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Bad Hair Days

Chris Saliba is a Webdiary contributor. His archive is here. His last Webdiary piece was They Legalised Murder. His blog is here.

Pamela Bone amazed and appalled many of her readers when she declared her support for the Iraq war. Friends and colleagues couldn’t believe her decision. Bone, a tireless writer on human rights abuses, was asked at a public discussion by Bob Ellis if she liked killing children.

After a year or so of reading her columns supporting the war I decided to write her an e-mail. Happily she wrote back. Unhappily, she didn’t respond to the subject of my e-mail. She thanked me for at least being polite in disagreement. Frustrated, I wondered why this strange, empty, almost disinterested response. After reading Bad Hair Days, now I know: Pamela Bone was in the midst of gruelling cancer treatments.

Bad Hair Days is the kind of book Bone never intended to write. What was there to say? Cancer was a private matter. Who’d want to share all the physical humiliations that the disease puts you through? When the news broke that Kylie Minogue had cancer, Bone cried out in frustration: just leave her alone!

Friends and family told her to keep a diary, as it would make good writing material. No, cancer was the last thing this columnist would want to write about. Luckily for her readers, Bone changed her mind after reading books by others who have had cancer, and decided that disease and death are things we should be discussing as a society.

And so, we are taken in some detail through Bone’s various treatments for cancer, the losing of hair, the loss of appetite, the loss of her life as she knew it.

Fear and anxiety soon followed.

‘What was I frightened of then? I was full of unfocused fear. I would sit in the chair at night, afraid to get up and go to bed. In the morning I would lie in bed, afraid to get up. I sat in the chair each morning reading The Age, making it last, afraid to come to the end of it. Because when I came to the end of it I would have to find something else to read and that was frightening. Or I stood at the window, forcing myself to take long, deep breaths.’

Despite all of the physical suffering from chemotherapy, the one theme Bone keeps coming back to is the kindness of people and how good our lives are, despite all the horrors we read and see in the media.

‘It’s a good society we live in. Not perfect, but good. It doesn’t always get it right but our governments, the governments elected by us, the people, and kept accountable by us, try to make sure there are supports available for everyone who can’t look after themselves.’

In one of the most moving parts of the book, Bone describes the mammoth amount of e-mails (they were printed up by The Age and sent to her) and letters she received after her last column, announcing publicly that she had cancer. She had not been able to cry since diagnosed, but this happy event allowed the tears to finally come.

Bone admits throughout the book that she’s still not completely comfortable focussing on her cancer as a prime subject, and so the book keeps morphing into one of her columns. All of her usual passions are here: Iraq, Darfur, Africa, the Taliban (she was one of the few writing early on about their abuses), poverty, the treatment of women and the falling quality of today’s media (The Age comes under some scrutiny).

There is also a lot of discussion of voluntary euthanasia. Early on Bone tells us she has received ‘the knowledge’, and so can end her life at a time of her own choosing. This ability to have control over one’s own life is very important to Bone, a basic human right.

Many reading Bad Hair Days will want to see where Bone now stands on the Iraq war. She details her original argument for removing Saddam Hussein.

‘Like the Perowne character, I had been influenced by the refugees from Iraq. In 2000 I talked to a group of exiled Iraqi women who were trying to organise a protest in Melbourne against the abuses of the Ba’athist regime in Iraq. The women told me that in Iraq, women were beheaded with a sword and their heads nailed to the doors of their houses as a lesson to other women. The executed women had been dishonouring their country with their sexual crimes, the then Iraqi leader, Saddam Hussein, had said on national television. More than two hundred women had been executed in this manner during the previous three weeks, the women from the Committee in Defence of Iraqi Women’s Rights told me.’

Going into the war, Bone believed Saddam Hussein was a danger to his own people and the world, and that dictatorial leaders should not be able to kill and torture with impunity. She also hoped that the follow on effect of a successful democracy in Iraq would be more democracies through out the Middle East, greatly improving people lives.

Bone now accepts that the invasion and occupation of Iraq has in itself been a disaster: ‘I acknowledge, now, that the price of getting rid of Saddam Hussein has been too high.’

But…There’s always a but. Or an ‘if only’.

‘Perhaps it did not have to be like this,’ she laments. ‘If there had been better pre-war intelligence, less arrogance and les incompetence on the part of the United States administration, if there had been sufficient troops and a firm plan for immediate reconstruction, there may have been a different outcome.’

Well, finally I did get an answer to that e-mail. And more than I bargained for. Reading the book I found myself mildly anxious at times for Pamela Bone’s health: how could she be writing a book after being so sick. Take it easy, I wanted to implore her.

What’s the take away from Bad Hair Days? Does the book have a message? This is not some triumphant cancer survival story. Bone hates them. She’s dismissive of alternative medicines, sceptical of the power of positive thinking, and completely fatalistic about death. We all must do it. What’s the best way to die?

‘To be honest, there is, at times a small, lingering disappointment that I didn’t die. I had an opportunity to escape, gracefully and blamelessly, and didn’t take it. I wasn’t strong enough, two years ago, to say no, I won’t have any treatment, thanks. And as a consequence I still have that problem to face: how to get out of this life with as much dignity and as little pain as possible.’

How to live? How to die? What’s the best way to live? I always think of those great lines from Shakespeare’s Measure For Measure: ‘Be absolute for death: either death or life / Shall thereby be the sweeter.’

Pamela Bone is now in remission from cancer. Life is full of sweetness she tells us: new books to read, music to listen to, new flowers in spring to enjoy. She leaves us with some good advice.

‘I say this to you too. Don’t give up on people, ever. People, and this life, are the only guaranteed things we have.’

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Multiple Myeloma

I know a lot about the cancer afflicting Pamela Bone. Her surname is ironic, eh? It's great to see she didn’t succumb to despair and take her own life.

Nowadays, MM is on the verge of being considered a chronic disease, rather than a fatal cancer. The difficult chemo Pamela was subjected to is rarely used anymore - better drugs now exist, or less damaging variations of the old methods are now used. Stem cell transplants (SCTs) are also on the way out, largely because the high dose melphalan given to nuke the immune system just prior to the transplant can never destroy 100% of the pre-cancerous or cancerous cells.....so it is usually only a matter of time before the cancer returns. That said, SCTs can be very effective for some, giving extended remissions.

It should also be noted that the kind of suffering (from chemo and SCT) that Pamela describes is hugely variable from patient to patient. Many find the process much easier than she did (my own father had a difficult but easier time with exactly the same treatment). This is partly due to the reality that there are various types of MM and (like all cancers) the disease has stages. The patient's response does depend in part upon the stage at time of diagnosis....but the tolerance to the chemo also varies considerably between patients.

My father has now been in complete remission for a couple of years and he is really enjoying life. He has no regrets about the treatment.

I write this to let others know who may (one day) receive a similar diagnosis: the fear is your worst enemy....and fear of the treatment is a big component. Don’t be too concerned about the "bleeding from all orifices" problem which Pamela has described, as (although some chemo does destroy fast growing cells, which affects all mucosa) most people don’t experience problems to that extent. Nowadays, with Vincristine and Adriamycin (the V and A of VAD induction therapy, in the months prior to STC) being outmoded...and Melphalan only being used if the patient has a transplant (less common now), the dominant drug is low dose Dexamethasone (strong cortisone). Dex can cause problems, but it doesn’t hurt the patient's mucosa. In the past, very high doses of Dex were used. New studies appear to show low doses actually work better. And, of course, millions of people around the world take cortisone every day for all kinds of health issues....

Other drugs such as (believe it or not) Thalidomide are also commonly used, with new variations of Thal (Revlimid) and other new drugs such as Velcade becoming good substitutes instead of STCs. Not all of the new drugs are available yet in Australia though. There are many more new drugs on the way.......instead of the "a few years" prognosis which faced most MM patients a few years ago, the outlook is now much better.

Like Pamela, I'm strongly against the "so called Alternative Medicine" crowd (scAM) with respect to cancer treatment and I'm a longtime member of the health fraud email list (www.quackwatch.com). The main reason for being anti-scAM is the importance of risk management when treating cancer. The risks associated with nearly all forms of alternative medicine are unknown, whereas the risks associated with mainstream treatment are known. With a disease like MM, where it can actually be problematic to inappropriately stimulate the immune system, any alternative medicine may cause more harm than benefit. That said, it is worth noting that there may even be some promising new MM treatment regimes based around "natural" substances such as Curcumin (Turmeric) and Resveratrol (the stuff in red wine).

Fiona: Sean, thank you for your thoughtful post. It emphasises the importance of wide-ranging and sceptical investigation of possible treatments – though I must say I applaud your mention of red wine…  All the best to your father (and you), and, of course, to Pamela Bone.

Me Too!

I am pleasantly surprised at how much time Pamela invested in replying to her correspondents. Like Paul, I went through the friendly to acrimonious but eventually back to friendly stages.

I liked her writing about women issues. She was strong, thoughtful and unswerving in her advocacy. That I disagreed with her on some issues, including Iraq, is neither here nor there.

Good luck, Pamela, it would be good to see you back in something like your former role, energy levels permitting.

Remission

Like Chris, I "went" her over some of her columns. Going back to 2000, when I'd just discovered Fairfax and subscribed to the Age then later online when the journos still provided links. And she replied. Things were friendly at first, later acrimonious. Much of this was my fault. She's not perversely reactionary, a calculating cynical harpy like Miranda Devine, say. Nonetheless, although she's been excellent; say Adele Horin-ish when focussed, the more "retentative" essentialist and reductionist Pollyanna-ish writing; the unrelentingly pro-Israel/ anti-Arab stuff, truly grated. Maybe if she was ill it would explain why some of her work went "off" (to me).

The cancer thing.

My mother died from it earlier this year and from what I saw over nearly twelve months, I wouldn't wish it on my worst enemy. Good luck, Pamela Bone. Am glad you got a reprieve – my mum missed hers but then she was older – and you now get an undetermined time to be in the sun, get things "sorted", snooze, listen to the birds and sniff the flowers.

You'll be smart enough not to waste the little allowance.

Living National Treasure

My first and only communication with Ms Bone was about 7-8 years ago, with a brief email exchange, while she was still associate editor with The Age. I remain impressed with the warmth and generosity of her reply.

PB's support for the 2003 invasion of Iraq surprised me a little ('though not that much), but her position was one of the few on right or left for which I have ever had any respect. Because it was honest, if perhaps misguided.

She's since had second thoughts on that matter — too many people have died, therefore the price of toppling Saddam was too high. Once again, a rare (certainly, among pro-war types) moment of genuine reflection.

Anyway, the news of her illness was, for me, far more of a shock than her support for the Iraq misadventure. The prognosis isn't good, but PB is facing up to it with characteristic honesty and ('though she'd perhaps disagree) with courage.

Ms Bone can be heard interviewed on Radio National's Life Matters, see the audio download.

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