know 50% of women with ovarian cancer have multiple visits to their GP before they're correctly diagnosed, despite displaying cardinal symptoms of the disease? That time is almost always deadly. Why aren't we instituting further training for each of them that miss it the first, second or third time? In the past twenty years there has been no significant change in treatment or survival. Think of the advances in HIV, HCV and other cancers? A disease of women, predominantly older women, just isn't that important. Or so that's how we're made to feel.

Everything changes, everything stays the same
The little niggles in life that should seem so insignificant actually don't go away. You change. You understand fear. You sit with the loss of innocence around impermanence but life just goes on around you.

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