Lecretia’s most telling symptom, and the one she’s struggled with the longest, is something called homonymous hemianopsia. It means that she is blind in one side of her field of vision. In her case, it’s her left side.

It’s an inconvenient affliction, but also a fascinating one, which reveals a little of the inner workings of the human brain. Lecretia’s tumour is on her right-hand side but the contrariwise nature of the brain’s hemispheres means that damage to the right-hand side of the brain affects the left-hand side of the body, and vice versa. There is nothing wrong with Lecretia’s eyes. They are both in working order and she can see through either of them if the other is blocked. But her visual cortex is ravaged by cancer, so although a full picture is being passed through her optic nerve, her internal screen is only capable of processing the right-hand half of the image.

What this means for her in practice is something called hemispatial neglect. In some ways, the left hand side of her world doesn’t exist for her. I notice that if people approach her on her left, and talk to her, she might ignore them altogether, even if she hears them perfectly well. When she walks around the house, she frequently bumps into things with the left side of her body, because she doesn’t register the presence of objects in her path if they are on her left. You’d think a person with this condition would compensate, that having the knowledge that you aren’t seeing your left side would mean you’d become conscious of that lack of awareness and you’d turn your head to pick up the things you were missing on your left. But in reality that doesn’t happen. Lecretia’s brain tricks her into thinking she is seeing everything she needs to see.

I asked Lecretia to draw two clock faces. Notice how the right hand side is fine, while the left on both is distorted and scattered. This is commonly seen in people with hemispatial neglect.

When we have dinner, she will eat the right hand half of the food on her plate. When she’s done, I reach across the table and turn her plate 180° to reveal the half she’s ignored, and then she eats that. Our cat has figured out exactly what’s going on, and he will invariably approach Lecretia from her left side, and if I’m not quick enough, he’ll successfully steal food from her without her noticing. When she reads a page, if she’s not careful, she will often ignore the left hand words and lose track of what she’s reading. If she’s looking at two columns of items, such as on a restaurant menu, she’ll ignore the left column. And whenever she’s lost something – she is forever losing things – usually it will be in front of her, on her left, and she just hasn’t seen it. “I don’t have a fork,” is a common complaint at dinner. None of this was obvious before Lecretia’s diagnosis, and if it were a factor it would have been a much more subtle symptom than it is now.

In late 2010, when Lecretia was in good health, she was driving home one night alone from a night-class in Newlands. The weather was terrible, it was dark, and as she approached a slight bend in the road, she hit a parked car on the left-hand side of her, totalling her car and doing a lot of damage to the other. She walked away shaken but unharmed. A nearby resident said it had happened before on that bend. I taxied out and picked her up from a good samaritan’s house on Newlands Road, and we took a taxi back home again, while our car was towed away.

As the days followed, we explained it away as a genuine accident. The conditions, the location, the fact it could have happened to anyone. We didn’t look deeper, didn’t see what else might have been right in front of us. I wish I had been more aware of what we might not have been seeing. Was it possible this was the first sign something wasn’t right? We might have got Lecretia diagnosed sooner, got her treated sooner, got the whole damn thing resected. If I were a neurologist, I suppose, I might have noticed something was amiss. But I didn’t notice, and here we are. And I know that now and for years to come, I will always wonder if things could have turned out differently, if I hadn’t been so blind.

I did want to write yesterday on the applications to intervene, but after discussing with Lecretia, I decided I would wait until after midnight in Gallipoli. Anzac Day is an important day to Lecretia, as it is the day above all others where we remember the sacrifices our countrymen made for our modern freedoms. Unfortunately Lecretia wasn’t well enough to attend a Dawn Service, but we spent the day listening to and watching broadcasts that told the stories of some of the greatest New Zealanders that ever lived. Anzac Day belongs to them.

I hope Lecretia doesn’t mind me telling this story, and I hope it isn’t gauche to tell it this weekend, but Lecretia made her own small contribution to the welfare of our veterans and their families. As the lead legal and policy advisor on the Review of the War Pensions Act 1954, she was part of a team, led by Sir Geoffrey Palmer, that travelled up and down the country consulting with hundreds of veterans between 2008 and 2010, developing recommendations on a modern welfare scheme for our returned servicemen.

The report was completed May 2010 and submitted to government shortly thereafter. You can find Lecretia’s contribution acknowledged in the foreword penned by Sir Geoffrey, the Commissioner responsible for the report. The Review of the War Pensions Act 1954 was the last law reform project Lecretia saw through to completion before she received her cancer diagnosis in early 2011.

The report was largely successful with the government implementing 132 of the Law Commission’s 170 recommendations in the Veteran Support Bill. The Veterans’ Support Act 2014 recently came into effect, adding $60m of funding over five years to implement the recommended changes, which included a range of additional benefits and support for our country’s heroes. The first changes came into effect July last year, with the rest of the changes coming into effect July 2015. The scope of the changes that the government implemented were not as generous as the Law Commission had proposed, possibly due to the timing of the report and the contemporaneousness of the Global Financial Crisis, but they were still significant, and the law was successfully modernised.

On a weekend of remembrance, it is tempting to reminisce, but we have plenty of present day news to share. Over the last two days we found out that the Care Alliance, the Voluntary Euthanasia Society and the Human Rights Commission have all successfully applied to intervene in Lecretia’s case. Having had the chance to reflect on the judgment, we’ve come to the view that it’s reasonable. By denying the applicants, some parties may have responded that the hearing is ignoring the voices of vulnerable New Zealanders, or ignoring overseas evidence for or against Lecretia’s case. As it is, they have been admitted, but their participation is so strict and on such specific terms that they can only reasonably respond to Lecretia’s circumstances. The applicants are unlikely to be able to speak in court unless invited to, so Justice Collins should be able to keep things to an unchanged timeline. And the length restrictions on their submissions will force them to exhibit concision and focus.

In the event of a ruling in Lecretia’s favour, these parties will not be able to complain that their evidence was ignored and that they didn’t have the opportunity to be heard.

Participation is so strict, in fact, that I am beginning to wonder if the reason that the Care Alliance in particular has not released a statement yet is because they can’t figure out whether they regard the judgment as good or bad news.

We’re grateful because of the news we received on Friday that Lecretia’s chemotherapy treatment doesn’t look like it’s working. With Lecretia’s emergency department visit last month and her increasing difficulty with movement since her first treatment, the oncologist’s view is that it would be unwise to safely continue chemotherapy, unless Lecretia sees some sort of positive benefit over the next two weeks. He doesn’t expect we’ll see that benefit.

The conversation has moved to the topic of palliative care and symptom management. From a New Zealand medicine perspective, this is the end of the line in terms of cancer treatment. The oncologist also indicated that timelines were perhaps shorter than we anticipated, so we are processing that news too.

We haven’t given up hope, and are following up the latest leads and clinical trials that might improve Lecretia’s health. Travel would be difficult right now but I think we would still consider it for a promising clinical trial. We are reviewing some favoured options. We’ll let you know how they go if we pursue them.

Lecretia arrived back home from Tauranga on Tuesday night, and it’s been great to see her. After the interlocutory hearing I drove out to the airport to pick her up, thinking I was going to be late, but when I arrived I found they were still bringing the disabled passenger lift out to the plane. Unfortunately Lecretia can no longer embark and disembark aircraft without a lot of assistance.

You’d think not much would happen in two weeks. To be honest, I was pretty upset with how things had progressed. If Lecretia’s mum hadn’t have given me a call to warn me, I would have been shocked, frankly.

When I left Lecretia a fortnight ago, she was drowsy, but still mobile, and able to do some things for herself. Now, the paralysis in her left side is fairly advanced. She can no longer move her left arm or left hand at all, it’s sort of curled up at her side like a gnarled branch. When she walks she sort of flicks her left leg forward from her hip, which is the only part of her left side where the muscles are still any good.

Her right eyelid droops and her left eye bulges a bit, and her smile is lopsided. I can only put this down to intracranial swelling. She’s taking steroids for that, but she doesn’t like steroids as they make her ravenous and she eats more than she wants to eat and she can’t sleep when she wants to sleep. She’s taking a cocktail of anti-emetics, laxatives, sleeping pills, steroids, anti-epileptics and natural supplements, each with effects and side-effects that are balanced to cancel each other out and provide maximum positive benefit and minimum negative impact. But the mix leaves her drowsy, irritable, hungry, and constipated. The alternative is for her to have headaches, paresthesia, double vision, and risk brain swelling, seizures, and unconsciousness.

She’s coming to the end of her current chemotherapy cycle, so she should be feeling better if it was working. Given the visit to the emergency department earlier this month and the swelling I’ll be interested to hear what the doctor has to say tomorrow. Will we do another cycle of chemotherapy? If not, what then?

Despite all this, I am so happy to have Lecretia back home with me. She is still the same beautiful girl. She still sings to her cat and loves her food, and is bright and intelligent and incisive. She still aims to get back to work and to head overseas to India after the hearing, with me pushing her from one end of Rajasthan to the other in a wheelchair if necessary. We’re making plans to travel and visit friends with the expectation that we will be able to do all these things.

Life is good. After spending the day working on something together that we’ll share more about in the future, we went to Lecretia’s favourite salon de thé with her mum so she could eat cake. I then pushed Lecretia down the street in her new wheelchair and we caught up with some of Lecretia’s workmates who were wishing a colleague farewell. She enjoyed catching up on all the work gossip!

The district nursing team have been fantastic actually. They’ve dropped off a walker, a wheelchair, and a shower stool, along with a few other bits and pieces, so we can take care of Lecretia at home and get her around. Of course, Lecretia’s view is that all of this is a temporary inconvenience and that she will be back at work before you know it. And I hope she’s right.

Tomorrow we should hear the final decision on the applications to intervene. We’re still hoping for the best.

At the High Court today

I spent the day at the High Court today, listening to the applicants to intervene in my wife’s hearing. The applicants were the Care Alliance, the Voluntary Euthanasia Society, and the Human Rights Commission. It was my first time in a courtroom since a school visit to a district court in my youth. I don’t share my wife’s fondness for them!

The applicants claimed they had evidence that they could present in addition to that presented by the plaintiff and the defendant. From my naive point of view, the question that didn’t seem to get answered was: if the evidence is relevant, why can’t they lobby the plaintiff or defendant to include their evidence and let those two counsel present it to the judge themselves? None of the applicants really had an answer to that, to my mind, other than claiming they would be able to represent those views better. It was hard to see how, particularly with some of the intervening solicitors presenting what seemed to me quite muddled perspectives and a deluded view of the scope of the case. Besides, if there is expert evidence that should be heard, that can be channeled through the two counsel via affidavits. Even I can see that a five-headed hydra of counsels would be awful and unmanageable. And if the length of time it took the applicants to make their cases today is any indication, it would draw things out mercilessly.

I respect that all of these parties have plenty to say on the issue, but that belongs in the realm of public debate. Nothing I heard in the court today suggested to me that they would add anything to Lecretia’s particular case except complexity. These people have agendas, and they don’t belong in the courtroom, arguing over my wife’s fate, which is all that this case is about.

What angers me is that my wife faces a long, drawn-out, undignified death, and these applicants, if admitted, will almost certainly subject my wife to a long, drawn-out and uncomfortable trial. She doesn’t have time for that.

The judge will make a decision by Friday as to whether the applicants will be permitted to intervene. I really hope he will agree to keep the scope of the case to my wife’s plea, and leave the wider societal debate on assisted dying to be addressed by politicians, who should be the ones looking at the issue more broadly. Their silence is starting to appear cowardly. Their inaction is precisely why my wife has been forced to spend her precious remaining days pursuing this case through the courts. It’s time for politicians to do their job, so that people like Lecretia don’t have to take these sorts of actions.

Aitutaki, September 2011

Last night I caught up with Lecretia over FaceTime and she was looking really well, having just been out for dinner with her parents in Tauranga. It’s clear that the nadir of the chemo cycle has passed. It was worrying because you’ll recall that during Easter we had a trip to Tauranga Emergency Department after she’d collapsed. With any of these things you wonder whether it’s the drugs or the affliction and what the new normal is.

The big news of the day though was mine. As of this morning I am now on leave from work indefinitely. This is probably well overdue. Lecretia, though lucid, smart as a whip, and in good humour, requires a lot of assistance in getting around. She can’t really be left on her own as if she falls she’s not able to get herself up again, and she can’t prepare food et cetera. Up until now, I’ve relied on a delicate juggling act of friends, family, and Lecretia’s colleagues at the Law Commission to help look after Lecretia and to enable me to do my job, but it was increasingly clear that it was getting tougher and tougher for me to do that. So now it’s time for me to be there for her full time.

The company I work for has been amazing, and once I explained what was happening, they offered to give me leave and to hold a job open for me while we go through this next phase. When I return, depending on the length of time, it may not be the same job, as the company changes so much, but it will be a job nevertheless. Given I work for one of the most exciting companies in the country it’s a real relief I won’t have to re-earn a place there. I’ll be forever grateful to them.

So the question for us is – what now? Where once we were limited by available annual leave, finances, and Lecretia’s health, we’re now just limited by two of those things. If Lecretia were well enough, we could consider a world trip, but sadly I don’t think she is quite well enough. Lecretia would like to go to India, but I am terrified of attempting to help her through the crowded city streets of Delhi, with her half-blind and limping slowly on her good leg and yelling at me to help her find a bathroom. I am trying to persuade her that a holiday somewhere in the South Pacific might be nice, where we can lay up on a beach in the sun and someone can bring me ridiculous cocktails with fruit salads of garnishes attached while she tans herself or floats in the lagoon. I did suggest a road trip around NZ as a friend of mine is currently doing, but she replied on FaceTime last night, “I don’t like road trips.”

Anything we do is also limited by the chemotherapy cycle, which requires us to be at Wellington hospital for one day every three weeks, and the aftermath of that cycle, which seems to take about a week to pass. We also have Lecretia’s hearing of course, which is likely to come before the court next month. The reality is that over the next while we might get a few small trips away but we will more likely be at home for most of the next two months. What I’m hoping is that Lecretia’s health holds out so that we do get a decent holiday after the hearing. If you have holiday ideas for people with mobility issues I’d love to hear them. Fingers crossed we get the chance to take some of those ideas up.

Lecretia used to take me along to a few dance performances – some of which I didn’t like, but a lot of which I was surprised to find I did. She opened my eyes to the amazing things that were happening here in the dance scene – a world I really had no appreciation of before meeting her. Without her I never would have known about the genius of contemporary New Zealand dance icons like Michael Parmenter, Neil Ieremia, Douglas Wright or Tanemahuta Gray.

Lecretia was a talented dancer herself. She could absolutely crush a night-club dance floor like no one I’d ever seen. Before our visit to Argentina, we did tango lessons and had a lot of fun with it – but with the paralysis beginning to take hold – dancing got more difficult for her to do, and I found myself picking things up more quickly than her. This was a strange reversal of proficiencies for both of us. I still grab Lecretia in a dance hold from time to time when a song we like comes on, but it’s a slow, safe rock from side-to-side now.

Lecretia’s dear friend Jess shares a story of Lecretia being in her dance class in Wellington a few years ago:

I first met Lecretia in the late 90s. I was teaching dance classes at the Wellington Performing Arts Centre (on Allen St, Courtenay Place – THAT long ago…) and she was one of my students.

For some reason I had a lot of lawyers in that class but Lecretia made me the most nervous. Not because she was intimidating at all, because she’s tall, stunningly beautiful, has this grace and elegance about her and to top it off, she’s super down to earth and lovely! That was enough to make me feel rather awkward in my late teens/early 20s as a teacher. 😉

Luckily Lecretia became one of my regulars (or my kids as I would call them). Over the years my confidence as a teacher grew and by the time I moved to Oz in mid 2000s I was proud to say my kids were now my friends.

My best memories, other than watching Lecretia dance would be a lunch we all had in Wellington. It was just after your wedding and Lecretia brought your wedding photos to share with us all. Talk about a beautiful bride…. wow!!!

Another really touching moment was seeing you both in Melbourne a few years ago. I was so humbled that on your holiday you both took the time to catch up with me and mum. Knowing how busy holidays are anyway and considering how much energy it took for Lecretia. That was the best and still fills my heart with love.

I should really mention my mum too. She’s also been a dance student of mine since the 90s and Lecretia and her were dance buddies. That would normally mean pairing up for exercises across the floor and perhaps standing next to each other. But with mum and Lecretia it also meant chatting and giggling through classes and I’ve heard there was some incident involving hats with bells and the two of them getting their heads stuck together?

I’d just like to point out that wasn’t in my class as I would not approve of such shenanigans. 😉

I’ve always seen Lecretia as a strong, wahine toa. She’s commanding in the most approachable way. As much as my heart aches for what she is going through I am also so proud to see that she’s still kicking ass and making the world listen to what is important.

Old Government Buildings by Harry Chapman

I’ve been asking Lecretia’s friends and family to share some stories about their experience of knowing Lecretia. One of the things I love about my wife is her humility. She tends to downplay her contributions and achievements and is the sort of person who would normally hang back and let others take the limelight rather than take it for herself. In the stories I’ve received so far this has proved a consistent observation.

This first story is from one of Lecretia’s ex-workmates, Zoë Prebble – who recalls meeting Lecretia for the first time.

In my last year of Law honours, Lecretia used to come every week with Geoffrey Palmer when he taught our public law masters’ seminar class. It was a two hour seminar at something like 6 or 7 pm on a Tuesday evening. I remember thinking, whoever this intimidating, brainy right-hand person of Geoffrey’s was, it must sometimes feel a bit above and beyond the call of duty to have to listen to us all bang on for 2 hours at the end of her work day. But she was always gracious, and turned up nonetheless, and never pronounce “Oh you boring dummies!” to us, even if the thought may have crossed her mind!

My cousin, Becky, was also in the seminar, and she had done a summer clerk stint with Chen Palmer and had come across Lecretia who was already there. She said she was a lovely, as well as brainy, person.

A couple of years later, I worked with Lecretia when she joined the Law Commission. I was impressed and, well, awed really, again – both because she’s so smart and accomplished and absurdly capable and churned through so much work, but also because I got to know her better as a colleague, and got to know her sparky sense of humour, and real kindness.

This always sounds cheesy to say, and I’m sure Lecretia hears it a lot, but I’ve looked to her for a long time as an impressive and important role model. I’ve always been impressed by her and admired her. That’s only intensified over these last years and months as she’s been so courageous and generous with her time and energy in this really important fight for law reform in the area of death with dignity.

I caught up with Lecretia tonight as I often do: over FaceTime from another city. This time it was me calling her from our home in Wellington, back to where she is with her parents in Tauranga. Although we’re busily making arrangements to maximise our time together, sometimes our circumstances require us to spend our evenings in different places. It’s never easy when we’re apart.

I don’t know how we’d cope with these separations without things like FaceTime or Skype. It’s strange to think that video communication was still uncommon as recently as five years ago and now it’s everywhere.  It’s brought us all closer together, and yet it in a funny way it hasn’t, too.

Lecretia appears to be doing okay, but the thing about video calls is that it’s hard to tell. Recently I was in Canada for a week and I video-called Lecretia most nights, and I got the impression that things were normal. However when I finally came home to see her a week ago it was clear that things had changed. She was a little less steady, a little more vague – a subtle deterioration that in person was obvious but was unnoticable in the compressed and transmitted version of her that met my gaze from behind a pane of glass.

That glass lets a lot through, but obscures a lot too. What it shows is a flat image and the illusion of depth, something open to interpretation. What it hides is the true nature of that depth – the person that casts the image. Seeing Lecretia over FaceTime from Canada, I didn’t want to see any change. I saw what I wanted to see. When I got home, the change in Lecretia’s condition was impossible to ignore.

There’s a pane of glass right now between you and me – and that acts as a form of separation too. It’s easy to close the window, to click the next link, to dispel the image. To think you understand and then forget all about it. I wonder how many people who read the articles about my wife and question Lecretia’s motives on some intellectual or theoretical basis would revise their view if they could step through the frame and meet her and see her in person? Or meet or see someone in similar circumstances?

To me only someone completely detached from the reality of Lecretia’s situation could expect or want her to suffer needlessly and against her will. I want to reach through the glass and find empathy with those people: to help them see that behind it there’s a real woman here with me, with her own hopes, dreams and disappointments. And that she has a big heart. I hope this blog helps.

One of the most saddening things I have to read or hear are comments by people who suggest that if Lecretia wants to die so much, why doesn’t she just commit suicide? And worse, that she’s a coward for not doing so.

There are so many things wrong with that line of thinking it’s hard to know where to begin.

Lecretia does not want to die. She never has. She is not and has never been suicidal. She loves being alive and she loves her family and she wants to maximise her time with them as much as is possible.

Committing suicide would rob my beautiful and treasured wife of the quantum of life that she believes is still worth living.

If Lecretia were to commit suicide, she would need to do it alone, as anyone else present would risk a criminal conviction. She is not as strong as she once was, so her options would be limited, and she would need to do it very soon, because soon she will not have the strength to commit the act herself. The act would be extremely traumatic for her and her family, whom she loves, and if she was unsuccessful she would only manage to increase her pain and suffering further. It’s not an option. How anyone can suggest that Lecretia find a quiet spot and hasten a lonely, dangerous death is incomprehensible to me. The suggestion seems to come from a place of pure cruelty and malice.

What Lecretia faces are the horns of a dilemma: kill herself now and rob herself, me and her family of precious moments together, or risk waiting until death takes her, which could be weeks or months of needless, potentially agonising suffering. Palliative care cannot reverse the symptoms of Lecretia’s cancer. They can only numb Lecretia to the point where she is unaware of them, sustaining her existence, but not her quality of life.

Lecretia has decided that although she does not want to die, more than that she does not want a life of no quality. As the arbiter of her own life it is for her to decide what a life of quality is: not me, not the doctor, and not people with their own agendas about what life means and who it belongs to.

To subject Lecretia to a life without quality seems unjustifiably cruel to us too. It’s between these two cruelties that my wife is seeking a compassionate path through the courts. She doesn’t have any other option.