Moving through

Back from the official summer holidays.  It is all relative, of course, when you work from home, and work is only part time anyway.  There is something psychological about considering yourself officially ‘at work’ instead of ‘at play’.  Enough to make me feel like today I have taken a sick day.  I am not a regular sick day taker, but this morning I thought it was better to keep my sneezing/coughing self in splendid isolation rather than spread my malaise far and wide.

It was a relief to send a text message followed up with an email to advise today’s meeting, my one and only ‘work’ for the week, was cancelled due to ill-health.  I of course then continued to work from the comfort of my bed, dealing with various emails and matters of minor significance.  The payoff of modern technology, a good laptop, and a comfortable bed.

Yesterday was a big day too; the other commitment for the week.  An appointment at Dove House, a former traditional hospice organisation now reinvented to meet the holistic needs of those facing life-threatening illness.  From the moment I tentatively walked in the door to enquire whether it was the right building, until the moment I left some 3 hours later, I felt at home, nurtured, cared for, comforted.

They provide a range of services – I was keen to visit as soon as the Cancer Society Community Nurse said you could get massages.  Really? – put me down.  January the 11th was the next available appointment.  I love having a massage.  I’ve had massages in Vanuatu, Sri Lanka, Fiji, on a cruise ship in the middle of the ocean, Parnell, Blockhouse Bay – there is nowhere on Earth not suitable for a massage.  They said I had to be assessed for what help I needed first – seemed unnecessary frankly, when clearly I need someone to rub me with nice oil in a quiet, darkened room.

Without exception the people at Dove House are not only the caring, supportive types one might expect at a hospice, they are also fun.  Laughing, smiling, making jokes “You can make your own tea next time, I’m only doing this because you are new.”

The assessment was also a pleasant and helpful process.  The tour revealed an art class about to start.  It looked like Playcentre for adults.  “Come along next time,” the convenor cheerfully invited me.  I will.

My massage turned into reflexology on my feet.  Meltingly good, and targeted to my depleted immune system and blocked sinuses.  The treatment area, 4 separate rooms and a reception, is a five-star spa.  All aromatherapy and plinky music, but so easy to relax and enjoy the pampering/therapy.  The hour flew by, including full permission to fall asleep.

I cannot for the life of me remember why it was suggested I meet the medical consultant, a practicing GP who is available for medical conversations.  It was like talking to Marcus Welby MD (if you are old) or George Clooney when he was in ER if you are young.  Turns out the Dr spent time with Ian Gawler in Australia, the holistic cancer treatment man that was savaged during a radio interview when he was in NZ in October.  These people are my people.

By the time I left, raft of pamphlets in hand, booking made for another ‘treatment’ that coincides with an art day, oh and the last chemo cycle, I felt wrapped in a bubble of caring kindness.  You are hugged when you leave, no shaking hands.  New friendships are in the air.  For the first time I thought it was something I might want to volunteer to help.  Definitely their op-shops will be the recipients of my clutter, clothes and other items that can be up-cycled to a new life.

A thousand blessings on all of you.  Seriously, if you live in Auckland, NZ, and you face a life threatening illness, find them.  Dove House.  Go there.

On the way home I dropped off a late Christmas gift and left with a posy of freshly picked garden flowers.  What more could you want?

Meantime Obama has given his last speech as President of the United States.  Huge admiration for him.  A man says he didn’t mean to sail to Australia in a 6m boat with a 6 year-old daughter.  Really?  How very careless.  Life.  Goes on.  One chemo dose to go.  Just moving through.

The same universe that allows cancer cells to flourish created this flower - a miracle of design and beauty, home grown by Rose. Neither makes any sense.

The same universe that allows cancer cells to flourish created this flower – a miracle of design and beauty, home grown by Rose.  Both defy explanation.

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Groundhog Day

It never ceases to amaze me the benefits of a good night’s sleep.   Never mind the euphoria of a new love, or the excitement of an overseas trip, a new baby, a great concert.  Does anything compare to the divine feeling of waking up after a good 7 or 8 hours of uninterrupted sleep?  Perhaps this knowledge is something you discover later in life, when the converse – the lack of sleep and the subsequent downstream disadvantages – has haunted your nights periodically.  Or if you are unlucky, you are a regular insomniac for whatever reason.

I am awake at 12:41am.  I ascribe this to the wonders of modern science, in particular the wonders of chemotherapy and the management of it’s many and varied side effects.  The day prior to the administration of the actual chemo, one is required – advised? – to commence a short 5-dose course of steroids to lull your body into a false sense of ease so that it does not go berserk when the chemo hits your veins.  Downside?  Wired.  Can’t sleep.  Or so they say, so it becomes a reality because they said “don’t worry if you can’t sleep, it is the steroids.”  I wasn’t worried actually, in fact before the first dose of chemo I slept really well because I didn’t know any better.    Is it the steroids that also make my mouth tingle and food taste off?  And the dull sense of nausea that I know will last for the next 5 days or so, thankfully relieved by yet another drug?  Perhaps these other things are simply my brain facing up to the reality of ground-hog day – here we go again.

I am trying to look at this positively for the most part.  Absolutely 50% through this process regardless of how you count it.  AT LEAST 50% – some would say 75% since from tomorrow it is a mere 3 weeks until Dose 4, the final Dose.  Which is the deny the side effects of Dose 4 any status at all except bloody annoying because I need to get on with my life.  Tempting to think that way, but not quite reality.

Counting backwards, from now until December, New Years eve spent with my brother, sister-in-law and some mutual friends.  Lovely food, New Year celebrated at 10:00pm then we all went to bed.  Seriously, no point in staying up until midnight.  Time is a man-made invention of convenience anyway, in my opinion.  I look like him, I think.  In fact turns out he has more hair than me right now.  It was nice to have them here.

Pre-Christmas dinner with friends including a friend-of-friend who is now 5 years post-cancer.  So so good to talk to her.  She said “you are the only other person who feels the same as I do about mastectomy/reconstruction,” and we laughed as only members of an elite club can laugh knowingly with each other.  We will become good friends I think, upgraded from friends of friends.

And before that, the carol singing at the local park.  So cool.  So good to do.  It was day 6 of Dose 2 – typically a ‘bad’ day, and by the end of it I was feeling a bit wonky to be sure.  But boy it was fun.   We are on you-tube, I am in the back row, red hat.

What a great way to engender some Christmas spirit.  The faces of kids, watching a camel consisting of two men, absolutely precious, and enough to melt your heart.  Santa might be a big fat lie, but a sense of community and family with Christmas as the excuse is worth it regardless.  Also caught up with some good friends who were manning one of the BBQ stalls, and met one of them for coffee a few days later.  The singular, only conversation I have had with anyone since October when the word cancer was not mentioned at all, in 2 hours.  I love her for that alone.

Christmas has come and gone.  Family time, lots of laughing, lots of fun.  A strict adherence to the no-alcohol policy (OMG so hard to say no to french champagne;  to be honest the sip of 1995 french red tasted awful to my altered palette. So too the Millton biogrow certified rose, which normally I would love.  I really hope this is temporary like they say.  Right now though, when I am ingesting all manner of supplements to enhance my health and help deal with the magic of chemo, it seems madness to add alcohol to the mix.  Utter madness.  No so easy to deny Christmas cake and a few chocolates here and there, fresh ciabatta bread, Christmas mince pies.  Will any of these things kill me?  I really hope not, that would be annoying.  I figure while I am having chemo a little bit of what you fancy can’t hurt.  In truth the ‘bad food’ probably no better or worse than a glass of champagne, but I think my liver will thank me.

I have balanced this intake of previously deniable food delights with an uptake of exercise.  Swimming – bliss!!!  I have swum for exercise for 15 years or so, only stopping when I have been working from home and it is just not feasible to drive to the nearest pool.  So to be immersed in the ocean again, even though it is still cold – about 18 degrees – is delightful.  Wearing a swim cap of course, because I am all but bald.  From a distance, completely bald.  Up close, a very thin covering of fine hair that has thinned out more over the last five days or so, as per dose 1 & 2.  Eyebrows still hanging in there – small yah.   Swimming also tests my recovery from surgery and to my delight I have pretty much full movement of my arm.  Swimming will complete the recovery over the next month or so.  Kayaking more of a test, and again a great way to complete physical recovery.  Up the Tutukaka harbour, past all the big houses perched on the roadside.  A seabirds-eye view of this gorgeous part of the NZ coast.  A family kayak trip outside the heads and up the coast a bit, hopeful of seeing the dolphins reported to have visited last week, but settling for a family of gulls perched, like the houses, on the rocky outcrops.  Serious exercise and a serious test of the surgeons skill, which he passed with flying paddles.  Walking to the Tutukaka trig, a warm up of more to come.  All part of three days of festivities spent with family who are, miraculously,  also dear friends.

Back to ‘our’ beach to finally relax.  Walking is important – we are in training for the Kepler Track.  In exactly 3 weeks time we will be on our last night on the track, sleeping (I hope) in a DOC hut with 40 or 50 other trampers.  Today was the ultimate test of our preparation.  A 14.5km 4+ hour walk around Tawharanui, around the hilltops that allow fantastic views of the Hauraki Gulf even on a cloudy day.  Gasping when the clouds clearing for an hour or two and we were in the full heat of the midmorning sun.  Thankful when the clouds returned.  All with pack on back, tramping boots & hat.  Full attire.  There were a few others out and about – amateurs with no packs at all!  Phuuu to you, day walkers, there is serious business underfoot.  Came home to a quick lunch and a 2 hour recovery rest.  No wonder I can’t sleep.  Feeling confident now, that despite earlier suspicion that it would all be too hard, I can do this.  Four in our party.  Another meeting necessary to plan who will carry what.  Shared toothpaste, shared first aid kit, shared billy to boil the water the make the dehydrated food edible.  And whatever else we can share to reduce the weight load.  We agreed to take the water taxi across Lake Te Anau thus reducing the distance on day 1 by some 6 kms.  Our actual walk will start at the bottom of the hill, and we will spend 4 or 5 hours zigzagging upwards to the first hut.  Booked just a few days before diagnosis, I am now grateful to have something else to think about for the next 3 weeks.

My body feels a bit battered to be honest, even though, until tonight, I was feeling fine.  I don’t like having purple ‘moons’ on all my nails, and yes I know I should be pleased my nails are not falling off completely (not yet anyway).  I suppose it is because I can see it all the time.  I can’t see my baldness unless I look in a mirror, although I can feel it.  I forget completely about the arrow that is the scar running from the middle of my chest right under my arm, where it splits into the tail.  A nothing, a minor thing.  I am pleased with the alterations to my swimming togs that now include their own customised (2 pairs of togs, completely different styles) prosthetic, which makes my asymmetry invisible.  In fact my togs are probably the most comfortable of all my clothes.  I consider it a small tribute to both my inventive, creative parents that I can fashion a prosthetic out of some old togs and a plastic mesh bath-cleaner and it works.  YES.  thanks Mum and Dad, for the fine ‘can-do’ example you both set us.

Time to try sleep again.

Brotherly love.  He is taller and currently has more hair than me.  He is my only brother, and it seems like yesterday we were the two little ones of four kids.  Happy New Year mate.

Brotherly love. He is taller and currently has more hair than me. He is my only brother, and it seems like yesterday we were the two little ones of four kids. Happy New Year mate.

 

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Stardust after all

The thing about being at home is you have time on your hands to over think everything.

When I first saw the mammogram image of my cancer, it struck me that it looked a lot like a comet – a round mass with a tail of little bits trailing out behind.

I was bold enough to share this imagery with my sisters.  It seemed to me that a small piece of the universe had crash-landed in the wrong spot.  Needed to get out of there and get back to the stars.  Instead of chemotherapy being a poison designed to all but kill me in an effort to make sure I live, I chose to call it stardust, coming to find the lost comet, and take it home.  One of my sisters has, since then, scoffed at such fancy.  And like all sisters do, the other one told me.

I have alluded to the fact that when I am out walking up the 145 steps that are part of my little route around the Manukau Harbour,  I welcome the stardust, delivered to me via a high-tech pump sucking it out of it’s plastic bag and shoving it into the back of my hand at a carefully measured pace.  I then ask it to find any of the comet left behind post-surgery, even though I am sure there is none to find.  I ask it to take anything it finds with it, and I thank it for coming.

Time in the cosmic sense is far bigger than anyone can really comprehend, but in my little stay-at-home world I have finally got around to googling whether we are in fact made of stardust.  And the answer is yes.  Published in the National Geographic, 2015, among other articles.  40,000 tonnes of cosmic dust arrives on earth every year.  Every thing that is here is made from the explosion of stars eons ago.  We can play with it, rearrange it into a red Ferrari or a purple clothes peg or whatever else we fancy, but we cannot create any more.

In the article they say “Everything we are and everything in the universe and on Earth originated from stardust, and it continually floats through us even today. It directly connects us to the universe, rebuilding our bodies over and again over our lifetimes.”

So there.  More:

“Our bodies are made of remnants of stars and massive explosions in the galaxies. All the material in our bodies originates with that residual stardust, and it finds its way into plants, and from there into the nutrients that we need for everything we do—think, move, grow. And every few years the bulk of our bodies are newly created … we’re not fixed at all. We’re more like a pattern or a process. And it was the transience of the body and the flow of energy and matter needed to counter that impermanence that led us to explore our interconnectedness with the universe.”

And on comets and other space stuff:

“There’s still an awful lot of dust floating around.  When we say that as an astronomer, we can mean anything from objects weighing micrograms, which you wouldn’t even see unless you had a microscope, to things that weigh many tons, like comets. All that stuff is still there, being pulled around by the gravity of the planets and the sun. The Earth can’t avoid running into this debris, so that dust falls onto the Earth all the time and has from the very beginning. It’s why the planet was made in the first place. Nowadays, you don’t even notice it. But eventually all that stuff, which contains oxygen and carbon, iron, nickel, and all the other elements, finds its way into our bodies.

Is physical malfunction part of the cosmic order?

There are healthy processes, such as growth, for which we need cell division. Then there are processes when things go wrong. We age because we lose the balance between cell deaths and regeneration. That’s what we see in the mirror when we age over time. That’s also what we see when diseases develop, such as cancers. Cancer is basically a mistake in the DNA, and because of that the whole system can be derailed.”

http://news.nationalgeographic.com/2015/01/150128-big-bang-universe-supernova-astrophysics-health-space-ngbooktalk/

I am going to stick with my stardust theory.  It has worked well so far.

Dose 2 yesterday.  A long night.  I was never going to get any sleep anyway what with the steroids taken to minimise any allergic reaction, the nausea coming and going, and a full moon due tonight. Waste of time even thinking about sleep really.  Got up early and took the anti-nausea on an empty stomach, went to sleep for an hour or so then got up to take the steroids with food – you need a degree in operations management to get through this stuff.  Went for a walk, shortened because I am not exactly 100% today, but actually pretty damn good all things considered.

A bit of business to attend to.  I find myself very impatient with the inept and inefficient.  People taking shortcuts without paying any attention to detail.  People being paid to do better.  People making suggestions beyond their level of expertise.  Hummph.  Still it has filled in the morning, in between picking some flowers from the garden.  There are flowers everywhere at the moment.  I have been taking particular notice of the coming of summer, and the flowers that are around in gardens everywhere.  Lots of red and white.  pohutukawa, manuka, roses, daisy.  Glorious.  Mostly we are too busy to notice the minutia of the passing of time.

There was a full moon the night before I had surgery in October.  I got out of bed because I couldn’t sleep and sat and watched it for a while.  Maybe I will find myself doing the same tonight, wondering where the time has gone.  My horoscope for that week said “Choose your moment and you can rid yourself of an unwanted burden.”  Horoscopes are so compelling for me – is it because I am a Leo?  This week it says:

“Full moons can bring simmering tensions to boiling point but they can also settle a matter once and for all. And with Wednesday’s full moon hooked up to Uranus, the Liberator, a release of some description could be in the pipeline. A creative endeavour may be nearing completion or a romance on the threshold of becoming a full blown relationship.   Take everything in your stride because the less oxygen you give a problem the smaller it will be.”

Less oxygen to the problem sounds like a good idea.  Just depends which problem.  Yesterday while I was hooked up to the chemo machine I found myself being dragged into a disagreement about whether I had in fact had my head shaved or my hair clipped.  WTF is that about?  Did it matter?  I know I had a No 4 blade – who cares whether clipped or shaved.  It was really short.  It is now mostly gone.  I am so pleased I had it slipped – lets compromise – before it fell out.  Simmering tensions perhaps?  On the threshold of a full blown relationship?  See in one of my teary moments, a few weeks ago now, I said I thought it was time to get married.  Just us with our boys.  Flowers from the garden.  There has been no response except to say that perhaps the Oncologist had a pill for this unexpected side effect.

One of the few plants that were here when we bought the house 23 years ago, this bougainvillea is just gorgeous and right on time for Christmas

One of the few plants that were here when we bought the house 23 years ago, this bougainvillea is just gorgeous and right on time for Christmas

 

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Crunch time

Yes, they told me it would happen, and now it has.  Some people said I was being premature, having my hair shaved off.  I thought not, but in the last few days I did begin to wonder.  This morning over breakfast I wondered if the few short hairs that fell out when I scratched my head were just the normal amount that I got growled at for leaving in drifts on our polished floors.

After a walk and a shower and a bit of mucking around, I realised that it is not so much a drift of short hair but a wave.  I find I can pull hair out (doesn’t hurt) in clumps.  I am partly intrigued and partly mortified.  I find myself close to tears.  I am crossing over into cancer treatment territory.

I cannot really complain.  Yesterday was check-up day, firstly with the oncologist.  I showed him my chart of side effects, and he mulled it over and said “so, not too bad then.” No, not too bad.  I think I have worked hard to make it that way;  it is not a random event.  He didn’t recognise me in the waiting room.  I had taken off my shocking pink sunhat because it was hot, and my shaved hair has grown to an almost chic length.  Chic if I was many years younger with no wrinkles.  “It suits you” has been said many times, but I am not convinced.  Nowhere to hide.  Quick in the shower.  Quick to dry.  All that is good.

Last week I got dismissed by the counsellor “you are coping so well, I don’t think there is any point in you coming to see me again,” she said.  I concur actually;  there are others who probably need her more than me.  That day had started quite badly in the scheme of things.  My car would not start.  I was so early that I had time to walk 20 minutes to the train station and still be on time.  Undefeated.  The train ride home was much more interesting, and enough to make you travel on public transport all the time.  A woman and her daughter were the only others waiting for the train.  Eventually she spoke to me.  “Have you just had treatment?” she asked.  I explained that I had just been to see the counsellor but that I was having chemo, yes.  I laughed and said I had hoped my head attire was fashionable rather than a public symbol that I am having cancer prevention treatment (a distinction I am determined to make, even if only to myself.  “You remind me of me,” she said.  Much younger than me, diagnosed at 31, travelled from Aitutaki to Auckland and has stayed for 3 years, will stay for another 2.  Horror story of radiation treatment burning her.  Chemo for a year – showed me the scar on her chest from the port.  She said her daughter was embarrassed that she would talk to a stranger.  I laughed and said anything you do when they are 17 is embarrassing, but that it was nice to talk to her.  I said that I had been to Aitutaki, and that if I go again I will track her down.  We waved goodbye at my train stop.  She ascribed her recovery to God.

I am reading a book called the Schonberg-Cotta Family.  An elegant dark green volume with embossed gold patterning, awarded as 1st prize, class attendance,  to Cyril Hamilton, in 1911.  It is, I hope, the true story of Martin Luther.  I haven’t checked yet on google because it is nicely written and I am enjoying it, even if it turns out to be part novel.  It does quote Martin Luther as saying “If we will only consider him in his works, we shall learn that God is nothing else but pure unutterable love, greater and more than any one can think.”  This is said 1513.  The monks were busy selling ‘indulgences’ – cash for forgiveness of sins.  Lots of cash.  No hope for the poor.  Along comes Martin Luther and turns all that on it’s ear.  God loves and forgives everyone, for free.  I suspect it does not end well for him.

I am not a practicing Christian, but my idea of God is fairly close to the idea of ‘pure unutterable love’ only I see it as the collective love of mankind / mother nature / the universe or something like that.  I don’t really believe in a God that lets bad things happen  or that we can ask to do stuff that we want.  I don’t go for the extensive ceremony we have built around the Christian message, but I do strongly believe we ought to treat people as we would like to be treated.  I have received lots of love and support during what can only be described as ‘my time of trial’ and I am grateful and pleased that I know so many nice people; I don’t think it is an accident.  I am surprised that some of the people I thought would be closer to me are not, but it is of no consequence to me.  Is this how God works?  Maybe.

Anyway now I am definitely going bald, and I guess I will get over it once it has happened.  The process is a slow kind of torture.  Let time I had hair this short I was 9 months old.

Not looking quite so chipper immediately after having my head shaved.  Then it grew, now it is falling out.

Not looking quite so chipper immediately after having my head shaved. Then it grew, now it is falling out.

"She looks just like the others" my grandmother famously said.

“She looks just like the others” my grandmother famously said.

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Alone again, naturally

To fill in the day before meeting my Oncologist for the first time, I went to the zoo.  Charlie the alpha orangutang was hiding under a sack, and I so so wanted to do the same thing.  I got a toy from the gift shop, I have called him Reuben after my Oncologist, and he is coming with me to every treatment.  I have a sack for him.

To fill in the day before meeting my Oncologist for the first time, I went to the zoo. Charlie the alpha orangutan was hiding under a sack, and I so so wanted to do the same thing. I got a toy from the gift shop, I have called him Reuben after my Oncologist, and he is coming with me to every treatment. I have a sack for him.  I think Charlie probably feels very alone most of the time.

For quite a long time I have felt that we are, in the end, all alone with just our thoughts.  Today is the first day for some time that I have had alone, and I like it.  Possibly because I know that at the end of the daylight hours, someone else will arrive to be alone with me.

It is really windy – windows are slamming shut and thing are moving around outside of their own accord.  Mother nature in charge as always, despite what we like to think.

I have a new normal now.  It is day 7 of a 21 day chemotherapy cycle that I will pass through 4 times.  My new normal is feeling a bit like you are getting the flu, or that early stage of being hungover when you aren’t quite sure whether it is food or drink or sleep that you need to make the malaise go away.  In most circumstances going back to bed usually helps, and it helps for me too.

It is a very self-indulgent life for me.  I get up when I feel like it.  I aim to go for a walk in the morning as that is best time to kick start my metabolism.  I live close to a big harbour of sand banks and ever-changing colours, so I like to walk there in the fresh air.  This morning the waves were crashing against the bottom of the stairway to the seashore;  it is high tide and windy and I feel the spray on my face.  I have adopted this spot as my own.  A tiny little stretch of sand where I stand and do my arm exercises (I estimate 95% of normal movement restored in 6 weeks almost to the minute since surgery) and take a few deep breaths to greet the seabirds and the harbour that stretches out before me.  One day last week a man was there fishing.  We did not acknowledge each other, but I did wonder briefly if we would develop one of those ‘Lady in the Van’ type of acquaintances should we both continue to frequent this lonely spot.  He didn’t seem to be having much luck.  I continue along the path, an ancient Maori walkway according to the signs, to the point where there are 145 steps more or less in an unbroken run.  Straight up, when I come from my usual direction.  This has become the spot where I chant in my head.  Nonsense about welcoming the stardust that is chemotherapy into my body, asking it to find any remaining remnants of the comet that became my cancer, thanking it for coming and saying goodbye.  145 steps is quite a lot;  a boost of some sort is required.

By the time I get back home and have breakfast, a shower, read the paper and possibly indulge in some meditation, I feel terrible.  Take some panadol, and go back to bed.  But I know that it is good for me to move, to get my body functioning properly, and to clear my head.

By about now – mid-afternoon – I can watch a movie or do some actual thinking about various items I am responsible for.  Then it is dinner time, then I return to bed and do it all again tomorrow.

According to the predictions, this is the worst phase of the chemo cycle.  I hope they are right.

I consider myself lucky actually, to have the time and space to do this my way.  I don’t have to care for small children, or worry about running out of sick leave, or losing my job (I don’t have one).  For those people who have all these added burdens, I send you kind thoughts that you will get the support you need.  For me, in my new self-centred life, I find it quite a challenge to gather my thoughts together about having HAD cancer, because I am sure it has been removed.  I find myself pondering on what has made this an OK process for me, quite apart from the excellent medical care and medication.  These are my conclusions:

  •  Preparation pays off – before the surgery even, I was taking extra care of my body-temple.  I have eliminated stuff from my diet, added in other things.  I think it all helps.  Sorry to the cancer patients who cannot give up smoking and drinking, but with all due respect you need to look after yourself and not just put your life in the hands of the Drs.  Be part of the solution to living well.
  • People like to help – I just got given a bag of lovely NZ pure wool, to make what might be a lifetime supply of soft prosthetics with.  Free, just because I asked.  It smells of sheep still, and I prefer that to polyester.  It is a reminder that this is for the rest of my life, unless by some cosmic shift I decide to have a reconstruction.  It is also a reminder that surgery was 6 weeks ago, that it went very well, was very timely before cancer had a chance to spread, and that I have recovered without difficulty and am aiming to be able to do the ‘mermaid’ pilates stretch properly within 3 months.  I might even go to a public pilates class tonight.  My sister stayed last week so I was not alone for the first cycle. She said she can’t fix it for me but she can spend time with me.  Bless.  The ladies in the local choir formed for the upcoming Christmas in the Park said they are praying for me.  I don’t even know their names.   I decided to join the choir prior to knowing I was about to start chemo so it is something of a point of honour to turn up.  People really like to help, and the least you can do is let them.
  • Taking control gives you well – control.  I got my hair shaved off a week ago because I really could not face having it fall out in my hands.  It is predicted to start thinning later this week.  I now have a week’s growth since then, and it is almost but not quite publicly acceptable.  People asked me why I wasn’t waiting until I was sure it would indeed fall out, and I said I couldn’t see why it wouldn’t, given the statistics.  I am going to be faintly embarrassed if it doesn’t but I have a line-up of hats and scarves on hand.  Managing my hair loss was, I thought, potentially a melt-down moment, so I got a friend to come with me.  It wasn’t so bad, it was almost funny, as long grey curls of soft hair fell into my lap.  I look forward to having hair again soon, and I look forward to this part of my treatment being over.   I know that I will have done everything I could to maximise my life expectancy.  No one will be more surprised than me if I have a recurrence, and I don’t think I will, but if I do, I will know I tried my best, with the support of the best of medical care and the best of complementary therapies – yoga, meditation etc.  For anyone interested check out Ian Gawler, who talks about peace of mind, living or dying.  Same for all of us.  Take control.
  • Live it – I read a book by Laurence van der Post about being a prisoner of the Japanese during WWII.  (Merry Christmas Mr Lawrence).  He is a pompous writer but it is an interesting story.  He encouraged the prisoners under his command to accept that they were going to be there for a while – they set up classes in Japanese, had a theatre group – generally continued living as best they could under the dire circumstances.  Others were inclined to treat it as an absolute horror, quite separate from their reality and to be endured then ignored.  Those that lived it, survived it in a much better state of mind.  I feel that same applies to cancer.  Live it – explore every dark and scary corner of information and imagination. Don’t leave all the thinking to the experts.  I have huge respect for all of them, and I have done my best to understand what they are talking about out of respect for them, not because I don’t believe them or I want to argue.  I just want to understand, to be informed, to be part of a conversation not just a (formerly) diseased body to be treated.  Sometimes it feels like all this is a dream.  Did I really have a mastectomy?  Am I having chemo – am I one of those women now with the hats and slightly scared look on their face?  I’m afraid so.  It is my life.  I wondered briefly if I was a bit mad.  Why am I not just a bit sad about losing my breast?  Is that a normal reaction?  Losing my hair – again – not sad.  Weird?  One of those things is permanent but very private, the other is temporary but very public.  It makes a huge difference.  I go walking in a baggy jacket with no prosthetic because it just gets hot and sweaty (and until the wool was sourced I only had 1) and I figure no-one is looking at me anyway.  This week I have a meeting to go to where I will be ‘on show’ and indeed need to function pretty much at the top of my game.  I will wear my amazing red scarf and red lipstick and brave it out.  This is my life.  I am going to live it well.

I have a journal of the day to day minutiae but I don’t think it is that interesting really.  It is a record of fear of the unknown, acceptance of the facts, showing up for treatment and moving through this process like millions of women before me, and I don’t think my random thoughts are any use to anyone.  My considered thoughts – that preparation pays off, that people like to help, that you should be in control of this, and live it consciously and well – I send out to anyone who has been diagnosed with cancer and is embarking on the pathway of treatment and recovery, and I wish you all the best.

If you need a little something to make you feel braver, look for what the world is sending you.  I have a soft orangutan toy now called Reuben.  I am going to embroider on his sack the dates of each treatment.  I really do think of the real creature stuck in the zoo hiding under his sack and feel just a bit less sorry for myself.

On the day of the first chemo, I googled to see what Saint day it was.  There are always numerous to choose from but 22 November is St Cecelia’s day.  There is a window dedicated to her, patron saint of music, at St Lukes Mt Albert which if I was claiming a church would be my church.  I designed my first ever landscape design project based on a music teachers courtyard, and ended up finding out all about St Cecelia in the process (not exactly a happy story but still she is a major saint now).  While we were waiting before the appointment (always early) I could see the statue at the top of the Mercy Hospital (Jesus or Mary or someone else significant in flowing robes) and I took a photo of it on my phone.  As I was putting the phone away it started play music – I swear I DID NOTHING to make that happen, but is was one of Bach’s Brandenberg Concertos – gorgeous and one of my most favourite.  A train of coincidences, or the universe encouraging me?  I will accept whatever helps.  I suggest you do the same.

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Pays to have a Plan B

So neither of my predicted outcomes turned out to be the right answer.  Despite very, very good news of a negative HER2 test, it seems that now you get treated according to the nature of the beast, which makes sense.  In this case, an aggressive grade 3 tumour, that requires chemo as a preventative because a reoccurrence is likely to be multiple sites and therefore pretty much fatal.

On the 22nd of November, treatment starts.  In February next year, it finishes.  Something to cling to – there is an end.

In the void between, bonus time.  How many people have the luxury of some ‘time out’ from the day to day to focus on what gives the most amount of satisfaction?  Silly things take on greater significance.  It is serious fun to read the humorous cards in the card shop – my pick is The New Yorker cartoons.  Priceless.  Dog walking turns to coffee in a cafe and some shopping but suddenly it doesn’t matter – did it ever matter whether we stick to the plan?

The US elections have delivered a madman to the White House.  I am no fan of Hilary Clinton – she strikes me as power-crazed rather than driven by a desire to ‘serve’.  I doubt that her accounting is any more or less dodgy than Donald Trump if someone cared to look close enough.  But she is not stark raving bonkers.

What is indisputable is that the ‘common man’ has had enough of shouldering the burdens of economic woe while the 1% carry on and in fact grab an even bigger share of the pie.  Who can blame them for voting for the guy that appears to speak for them?   The proof will be in the doing in due course, but in the meantime, a poke in the eye to the so-called ‘elite’ who must take responsibility for the result.  Guess Hilary did not have a Plan B.  Nothing in the paper about her this morning.  Yesterday’s heroine.  She can always go home to Bill and the grandchildren, or spend some of the money sitting in the Clinton Foundation doing worthy things.

Is this a man vs woman thing?  I personally don’t think so.  I think she is just untrustworthy and suffering a bit from the perception that she felt it was her right to be President.  I think she really believed that – destined for greatness.  And what is with trouser suits?  Power dressing?  Practical?  I have never got over her being Vogue’s Woman of the Year, front cover, in blue velvet back when she still wore dresses.  The year her husband was almost impeached for his philandering ways.  Woman of the Year, standing by her man.  What sort of statement is that?  Tells me she will do anything for power.

The world will still turn, although the axis might shift a little if Trump really is a fan of Putin.  They can both do 18-shot rounds of golf – God knows he owns enough golf courses. They could invite the lunatic from North Korea and the murderer from the Philipines to make up the foursome.

The other person that did not have a Plan B is the son of a friend.  Now residing ‘at her Majesty’s pleasure’ in jail for theft and generally misbehaving to fund his P addiction.  24 years old.  Doing time.  Plan A was relocating home when he breached his bail conditions.  His parents said no, not possible.  No Plan B.  Off to jail prior to his court case.  Pleaded guilty, was sentenced last week to 9 months, first conviction, will do about 4 months including his remand time.  The parents have no Plan B either.  There is nothing they can do any more.  It is heart-breaking.  I knew this kid when he was 5 or 6.  What happened?  No answers.  They are living a nightmare, a life sentence.  They have actually thought at times that if he died, it would be the best outcome for everyone.  Imagine thinking that of your own child.  Imagine being that helpless and at risk of serious harm.  Imagine if it happened.  We are all hoping that he will now realise that jail is not a life style to aspire to.  He has dug a big, big hole, and there are limited resources to help him out of it.  There but for the grace of God goes any parent in this era of P.

So a big week.  It feels good to have a plan.  Roll on February.  Tickets to Bruce Springsteen to celebrate the end of treatment.  I will be the lunatic bald lady down the front dancing like there is no tomorrow.  For some people there really isn’t.

Little things matter - some home-made graffiti on the inside of the car shed door.  Still makes me smile.

Little things matter – some home-made graffiti on the inside of the car shed door. Still makes me smile.

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Patience may be a virtue for some

“About a week.” he said, casually, like it is a minor matter.  It is now 2 weeks, still no definitive answer.  There have been tears, there has been research, there is no comfort to be found.  My short term fate is literally on a toss of a coin.  Heads (is heads positive? I think so) I lose, tails I win.

Today is the real and actual day as far as I know.  At 5:30pm I meet my new man, an Oncologist.  I have made some graphs of survival rates, and I want to know why I at (a  mere) Stage 1A am lumped together with the unfortunate women at Stage 3, and given the same what I describe as poison for a year, potentially.  Or, if the coin falls the other way, not at all.  I will need to move on from poison, and re-frame Herceptin and it’s accompanying chemotherapy as a magic elixir that hunts down any remaining cancer cells and kills them dead.  The trick of course, is the ‘any remaining’ because if there are none, then a year’s worth of magic elixir is a complete waste of time and valuable medicine.  But who is to know one way or the other, so of course unless you are really really brave, you take the magic potion, put life on hold and suck it up with gratitude.

This unfortunate time lag of two weeks has been something of a challenge for me but also something of a blessing because I did not comprehend that a positive result means a year of treatment.  I did not know it is delivered via a port in your chest that stays there for the year.  Had I walked into a meeting two weeks ago and been told that I would have been thunder-struck.  I have had time to find all this out, rage against it, think of a million reasons why it should not happen to me, and finally accept that if that is what it takes, then I guess that is what I will do.

Now I am thinking about all the ‘projects’ large and small that are for the most part still just ideas in my head.  I can get back to playing the piano.  I have already joined the local church choir for the Christmas Carol service.  I might work a bit harder at drawing and painting.  I can grow vegetables, I can sew, I can make things.

What I can’t do is hold on to my lovely work in PNG.  While my boss has been very kind and flattering, he cannot wait for me for a year.  Has already appointed new managers.  Maybe I can be the relief manager sometime.  Maybe I have come to the end of my usefulness.  It was a hell of a project, if that is the case.  Wouldn’t have missed it for the world.

I always wondered what my life would be like if I was rich.  Now I know.  Sleep until about 8:00am.  Get up, go for a walk, return for some yoga/pilates.  Breakfast with the paper and crossword.  Meditation.  What do you know, it is lunchtime already.  A few hours to do something constructive (see list above, or maybe a ‘work’ project) then it is dinner time.  I’ve been practising this lifestyle for a week, and I must say I like it.

Since filling in the hospital forms a month ago, I have lost over 4kgs, just 1 of those by way of surgery.  Change of diet?  Change of lifestyle?  Nervous energy?  Not sure exactly, but I am surprised.  Surely one bowl of organic full cream milk a day does not create 3 kgs of fat?  The test will be what happens next.  I will have several iterations of clothes (well jeans really, the rest are fairly flexible) to suit and hope of course that this diminished me is somewhat permanent.

I have been kept busy with lots of visitors and things to do.  I have been inundated with the most amazing bouquets of flowers.  On Sunday I got given a posy of home-grown roses.  You know what?  They have been the most enchanting of all.  The buds have all opened, they smell like real flowers, and they are just beautiful.

Today of all days is my ‘alone’ day, so yesterday I decided it is time I went to the Zoo.  Who can fail to be cheered up and kept mindful surrounded by cute animals?  I haven’t been for years and really one needs a small child but too bad.  Public transport makes it easy to continue on to the appointment that is looming at the end of the day.  Easier to have just one car to get home in.

I thought waiting to see the surgeon was hard, then waiting for the surgery.  Nope.  Both of those things good.  This is the worst.  Either good (oestrogen blockers only) or bad.  Quite a lot riding on it.  Got to go and catch a bus, no time for a photo.  When I get home all will be revealed.  Cross your fingers…

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