Dear Julia (Louis-Dreyfus)

Dear Julia

One year ago today I was walking in the boots that you are currently wearing.

What can I say to you, and all the other women diagnosed with breast cancer today, as I look back on the past year?

Well, first of all, tough luck. 1 in 8 women in America, 1 in 10 in New Zealand last I heard. Far too many, but still you have to be pretty unlucky really to be that 1.

One thought that has stuck in my head for the last year is why? Why is there what amounts to an epidemic of breast cancer among the Western World’s women. Cos when you start looking, it is a Western disease for the most part. Or more particularly the steady increase in occurrence rates is higher in our culture than in others. Take Japan, for example. Much lower rate of breast cancer among Japanese women. Why? One reasonably logical explanation is the higher intake of iodine in their diet. Could it really be that simple? Maybe, for some cases. NZ soil is known to be deficient in iodine and selenium.

Let me linger on this particular path for a moment longer – iodine (& selenium) is vital for the thyroid gland to function, and the thyroid gland controls all the other glands that run our bodies. Thyroid glands don’t like fluoride, chloride, bromide – stuff that is in our food and our water – it bungs them up. Iodine cleans them out.   Women in their late 40’s start having massive hormonal changes in their bodies, and if your thyroid gland is not keeping things in order, you will be over run with estrogen…. this is a very bad thing. I am paraphrasing here, but I wish someone had told me all this 6 years ago when I first had an abnormal mammogram. Of course no drug company is going to invest in research into iodine – there is no profit to be made there. Luckily there is a charity in America that is doing the research, and you can buy your own iodine supply on-line to support them. For anyone who has had ‘lumpy’ breasts or an abnormal mammogram, can I politely suggest you check it out for yourself.  www.breastcancerchoices.com If may just save you having to deal with cancer. At the very least it won’t do you any harm. And if you are recently diagnosed, never too late to start.

Another thing – alcohol. Sorry Julia, and everyone else, but please, please, stop drinking alcohol. My simplistic understanding of the situation is that our liver cannot process alcohol and estrogen at the same time. So, menopausal and therefore hormonally out-of-control women, just stop it. I can tell you what happens. Firstly you lose a bit of weight even trying, lets face it that is not what is at the top of your mind right now, but you also lose your taste for it. I have sipped red wine (the oncologist I was seeing is not convinced about alcohol and said it would be OK…) and it tasted dreadful. Champagne – how I would love to drink a glass of champagne. But here’s the thing – when the stakes are high enough it is surprising what you will forego. It isn’t exactly fun being the sober one at the party, but it is more fun than not being at the party. Is it worth drinking alcohol? I think not.

Back to those dark days of diagnosis; my advice – take a deep breath and a few days. You had cancer the day before you knew it, maybe years before you knew it. Taking a few days to absorb your new situation won’t make any difference. What matters now is getting yourself prepared for what lies ahead.

I know some people have absolute trust in the medical profession, and are more than happy to place themselves 100% at their mercy as it were, to do the best they can for them. Doctors will do that, according to the latest information and protocols and whatever else. Without doubt, they do their best.

My hesitation is that they cannot know you as well as you know yourself.

I went to the first surgeon’s appointment armed with a piece of paper and at the very top in big letters it said “I want a complete mastectomy. I have no interest in saving my breast”. Why? Well, because of my age, and because for me, I wanted the least surgery, the least invasive treatment, for the maximum benefit. In NZ most, if not all, women who have a partial mastectomy also have radiation treatment. If you have a complete mastectomy you may not need radiation. So the surgeon talked about something else I had never heard of but he meant a partial mastectomy. He made a very convincing argument to save most of my breast. God alone knows why he thought he needed to do that. Because of that, I was lined up for a hook wire (another invasive and expensive procedure so they can find the tumour on the day) and an MRI scan.  I called him the next day and said I wanted a full mastectomy, which he said was my decision.  He told me just before the operation that I was right – put it down to women’s intuition.   No hook wire, no guaranteed radiation (I didn’t need it in the end). I knew that. I JUST KNEW. Trust yourself. Listen, think, but also find out what you need to know and go to the appointments informed and with a list of questions.

I spoke to women who had survived breast cancer. The ones who retained control over their lives were in much better shape. One poor soul was really scared about not seeing the oncologist any more, after 10 years. What ought to have been a moment of great celebration, was in fact a source of deep fear. She had followed the advice given to the letter, ended up having several operations that have left her with two partial breasts of uneven size and a reliance on anti-depressants. We are not all the same. I wished at times that I was one of the trusting souls of this world, but I am glad now that my life remains in my hands. More on that later.

Two things I found most helpful in all the web searching – http://www.cancer.net  provides information from the American Society of Clinical Oncology – and a publication called ‘Questions to ask the Doctor’. Useful to read through it to see what lies ahead, and the issues that you need to know about. Another publication called ‘Your Guide to the Breast Cancer Pathology Report’ from www.breastcancer.org comes complete with a list of definitions and space to fill in your own information.

Seems to me there is a strong bias towards ‘saving your breast’. For young women, I get that. For everyone else, seriously, once you have your clothes on, no one will know what your breasts are. Implants? A piece of your stomach or back muscle appropriated into breast-reconstruction duty? A pair of socks stuck into a bra? Does it matter? At the time I met the surgeon I was absolutely sure I was not having reconstruction. My partner asked me if I would be more confident having a reconstruction. Seriously? What comes out of my mouth has nothing to do with what is or isn’t supported by underwear. Around that time there was a news item about a young Syrian girl who had borne the brunt of the mad war raging in Syria. She had lost not just an arm but also her whole shoulder joint. Plastic surgery belongs to those people, not the vanity of middle-aged women.   The ‘save-your-breast’ emphasis should be balanced with a discussion about who you are and how you see yourself, both mentally and physically. If you really feel the need to be defined by having two breasts, I feel a bit sad for you actually, but help is at hand. Just be aware that your new appendage will never ever feel or act the same as a breast.

Surgery is OK – I just took panadol every 4 hours for a few days.  Seems is not that much nerve tissue around breasts, so it is surprisingly low-pain.  Mind you I was lucky, no lymph nodes taken out.   Get surgery as soon as possible. Most surgeons work in both the public and private system. The difference is timing. For me, 2 weeks after diagnosis the offending material and the breast it had grown in was removed. Gone. Done. I was very happy about that.

Be aware that despite what they say on the day, the pathology results may take longer.   Use the time to get your head around the next lot of decisions. Chemo? Radiation? I see in today’s paper they are trialling doing chemo first. Doesn’t make any difference to survival rates apparently, but it makes sense in some ways to shrink the tumour first. My new ‘bosum buddy’ had her treatment that way around.

Post-surgery it all becomes statistics. If this, then that. If that, then this and this. I believe you must make informed choices. I went for the chemo. It made sense to me that there was a chance some cancer cells had escaped – especially as there was a 10 day delay between the biopsy and the surgery – something I would have questioned if I had known at the time. My then oncologist filled out a prescription for a bucket load of drugs to counter the effects of chemo. I didn’t take most of them. What I did, around surgery and when possible, was get moving. Out in the fresh air. Made meditation a priority for the day not something to do when I remembered.   And I found a nutritionist who plied me with another bucket load of supplements to help my body deal with chemo. I believe that between these things (exercise, supplements and meditation), it worked for me. Chemo was not easy, but it wasn’t devastating either.

The other thing I did, really early on, was decide the chemo was stardust (yes, I know) come to take away the cancer. Sounds mad. My sister scoffed. However my cancer looked like a comet to me – a big blob with lots of little blobs out behind. In my head, when the chemo was being pumped into my hand, I imagined that it was stardust come to collect a lost comet and take it back to the skies. I welcomed it, I chanted all this in my head when I was out walking. I think it helped. At no point did I see chemo as poison come to take me to the brink of death.

Without sounding too dramatic, that stuff is seriously bad for you. I was really surprised when the lovely nurse swopped the empty chemo bag for saline and said “we have to start getting this out of you. You have to drink A LOT over the next 3 days to flush it out.” I expected to be rolling around on the floor making sure it was getting to my extremities. Nup.

What else do I think looking back on the last year?

I had plenty of support and help from friends and family. When I got home from surgery (one night in hospital) it looked like someone had died. Flowers everywhere. They do die. At some point you realise that regardless of how much you are loved and supported, you have to deal with this on your own, in your own way. There will be tears, of course. I had to all but physically stop myself thinking about leaving my children behind (they are all grown up but still). That was the most upsetting thing for me. I am not worried about my life, but the thought of missing out on theirs made me too sad to stay in that thought. We are all dying, every day. The thing with cancer is there is no real end. Not for me, anyway. Maybe in 10 years, or maybe in 15 years, I can relax. Or like Olivia Newton-John, in 25 years, there will be a recurrence. I don’t think about that. I told my sisters that if I check out of this life early I will leave them to the incontinence, deafness, resthome living. What I allude to is the need to live now, not in the future. We should all do that, within reason. Bit of a challenge to decide exactly what you do want to spend your life, long or short, doing, and who with. Most people don’t get that opportunity so grab it.

Chemo – 4 doses – each day crossed off on a chart – is a test of character. I stupidly missed a mammogram two years ago because I thought it was silly to have one before summer, much better to get cancer in the winter, if you have to. Then I got busy and didn’t have it at all. Actually getting cancer in summer is OK because on the nights when you can’t sleep it is warm, and you can get up and sit wrapped in a blanket and look at the stars. You can go for a swim and feel weightless and carefree just for a while. It is holiday time so everyone is happy. I really noticed the change of seasons, partly because I had time to.

I did not predict a falling out with the oncologist over longer term hormonal treatment. He is a very well-regarded professional who takes great comfort in statistics. “If you take these pills, you will reduce the likelihood of a recurrence by (another) 5%”. Post surgery and chemo, I sit at about 85%. Hormonal treatment would, statistically at least, take me to 90% chance of not dying of breast cancer. Except my life would be living hell. Imagine living every day with the full on symptoms of menopause. Hot flushes, insomnia, mood swings, osteoporosis – and those are the COMMON side effects. We had a rather heated debate. He is single, no wife, no children. No working knowledge of menopause. No first hand experience. He admitted 30% of his patients stop taking it. Because they would rather risk dying of cancer than living a nightmare.

Guess what? There are alternatives. I will admit they are not yet proven in clinical trials. Why is that? Cynically I think the drug companies are raking it in. Let us not forget for one moment they are driven by profit. Not some higher calling to cure cancer. Unless there is money to be made. I believe alternatives matter, and will in the long run be the answer.   I told my man I expect in 5 years time he will be apologising to me. That was before he fired me as a patient. Do your research. Check out what is available in your country. In NZ we do not have any oncologists prepared to look beyond what scientific medicine offers. Shame on them. Even my ex-oncologist conceded that meditation helps. He would not go much further than that. The information is out there – I implore you to look. Take charge of your own well-being.

My take is that most adult cancer is a failure of our bodies to deal with a dis-ease – physical or mental.   Take the best of modern treatment – surgery, chemo, radiation if it has spread – to get rid of the cancer, then take charge of your body and your life to create an environment that is not hospitable to cancer. No alcohol, sugar, dairy, red meat, refined wheat. Get stuck into quality vegetables, nuts, seeds, filtered water. Laugh a lot. Love a lot. Love yourself a lot. Get fit. Lose weight (I am 10kg lighter than what I thought was my ‘goal’ weight; who knew?).

I found my ‘tribe’ at a centre for anyone with a life threatening disease. Weekly art group mornings, attending counselling, attending a group preparing for the transition back to a new normal after the treatment is over. Massages, facials, reiki therapy. Bliss. Seek out what you need. There is great comfort in being with other women who are in the same predicament. For a start you can laugh about wigs and scarfs. Can’t forget the woman who was sitting alone that we invited to sit with us who whipped up her top to show us her new boobs. They were great, I must say.

Today is the anniversary of my diagnosis. October the 17th will be anniversary of my surgery, November 22nd the anniversary of my first chemo and February the 14th the anniversary of the official end of chemo. I have been pondering on whether the period between diagnosis and ‘cure’ or say, surgery, could be a sort of Lent or Ramadan – an annual time of denial of pleasurable things in order to reflect on life and living. Tempting to treat it like that but there isn’t much left to give up, frankly!

I have been feeling surprisingly emotional today. Perhaps because at the time you just have to deal with waves of information and appointments and fear and shock and you don’t really stop and think too much.   Looking back over what I hope is the worst thing to ever happen to me makes me wonder what I am going to do. I have decided this week I am withdrawing from a business proposal because it is time I stopped doing things just because I can and I should start doing things because I want to.

Julia, and all you others, I wish you all the best for a happy ending to your dance with cancer.  I hope that in a year’s time you will be laughing and smiling and your hair will be back although still short. The worst of your active treatment will be behind you. You will be fit and well, confident, loved and loving.  Totally alive.

Bless.

Stonehenge on a stormy afternoon. Life is for living, stones are for the dead (they think).

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One-not-so-bloody-smart card

It was all a bit of a leap of faith, but stupidly I thought it was a good idea to use a ‘currency card’ for my quick flit to Europe.  Apologies if this is a first world problem, but I have only been to Europe once, 17 years ago, so this IS a big deal.

Today I got an email saying my  OneSmart card was suspended due to some suspicious transactions.  Naturally, I logged in and lookie-there – three transactions in Brazil.  WTF?  Second step is to call customer services (!), as per the email request.  My first attempt was a failure – hung up after 15 unanswered minutes.

“Welcome to the new OneSmart customer service centre” it said.  All downhill from there.  The lovely women of Asian abstraction did their best to placate me.  Offered to send me a dispute form.  Like I have done something?  There is no dispute to be had.  I found that if you speak through gritted teeth they fairly quickly pass you on to someone else.  Person number 2 offered to send a replacement card in 5 – 10 days.  How will the card find me, I wonder, if I am in France or on the Eurostar???  No, that is not helpful at all.  Then, if I was united with the replacement card, I can use it to get emergency cash.  What I want is MY cash….

Person number 3, English, and clearly schooled in dealing with the borderline hysterical.  She too insisted I need to fill in a dispute form.  Also a ‘cash out’ form to close the account, after I explained fairly tersely that I cannot possibly travel with a card that has lost my money before I step outside the front door.  To think I was worried about pick-pockets.

I walked home – walking goes quickly when you are angry, and the forms had arrived in my in box.  Printed, filled out, scanned, returned.  With a hard copy just to be sure.

Just to add insult to injury, the dispute form, page 4 requires an Affidavit of Fraud.  Does this happens all the time?  It says “being duly sworn, say that my card was (check boxes) lost, stolen, blah blah.  I tick Other, sign and send.  When I look again, after the Other box it says (Please explain).

What.  WHAT.  YOU EXPLAIN.  You explain to me how some arse somewhere can access MY MONEY, that I gave to you to look after, and take some of it and you want ME to EXPLAIN to YOU WHAT HAS HAPPENED????

NO NO  NO NO NO.

Just give me back my money, all of it, and be done with it.

Airlines should stick to flying planes and leave banks to deal with money.

You know what my horoscope (daily) said …. “When you get impatient today, step away and take a breath.”  I take that as hanging up after 15 minutes.

The weekly version says

“Put your money head on…. On the other hand, a financial glitch could give you quite the headache. The crucial factor about any monetary issues that arise this week as that you must check the veracity of the information.  (too late?)

Guess it will all work out somehow.

Unlike travel cards, a trap for the innocent, this trap serves it’s purpose. Protecting whio, our endangered blue duck, in the Otira Valley.  Perspective restored.

 

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Expecting the unexpected

September already.  In just 6 more sleeps, I will be leaving the safety of New Zealand for London, Paris and New York.  Despite noting that my horoscope in no way gave any indication of an impending cancer diagnosis, it did predict more recently some unexpected  travel, and so it has come to pass.

A conversation with a friend started with me saying to her “you must go, you will regret it if you don’t,” to “have my credit, I really think you should go,” and ended with “ok, you and I will go!”

I have no recollection of the switch in intent, except I now have a return ticket to Europe, and know more about the layout of London, Paris and New York that I ever thought I would need to.  When I find myself, in a one week’s time, wandering the streets of London it will feel completely unreal.

This might be the bit where I am supposed to say that cancer was the best thing that ever happened to me?  But no.  It is the result of a cancelled business trip (because I was diagnosed with cancer) resulting in an airline credit, a change of plans earlier in the year, and the whim of a complete stranger (to me) to get married at a chateau in France.  Such inept romanticism, but who I am to judge?  I get to go to the wedding.  It will be conducted in Africaans,  in France.  I speak neither language.

This course of events has led to a flurry of activity of course.  New frocks, for the wedding and because I don’t want to be that tourist in Paris in a track suit.  No.  Skirts, shoes, white jeans.  All packed and ready, as time is running out.

It feels to me like an ending.

Two days ago I got my first haircut in 9 months.  Like others who have chemo, my hair, naturally curly, grew back like a really bad ’70’s perm.  Tight white woolly fuzz.  Half lamb, half poodle.  Detestable.  I went for the walk in the morning, to my beach, where I make little shrines to my Mother and Ailsa, and I thank them for being with me.  I found myself in tears, because somehow going back to the hairdresser that shaved my head in November last year feels huge.  Because I know he will hug me and be pleased to see me, and will fix the poodle issue with his magical hairdressing skills.  And it is the moment to leave cancer and all it means behind me and move on.

Peter is all I expected, both emotionally “I was so pleased to see you were coming in,” and professionally.  Ironic having a blow wave when there is not much to dry but yes, Paris chic, not farmyard afternoon.

I spent yesterday packing, and that included some finishing touches to some of the clothes.

The wedding dress

When my Aunt was nearing the end of her life (97 when she died) she lost a lot of weight and so I bought home three outfits that no longer fitted her, but that were her ‘good’ clothes at some stage.  She was a craftswoman seamstress all her life, and could make anything for anyone.  It seemed to me only right that when she died she should be dressed in one of her own creations.  She chose the blue floral.  I kept the others, aiming, one day, to remake the blue lace two-piece into a dress.  The moment was at hand.  The dress is now packed.  Some of it is still her hand stitching.  I sewed one of her name labels from the rest home era into the back.

The skirt

26-ish years ago, I was working on a project out of town. For some reason I purchased a very stylish linen skirt, which was even then a bit on the small side, but you know, I was going to lose weight…  I didn’t;  I unpicked the skirt and kept the bits as it contained a lot of fabric.  During a frantic search for the green merino fabric (found but a disaster – now on hold) I found the linen and realised a simple short skirt was just what I needed for Paris, or New York.  How satisfying to finish a project some 26 years in the making.  Skirt folded and packed.  Ironically the original skirt would probably fit me now.

The silk top

When my Mother died, she left behind a room full of knitting materials and machines.  The acrylic went to the Op-Shop, but I could not throw out the linen, cotton and pure silk thread.  All of them very fine, for machine knitting.  A year ago, when I thought I was returning to PNG and thinking I would need something to while away the evenings, I started on a silk project.  A casual summer top – perfect for NZ summer evenings when it is not quite warm enough without another layer – and a pattern that had a chart to follow.  I had never knitted like that before, so it took a while to get the hang of it.  Every stitch and every row had to be read off the chart.  I almost gave up.  That knitting was one of the things that kept me sane during chemotherapy.  I could not think about anything else except following the dots on the chart.  I stopped for a while, but yesterday I finished sewing it up.  Pure silk has a sheen that is unmistakable.  It looks, not surprisingly but to my relief, exactly like the picture in the pattern book.  In the suitcase.

These items of clothing have taken time and possibly more effort than is warranted, but what is it that gives us meaning?  It is our connection to others, past and present.  It is the satisfaction of making something out of nothing, or in these instances, out of what could so easily have been dispensed to the rubbish.

Life meantime, has moved on in other directions.  A part time job.  Kind of fun – early days really – but I find the bus commute is a good time to do French lessons.  I will probably continue with French when I return.  I think it is good for my brain.  According to Duolingo, I am, as of yesterday, 21% fluent.  I doubt it, frankly, but I will find out soon enough.  The job is potentially a perfect fit for my disparate skills – we shall see.  Right now, today, I don’t care, because I am going to EUROPE!

The choir had a concert.  I thought it was a bit optimistic putting out so many chairs for a Sunday afternoon singalong, but by starting time it was standing room only.  The singing was great, the afternoon tea was legend.  Everything from asparagus rolls to gluten free crackers with spinach dip.  Pretty much representative of the choir membership.  Coincidentally one of the newspaper columnists that I enjoy had written that very day about how annoying she found choirs, and their over-representation of “the Bookish, the Earnest, the Borderline Tearful and the Monumentally Hacked Off.”  I protest.  Our choir might have those people, but I see extremely ‘normal’ people who just like to sing.  We partook in University research about the benefits of singing in choirs;  there is a choir for people who have had strokes or other mental health issues who cannot speak but they can sing.  Don’t knock it till you try it.

There was an article in the same publication a few weeks earlier discounting Dr Libby’s ‘rushing woman’s syndrome”.  It countered “if a woman is doing both [paid and unpaid work] she must be harried and pulled in multiple directions.  We don’t run the numbers and that someone working 40 hours and sleeping 8 hours a night, has 72 hours for other things a week.”  I find the maths laughable.  Sometime in those 72 hours you have to run the household (washing clothes, ironing, cleaning, getting firewood, paying the bills, getting food, taking the cat to the vet, weeding the garden, washing the car, getting the broken washing machine fixed, – or is all that outsourced?), give your children some time, probably look after your elderly parents, organise a social life, participate in that social life, get or stay fit, and maybe, maybe if you are lucky, do something you enjoy (like knitting a silk top).  According to the article, stress is only harmful if you think it is.  According to Dr Libby, women who live like that are in grave danger of developing serious illnesses.  I see my new bosses with their one year old child living on coffee, constantly torn between work and child, sleeping in separate beds as a hangover from the newborn stage.  My job only exists because they recognised the wheels were about to fall off the business.  I wonder to myself when the wheels will fall off at home, unless they stop and reprioritorise things.  From the privileged position of having come out the other end of the working/mothering stage, my money is on Dr Libby.  Take her advice.  Cancer, heart disease, arthritis – they do not exist in a vacuum.  We create the environment that lets them develop.  Yesterday I saw a photo of me taken a few years ago when we went to Sydney for a weekend break, after my Father had died.  I was FAT.  No escaping it.  I hated that photo at the time, and now it really shocks me.  I was probably about 15 kgs heavier than I am right now.  At the time, I thought I needed to lose 5 kgs.  Unfortunately it took getting cancer for me to get serious about what I put into my body, and to my surprise I lost another 10 kgs.  Without meaning to.  Totally unexpected.

I am off to Europe.  I will walk in the footsteps of my great-great-great grandparents and visit the church they got married in.  I will marvel at the historic buildings in London and Paris, be agog at Stonehenge, delighted by the Statue of Liberty, and come home in 20 days time ready for summer.  I expect it to be a good one; the last one kind of passed me by.

From a cracked pot ignored for a couple of years, this perfect freesia has grown. Totally unexpected, absolutely delightful. Summer is coming

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Shortest Day, Longest Year

Here it is, the shortest day of the year.  In NZ of course we get through that before anyone else does.  So happy 21st of June, world.  Bang on time we are about to be hit with a winter storm – gale force winds, snow flurries, rain.  Winter, in other words.

Tucked up here by the fire, tempting to say “who cares?”  I don’t really, I like the change of season, I like the fire.  I don’t even really mind the cold to be honest.  I feel sorry, briefly, for fellow citizens of this planet for whom winter means true misery.

It seems entirely appropriate, given that tomorrow we will be heading for summer, to ponder on the state of ‘things’, and in particular two topics that I reckon might just hold out some hope for this crazy world we have created.

Firstly, music.  I don’t understand music from a theoretical sense, but I know for a fact that it is an important part of my life, and seemingly most people’s lives.  The international language we all share, whether we know it or not, it seems to me that music is something fundamental to humanity, and therefore a potential source of great hope.

Our interaction with music varies wildly from day to day, but recently I have been lucky enough to indulge in some memorable music experiences.  The living legend that is Mavis Staples was unforgettable.  At age 77, still touring, still growling about the wrongs of discrimination, still joking with her audience about banana pudding.  Fabulous.

I recently attended, at the last minute and at significant cost, a performance of Book of Mormon, in Melbourne, Australia.  I was not too sure what to expect from a performance whose basic storyline involves young Mormon missionaries and female circumcision.  It was laugh-out-loud funny.   The entire audience left the theatre grinning from ear to ear, having been exposed to some of the rudest, crudest lines in the history of musical theatre.  Despite that, you just had to laugh.  You couldn’t help but feel better about the world.  I imagine it is not so popular with the Mormon church, but if half of what is in the musical is true, again, you just have to laugh.  I did have a long conversation with the distinguished gentleman from Singapore seated next to me about the absurdity of some – most? – religions, but we agreed that in the end most have a positive influence on the community in which they operate.

On Sunday I went to a ‘Live at the Met’ screening of a performance of La Traviata.  It is a brilliant concept, filming an opera performance.  I was unsure for quite a while whether it was actually live, and finally concluded it was not but presumably at some stage they do broadcast live.  La Traviata is one of my favourite operas, and this production was stunning.  Pared down to the barest minimum of set and props, the saga unfolds without any distractions from the music.  At one stage I found myself actually gasping, hand over mouth.  It was a movie of an opera, but somehow so gripping you could not help but respond to the emotion and drama.  At half time a fellow attendee needed a helping hand to get to the coffee counter.  Turned out her husband had been a tenor at the Met.  The man sitting next to me recommended a performance to download (I’ve forgotten which but it was nice of him to advise me).  Little, insignificant human interactions that made the outing all the more worthwhile.

Tonight I was supposed to be at choir practice.  Our dear leader has been stricken with a winter illness, and told us all to stay home.  It is a community choir; some 50 – 60 singers turn up every Wednesday.  “Give yourself congratulations for coming to sing together,” he tells us as we warm up, “Congratulate yourselves on making this your special ‘me’ time.”  And then we sing for 1 1/2 hours.  Gospel, Dylan, traditional, African, Latin America, Latin, Bee Gees.  Anything is possible.  There is no audition process for this choir, you just turn up.  For a bunch of amateurs, it is good, very good.  Serious about singing, having fun in the doing.  There is plenty of laughter between the singing.  Standing in the middle listening is a treat.  You hear it, but you also feel it, somewhere in your body, somewhere in your heart.

The second ‘thing’ at the top of my head today, the shortest day of 2017, is manners.  Yesterday at the supermarket, I overheard a mother say to her quite small children “OK, what are the rules for when you are out shopping with Mummy?”  Without hesitation, they said “No shouting, no running away, no bumping into people, no asking for things…”

I wanted to hug them all.  Such wonderful manners.  Such clever parenting.  These were not children ruled over with an iron rod, in fear of physical retribution, but budding adults taking their rightful place in the world, with a clear understanding that they share it with other people, and must consider those other people as they go about their business.  That Mother should be President of the USA.   Is it, after all, good manners that we are all missing?  I help the lady at the movies with the bad vertigo, the man next to me gives me a handy hint, we are polite and courteous to strangers and the world keeps turning.  We all get to have a good day.

Our Prime Minister has been caught out lying this week.  He ‘can’t recall’ details until his police statement is made public.  Suddenly he recalls.  The Member of Parliament breaks the law and lies about it, the PM lies too and has a bad case of short term memory loss – a pox on all of you.  You were voted in to public office and you are just dumb liars with no manners, no respect for us.

It is a long year for me.  The likelihood of a recurrence of cancer is highest in the first two years.  I can’t wait for this year and next year to fly by, singing, laughing, living well; not having cancer.

Great-Ocean-Road

Great Ocean Road – somewhere between Melbourne and Adelaide. Literally the bottom of Australia – magnificent landscape shaped over millions of years. We are just mere flickers on the surface of this planet.

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Journeys, non-journeys and the madness that seems to be in us all

My idea of a journey is to decide where to go, plan how to get there, successfully arrive and return safely home.

Life itself is sometimes referred to as a journey.  I question that.  No one has any certainty about how their life will play out.  Who has any say about what random events, chance meetings, or natural phenomena will tumble uninvited into even the best planned ‘journey’?  All we know for sure is the ending.

I recently completed a course on creating a new normal life after completion of active treatment for cancer.  Many times, the spectre of the ‘cancer journey’ was raised.  NO, not a journey.  More like a ride in a dodgem car at the Easter Show.  Unexpected twists and turns, with no idea when it will stop.  Indeed will it ever stop?

Last night, on the final decision night of NZ’s Bachelor reality TV series, the bachelor mused on his participation in the programme.  “It’s been such an amazing journey,” he said, “I’m so glad I’ve been a part of it.”  I think he means experience.  Reality TV does not qualify as a journey in my world.  In my defence I spent the entire day attacking agapanthus weeds;  I deserved a bit of mindless entertainment.

As well as ‘the journey’ story, the other mythology around surviving cancer is the stories of enlightenment – a higher awareness of the precious act of being alive.  I get that, particularly when the sun is shining and I have the luxury of time to notice and enjoy it.  However the value of simply being alive often morphs into cancer/illness being the best thing that ever happened;  I struggle with this.

I am reading ‘The Past in Hiding’ by Mark Roseman.  The true story of a young Jewish girl who somehow (haven’t finished the book) escaped “evacuation”, as they euphemistically called being shipped off to a death camp, to survive in hiding in Germany for the rest of the war,  eventually moving to England.  The Father of her sweetheart, (both of whom had already been shipped off to a ‘holding camp’ and who eventually perished), appeared to be either unaware or simply not acknowledging where the trains of people leaving with just the clothes on their backs went, and wrote:

“It may be that later, when we’ve got through this, we’ll look back on this as the most  important time of our lives and won’t regret having gone through it, brutal as it was.”

This I relate to.  Sometimes, when I am digging in the garden, or sitting in the sun, the reality of what has happened to me over the last 7 months dawns on me.  The surgical removal of my right breast, followed by being pumped full of seriously poisonous chemicals.  The markers of each chemo cycle are slowly disappearing as my nails grow; I have enough hair on my head to not invite quizzical looks, although people do not recognise me.  It is brutal, shocking; both physically and mentally.  Something to be ‘got through’.  I will not regret it, because it has saved my life, and so in a way is, for now anyway, the most important time of my life.  For the German Jews who did not leave when they could because they were more German than Jewish and thought that would be enough, they had much to regret.

Equally brutal, and to me shocking, was the plundering of their lives before they were dead.  Ordinary German people, neighbours, acquaintances, talking about what they would have of the possessions left behind.  How could they?  You can’t help but wonder how that happened, and what you would do in the same circumstance.

This week, the Writers Festival Gala Night. 8 writers speak for 7 minutes.  One of the speakers was the daughter of Bishop Desmond Tutu.  Tall, elegant and articulate, she enchanted us in her silky story-teller voice with an amusing and interesting tale based on “the heart of the matter”.  She is of course ebony black, emphasised on the night by her scarlet red outfit.  By the standards of Nazi Germany, a subhuman.  A few weeks ago I went to a concert by Mavis Staples, American soul/blues singer aged 77 and still touring.  She talked proudly of marching with The Rev Martin Luther King, as she called him and of her anguish that she still needs to sing, that the work is not done.  Both these women witnesses to discrimination most of us in New Zealand cannot begin to comprehend.

These moments were all completely random in my life.  I did not know who was speaking at the gala night; I had never heard of Mavis Staples until someone said they were going and I bought the tickets as a birthday present;  I borrowed the book in the South Island last weekend;  I watched the Batchelor because I spent all day in the garden and just wanted to blob out.

The figurative dodgem car in my mind bumps into all these things and while I weed or chop vegetables I think about all of them.  Journeys that are not journeys at all but events or experiences;  why some things make us better at being human beings while others lead to inhumane brutality.

For me cancer is not the beginning of a journey any more than life itself is a journey.  It is more like accidentally falling in a deep ditch.  It feels dark and cold, and the light is up there somewhere and you just want to get out as quickly as possible.  Unfortunately that is not the ending.  It follows you, sometimes close by, sometimes far away.  I have had check ups this week with both the surgeon and the oncologist.  I am sure I do not have cancer any more.  The best they can do is tell me I don’t appear to have it at the moment.

David Krombach, the same man who thought it might be “an important time in his life” when in fact he was about to be murdered, wrote:

“We have had to shoulder so many burdens,  Often we thought we would go under.  But we have also experienced much that gave us hope.  Selfish feelings fade away – one is ashamed of them.  We pull together and learn something of the power of the whole.” (‘The Past in Hiding’ Mark Roseman, pg 192)

I have hope for my own health.  For the world – not so much.

We have lunatics exploding homemade bombs at a concert in Manchester.  Dodgem car-randomness – who lived, who died.    Without doubt these suicide bombers are deluded.  Is it more or less delusional than aiming to exterminate all Jewish people, along with a smattering of others deemed unworthy of living?  A plan that somehow garnered the acquiescence of ordinary people.  Or of a society where the value of a life depends on which colour you are lucky or unlucky enough to be born with – a prejudice still alive and well such that a 77 year old feels the need to continue to use music as her protest medium in ‘the greatest country in the world’.  Same country that invaded Iraq and kick started this current torrent of evil.  I was at a concert that night – Bruce Springsteen.  He talked about what was unfolding on the other side of the world, slightly apologetic.

The power of the whole is our only hope, on this dodgem car ride called humanity.

Calendulas – their extracts used for calming. Can we grow enough for everyone?

 

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ANZAC Day

In New Zealand, the 25th of April, ANZAC day, has been a public holiday for many years, but in recent times has taken on renewed impetus.  It is the date of the invasion of Gallipoli in WWI – a complete and utter disaster at which many NZ soldiers died.  People of all ages gather at the various commemorative services, many of them timed to finish as the sun rises.  The media devote hours of daytime television coverage in various forms.

I have been a bit sceptical frankly, about turning ANZAC Day into a media event.  Somehow reducing  the horror of war to prime time entertainment does not sit comfortably with my take on it.  If you are that committed to remembering the fallen soldiers of past wars, just broadcast the iconic red poppy on the screen all day.  Stare at that and think for as long as you like.

This ANZAC Day my level of participation has been taken to a new height.  (I have been to services before, as a member of the Girls Brigade, probably 40+ years ago).  Through the power of the internet, I was tracked down by a member of the RSA (Returned Services Association) who personalise their commemorative event by choosing one of the ‘names’ on their Roll of Honor and telling their personal war story.  They happened to choose one of my ancestors, and I happen to have written a blog post about him a couple of years ago.  It would be churlish to write about the importance of remembering people and then turn down the opportunity to do something about it.

In order to get to the dawn service, I got up at 4:15am, to drive across Auckland to Howick, where this particular branch of my family settled in colonial times and dutifully went forth and multiplied.  Stockade Hill is the site of the former colonial stockade, and now has the war memorial obelisk, flag pole and trig point.  We were blessed with a perfectly still Autumn morning, a brand new crescent moon setting behind the obelisk with Venus shining brightly as the sky went from black to the pink of dawn.

The calm of pre-dawn, people quietly gather together before the service begins

Watching the ‘services’ in action is always entertaining.  Their ancient orders and instructions bellowed out as if everyone is either stupid or deaf, weird hats, staunch expressions.  I did not appreciate until today that the ANZAC service follows the set procedure of a military funeral.  Four guards stand at the corners of the obelisk facing outwards, guns pointing to the ground, hands folded, heads bowed.  Without saying a word, it is respectful, serious, and sets the tone for the prayers and words that follow.

It seems particularly poignant this year, when we have the lunatics in charge of the asylum with their fingers poised on the big red buttons, to remember the people who fought wars so that we can live in peace.  While I detest the seeming ‘commercialisation’ of ANZAC Day, I believe that we must remember the past and those who died giving us a future.

After the service I found my liaison man and introduced myself, and we agreed to meet at lunchtime.  It was only 6:30am.  A visit to a relative from the same branch of the family tree filled in the hours until then, as well as a visit to the graveyard where our common ancestors are buried.  These are all my grandfather’s people and he is the only grandparent I knew.  I miss my ‘old people’ – I suppose that is what happens as we age, until at some stage we are the old people.

I am early for lunch, but eventually the second service of the day up on Stockade Hill is finished and those who qualify for lunch arrive.  There were two veterans of WW II at my table – supported by their families to enable them to attend.  One due to turn 100 in November this year.  Such a delicate year.  No pressure, 99 is huge too, but 100 – that is very special.  Everyone wants to have a party, and no one says it out loud but secretly they are just hoping that you make it.  He did joke that he thought perhaps this would be his last ANZAC Day.

After lunch, served to 300+ people by the Air Training Corps – the same group who formed the guard of honour – lots of thank yous to the various volunteers that make the event possible.  Then a second reading by the winner of the essay competition.  Then me.  The last post-lunch speaker.  Not a great slot, frankly.  When I got invited to speak (i.e. read out my blog post) in my head I thought maybe 20 or 30 people.  300!  I guess it doesn’t make that much difference; you still hope to hold their attention, not make too many mistakes, and not babble incoherently.  Mission accomplished I think.  Just got an email that says:

I just wanted to tell you how well I thought you had done on a sensitive and moving address today. 
You touched a lot of people there and I am sure there will be more family research done as a result.
It was a story of exploration from the heart.

Truth be told I feel humbled by the opportunity to participate, to share my babble of thoughts, to see the veterans with their medals and be part of a show of gratitude for what they went through.  I would encourage everyone to make the effort to get to a Dawn Parade at least once in their lives.  Sooner rather than later – the soldiers are not getting any younger.  Nice to see veterans from other theatres of war as well; people who for whatever reason volunteered to risk their lives.

Someone asked the question this week whether if Australia goes to war to support America, will we go too?  I hope not.  I would not want my sons in any war zone ever.  It is hard to believe that conscription would even work any more, frankly.  Besides, a nuclear bomb does not require thousands of child soldiers in the trenches covered in foreign mud. If North Korea presses the button and the USA or anyone else shoots back, we are all in deep trouble.

To round off a perfect day, an early movie – ‘Their Finest’ – British film about making a film during WWII.   Just a coincidence that we went today, but very apt.  I cried.  Highly recommended.  I’ve been awake for 17 hours.  Big day.  Plenty to think about.

No one asked me about my EXTREMELY short hair.  Yes, I think I can say I have hair again.  Still an extreme cut, not yet a style.  Perhaps they were just being polite.  We all have our battles to fight.

The early morning sky casts pale light over the crosses representing the fallen soldiers of the area

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Housekeeping

Due to a lapse in thinking, I managed to flood the floor behind the washing machine.  Having pulled the machine out about 2 weeks ago, to survey the situation, I was aghast at how disgustingly dirty it was down there, among the fluff, dropped pegs, and various other unidentifiable detritus.   However disgusted I was, it still took me a couple of weeks for this particular task to reach the top of the ‘to do’ list.

The actual cleaning was not as bad as it looked, but of course leads to more – shifting the adjacent dryer, then the pile of stuff that had built up against the wall, then the coats and bags and accumulation of plastic bags saved for up-cycling in due course.

Tiresome, bit boring, but tasks that give the mind a bit of space on an at-home Saturday.  I had already knocked off a 1 km swim in an outdoor pool by 8:30am.  A return to former swim fitness levels of a few years ago, when swimming was a regular part of my week.  I miss it, but getting to a pool is not easy from home.  The first thing I did when we got home after a hearty cafe breakfast was txt my former swimming buddy;  it turned he had also done a 1km swim quite possibly at the same time as me.  That made me miss our swimming even more.

Spring cleaning the laundry is much easier than spring cleaning my head.  The course that I am attending one night a week is now at week 3.  We completed a questionnaire,  the first stage of a mentoring ‘awareness’ programme developed on the basis that ‘you can’t fix what you are not aware of’, which sounds logical.  60 questions, 4 different sectors of ones ‘being’.  Yes, No, or maybe the only options.  Then a scoring and filling in of matrices to figure out where you are in your awareness.  I thought the ‘no’ answers were probably more revealing than the ‘yes’ answers.

I have a daily practice of gratitude?  No.

Usually I think before I speak?  Not always.

At least twice a year I consciously consider my values?  NO.  (Sounds a bit flakey, frankly.  I would think values lasted most of a lifetime, once adopted.)

My career, work or service is a significant source of fulfilment?  No, I don’t have a job.

And so on.

I decided it would be a good thing to share, so he answered while I read out the questions.  Then he scoffed, and said it was obvious anyway.  I found this a bit disappointing, frankly.  Nowhere to go from there.  No opening for any further conversations about any of the questions, let alone his or my answers.

That was Thursday night.  Friday morning my horoscope said “Fix it.  Fix it!  It needs fixing and you are the one to do it.  “How?” is the question.  You won’t  know the answer, but your sincere intention is enough to fix it all.”  I can’t help but wonder why the US is bombing Syria and we seem to be on the brink of war with North Korea if all the Leo’s in the world can fix things.  Maybe we are not looking at the big picture.  Or just not sincere enough?

Thus, on Friday afternoon I cleared the crap off the table and set it properly, lit candles and made fish curry.  He was surprised at the table being set.  “Our hug quotient is way below 6,” I said,  (one of the questions – “I participate in at least 6 hugs in a day?”).

He hugged me and apologised for being so dismissive of the questions and process, and we sat and ate dinner like grown-ups.  No TV.  Little did he know the universe was on my side.

I read in Monday’s pull-out section of the paper about the power of intuition, gut instinct, call it what you like.  Sometimes we just know what is the right thing to do, or not do as the case may be.

6 hugs a day is actually a lot.  I said patting the cat does not count.  Like housekeeping, like cleaning out all the places that never get any attention, I can see this fixing carry-on is quite time-consuming but also like cleaning, so satisfying in a smug sort of way when progress is made.

The next job will be pulling out the fridge to see what is behind that.  I equate this with one of the big questions “It is easy for me to be self-forgiving.”  Maybe?

A tui does his Saturday morning housekeeping at the birdbath. 100% yes.

 

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