What now?

Haven’t we all played the ‘what if?’ game.  What if I won lotto?  What if I got a life-threatening illness?  What if I fell in love with a Prince?  Such fun, because of course we never think it is going to happen.

Never fallen in love with a Prince; never won lotto.  Have had/got a life threatening illness.  The past 4 months have passed in a blur of surgery, appointments, internet research, decisions.  Tears, laughter, fear, confidence.  Climbing mountains; wanting to hide all day in bed.  Rediscovering the joy of physical movement, of feeling strong and fit.  Discovering that when it was my turn, I went into ‘information and decision’ mode – methodical research, questioning, fighting for what I felt was right for me, and being proven right, so far.

Putting my life on hold and focussing on me and my health.  Yesterday was the last ‘event’ that I associate with the first stage, if that is the right term, of my new life.  Prior to diagnosis, several future events were in place.

Doing the Kepler Track, Fiordland, NZ.  Tick (not without a lot of effort, both physical and emotional, might I add, and I would not recommend it if you are having chemotherapy for what it is worth).

A weekend in the Coromadel with friends.  Tick.  Last weekend.  It rained like it was the tropics.  We dashed from the rented accommodation across the lawn and down the sand dune to swim in the fresh ocean water in pouring rain.  A childish undertaking that is nothing but joyful.  No lurking at the edge of the water pondering on how to get wet – straight in.  Shared meals and conversations, lovely food, exploring a part of NZ I have never seen before.  Even in the rain very lovely.  Lost my watch actually, only for it to be found again the next day.  My very expensive watch spent the night alone on a sand dune in the rain, but there it was, waiting for us the next morning, and working just fine.  Never wear your watch to the beach, never put it in the camera case for safe keeping.  Have bought a lotto ticket.

Bruce Springsteen, last night.  Tick.  Last seen live on his first ever NZ concert, 2003.  The day the USA invaded Iraq.  Best concert ever.  This time a wider range of songs, at least half I had never heard.  But he is the man.  My City of Ruins – dedicated to everything that falls apart and has to be rebuilt – to the losses that become harder to bear as we get older.  The man speaks to me.  Acoustic version of Thunder Road as his farewell song, alone on the stage with guitar and harmonica.. “have a little faith, there’s magic in the night, you ain’t a beauty but hey your alright”.  Thanks.  With friends – girls night out.  One of them never made it, or left early or something.  I adore her but cannot save her from her own disorganisation.  I could not in all conscience be one of the people allowing those who have not turned up early to secure a good spot to push in later on.  Women of a certain age will not allow men with four beers to push through, no matter how hard they insist they are just joining their friends.  Go back the way you came.

I thought, foolishly, that chemo would be the hard thing.  The real hard thing for me is deciding what happens now, both medically and the BIG Questions.

Medically, on one side, my instinct and my belief based on my understanding of the human body, that once cancer is removed it becomes essential to change the environment that allowed it to establish.  An environment that deals with the probably daily cell mutations without any hiccups.  I believe that my own immune system is the best, incredibly capable system to do just that, provided I feed it right, exercise and stay healthy, and sort out my state of mind.  My oncologist believes that the best way to do this is the feed me hormone treatment for 5 – 10 years that will make my life miserable.  How can a man even begin to understand the debilitation of hot flushes, insomnia, mood swings, aching bones?  Dismissed as tolerable side effects because it allows him to hide behind the ‘certainty’ that this will decrease the likelihood of dying of this cancer by 5%.  Only there is an 85% chance I don’t even need it.  And of course the osteoporosis that WILL happen, mitigated by yet more drugs.    The real tipping point in this conversation, which did not go well, was his concession, reluctantly, that meditation is now scientifically proven (the basis of his belief system) to be of benefit to cancer patients.  At that moment I realised we are not in the same reality.  I had to ask him about his life – after all my life is supposedly in his hands (not mine).  He is single – no partner, no children.  Dedicated to his work, perhaps, or, more likely, somewhere on the OCD spectrum and therefore has never been able to find someone who can live with him.  I am sure his mother is very proud, but me, I want a human, not a robot.  I foresee a change of oncologist.

Meanwhile, turns out mistletoe extract is used in Europe as part of standard chemo treatment.  Yes, a plant extract.  Scientifically proven to reduce side effects.  And probably more, I will find out.  I never thought I would be self-injecting plant extract but turns out to be really easy, and painless.  I am heading that way – it is an immune system booster, with no side effects.  Next in my arsenal will be, for want of a better description, cabbage pills.  Well known (probably proven) that the cruciferous vegetables are strong antioxidants and therefore anti-cancer.  You can buy a condensed form over the counter.  No side effects.  Currently in clinical trials.  I told him that in 5 years time I will be sitting there and he will be apologising for giving me poison when I could have had cabbage.  I have the prescription for the hormone treatment, but at this point in time, have no intention of filling it.  By his own admission, 30% of his patients do not continue with it, presumably because the side effects are worse than the risk of recurrence of cancer.  WORSE.  Think about that.  According to some studies, 50% of women stop taking them.  I wonder how that affects the statistics –  the same probabilities that give oncologists so much power of persuasion.

I talked to a friend this week who has followed her Oncologist’s orders to the letter.  She is taking the pills.  She is also on antidepressants, and in fear of her life.  8 years later.  I commented on her new sleek hairstyle and she reported that her husband hates it because it reminds him of when she was wearing a wig during chemo treatment.  A wig he insisted she wore to bed.  OMG.

This is what my nutritionist (University degree and also experienced naturopath) who said:

“Remember that healing is about bringing your whole self into balance.  In essence, this is what is being asked of you now.  It would seem at this stage that part of bringing your self into balance is to go beyond the orthodoxy and pharmaceutical approach into what feels right to you. Stay with it.  This is a process of discovery about your self, the system and beyond.  The beyond being quite a big place!”


Before I finally decide what to do I am talking to two Doctors, actual trained medical professionals, whom I know to have a wider world view than what can be scientifically proven.  This week coming will be decision time.

The future beckons.

My contract job is all but finished – I have one invoice to approve, one payment to be refunded for, and that will be that.  I need to play the “what if you can do anything you want?” game.  What if I can?  What is it I want?  Apart from living another 20+ years.  See above.

I don’t even know where to start.

My soul is lost, my friend
Tell me how do I begin again?
My city’s in ruins  

        Bruce Springsteen

Great concert, shared with friends.  Perfect Saturday night

Great concert, shared with friends. Perfect Saturday night.  That’s me in the white hat.


About Ngaire Wallen

Landscape designer, thinker, partner, mother, reader, wanna-be writer keen to inflict my thoughts on the world.
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