Emmaline's Blog

Memorial service

We are scattering Emmaline’s ashes and holding a memorial service on Sunday 27 September 2015 at Broulee, New South Wales. The service will be held on North Broulee Beach and will commence at 10:30am. Following the service we will provide a picnic lunch on the beach. 

Please bring weather appropriate clothing and something to sit on. As the location is in a Nature Reserve we are not able to leave flowers or any other items at the site. See map for location and parking areas. It may take about 15 minutes to walk to the memorial location. 

From 5:30pm on Saturday 26 September 2015, we will also host a BBQ at 20 Pacific Street, Mossy Point, New South Wales. Everyone is welcome to both the BBQ and the Service. Please let us know if you are coming so we can arrange catering.  If you have any questions please ask.

Donation in lieu of buying flowers

We’ve looked at various options for allowing people to make donations in lieu of buying flowers for Emmaline’s funeral. In the end we’ve settled on the simplest.  If you’d like to donate money for Nelleke and Anouks’ future education then you can make a direct deposit (including your name in the description field) into the following designated account:

Account name: Mathews 
Bank: Commonwealth Bank Australia 
BSB: 063307
Account number: 10248002

Alternatively you can bring a contribution to the funeral and we will deposit it into the account on your behalf. Following the funeral the money will be transferred into a trust account for the benefit of Nelleke and Anouk and their future education.

Funeral

After much deliberation, we've decided to hold Emmaline's funeral at Duneira, Officer Lane, Mount Macedon. The ceremony will commence at 11:30am on Tuesday 9 June, and will be followed by lunch and drinks. We're asking people not to buy flowers but instead to make a donation in lieu to a trust fund for Nelleke and Anouks' future education. I'll provide further details on how to make a donation in the next couple of days. 

We'd also like people to bring flowers and foliage from their own gardens. Our garden was such a source of comfort to Emmaline over the past year - during that time she saw so many plants germinate, grow and die. It made her feel grounded when so many other things were changing. So we want to surround her at the funeral with flowers and leaves from the gardens of the many people who love her.

If you aren't able to make it to the funeral feel free to send us a message which we'll post up or read out on the day.

Children are welcome to attend and we'll have some activities to keep them involved. Or if you'd prefer to leave your child at home or school then that's fine too. There is a big garden to walk around, but it will be cold so please bring warm clothes.

We're also holding a small, private vigil on Sunday 7 June. And in the coming months will hold a memorial service at Mossy Point in New South Wales.

It'd be great if you could spread the word amongst Emmaline's friends, colleagues and family - it's hard for us in the short time available to tell everybody who needs to know. 

Please check back here for updates. 

Emmaline passed away today

Emmaline passed away today at 1pm in her room at Caritas Christi, with her family around her. She had a difficult time on Sunday night, but her final passing was easy. I'll post further updates and funeral details over the following days.

More news

Emmaline came home from Caritas Christi for a week. At first she rallied, and we had some nice times together as a family, but then her health began to deteriorate. She returned to Caritas Christi on 28th May. She is now confined to bed and is unable to eat, drink or communicate with us effectively. Most of the time she is asleep and she is generally comfortable and not in pain. We are getting many lovely messages from friends and family for which we are hugely grateful, though we aren't able to reply at the moment. I'll provide further updates here.

Update from Rainer

This is an update from Rainer. I'm sitting with Emmaline at Caritas Christi where she's getting respite care. She's not feeling well enough to update her blog, but has asked me to do it for her.

 10 May 2015

10 May 2015

Through March Emmaline continued on her gruelling course of the chemotherapy drug ifosfamide. But on 10 April she had a CT scan which showed that the drug wasn’t working and that her disease was progressing. She stopped taking the ifosfamide, and took a break from treatment to recover and take stock. However through this time she continued to get increasing pain. On 6 May we had another appointment with her oncologist and we talked about what to do. The oncologist suggested two possible courses of further treatment: a combination of Gemcitabine and docetaxel, or pazopanib. Alternatively she could just stop or postpone further treatment. The combination therapy has a higher chance of reducing the size of the cancer tumours, relieving her symptoms and extending her life by some months, but is also more likely to have unwanted side effects. And a significant proportion of people receive no benefit. The pazopanib is unlikely to reduce tumour size but will probably inhibit their growth, and the percentage of people who have bad side effects is a lot smaller. But the studies on which the relative probablities are based are small and full of unknown variables. It’s impossible to know what the best choice is. What Emmaline is clear about now, especially following the experience with ifosfamide, is that she wants to maximise her quality of life in the time that remains. She doesn’t want to hold out hope for some remote reprieve, if it means trading in or risking quality of life now. We all decided, hesitantly, that she would take pazopanib.

However, that same night, before commencing the treatment, she started getting overwhelming breakthrough pain. We contacted Melbourne City Mission who were able to act quickly, sending out a nurse to administer intravenous pain medication that provided relief. After a couple of days they arranged for Emmaline to be admitted to Caritas Christi Hospice for respite care, and she has been here ever since.

In many ways it’s confronting being in a hospice, but the level of care and comfort that they can provide is so much higher than what's available at a regular hospital. Emmaline was expecting to come in for a short time, but it's really starting to drag out now and she's keen to come home. She's been having a difficult time with pain, fatigue, and lymphoedema in her leg which makes it difficult for her to move around. The current plan is to stabilise her medication and return home. This could be in the next couple of days or early next week.

News from the CT machine (plus DNA analysis)

I had a CT scan yesterday and the results aren't great (nor are they terrible, I should add). Some aspects of this are a bit speculative, because the 'baseline' scan we were working off was from December. Over the summer I had a break from treatment and went to Mossy Point, and during that time there was the possibility (so we said in advance) that the radiotherapy was still reducing the tumours, and also the possibility (we say in retrospect) that all the tumours were growing and multiplying.

This absolutely does my head in: knowing that I can feel as well as I've felt for several years, blissed out on family and landscape and harmonious togetherness while my tumours grow and multiply. And then I come to chemo, the thing that is so hard to endure, and that is the time when things are at least somewhat more stable, if not actually repairing.  

Anyway. Data. A lesion in my lung has increased from 0.9 x 0.9cm to 2.2 x 2.2cm, other lung tumours have increased slightly and there may or may not be a new one forming at the base of one of my lungs. The main tumour in my liver has increased from 9.5 x 11.1cm to 11.8 x 13.7cm. There's half a dozen other tumours through my abdomen, some in lymph nodes, some next to (and inseperable from) major veins and arteries. There's one entirely new tumour, 2.3 x 2.8cm and a whole list of bumps and blurs that are "suspicious for tumour thrombus ... suspicious for peritoneal spread" etc. There's even a lesion in my kidney that is "suspicious for metastatic involvement", so now I have "worsening of the pulmonary, hepatic, renal metastases and nodal disease", plus a list of new lesions, and sites that are probably bone metastases. 

 Cross-sectional image of the largest liver tumour, looking from my head towards my feet.

Cross-sectional image of the largest liver tumour, looking from my head towards my feet.

Of course it all made me cry, made me furious, made me question the value of this chemo drug. But we do have another source of data, which is a chest x-ray from my first round of chemo this year, and although it's not a perfect comparison (different angle and method) the tumours look distinctly bigger on that x-ray than on the December scan, so medical consensus is that it's likely that a lot of this growth took place over the summer and that it's worth persisting with the chemo for another two rounds, then scanning again. It's important to give the Ifosfomide a proper chance, because it's the last of the frontline treatments. There's a lot of other possible treatments, but they're less likely to work. So two cycles. That's all I'm holding in mind at the moment. 

The next piece of news is that we asked for my original biopsy to be brought to Peter Mac to look for DNA mutations that might be targetted by newer cancer drugs (a 'somatic panel mutation analysis'). They tested for a very long list of known-to-be-meaningful mutations with no results. The only mutation that was detected was at TP53. TP53 was explained to me as a kind of quality assurance gene that checks that things are going well or forces cells into a suicide program if there are problems. It's thought to be hard to have cancer at all without having a mutation to TP53 and no tumour can be targetted by developing a drug particular to TP53 because it is ubiquitous thoughout the body. So my oncologist said that basically the test showed that I have cancer. I'm glad to have done these tests, for thoroughness, and I'm glad that it was possible to have the tests done, even though they are so far out of the ordinary for my kind of sarcoma. It shows that this hospital can pull out some pretty advanced techniques if you ask. But in practical terms, there's no outcome for me.

Note: there's a list of somatic mutations in cancer at: 
http://cancer.sanger.ac.uk/cancergenome/projects/cosmic/



Sustainable funerals

Tonight I'm back in the hospital, hooked up to my pre-hydration, with my chemo starting within the hour. I'm vastly more relaxed than previously because I've got a single room. So I'm digging up this half-draft about Sustainable Funerals from a few weeks ago as a bit of a community resource. These are my notes from a local event that was part of the Sustainable Living Festival. I went along at the last minute and my Mum came with me. I think she was just being nice, but then she and I found it all so engaging that I thought I'd post a few points here.

The event was run by Annie Bolitho and I think I can give my understanding of and reactions to some of the issues she raised at the festival event because her major motivation was to open up broad community discussion about these issues. I don't think I'm stepping on her intellectual property, so to speak. There's a whole international (but you know, mostly American) movement towards green burials, conservation burials, green funerals and so on. There's even a doco, entitled "A Will for the Woods," showing in Melbourne around now (and elsewhere at some other time, sorry, you'll have to google it yourself).

The Sustainable Funerals discussion started with people wanting data on carbon pollution associated with different options, just as one might set about quantifying any other event in life, but Annie resisted this approach. She wanted to talk about the social dimension of sustainability, about how satisfying and effective funerals really are and/or really could be, as vehicles for the grief of family and friends, as fully lived rituals rather than carbon transactions. The process of arranging a funeral can be very rushed, but it is possible to negotiate to slow things down and make more individualised, careful decisions, particularly if there's been some forward planning. It's worth seeking out funeral directors and/or celebrants who work with the kinds of practices you prefer. In some cases, there are well-defined protocols that have been developed by religious communities that can be adapted for environmental or other purposes.

One way to give friends and family more time to process the meaning of a person's death is to hold a vigil (not necessarily a religious one). In Melbourne now, one can hire a 'cold bed' (essentially a refrigerated steel slab that can be disguised as a bed) so that a vigil can be held with the deceased present without any question of physical complications, even in the height of summer. This is a better option, environmentally speaking, than the extremely toxic and environmentally persistent embalming fluids that are otherwise routinely injected throughout the deceased's body (which is pretty invasive, really). I'll put several celebrant's contact details at the end of this post, since they could be a starting point for arranging any of this.

And the question of a vigil leads to a question of what the person would be displayed in. They might not need to be in a coffin, but could instead be wrapped in a shroud, or in specific burial clothes for the dead. In the UK and in New Zealand there are woollen coffins (think very thick felt) and woven wicker options. I think there's creative possibilities there for both facing the reality of the processes of death, and also avoiding the visually shocking image of a person dressed in their best (as though alive) but lying in a box (as though trapped). I like the idea of defining a liminal (in-between) state by using softer materials that aren't quite associated with life or death. 

Shrouds might work for those who are keen on minimal barriers between their deceased body and the earth, as an alternative to a large wooden casket, so often made of rainforest timbers. Some people within the Muslim community bury their dead in shrouds, and their preferred funeral directors can give information about which cemeteries they work with, and the minimum requirements of those cemeteries for making, approving and handling shrouds. The issues are mostly to do with occupational health and safety for cemetery workers - shrouds must be strong and waterproof (typically plastic lined). The whole funeral business is full of technical details like this that must be worked out (ideally in advance) or the possibilities for individualised, sensitive funerals are easily derailed.

Some people seek out less resource-intensive coffins, made of from recycled timber or cardboard, and there are rental coffins promoted as green alternatives to the hardwood standard issue ones. But there are complications with every option. Cemeteries require assurance (and often documentation) about the load bearing capacity of the coffin for occupational health and safety reasons. And it's worth considering the long term effects of the materials - cardboard can contain noxious and persistent chemicals, rental coffins are only able to be re-used because they have very substantial inserts that must be buried or cremated with the deceased - almost as substantial as a coffin, apparently. In every case it's worth trying to find out the labour conditions behind the object, as well as the material costs.

And there is the issue of the sustainability of the site where a person is buried. Lawn cemeteries require such intensive maintenance that, over time, burial in a lawn cemetery can be more carbon-intensive than straightforward cremation. And - particularly in Victoria - it can be complex having a cemetery declared on private land, and having a private cemetery declared raises  issues of the long term ownership of that land, and management of grave access. Such complex, interlinked, long term considerations.

A key way to engage with these issues is to form or join a Friends group for a cemetery. One of the attendees was a core member of Friends of Coburg Cemetery and as I listened to her I thought that she'd identified a really practical niche for a bit of urban ecology and community building. Cemeteries are some of the greenest and quietest places in the inner city, with their layers of history potentially really engaging and accessible. I'm quite taken with the idea, though I think it's probably not my best moment for joining committees.

There are very few of these Friends groups for cemeteries, presumably because of the general avoidance of talking about death in our society. But the avoidance of conversation is what has led cemeteries and funeral directors to run with a pretty rigid set of practices. To return to the question of carbon accounting from the top of the post and the start of the Sustainable Living Festival event, there apparently isn't enough data to make meaningful comparisons, either because cemeteries and funeral directors haven't been talked to enough, or because they like to run a closed shop, depending on your perspective. Again, a good job for a Friends group.

Anyway, I've written too much already. For more specific information arising from the Sustainable Living Festival event, see:

Annie Bolitho, celebrant and Sustainable Living Festival event organiser:
http://anniefunerals.com.au

Sally Cant, a Melbourne celebrant with experience in running sustainable funerals
http://www.sallycant.com.au/other-ceremonies/green-funerals

Pia Interlandi, who makes garments for the grave and is also a celebrant
http://www.piainterlandi.com

Doco about green burials
http://www.awillforthewoods.com

And there's very much more if one does a web search for the many variations on this theme (conservation burial, natural burial, green funeral, etc).

A different garden

The plainest summary I can give of what it's like in the Peter Mac (subjectively, emotionally, and with all disclaimers claimed) is to compare the art collection and the sensory garden.

The art collection is kind of breathtaking. I'm forever trundling along some dank corridor and then catching my breath over some immediately recognisable and shockingly expensive painting. I don't know the history of the collection, but there are doctors who are seriously proud of and inspired by it. It's a well proportioned addition to an institution with 2500 staff, including 400 researchers, soon expanding to 600 researchers. It's fitting that they spend a tiny fraction of the budget on an art collection that is ambitious, substantial and sneakily flamboyant.

On the other hand, there is the 'sensory garden' on the upper ground floor. It's situated on a very exposed rooftop with no obvious patient access, outside the windows, next to the lifts. It's a cluster of small, faded, plastic pots, sitting on concrete. There is no suggestion of design, no structure, no actual soil, no irrigation, no consideration of methods to support life in an environment that is simply too harsh. And did I mention that the plants are almost universally artificial, save a couple of anaemic spider plants? To me that pretty much destroys any possibility of the 'garden' being 'sensory'. I've had more fun in a cigarette butt filled council planting next to a busy road.

So someone was inspired to declare the existence of a 'sensory garden', perhaps even imagining it as an aspect of 'treating the whole person', but the reality is that that the people who might build or maintain such a thing are relentlessly busy, under-resourced, overwhelmed, grief-filled, burnt-out, devastated, tired. A thousand forms of all of those things. And the upshot of a project that is being managed that badly is that it undoes itself. It's like a list of tasks that should be small and domestic but which has become chaotic and hideous. The claim that it's a 'sensory garden' when that is so far from the raw physical truth is a declaration - in effect - of a much more forceful point about death, neglect, futility, abandonment. It's a more articulate bit of installation art than the things in frames that cost the dollars.

That is how it feels. Sparkling conversations with highly trained doctors. Squalor and desolation in crowded, dirty wards. I wrote a post that described what actually happened to me, but honestly, who needs to read that? I had chemo and I went home.

 

NB: Rainer and I, of course, leapt spontaneously into a disarmingly detailed conversation about fixing the sensory garden of death. Fundraising, design, irrigation, reinforcing, maintenance roster and so on. But the hospital is moving in 2016, and we, well you know, we have two little girls and I keep on being sick. So I'm hoping someone fixes the situation at the new campus or else I will get off my sick bed and do it myself, vengefully. Make a goddam peaceful garden for them.

Rainer, I am so glad that we both love plants xxxx. 

Airy hair again

My hair fell out (again) on the weekend. My scalp ached and itched all the way through Friday night and then on Saturday morning, I was sitting on the rug with A (my one year old) when I scratched my head and a handful of hair came out. And I sighed, at the sensation of beginning again.

Last year, the first time this happened to me, my hair came out gradually. I'd feel my scalp begin to itch and sting and I'd follow my little routine of crouching under the plum trees, running my hands through my hair and shaking the hairs off my hands and onto the compost heap (where they very annoyingly blew around the garden and took about a year to break down). There was one intense morning, pre-dawn and early on in the process, when I lost perhaps 60% of my hair in one go. I squatted in my special spot wringing handfuls of hair out of the mass, shedding hair and tears, letting it wash through me like strange cleansing in the cool air. It was beautiful. At least, it was until I had to return to the everyday world and see the pale, lumpy, scraggly remains in the mirror, such a mismatched to the smooth hair that slipped out shining in the dawn light. And I was really taken with the way the process ordered the hairs so very precisely by colour. I lost the darkest hairs first, and I was left with the purest blonde ones at the very end. I had no idea of the range of tones in my own hair, and I definitely could only sort them that well if I could scan them into photoshop and select them with the magic wand tool. My (pretty baseless) theory is that the darkest hairs were the newest, most actively growing ones, and were most affected by chemo because they had the greatest rate of cell division. And the blonder hairs were the oldest, most sun bleached and most slowly growing. There was that magic of nature and numbers in how orderly the process was. The rate of cell division made visible, the bell curve of probabilty of a cell dividing at a particular moment expressed through tonal variation. Gorgeous.  

But this time, all the hair was dark and new, and most of it fell out in ten minutes. So the mathematical glory I was so entranced with last year just resulted in me looking like this: 

image.jpg

Even A looked at me a bit quizzically (as though she were grossed out but hiding it) and she was only one year and one day old. Last year, N (my three year old) was really quite deeply shocked by the change. She felt I was less female, less motherly, and she was really shaken up and destabilised. She could not be in the same room as my baldness - for months - and she would howl if my head was uncovered for a moment. So this time I commisserated with her immediately. I asked her advice and let her work out how to manage the situation (headscarves not wigs. Compulsory for me in public places, optional for her anytime she feels like it, just the same as last time. N, by the way, is meltingly beautiful in a floral peasant scarf with her curls spilling out). We watched videos in my bed through the afternoon, and talked intermittently about what a pity it was about my hair, but how it didn't matter, really. I shaved off the clumps first chance I got. So sitting here typing, I look like this:

 

 Painting of me by Rainer in 2002, Photo by Anica 2015. 

Painting of me by Rainer in 2002, Photo by Anica 2015. 

Anyway, the bad bit comes when I lose my eyebrows and eyelashes, and I'm a few weeks ahead of that particular wave. Even though they seem smaller, the loss of eyebrows and eyelashes is much more dehumanising than losing head hair. And naturally, losing body hair is sort of convenient. No stress there. 

I can forget what I look like most of the time, but of course I have to look in the mirror and live without the (false) reassurance of a solid, continuous, 'normal' identity. But I think that it's good to minimise that kind of superficial self-reassurance in any case, so I try to take any disappointment I have in my own appearance as fuel for a secular meditation practice. The more burdensome part is that I have to endure more of other people's judgements again. The hair loss - even if I cover it up, which i always do in public - is an invitation for people other than close friends to talk to me about cancer and to say insensitive things. Just like the hair was sorted for me by chemo, it's kind of magical to see how my friends and family just so consistently say sensitive, loving things about my situation and strangers out in the world say some shockers. On bad days I fantasise at near-gratuitous length about writing revenge-themed blog posts entitled: "What not to say." I'd report on the sales reps and the waiting room people who take it upon themselves to compare me to their repertoire of cancer stories, or (worse) to interpret my situation straight to my face. Nothing like intrusiveness to make me seeth. 

So... the burden of baldness again. I don't wear wigs because, to my mind at least, their unconvincing pretensions towards normalcy are uglier than just living with this reality. I shouldn't say that, because I know that some people find shelter there, but I can always spot a wig. My own attempts to manage the situation pretty well centre on headscarves. It's an attempt towards creativity and honesty, but always imperfect too. Nice that I can share it with N.   

Chemo Season Two, Round One

Reality is restoring itself block by block (in my heart at least) and I'm trying to make sense of what was a relatively short space of time. I think this was my most frightening and unsettling hospital admission ever, and the post-impact tremors keep rising unpredictably.  

We came back from holiday in time for chemo

And I knew it would be jarring, but I really didn't appreciate how much. I knew I'd be going into the proper cancer hospital, which is grimy, which doesn't isolate neutropenic patients like the women's does

Gardening again.

I planted a long layered border of celery, parsley and red Russian kale. I scattered red cos among the more established green cos, and fortified the population of dill, tarragon and basil. I filled the gaps in the strawberry guava hedge and planted a passionfruit against the new, high fence that our neighbours requested (it's their loss of sun, not ours, so we're maintaining equanimity in the face of the monolith of forest destruction). I put chook poo on the fruit trees, then realised I needed twice as much. I forgot to get more coriander. I still don't have a good-enough plan for the winter-shade spot that we look at everyday from the kitchen table. The garden, like science, is always more questions than answers. It never resolves, just draws you in deeper.  

When I was first home from hospital, barely able to walk after two months in bed and emotionally frail to boot, the first and best antidepressant I found was weeding. When I could not bear humans or my own bedridden self, I would limp to the garden, sit on the low brick wall in the sun, and pull out the weeds within my reach. There were plenty of them. I knew they were just weeds and it was routine to pull them out. But I had experienced myself as a collection of cells, vulnerable to transcription errors, and the plants were only little structures of cells too. I was dying of something meaningless, wishing for compassion, and I'd make myself sit there, destroying life. I'd pull out each plant and watch their roots dehydrate and their cells collapse. I would force myself to stay as close to my own mortality as I was able, as vulnerable as the tiny pieces of oxalis and chickweed. I told myself that I was "making my garden while I may". I was taking control of a tiny, wild, bit of the world and recovering the will to live. I was being nature rather than looking at it. Breathing, planting, nurturing, killing. Being alive in the world as it is. Taking my own place in the garden. I would lose focus and sob, angry at and pitying myself. I'd think of Shiva the Destroyer and those scary Buddhist demons. And I would gather my resolve and grow vegetables for my girls, for my husband, for myself. 

I garden when I can't bear to see people. I assuage my guilt over this by trying to give the humans produce. I suspect all this gardening enthusiasm is just a desperate lunge at control. I wish I were better at caring for people. I try to console myself that caring for plants isn't only about avoidance. We do eat from the garden at least once a day, mostly salads and herbs, but berries and fruit now too. I go into the garden to exercise my escapism, exorcise my demons, let myself flow into a sense of being alive again. I spend money we don't have on tiny seedlings and nurture them obsessively. But I usually come back from the garden a nicer person than I was when I went into it. And I am so proud that when my three year old finds a dandelion flower, she blows it to make a wish but also plants as many of the seeds as she can, so as to get more dandelions later. Particularly in other people's lawns :-) 

And this week, we have a banana flower - what lush luxury is this?