Monday, January 31, 2011

Red Poison (and some Swimming in the Sea)

My oncologist gave me a leave pass to go on our long planned summer beach holiday in the Central Coast of NSW where we rented a house for a week.   

Although it was a bit shorter than we had planned, and meant driving 843 km in one day so we could return in time to start my chemo on Monday, it was worth it.  (Important note: such a drive can be challenging when one's son says 'Are we nearly home' after 5 minutes in the car but I was sensibly advised us to buy little portable DVD players - they are cheap now - and this fixed the problem and produced silence for most of the journey).   

It was worth spending a week gazing at this view:

To sit on this beach (more of Jane on The Beach below) and watch my daughter, far braver than I, master the art of the boogie board, and my son, previously with a visceral fear of the sea, master that fear and begin to love the water, was worth it.   There is something so fundamentally pure about the feel of sand under our feet, and the warm wind in our faces.  It is truly medicine for one's soul.  

I may have mentioned here before that I have pale burny skin.  Skin which burns even after SPF30 cream is slathered all over it.  I have spent many summers in my childhood sitting on a beach covered in towels to mask my bad sunburn of the day before.  Now of course, every child, including ours, wears a Lycra top thingy (called a rashie I think) to prevent that.    

The upside of my pale burny skin is that I might have fewer wrinkles than I otherwise theoretically might have had if I had spent the last 25 years in the sun.   The downside is the sitting on the beach thing.  Which I did during this holiday, sitting fully clothed, like a strange Edwardian person possibly transplanted in a time machine who doesn't understand she is at the beach in 2011.   It was however worth it, again, to watch the children frolic and scream with delight.  

I had to include a picture of this hilarious sign which is still making me laugh as I type this:

If you click on the picture you can see that this pleasant flat beach with reasonably low key surf is in fact a Den of Danger, potentially filled with neck breaking hazards, sharks, jellyfish and extreme wave action.  Oh and there may even be a giant exclamation mark out there waiting to trip you up.   This is what we lawyers call a disclaimer.    It did not of course put anyone off going into the sea.   I wonder if other countries have things like this?  I have only ever seen them in New South Wales.  

Today I started my first round of 'dense dose' chemotherapy.   I sat in a lovely comfortable chair in the lovely comfortable oncology suite listening to Boz Scaggs on the piped music and received my dose of bright red and clear poisons plus enough follow up anti nausea drugs to stock a pharmacy.   This first round goes for 6 or 8 weeks (can't remember at this point in time) and is the worst in terms of side effects.   Second round should may be a bit easier.  

It is quite surreal sitting here waiting for those endlessly explained side effects to kick in.   But I have been doing some reading.  Quite a lot actually.   

I have been given a lot of wise counsel, as you would expect.  And it is a bit repetitive I know but I thank you all.  I am slowly working my way through emails....... still... 

In terms of advice, simple is good, I think, and as a kind man said to me in an email last week:  'Jane, be calm and strong'.  And that works for me. 

Saturday, January 8, 2011

Singing in the Rain

Life isn't about waiting for the storms to pass
It's about learning to dance in the rain.

A kind stranger emailed me this anonymous quote.   I have been thinking about what it means quite a lot.  

I was blessed during the days I spent in hospital by some suprisingly acceptable television.   A few Hitchcock films, some Grey's Anatomy at 3 am and then this, my favourite film, Singing in the Rain.  When was the last time you stood in the rain like this?  I hardly ever did it, mostly from vanity to stop my hair going frizzy.   Well, soon enough I will have no hair, so standing or singing in the rain will present no vanity issues at all.

So two operations (with Christmas in between), a New Year's Eve in a hospital bed, countless scans, x-rays, tests, and lots of poking, prodding and painkillers and a full 8 days in a small room later, I am back home.  And in case one needs any proof that home is better than hospital, here goes:

(gardenias from home by my hospital bed, which did scent the room very nicely for days)

(the real thing on our front verandah)

(chair and window in my second hospital room.  You can just see the corner of the Chinese water torture style ticking clock which my husband had to remove from the wall on the shelf)

(chair and trees at home) 

It has occurred to me that we spend a lot of our lives waiting.  Waiting to finish studying, waiting to meet the right person, waiting to fall pregnant, waiting to get that perfect job \ promotion \ deal \ opportunity. 

For me, I will try living in the now.  Within reason of course. It is absurd to suggest that you cannot think of the future, or plan or look forward.  If I were to only live for this minute, I would be very overweight, and possibly an alcoholic. 

But you can go to extremes.  Part of my old life was full of lists, plans, projects to manage, things to do, tick off, complete, arrange, sort out.  I would lie awake at night thinking of the things I had to do the next day.  I don't think I was stressed about this.  But I liked to have things clear in my head and it was becoming a dreadful self perpetuating habit, which meant that I was over thinking absolutely everything constantly.   I still have this habit.... But I am hoping that my brain can be trained to calm down.  

I have received some amazing things from generous friends, aquaintances and complete strangers.  Your words and thoughts have buoyed me.  Which is strange, because as I have said to several people, I don't particularly care what most other people think.  So who would have thought that so much positivity could help me?  But it does.  Interestingly, in one of the many guides to cancer I have received, one of them is a little pamphlet to help friends and family.  One of the things it advises friends and family not to say is 'be positive' because it may make one feel as if one can't complain or articulate how one really feels.  I think this is a bit extreme.  One of the problems with a diagnosis like this is that it can be tempting to obsessively think about it all the time. That cannot be healthy. And if you have to think about it, think about it, to the extent you can, as a challenge and opportunity.   That, I think, is good advice from anybody. 

So, thank you all, again.

(this arrived from Seymour, a country town north of Melbourne, from a friend of my mother's)

(this turned up from a friend in Paris) 

(this was part of a wonderful bundle of things from Maxabella)

(this came with many other items from Jennie at Posie Patchwork)

I re-read this book over two days last week.  

Of course when I last read this book I shuddered at the chemo and surgery descriptions and thought thank God that will never happen to me. 

This time around I read it with an eye to tips, coping mechanisms and some perspective from the great survivor himself.  When Lance Armstrong was diagnosed with testicular cancer in 1996, he was toast.   Even his doctors, giving him survival percentages of 40% privately thought those odds were generous.   It is tempting to think his extreme fitness helped his fight. Or his determination.  But as he says, brave and positive people die from cancer every day.  Whilst not so nice negative people survive to complain another day.   Go figure.  Life is a great lottery.   The being positive I think is perhaps not so much about survival, but about making the experience more manageable, and giving one skills to deal with the post treatment phase, which I believe can be just as challenging as chemotherapy.  

Lance's foundation, Livestrong, fights to improve the lives of those affected by cancer.  Looking at this very well resourced and clearly set out site, it is quite amazing to see how far it has come since it was first established in 1997.  

Every day I learn about the amazing people, volunteers and professionals, who work to help cancer sufferers.   It is a whole new world for me but one which is not dark and grim, but life affirming and uplifting.  

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