Things are going swimmingly

The rain is coming soon – the first few drops have sent me scurrying inside.  I have been weeding the garden.  Hardly earth shattering news, but for me, right now, something of a triumph to have both motivation and energy to apply to the task in hand.

My new health regime requires organic vegetables.  They are easy enough to purchase but generally have a price premium.  Common sense dictates the logical answer is to grow my own.  The lettuces that went to seed late last year have been yanked out of the planters and replaced with kale and cabbages.  You don’t need lots of space to grow a few veggies.

I decided to get some more seedlings in advance of the rainy weather predicted to hit on Friday, now finally arriving.  I cleared out a small raised bed beside the house, added some new compost, and planted broccoli and perennial spinach, beetroot seeds, rocket seeds, and a couple of marigolds to deter the white butterflies.  Watered them all in, and stood well back.

Saturday morning I went out to check on their well-being and was horrified to see that the snails had stripped one broccoli to the stem.  Organic vegetables don’t include using snail bait that leeches into the soil.  Based on experiments in plant protection at Tawharanui, where small plants get chomped by rabbits, I have decided to use old onion bags pinned down with kebab sticks, so my plants now each have a ‘skirt’ I hope will prove impassable to your average garden snail.  I have also used crushed egg shells on a few that are in a pot nearby, so it will be interesting to see what works best.  Both I hope.  Rocket seeds are up already.

Up-cycled onion bags, up-cycled egg shells, and rocket poking through. Big strides in three days!

All this is part of piecing my life back together.  I have started a course on just that subject, designed to help people get ‘off’ active treatment for illness and back to a normal life.  Have only been to one session – I think it will be OK, and it is always informative to talk to other people who have had a similar experience.  We had to write down what was concerning us.

To be honest I am not spending much time being concerned about anything.  I have made my future treatment decision, and am putting my trust in my own body, mistletoe, and cabbage pills.  No point in revisiting it.  Not like buying a new pair of shoes, where you always wonder whether they really are worth it.  This is not a game; there is no second chance.  I have even added value to the next 5 weeks of driving across town to attend the wellness course by booking into a pilates class en route.  To sharpen up on technique, and ensure I don’t end up lopsided.  An ‘end of treatment’ treat.  They didn’t say anything about that on the first night.  I have an extensive list – including a fitbit.  Seems the secret to fitness longterm is heart recovery rate.  That calls for adopting the latest technology I think, I can’t be bothered doing the maths when a small screen will work it out for me.  Some Jo Malone perfume is also on the list of treats.

I was however slightly anxious about the oncologist.  I’m picking not many of his patients say “Yeah, nah”.  Several enquiries led to one possible potential replacement in a different city, so not that practical.  It seems oncologists are of a kind, one and all.  I joking said to the tea lady at the cancer treatment centre that she could prescribe the drugs just as accurately as the oncologist.  Somethings are not so funny when it is almost true.  To erase my anxiety, I emailed him this week with the “yeah, nah” message in advance of our next meeting sometime in May.  Part of me thought he might well say, “yeah, nah” back, and suggest that I might be best served elsewhere.  Instead he said “I trust you have made an informed decision.  It is not what I would do.”  Fair enough, mate, but you are not me, and by the way, good luck with the hot flushes, if that is what you would do.

I have to conclude therefore, that the course has already taught me one thing – sort it out, don’t waste time worrying about what might happen.  It probably won’t.

Reminds me of a homily recently relayed to me:  These are uncertain times, so sometimes the best course of action is to create some certainty for yourself.   Metaphorically  speaking, if you are in a boat and it may or may not sink, get into the water, at least you will have some certainty.  I like it.  On Friday night our friends thought it was madness; you should always stay in the boat until the captain says to abandon ship (they are both engineers).  But that was before, when the world was predictable.  What about now?

I cannot read another word about Donald Trump.  He is beyond words.  I did see today there is a website for people who voted for him to post messages.  Someone has apologised and, as a Doctor, suggested he needs professional help.  Quite.  John Key gave his final speech in the NZ Parliament this last week.  A review in the paper says he was a joker, everybody’s mate, and explained why he was nick-named the smiling assassin.  Frankly not traits I valued in the leader of the country.  Bye bye.

This week also saw some bleating from some fellow co-owners of a commercial building.  I am currently being paid to be the client representative.  “I incurred costs” they moaned.  If only they had said what they were up too, I could have saved them the trouble/cost.  It was something of a satisfaction to be able to quote the minutes of the AGM.  Deafening silence has ensued.  The best bit though, was a message of support from a fellow committee member, who in addition to endorsing my stance said “good to see you are back to your old self”.   What?  Bitch?  Stickler for process?  Will not be pushed around by self-interested lawyers?  All of the above I hope.

I had a visit yesterday from my grown-up cousins.  I say that because they are the two oldest cousins, and I am one of the youngest.  There are 15 in all, 13 are women.  I was always a bit in awe of them, but of course the age gap has narrowed from my childhood days.  They were both missionaries; intelligent, well travelled, well spoken, well read.  We exchanged musings on the state of our parent’s generation relationships, our children, our lives.  The value of quality friendships that nurture and inspire, how life is too short for friendships which drain you rather than lift you up.

[Side issue:  my new cancer friend said “love you” as we parted after lunch last week.   I did think it was a strange thing to say but then, these are strange times for both of us.   When I saw her this week, before I had even sat down she said “Did I say that? I’ve been so worried you would misunderstand.  I only say it to my daughters.” and turned bright pink.  Laughing out loud, I quickly assured her I did not read anything untoward into it.]

My cousins declined to take any of our great-grandfather’s Bible pages (published in 1874 but now falling apart), but talked about how in China a village sustained their spirituality and hid their Bible by having one page each.  One of them was a librarian, as was my Mother, so it was comforting to think a librarian can justify destroying a book and a Bible at that!   “You’ve gone to a lot of trouble,” they noted.  You do, don’t you, when the big cousins are coming.  Vegetable frittata with salad, fruit flan.  Clean bathroom.  The least one would do.

So here I am, out of the boat and in the water.  Not brave enough quite yet to go to a business meeting bare-headed.  Waiting not so patiently for hair to regrow on my head; noting with some regret that it is returning elsewhere.  Feeling fit and strong, and suddenly very aware of how un-strong I was during chemo.  I have a to-do list, and I have a tentative timeframe.  5 more weeks of the course.  5 weeks to get to the end of my to-do list, grow enough hair to attend job interviews, and decide what the perfect job actually is.

I can’t touch the bottom, I don’t have a life-jacket, in my metaphorical adventure, but I can swim really well.

Got asked if I wanted some guavas, got given far too many; how I wish my future was a clear and how I hope it is as rosy as the jelly…

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What now?

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

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

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

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

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

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

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

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

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

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

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

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

Bless.

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

The future beckons.

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

I don’t even know where to start.

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

        Bruce Springsteen

Great concert, shared with friends.  Perfect Saturday night

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

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Staunch

We booked to do the Kepler Track, a 62 km long ‘Great Walk’ in the mountains and lakes of Fiordland, southern New Zealand, after talking about it for several years.  We had been enchanted with the idea of doing the Kepler but never quite got in touch with the reality.  In the meantime we climbed Mt Taranaki, in the North Island, a few years ago.  We did the Hollyford Track a couple of years ago, but the ‘glamping’ version, where your packs are carried to lodge nestled in the beautiful forest of the Hollyford Valley, and a bed with white sheets and a hot water bottle awaits your tired body at the end of the first of two days.

In casual conversation with friends, whom we knew had done a few of the other tracks, we decided the time was right for action.  On a Friday night, as they headed for the airport and a flight to Malaysia (and a trek through the tropical jungle there) they called and said “Yes, let’s book the flights and the huts.  Let’s do this.”  An hour or so later, probably as they boarded their overseas flight, 3 Department of Conservation huts were booked, as were flights to Queenstown.  It all seemed so simple.  Timed to fit in before school started and Kathy had to go back to work.

Motivated by the thought of 3 nights a 4 days of walking in the bush and above the snow line, we started training the next day.  By Tuesday afternoon the following week, I had been diagnosed with breast cancer.  A few weeks later, with a follow-up appointment with the surgeon scheduled, we also scheduled dinner with Chris and Kathy, as I would know by then what was likely to happen post-surgery, and we could figure out what to do.

As it turned out, I didn’t have a clue what was going to happen due to incomplete test results, but we met for dinner anyway.  In a quiet voice, almost as an aside, Chris said “I’m waiting for biopsy results too.”  He had had a niggling prostrate issue that warranted a ‘watch and wait’ approach.

By the time of Kathy’s 60th birthday, I was waiting to start chemotherapy.  I had met the new man in my life, Reuben, the oncologist.  When we told him about the Kepler booking, he quickly worked out that provided I tolerated the chemo in a half-decent manner, the timing was perfect to do the tramp just prior to the last of 4 doses.  I didn’t really believe him, thinking he didn’t realise it was the Kepler – out of range, out of sight, wilderness with no Plan B.  But I was prepared to adopt a wait-and-see approach.  In the early part of the birthday party, I asked Chris how his result had gone.  “I’m booked to have surgery,” he says, matter of factly, “the worst bit is convincing my family I am not going to die.”  We laughed about how sex really wasn’t that much of a big deal later on in a relationship.  He said he had been advised that sex will still be possible, but that it requires more effort (!) so he intended to get Kathy a French maid’s outfit.  When I asked about the timing, he said he had booked it for after the Kepler.  I was a bit aghast – there was not way I would have delayed my surgery, by then well and truly over, for anything.  He said it only made a few weeks difference in his case, and I suppose his oncologist/surgeon was happy with that.

Chemotherapy Cycle 1 came and went, and to my surprise, it was OK.  The first week was a bit rough, but after that, life just went on, sometime a bit slower than normal but still very much normal.  I reported in to Reuben, and thought, for the first time, “I can do this.”

So training commenced in earnest.  Back packs filled with water bottles, long walks up and down hills.  A group walk over the holiday period in full tramping mode.  4.5 hours, 14.5 kms.  Heartened, we started to look forward to the big event.   Cycle 3 was the next day, so I expect the same conditions to prevail on Monday next week, which will be day 3 of the tramp, and day 20 of the 21 day cycle.  Reuben kindly rescheduled Dose 4 out one day to give me time to get back to Auckland.  Turns out he is a bit of a hiker himself.

The nurse that was administering Dose 3 was very interested in our mad plans.  “We don’t get many people in here doing things like that,” she said.  Naturally we would not be doing it either had it not already been booked.

Last week I got a head cold.  Normally I would not take too much notice, but when your immune system has been nuked to the brink of collapse, little things become epic.  In desperation I went to my GP, who dispenses herbal and homeopathic medicine as well as the latest modern medical science can offer.  He jabbed me with stuff for sinus issues, and started on what will become a longer engagement with iscador, a form of mistletoe.  Even John Hopkins University acknowledges it “minimises the side effects of chemotherapy”.  In Europe they pump it into you intravenously prior to plugging in the chemo drugs.

I also got sore little toes.  “Ye Gods”, I thought, “it is not chemo that will stop me doing this tramp, but a head cold and sore little toes.”  I sought advice from a sports podiatrist, and, bless him, he said “Buy some bigger boots,” along with a whole list of other things to try to alleviate pressure on my toenail beds.  Turns out he sees a few people on chemo having nail problems.  If you keep seeking eventually you find the right answers.

The lovely Dr at Dove House said to me, last week, “The most toxic thing is your own thoughts.”  I pondered on this, mid-head cold, and wonder how much damage we do to our hopes and dreams just by thinking it will all go pear-shaped.  I clung to the image of Chris and me, cancer patients, embracing at the top of Mt Luxmor.  Take that cancer, you might mess with my body but you will not mess with my life.

On Monday we four had another meeting, complete with delicious Nepalese food at the local restaurant.  Before we walked up the road we knocked off the daily crossword between us – group effort – which seems like a good omen.  The restaurant has images of the Himalayas – we joked about how that might be next.  They were supposed to go there last year, but the trip was cancelled because it was deemed too ‘American’ to be undertaken safely.  Kathy had lists from their previous tramps.  We are the novices here – they have lists and experience – form.  We talked about what we could share – the cooking pot, toothpaste, first aid kit.  They stunned us with their menu – fresh wraps for lunch, while we will be munching on commercially made baked fruit and oat bars.

Kathy advised us that the previous week the resthome where her elderly Father lives had told them to gather, that his death was imminent.  She reported that he had recovered somewhat, but that if he died she would pull out and perhaps Chris would still do the tramp.  Today Chris advised that his father-in-law died yesterday.  They have figured out they can go to the funeral on Friday, catch a later flight, and meet us in Te Anau on Saturday morning in time for the water taxi across the late as planned.  We have now booked bus tickets instead of sharing the rental car, but we will all return together.

Who would have thought a mere 3 1/2 months ago when we first booked and picked what was a fairly random date that two of us would subsequently be diagnosed with cancer, and  we would manage to fit the tramp around a mastectomy, a prostectomy, chemotherapy and the death of a loved one.  Despite all this, we are determined.

I have my new boots – literally a third of the price of my other ones, but also 10mm wider across the toes, and the toe problem is solved.  Still clearing my lungs, but all good to go.  The weather forecasters are talking about a weather bomb, with heavy rain and strong wind warnings all over the place for tomorrow.  The day after that, Friday, we fly south, and the day after that, Saturday, after everything the Universe could throw at us, four of us will be departing from Te Anau by water taxi and starting the Kepler Track at Brod Bay.

Staunch.  Watch this space for the outcome, later next week.

Half way up the hill, Tawharanui - the beginning of our test hike.  In the distance Tamahunga, our other test site conquered earlier in the week.

Half way up the hill, Tawharanui – the beginning of our test hike. In the distance Tamahunga, our other test site conquered earlier in the week.

 

 

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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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