It has been a long time since I’ve added an entry, and that’s because I have been, and still am, very ill. The cancer returned with a vengeance, ‘lots and lots!’ of metastases the doc said and I didn’t ask him to count them out for me.

I’ve been undergoing (yet more *sigh*) chemo with little effect as yet.

I have been exhausted, hardly able to get my head off the pillow. But while the cleaner is in the bedroom vacuuming I decided to ‘dash’ (LOL) out here to give everyone a quick update.

Thank you to everyone for their thoughts, I truly appreciate them.

I have some amazing friends looking after me - many thanks to Karen and Stephen, and Joy and Michaela. Their help and love has been unbelievable. Thank you all, so much.

As I can I’ll get back to update you. Love to all.

Today I discovered that my new still camera also takes videos! So here is my first attempt - I will do a better one later once I’ve worked out what goes where. This is unedited with all its flaws. Enjoy!

I woke yesterday morning to a glorious day and the sound of the dill screaming.

The herbs, patiently nurtured along in their pots in the greenhouse, wanted to go into their herb garden.

So yesterday was spent planting. It is a fantastic feeling, sinking all these seedlings into the ground or their permanent pots. Suddenly spring is really here. I planted out the dill, the marjoram and the oregano. I planted out the ruby silverbeet and put all the asters into their big display pots. Red empress nasturtium went into the herb garden and lime geranium into a spot in the big bed which will soon house all the potted artichokes.

The elderberry is about to flower, so I am readying my wine-making equipment.

Today - the tomatoes? Traditionally tomatoes are planted on the fourth Thursday in October in Hobart, but I wonder if I can risk them a bit early. The forecast for the next week looks good ….

Meanwhile, in the rest of the garden …..

The greenhouse with all its baby charges.

The clematis on the veranda is beginning to flower.

As is the camellia.

While the chocolate vine in the woodland has made a bid to take over the walnut.

The jasmine is out and I can smell it all through the eastern garden.

A closeup of one of the tiny flowers of the chocolate vine.

Overall the garden is in good shape and I am happy.

Spring is here, even if the calendar insists it is not. Most of the trees are budding, the peonies are sending deep red phallic spears into the air, the bulbs are up, if not yet all out (although the hyacinth have been blooming for weeks now). The peach trees have been sprayed against leaf curl and are about a week out from flowering.

Most of the garden is set. It has been weeded, composted, and mulched heavily with pea straw - which the Indian Doves love. I have a pair that nest near here and every year they await with anticipation my pea straw mulch so they can dive in under the straw after the loose peas.

On the minus side a family of rats made themselves a cost home under the mulch, too, until I noticed one of them as they left for a day’s work in the garden.

I have decided to grow more flowers this year and have set seed for double phlox, hollyhocks, cosmos, poppies, stock, a half dozen others. One of my major vegetable beds was last year, during my period of incapacity, taken over by the children of a single but very fertile foxglove and so I have succumbed and allowed the bed to revert to flowers.

But I will have a few vegetables. Not a vast many, but a few. Just my favourites. I have cleaned out the hothouse and set seed for leeks, button squash, zucchini, pumpkin, cucumbers (every year I seem to have a disaster with them so this year am hoping to get at least one!), beetroot, silverbeet (chard). I will also put in salad leafy things once I uncover the veggie beds from their layer of mulch and it warms up a bit.

I will also grow tomatoes and capsicums but will cheat and buy ready growing plants from my local nursery (they sell the old heirloom varieties which I like) this year rather than raise from seed. I’ll give it another 3-4 weeks before I get them.

I also have seed for … walking stick cabbage which peculiar plant originates from the island of Jersey. I had no idea about this until recently when someone mentioned it to me. And then, a couple of weeks ago, I was in a hardware store when I walked past their seed counter and lo! They were selling seed for walking stick cabbage! I will have to try a few of them. This page shows the finished product.

So - I have a garden of mulched beds and lots of little pots waiting for seed to sprout!

Which means, I have some time for the blog, sadly neglected. It has been a busy few months as I have had to finish a book, as well spend what time I can in the garden.

I am mostly fairly well right now, with the occasional bad patch, which are bearable enough.

But to business, the garden. I have tried to spend a few days a week in the garden, even if it is just 15 minutes a day. Some days have been good and I’ve been out most of the day, others it is just the 15 minutes, but … gradually the garden is being cajoled back into shape. At the moment the garden is (mostly) a mass of weeded and mulched garden beds and looks fairly boring. I have been fairly severe with it, taking out things that haven’t been doing well. About 75% of the veggie beds are now manured and composted and heavily mulched for the spring/summer season.

This year I am going to plant more flowers. Not so many vegetables. Just the things I really like. A flower garden can mostly take care of itself once it has been planted out, but a veggie garden needs constant work. So I am hoping to stay well enough long enough to get a nice flower garden in.

If not, well, a bare but mulched garden bed is not the worst thing that can happen to a garden!

I have got lots of seeds to start out soon, and yesterday I planted three more peonies (I have lost some over the past 2 years): Felix Crousse - hopefully they will flower this year, although peonies generally hate being transplanted.

As I have been clearing I have been finding lots and lots of old clay pots. These I will be doing something very special with once a bright day and a pile of energy comes along!

But, mean time, there are more beds that need weeding. *sigh*

As for the Self-Sufficiency experiments. Well, that ended half good half bad. The summer was excellent, as I’d been good through spring of last year and had planted lots of stuff from which I ate well. But then from early summer I became progressively sicker, and I did not plant anything for winter, although I did have a bed of leeks, some brussel sprouts, and a bed of winter beets to eat from.

Oh, the rain, I love it!

(It has taken me about 3 hours to write this damned post because a few weeks ago I also got a new computer replete with new software, and trying to get one of the bits of software to do what it was supposed to … grrrrr!)

I have been here - I have just been working. Last week I emailed off my latest book to my editor at HarperCollins, Steph Smith, and now I can get back to the garden.

The book, The Devil’s Diadem, has been a life saver. It has given me something to do each day, something to look forward to, and I have loved every moment of writing it. I hated finishing it - so much so that I am now deep in planning for my next venture. It is almost as if the book has been a charmed talisman. Most of it I wrote while undergoing chemo - one week sick as a dog in bed, one week not so sick and sitting in front of the computer typing away as if my life depended on it, and trying to fit in all my medical appointments as well. As far as chemo goes, I am having a break for it for a while until the cancer springs back - no one knows how long that will be … but not long, unfortunately.

But, in the meantime, there is the garden. First a huge thank you to Paula Moss who arrived one day with cup cakes and a willing pair of hands and who toiled away in the woodland pruning and weeding for me. That was so wonderful - thanks again Paula. Every time I go down to the woodland now I am amazed by how much Paula managed to get through.

I am slowly getting back into the garden myself. Doing a bit of weeding, a bit of clearing, a bit of digging (not much as I still find this very hard). Just little bits, here and there. But the little bits mount up. Yesterday I amazed myself by digging up six shrubs that had completely overgrown a brick path. The shrubs are still there, lying on the path - so today’s exercise will be to shift them to some infill and reclaim the path. Pruning and more pruning. Why did I plant so many robinias??

The vegie garden is still there although needs much work. I have leeks and beets, carrots and still some capsicum coming through (although the capsicums are soon for the next world). I also have some old-ish potatoes sitting under the car port . Every night the industrious rats come along and steal some potatoes and roll them about 5 metres to the rat hole to under the house. There the potatoes stay as the rats can’t get them through the hole. It is good of the rats to point out to me so conveniently where their rat hole is so I can contemplate some rat extermination. Every morning, without fail, three potatoes exactly sitting about this hole where the rats have tried furiously to get them down. I have to admire their industry.

We have had virtually no rain at all this year. The garden is incredibly dry - last year was fantastic for rain. This year, ghastly.

Thank you again to everyone who replied to the Silence of the Dying post. The response has been amazing.

I apologise for not updating the blog more often. Sometimes everything gets too much and I just can’t cope with things - then I tend to go into hibernation.

Today I did something tremendously unusual. I went to visit a professional who attended to my bodily needs - and this visit did not involve any pain, it did not involve any needles, it did not involve anyone saying, “Just a little prick!” and then hurting me horribly, it did not involve any IVs or drugs or radiography (and even larger needles … “Sorry! Just had to push through your abdominal wall … can’t get any local that deep!”), or having my vital obs taken, or tablets or alcohol smell or anything.

I went to the hairdresser. It was so mundanely normal I am tearing up even as I type about it. I’ve been growing my hair back for a year now (the last lot of chemo thinned my hair but it didn’t leave me bald, thank God) and it has grown back a disastrous mouse colour and in a tight patch of unruly evil curls. I am going to kill the next person who rattles on about how lovely curls are. I don’t give a damn. They are cancer curls and they are vile. Anyone who has cancer and who has been ravaged by treatment can’t wait until they start to get ‘normal’ back - and thus my hair. Over the past 6 months I’ve been too ill to make it the 3 blocks to the hairdresser (and that’s too short for a taxi to want to take me) but today Chemo Bitch* managed to get down there … and the normal me came home.

Gone are the evil curls. Gone is the horrid greying mousy thatch. Back is the wavy-haired soft blonde me. I keep going to the mirror and looking. I can’t believe it. That’s me. Looking normal.

I was so amazed, and so normalized, that I immediately went out and weeded half the bog garden’s path. (Which is more gardening than I have managed in about 8 months.)

The poor garden. It has suffered but not too horribly. It needs a good weed. It needs attention. It will get it, I hope, in little bits over the winter. While I am, hopefully, going through a ‘normal’ stage.

_______________________________
*Chemo Bitch is a superhero. Spangly tights and all. I save the world from evil medics who can’t get an IV in the first attempt. I can take out consultants with a single snarl.

Wow. I wrote the Silence of the Dying blog, got a great weight off my chest, and then walked off and forgot about it.

Since then everything has snow-balled and I have had an amazing response - on here, on Facebook, and via email. People have linked to it and talked about it, newspapers have been in contact.

First, thank you to everyone who has responded. I have been moved by your stories and emotions and thoughts.

Secondly, thank you to everyone who has offered to help as well. I am actually highly embarrassed by this as it not the reason I posted this at all. So to all of you, thank you, I have noted your names and emails, and when I need help I will not hesitate to ask. I will also send you an email over the next week or two, as well. At the moment I am actually doing fairly well due to being given a break from chemotherapy - it is amazing how much chemo can drag you down and how much strength you get back so soon as it stops - but there will be down times ahead, too, and I am immensely grateful to those who have offered help.

On Sunday the WA Sunday Times published a feature article on me - you can download the low res pdf here if you didn’t see it in hard copy. Many thanks to Sheryl-Lee Kerr for writing the story, and for the fun correspondence.

Many years ago I did an hour long interview on Adelaide radio (with Jeremy Cordeaux, I think, but my memory may be wrong). The interview was supposed to promote one of my recent publications, but for some reason we quickly strayed onto the subject of death and dying, and there we stayed for the entire hour. I proposed that as a society we have lost all ability to die well. Unlike pre-industrial western society, modern western society is ill at ease with death, we are not taught how to die, and very few people are comfortable around death or the dying. There is a great silence about the subject, and a great silence imposed on the dying. During the programme a Catholic priest called in to agree with the premise (the first and last time a Catholic priest and I have ever agreed on anything) that modern society cannot deal with death. We just have no idea. We are terrified of it. We ignore it and we ignore the dying.

Today I’d like to take that conversation a little further, discuss modern discomfort with death, and discuss the silence that modern western society imposes on the dying. Recently I’ve had it hammered home on a couple of occasions how much the dying are supposed to keep silent, that ‘dying well’ in today’s society means keeping your mouth firmly closed and, preferably, behind closed doors.

Never shall a complaint pass your lips. How many times have we all heard that praise sung of the dying and recently departed, “They never complained”?

Death in pre-industrial society was a raucous and social event. There was much hair-tearing, shrieking and breast beating, and that was just among the onlookers. Who can forget the peripatetic late-medieval Margery Kempe who shrieked and wailed so exuberantly she was in demand at all the death beds she happened across? Suffering, if not quite celebrated, was at least something to which everyone could relate, and with which everyone was at ease. People were comfortable with death and with the dying. Death was not shunted away out of sight. Grief was not subdued. Emotions were not repressed. If someone was in pain or feeling a bit grim or was frightened, they were allowed to express those feelings. Unless they died suddenly, most people died amid familiar company and in their own homes amid familiar surroundings. Children were trained in the art and craft of dying well from an early age (by being present at community death beds). Death and dying was familiar, and its journey’s milestones well marked and recognizable. People prepared from an early age to die, they were always prepared, for none knew when death would strike.

Not any more. Now we ignore death. We shunt it away. Children are protected from it (and adults wish they could be protected from it). The dying are often not allowed to express what they are really feeling, but are expected (by many pressures) to be positive, bright and cheerful as ‘this will make them feel better’ (actually, it doesn’t make the dying feel better at all, it just makes them feel worse, but it does make their dying more bearable for those who have to be with them).

When it comes to death and dying, we impose a dreadful silence on the dying lest they discomfort the living too greatly.

I have done no study as to when the change took place, but it must have been about or just before the Industrial Revolution — perhaps with the mass movement into the cities and the subsequent destruction of traditional communities and community ties, perhaps with the rise of the modern medical profession who demanded to control every aspect of illness, perhaps with the loosening grip of religion on people’s lives during the Enlightenment.

Certainly by the nineteenth century silence and restraint had overtaken the dying. The Victorian ideal was of the dying suffering sweetly and stoically and silently (we’ve all read the novels, we’ve all seen the paintings). Those who didn’t die sweetly and stoically and silently but who bayed their distress to the moon generally ended badly by dropping their candle on their flammable nightgown, and then expiring nastily in the subsequent conflagration which took out the east tower of whatever gothic mansion they inhabited. The lingering commotion and the smouldering ruins always disturbed everyone’s breakfast the next morning. There was much tsk tsk tsk-ing over the marmalade.

By the mid-nineteenth century, if not earlier, the lesson was clearly implanted in our society’s collective subconscious.

Death should be silent. Confined. Stoic.

Sweet, stoic and silent was the way to go. (Again I remind you that a sweet, stoic and silent death is still praised innumerable times in today’s society; by the time we have reached early adulthood we have all heard it many, many times over.) The one exception is the terminally ill child. Terminally ill children are uncritizable saints. The terminally ill adult is simply tedious (particularly if they try to express their fears).

All this silence and stoicism scares the hell out of me.

In that radio interview many years ago I spoke as a historian. Today I speak as one among the dying. Two years ago I was diagnosed with cancer. Six months ago it came back. It is going to kill me at some stage. Now everyone wants a date, an expected life span, an answer to the ‘how long have you got?’ question. I don’t know. I’m sorry to be inconvenient. I am not in danger of imminent demise, but I will not live very long. So now I discuss this entire ‘how we treat the dying’ with uncomfortable personal experience.

Now, with death lurking somewhere in the house, I have begun to notice death all about me. I resent every celebrity who ‘has lost their long battle with cancer’. Oh God, what a cliché. Can no one think of anything better? It isn’t anything so noble as a ‘battle’ gallantly lost, I am afraid. It is just a brutal, frustrating, grinding, painful, demoralizing, terrifying deterioration that is generally accomplished amid great isolation.

Let me discuss chronic illness for a moment. As a society we don’t tolerate it very well. Our collective attention span for someone who is ill lasts about two weeks. After that they’re on their own. From my own experience and talking to others with bad cancer or chronic illness, I’ve noticed a terrible trend. After a while, and only a relatively short while, people grow bored with you not getting any better and just drift off. Phone calls stop. Visits stop. Emails stop. People drop you off their Facebook news feed. Eyes glaze when you say you are still not feeling well. Who needs perpetual bad news?

This is an all too often common experience. I described once it to a psychologist, thinking myself very witty, as having all the lights in the house turned off one by one until you were in one dark room all alone; she said everyone described it like that. People withdraw, emotionally and physically. You suddenly find a great and cold space about you where once there was support. For me there has been a single person who has made the effort to keep in daily contact with me, to see how I am, how I am feeling, and listen uncomplainingly to my whining. She has been my lifeline. She also suffers from terrible cancer and its aftermath, and has endured the same distancing of her friends.

The end result is, of course, that the sick simply stop telling people how bad they feel. They repress all their physical and emotional pain, because they’ve got the message loud and clear.

People also don’t know how to help the sick and dying. I remember a year or so ago, on a popular Australian forum, there was a huge thread generated on how to help a member who was undergoing massive and life-changing surgery that would incapacitate her for months. People asked what they could do. I suggested that if one among them, or many taking it in turns, could promise this woman two hours of their time every week or fortnight for the next few months then that would help tremendously. In this two hours they could clean, run errands, hang out the washing, whatever. And they had to do all this while not once complaining about how busy their own lives were, or how bad their back was, or how many problems they had to cope with in life. Just two hours a fortnight, with no emotional-guilt strings attached. Whatever she wanted or needed. Freely given.

Bliss for the incapacitated or chronically ill.

But that was too difficult. Instead the poor woman was buried under a mountain of soft toys, dressing gowns, bath salts and bombs, daintily embroidered hankies, a forest’s worth of Hallmark cards, chocolates and flowers and exhortations that everyone was ‘thinking of her’.

None of which helped her in any way, of course, but all of which assuaged the guilt of the gift-givers who mostly promptly forgot her and her daily horrific struggle through life.

Modern attention spans for the chronically ill are horribly short, probably because chronic or terminal illness in today’s society is horribly tedious. Tedious, because we are all so uncomfortable with it.

Instead, too often, it is up to the sick and the dying to comfort the well and the un-dying.

Just take a moment to think about this, take a moment to see if you have ever experienced it yourself. The dying — sweet, stoic, silent — comforting those who are to be left behind. I know I experienced it when first I was diagnosed with cancer. I found myself in the completely unreal situation of having, over and over, to comfort people when I told them I had cancer. In the end I just stopped telling people, because almost invariably I was placed into the bizarre situation of comforting the well by saying everything would be all right (which, of course, it won’t, but that’s what people needed to hear to make them comfortable about me again).

The dying have been indoctrinated from a very young age into this sweet, stoic and silent state. They earn praise for always being ‘positive’ and ‘bright’ and ‘never complaining’. Perhaps they are bright and positive and uncomplaining, but I am certain they lay in their beds with their fear and anger and grief and pain and frustration completely repressed while modern expectation forces them, the dying, to comfort the living.

I am sick of this tawdry game. I am sick to death of comforting people when all I want is to be comforted. I am sick of being abandoned by people for months on end only to be told eventually that ‘I knew they were thinking of me, right?’ I am sick of being exhorted to be silent and sweet and stoic. I know I face a long and lonely death and no, I don’t think I should just accept that.

I don’t think I should keep silent about it.

I have witnessed many people die. As a child I watched my mother die a terrible death from the same cancer that is going to kill me. As a registered nurse for seventeen years I have seen scores of people die. I have watched the dying keep cheerful and reassuring while their family were there (forced by modern expectation of how people should die), only to break down and scream their terror when the family have gone. The one thing they all said, desperately, was “Don’t let me die alone.” But mostly they did die alone, doors closed on them by staff who were too frantically busy to sit with them, and relatives who have gone home and not thought to sit with their parent or sibling. People do die alone, and often not even with the slight comfort of a stranger nurse holding their hand. If you put your relative into a hospital or a hospice or a nursing home, then their chances of dying alone and uncomforted increase tremendously. I want to die at home, but I am realistic enough to know that my chances of that are almost nil as impersonal ‘carers’ force me into a system that will remove me from any comfort I might have gained by dying in familiar, loved and comforting surroundings.

My mother, who died of the same cancer which will kill me, kept mostly stoic through three years of tremendous suffering. But I do remember one time, close to her death, when my father and I went to visit her in hospital. She was close to breaking point that evening. She wept, she complained, she expressed her fears in vivid, terrifying words. I recall how uncomfortable I was, and how relieved I was when she dried her tears and once more became cheerful and comforting herself. I was twelve at the time, and maybe I should feel no guilt about it, but I do now, for I know all too well how she felt, and how much she needed comforting far more than me.

She died in her cold impersonal hospital room in the early hours of the morning, likely not even with the comfort of a stranger nurse with her, certainly with none of her family there.

The great irony is that now I face the same death, from the same cancer.

That is the death that awaits many of us, me likely a little sooner than you, but in the great scheme of things that’s neither here nor there. Not everyone dies alone, but many do.

Not everyone suffers alone, but most do it to some extent.

It is the way we have set up the modern art of death.

I am tired of the discomfort that surrounds the chronically and terminally ill. I am tired of the abandonment. I am tired of having to lie to people about how I am feeling just so I keep them around. I am tired of having to feel a failure when I need to confess to the doctor or nurse that the pain is too great and I need something stronger.

I am tired of being made to feel guilty when I want to express my fear and anguish and grief.

I am tired of keeping silent.

******************

Thank you for reading this far, and being my companion this far. I promise to be more stoic in future. But just for one day I needed to break that silence.