Thursday, November 30, 2006

Ritual, music, summer (part one)

A few posts ago, I lamented that I would be unable to make the Christmas puddings this year. This would make two years in a row I had missed, for last year we were still in St Louis, and the earnest little beagles at Melbourne airport would never have let them through quarantine. But my father read the blog and thought that this would be something he could help me with. So over the weekend I weighed up the fruit and left it to soak in the beer and brandy, and then two days ago he set to work blanching the almonds and grating the oranges, lemons and carrots (this is a fabulous recipe, with no suet, just butter and piles of fruit), while I measured up the flour and spices. He then stirred the mixture. This was no mean feat, as we made two large puddings, one for Paul's family on Christmas Eve, and one for mine on Christmas Day; and the physical activity of all that grating and stirring would certainly have been a challenge (I have almost complete movement in my arm, but it's still a little weak). But I was pleased to find that with a little encouragement I was able to do something I enjoy, but had thought would be too difficult. It means our family rituals can resume after last year’s abeyance: Glenda will make several dishes of brandy butter (one for Christmas Eve, and one for me to take to my parents); Rod and Trish will bring the customary fresh berries and chocolate dipping sauce. It is a time of such plenty in this country.

Cooking in this way has a strong ritual component that was surely healing for me over the last few days, as the big pots rumbled and steamed in the kitchen. We all stirred the mixture and made a wish, while I debated with Joel the protocols of declaring your wish in public afterwards (we agreed wishes were better kept secret). Watching my father blanch the almonds also took me back to my childhood, learning to cook with my mother and marvelling at the way the hot water could make the milky white nuts slip so easily out of the dirty skins that we could never have peeled away. I also got to use one of my favourite kitchen implements, the tiny grater I keep in the jar with the nutmegs. This is the specific pleasure of precisely the right implement for the job. But there was something else, too: a lingering trace of the exotic quality of spices, and their special requirements and properties (you can throw in an extra handful of apricots or cherries, but you can't mess with half a teaspoon of nutmeg). And a recollection of trying to recall, in other years, a book I read as a child: somewhere, a warm kitchen scene where spices were special and rare, and had to be used carefully because the spice seller wouldn’t be coming to the house for another year. I can’t remember any more than this (how can I possibly hope to recover this book when this is all I can remember of it?), but the kitchen had something of the quality of Marmaduke Scarlett’s kitchen in The Little White Horse. I guess it's too much to hope this rings a bell with anyone?

Wednesday, November 22, 2006

It's not just about the statistics...

I met my radiologist on Monday. Michael is younger than Suzanne and Mitchell, but shares the same clarity and compassion that seems to characterise the team at the Mercy. He had also been at the practice meeting about my case. We talked about the clinical trial of the twofold hormone therapies, and the decision not to have chemotherapy. He pulled a little phone/palm-pilot thing from his breast pocket and showed me how it could calculate my chances of recurrence, given the details from the pathology report, and the success of the surgery, my age and general good health. With the standard hormone treatments, chemotherapy would add just 1% to my chances of going the magical ten years without a recurrence. Chemotherapy also brings its own risks of course, including about a 1% chance of developing leukemia later in life. Well, let's be brutally honest here: all the cancer treatments bring unpleasant side effects and risks of various kinds. For example, I will lose about 5% of capacity in one lung over the 33 radiation treatments to come, as that part of the lung becomes scar tissue.

But the medical statistics, truly, are only part of the story. I am slowly realising what an emotional ride this is. Physically, I'm stronger and stronger every day as I wait for the adjuvant treatments to begin. Today I took myself down to the beautiful heated outdoor Fitzroy pool and swam 16 x 50m laps in its crystalline waters under blue skies and warm sun. Well, it's true that some of these were just with the kickboard, but stretching out my arm till it hurts (Michael's expression) is the best way of regaining strength. I still have a few patches along my arm and side where it still feels as if I am wearing a layer of sandpaper under the skin, but it is now just a fine grade, as opposed to the coarse grade that suddenly appeared a few weeks ago when the total numbness started to disappear.

I've had my CT scan and been tattooed (truly: three minuscule dots!), in readiness for the radiotherapy to start next Tuesday. That was fine, but there was a delay the next day when Danielle, the research associate, was ill, and wasn't able to enter me into the database and "randomise" me for the trial. Without this research protocol, the hormone therapy could not begin for another week. The news threw me badly, as I had prepared myself emotionally for this new chemical intervention into the body. I came home (Tash, the nurse, and Mitchell himself had both phoned me but I hadn't checked my mobile for messages), and felt teary and unable to read or do anything much for the rest of the day.

I find I have to pace myself, then, in terms of social interactions. I have not been accustomed to thinking of myself as emotionally frail or fragile, but am finding that the only place I want to be, most days, is at home. My son suggested I think of myself as hibernating while the treatments are going on; and it is one of the most helpful pieces of advice I have been given.

One of the reasons I write so much about the doctors is because I am fascinated with their understanding of professional practice. I am lucky to be in the hands of people who clearly, simply love their jobs. I have never felt rushed, or patronised by them. One time, about a week after surgery, I was in at the clinic having my wounds checked by the nurse, and Suzanne came in to see how I was going. She just stood there quietly and listened to me talk. Then the three of us would sit or stand in silence, and I would think of something else I wanted to say or ask. Suzanne would respond; and then we would all wait quietly a bit longer, and I would think of something else. This happened a few times.

Sometimes I am bright and cheery with the doctors and we converse as professionals, swapping stories about lecturing or research protocols or music (Mitchell is a pianist); other times I am serious and anxious, wanting lots of reassurance. I think I may have something to learn from them about how to supervise students. I don't mean I want to medicalise them! But rather to be more open to listening to the mood that they are in and how they are feeling. It's not just about the body and the statistics; it's not just about the thesis.

Another inspiring model to contemplate is Larry, my tennis coach. (I can see how far I've come physically this last week, as I not only rode my bike for the first time on Sunday; I also had a gentle hit at tennis.) Last year we asked Larry to teach our son to play; and then I started joining in to share the lessons, since I had never learned. Then my partner, who is an excellent player, joined in for coaching tips; and then our neighbour Alan, who introduced us to Larry in the first place, also joined in. So for an hour on Sundays, Larry manages an 11 year old, two 48 year olds (one beginner; one expert), and an 82 year old veteran. Through his own passion for the game, he somehow teaches all of us with grace, wisdom and good humour, tailoring the advice and the level of play for what we all need. He coaches just a few streets from where he grew up, and still lives. There are many, many worse ways to live.

Thursday, November 16, 2006

Don't tell her to "Be positive"

In one of the little brochures that came with the "My Journey" pack put together by the Breast Cancer Network Australia, there is some terrific advice for "Helping a friend or colleague with breast cancer." Some of this seems very locally specific: I doubt that the restorative powers of Tim Tams are recognised in the US, for example; and I can think of many finer ways of introducing the beneficial anti-oxidant properties of the cocoa bean into the body. Mostly the advice is very sensible, and makes even more sense to me now than it did when I first read it. It is just over a month since my official diagnosis (and about seven weeks since I first noticed the incriminating dimple in a hotel bathroom in St Louis). Under the "Things that won't help" section, one suggestion rings with me today. "Don't tell her to 'Be positive'".

Now, this is a tricky one, since it's widely acknowledged that having a positive attitude can make a real difference to one's experience of illness and treatment. A friend of my partner's gave us Norman Cousins' 'Anatomy of an Illness', a classic tale of healing through active collaboration with the physician and positive will power (far more enabling to me than Sontag's 'Illness as Metaphor', since her discussion of cancer now seems rather dated). But it seems that telling someone who is afraid and anxious (ok, I've had a couple of bad days) to "be positive" would be about as useful as telling someone who is depressed to "cheer up". No one has actually said this to me, I should say; just the insistent little voice in my head worrying that I've not been feeling as resilient and positive as I was a few weeks ago.

Yesterday, for example, I didn't go for the daily walk I've prescribed for myself. Well, it *was* hailing on the West Gate bridge, and snowing in the Dandenongs, the far outer suburbs in the mountains to the east (this is spring in the new southern hemisphere of climate change), but I had a day of feeling sorry for myself, and allowing myself to get distracted from my best intentions. This morning I was tempted to stay in bed and read, but after some wise partnerly counselling about the dangers of cocooning myself, I did head off for my walk. I laughed at myself after fifteen minutes, though, realising that I had taken my cocoon with me: two layers of wool under a thick double-lined coat I had bought for a St Louis winter last year; a warm lambswool scarf I had bought in Edinburgh; and knitted gloves. I came home in warm sunshine carrying most of this stuff in my arms, and was able to sit down to fulfil another of the small imperatives I have given myself: to read for at least an hour a day towards an essay I am writing on Piers Plowman.

Along my walk, I was pondering the difficulties of trying to reform and change my life, over the course of my treatment, and in the years to come. I am ready to accept the conventional wisdom and the experience of patients and doctors that cancer can often be a sign to us to re-assess our priorities. So far, I haven't found that I want to throw it all in and take up mushroom-farming: I find merely that I want to re-direct my energies and find a way to streamline the chaos of books, papers, committees, teaching, grants, meetings, emails, letters, forms and databases, to allow more time for the things I love best: reading and writing, for work and pleasure; and music, for pleasure. I could try and manage it all better (I spent far too long the other day looking for a memory stick with a reference on it which I had hidden away somewhere; and ended up writing the reference again from scratch), but I think an even harder challenge will be to become one of those people who says things like "no, I'm sorry, I won't be able to do that". I've done it a few times already over the last few weeks, and of course I survived. I will have to think of these as rehearsals for when I am no longer sick, when I will really need to be stronger about this.

In the meantime, here's a resonant little quotation. The essay I read this morning was Kathryn Kerby-Fulton's "Langland and the Bibliographic Ego", in which she suggests that Langland revised the C version of the poem from an imperfect version of B not because it was the only one he had available, but because it was the version that was already abroad, already in circulation, and the one that most needed correcting and updating. She quotes Pearsall: "The C-reviser seems to have worked piecemeal, outward from certain cores of dissatisfaction, rather than systematically through B from beginning to end."

Working outward from certain cores of dissatisfaction? This seems to me a helpful way of thinking about gradually making some changes. No lightning bolts; no revelations; just the slow work of reformation through reading and writing around certain central cores and clusters of ideas.

Saturday, November 11, 2006

It's all about the statistics...

... as the oncologist said, when laying before me the options for treatment. One of the mixed blessings about having a disease such as breast cancer which is being so intensively researched is that there are a number of possible options after surgery. There are no promises to be made at this stage, just the stacking up of statistics and probabilities about going for ten years without a regrowth of cancer cells (when, I guess, I am pronounced 'cured'). If I do nothing, I have an 80% chance of getting that far: chemotherapy, radiation and hormone therapy of various kinds all have the potential to raise that percentile (as do exercise, diet, attitude, etc. but these are harder to quantify).

Mitchell drew a rough graph and sketched out the choices, or 'arms' of a clinical trial he says I am a candidate for, giving me the information brochure, the consent form, and the website of the trial. I won't go on, just yet, about the intricacies of these possibilities, but I have been interested to see how long it has taken me to understand the document and the meaning of the choices before me. 'You're an academic,' he and Suzanne have both said to me at different stages, 'you'll understand about statistics'. Well, yes and no. Which is the best way to see this? My own chances of recurrence? Or my chances of remaining among the majority of the 100 women setting out at this stage who will be given the all-clear ten years from now?

Given that I am an educated women with the equivalent of ten years' tertiary education in textual analysis, literary criticism, philosophy and social theory, I wondered why it was taking me so long to get my head around the details of the choices before me. I started thinking about the ethics applications I had read in my department. It was odd to see myself giving consent to take part in a trial and approving the storage and analysis of tissue samples, the anonymity of results, and so on, when I have assessed a dozen or more ethics applications and their 'plain language statements', all seeking to make sense of research projects in communications and cultural theory to an unsuspecting public.

And then I started thinking, 'What about the women without the benefit of my education? How could they possibly make sense of these booklets and leaflets and websites?' But then I remembered Suzanne's comments about Kylie Minogue, another Melbourne girl with breast cancer. I had read about her dismay at her original diagnosis, and her account of writhing in tears on the bathroom floor during her chemotherapy. While I have had a few bad nights and some anxious moments, I haven't experienced anything like this drama. Was I missing out on something? Suzanne just laughed and said, 'Of course she is! She's a performer; she's not analysing things the way you will.' And of course it's so, that different women will experience the disease differently, and need and want different levels of explanation when it comes to assessing treatment options. I make this comparison not out of disrespect to Miss Kylie; but mostly to make the point to myself that there are no normative responses to cancer and its treatments. That is, I don't need to start planning a dramatic comeback tour of my own (new haircut! more sequins! more feathers! a new theory about historicism and ritual practice!); it's ok just to keep going on quietly and peacefully as I am, and as I will now plan to do for a year or so.

That said, I'm still finding it difficult to chart this new course where I don't juggle a hundred committees and tasks each day, as I seem to have been doing over the last few years. It took me the best part of an hour to write the email to my Dean, explaining that I wasn't going to let my name go forward in contention for one of the big associate deanships for 2007, as we had discussed. It took her about five minutes to write back graciously saying that would be fine.

I'll see the oncologist again on Tuesday, and expect to sign up for the trial of different regimes of hormone therapy (in addition to the radiotherapy that is standard). One of the great things about this is that it means I won't, in fact, have to undergo the rigours of chemotherapy. I still reserve the right to as many tears as I need, though.

Warmest thanks, too, to all who've written, from near and far, from the present, and from the past. It's great to hear from everyone, and I'll write back soon...