What I already know

There are certain things we know consciously, and a whole lot more we know. The two can even conflict with one another at times -

I know the tumour I had typically comes back in five to twelve years, and that I am never technically healed from cancer, living in an unknown state of remission.

However, I also know that odds can be defied, that the power of the human spirit can conquer physical ailments and disease.

As I fell apart in front of him, James gently reminded me last night that I have recently been letting the burden of expecting to live a normal successful life weigh me down.

With all the love I have ever seen in a human’s eyes (it humbles me), he noted that I’ve been planning for a ‘regular’ career path. “Think about what you want to do in your life, and take action,” he said.

“If, in five years, the tumour comes back, do you want to have lived 100% of your life by that point, or just 5%? It’s not that I think it will, but you have to keep it in your mind as a possibility. You can’t just live in denial of it.”

It was my lover who has been the spark in reminding me what I already knew, but had forgotten. He reminded me that life is ephemeral; we never know how long we have, or which precious moments we may miss the joy of fully experiencing.

It’s an interesting dichotomy, choosing between believing I will conquer this thing and harnessing my confidence in the future to do so, or letting cancer be a reminder of the impermanence of life.

On one hand, the power of positive imagery is certainly something I know, albeit subconsciously a lot of the time. Mental projections of a long and happy future surely can’t be bad, right...?

That’s what I’ve thought, up until today. However I’ve noticed that because of this belief, I’ve been slipping into a thought pattern that is afraid, that plans and waits, that thinks getting a typical journalist’s newsroom job could be a ‘good starting place’ for a career.

The other option may not sound so positive, in fact, it may seem mildly depressing. However when I feel it - feel the affect it has on me - it feels exciting and healing.

If you only had five years, what would you do differently?

This question has been turning over in my mind today, thanks to the timely reminder I had last night.

I would love, give, write, forgive, and be grateful. I would take more risks. I wouldn’t work in a low-paying, high stress job - financially, I would work to build assets for James and I (and our family) rather than rely on an income. I would share what I have learned. I would live more in the present moment, because that is the only life I have left.  

Interestingly, I picked up an old diary of mine this morning as I woke with the light streaming in. In it was written a New Year’s resolution from a couple of years ago -

To love unboundedly

Live consciously

Breathe slowly

Feel passionately

Know deeply

Listen wholeheartedly

Move freely

Speak sincerely

Laugh wholly

Grow constantly

…this I had forgotten. It’s so easy to forget.

It’s time to remember the fragility of time, the value of each moment, and forget fear.  

The year that was

I saw my brain today. It gave me a fright, and left me feeling a bit shaken.

There it was - sitting on the screen of Dr Hamilton’s computer for my follow-up appointment. And the star of the images... that big, glowing white ball.  

I hate that thing.

It is one year exactly since I called my mum telling her I had a headache and my eyesight was a bit blurry. November 18. It’s about time I write something.

Survivors should be happy, right? Celebrating every single breath. And survivors should be strong, Fearless.

These feelings weigh on me when I realize I’m often afraid, a little cynical (am trying not to be!) and get frustrated about not knowing what I’m doing with my life.

For after all, I was reminded today that anaplastic oligondendroglioma’s typically come back within 5 to 13 years.

I just don’t want to know this.

I came home today and sat down. To be honest, I felt a bit bewildered. I walked like a zombie to the kitchen (okay it’s only two metres away from the ‘lounge’) and had a few big bowls of cereal in lieu of the healthy, cancer-kicking dinner I had planned in my mind. 

Now my head pounds. Yes, it had sugar in it, which I haven’t had in almost a year. It gives me an awful headache now. It may well be all in my mind (pun not intended), but can feel the pain emanating from my right frontal lobe.

Now I’m wondering what the issue really is. Is my life not wonderful, and so privileged? Yes, I know it is. 

I think I feel guilty. I feel guilty for people admiring me, thinking I’ve dealt with this all so well, “oh, I don’t know how you’ve done it,” “you’re so positive, strong,” etcetera. 

"Misleading the public" is what they call it in journalism.

It’s been a big year.

(Writing that last sentence just brought tears to my eyes.)

Fear and creating a life here

I’ve jumped out of a plane again.

Much to the disappointment of my parents – who thought I had given up that reckless habit – I jumped as soon as I physically could.

In a skydive you have to trust the air, trust the gear, but most importantly, trust yourself. Your life is in your hands, and only yours.

I haven’t got to the point yet where I feel fearless on the ride up, but I was surprised by how natural it felt to throw myself out after twenty months bound to the ground.

Yet the bright lights of Wellington twinkle and I am afraid.

Up until now, I’ve been hiding in my hole up in Cluny lodge. It was safe, comfortable and nurturing. That existence understood that I was ‘sick’, and therefore less able to be adjectives such as “fun”, “adventurous” and the like.

There was always something. Some reason to be different, some reason to stay in my safe little hideaway. First it was recovery from brain surgery, then IVF, then radiation sapping my energy, then chemotherapy.

But now what?

I find myself living with my incredible husband in a little studio in a city called Wellington, the capital city of New Zealand - a city with a soul and a mind. Yet I find myself feeling alone, feeling old and worn. Yes, even introverts can feel alone.

Hang on a minute – old and worn?! Bethany, you’re twenty-one for God’s sake! Have you not you just learnt that life is precious, that it may expire at any time, that every moment is a gift to be grabbed and lived to the fullest and fanciest?

Let me begin the next chapter by deeply apologising to you if you have viewed me as a valiant heroine fearlessly kicking the ass out of cancer. I’m far from it.

I’ve been afraid, stumbling along the road of life and following its twists and turns because there are no other roads to take.

The journey is certainly not over. 

***

So, enough theorising. I went to Adrenalin Forest with James and his workmates over the weekend, and had fun. 

Yes, fun! Is it strange that someone my age is having to make goals to have fun?! Well, that's what I'm doing. With my lack of excuses and increases in energy, I am going to share my goals. It's a little scary making them public...but for the sake of holding myself accountable to fun, I'm trusting you with them.

- Learn to be an acrobat with Leonela
- Learn to Poledance (have already taken one class) - make a friend
- Take an art class and make a friend there
- Have dinner with at least one girlfriend every week
- Have a glass of wine with dinner every night
- Dance with James each day
- Read fiction for pure enjoyment - always have a book on the go. 

I survived!

I woke this morning before our alarm. I could feel energy pulsing through my veins. Is this what it’s like to feel normal again?

You may or may not have noticed that in my last post talking about chemo I had changed it all to past tense.

That’s right – I’M FINISHED!!!

Just this week Dr Hamilton, my oncologist, decided that three cycles of PCV is enough, and that any more chemo would mean the costs (long term and permanent side effects) would outweigh the potential benefits of continuing (more possible poisoning of potential cancer cells - all quite vague really).

***

At the beginning of chemo, when I heard there was a maximum of six cycles, I was pumped to do all six. “Give me all you’ve got,” I told Dr Hamilton.

Easy for someone to say when they are feeling fine, huh?

It should take a few months, they say, for me to return to the lower-end-of-average energy levels and platelet levels (bruising etc), and the tingling fingers and aching jaw should subside a little within six but will likely never come fully right. But as for dizziness, headaches and vomiting through the night – I said goodbye to them as I walked out of Dr Hamilton’s office the other day.

Not to mention, the pills and IV injections and all that poison…it’s all over. It really makes me realise what a privilege it is to be able to nourish my body and not poison it.

***

And no longer can I say “I have a brain tumour,” “I have cancer,” or even “I’m having treatment,” – what does that make me now? It feels a little strange to no longer be any of these, even though it’s all gone so fast. A survivor, perhaps? Although I have a suspicion I’ll need to reach a two-year or five-year mark before I can join that club.

Oh, what the heck. I’m a survivor. 

Identity and learning

(I wrote this a couple of weeks ago - sorry I only am just getting around to posting it!)

  ...

I think I’m having an identity crisis.

Alton, a wonderful mentor and professor at the University of Idaho, asked me before we left Moscow what my main lesson had been over the three years. I told him with sureness, “I have learned to love.”

Despite love being something I’ve since found that you can’t “know” once and for all and you can never fully learn it, it’s probably a fair statement considering the anti-love, anti-commitment girl that started at the university in January 2010.

I took a big exam this a while ago. I didn’t do very well. In fact, I left before anyone else, leaving multiple blank answers. It was something I thought I was “good at” – general knowledge, writing, basic grammar and numeracy, and last but not least, exams. I thought that stuff came naturally.

I thought journalism stuff comes naturally, that’s one of the main reasons I’m doing it.

In Idaho I studied Anthropology and International Studies. Of course, despite all that training, I didn’t come away telling Alton, “I learned to be an anthropologist.” No, I learned about love.

What on earth am I learning about now? I wonder, as I lie on our bed with a headache and barely energy to type.

Perhaps it is to learn. That’s what I’ve been wondering today anyway.  “Learning to learn” was the catch-phrase when I went to school. I should have taken that more seriously.

Now, faced with my own inadequacies, I see that I can’t, and don’t want to, just float on by doing things last minute and still getting “good grades” (quotation marks implying I don’t know what the worth of those really were in the end). I want to, and need to, truly learn things. Repeat. Visualise. Discuss. Articulate. Question. Repeat.

Or perhaps it is to say sorry. That’s something I’ve always struggled with, that humility thing. I may say it was the cancer that has “brought me to my knees,” but don’t believe it.

The cancer was only a trigger. It was a situation I found myself in that required me to rely on others, and that made me act out of character and have to apologise for it. I didn’t want it to be an excuse, ever.

I guess time will tell what I’m learning from this stage of life. I hope, and am sure; it’s not just journalism.