The Kindness of Strangers

Treatment on the Internet Empathy Card

One of Emily McDowell’s wonderful empathy cards.

I am sure that people who recommend obscure clinical trials or alternative treatments mean well. They think ‘this could really help them!’ and they only look at the possible upside. We might be grateful for the help, after all, for being pointed to something we might have overlooked. It’s a longshot, but we just might save Lecretia’s life, right?

But do those well-meaning people consider the work that puts on us and on Lecretia? Do they consider what happens if we follow it up and it doesn’t help? That, if it were pursued, and it failed, that we would hold a grudge against that person forever, for wasting what could have been quality time with a desperate, dying person on a false lead?

At this point, with Lecretia’s time left so precious, we can only look at options that have a scientifically-based track record of helping people with Lecretia’s exact condition. We are terrified of Lecretia spending her remaining time in hospital through side effects and complications, which is the last thing she wants, but which is a real risk with trials and experimental therapies.

For example, a very intelligent and well-connected friend of mine reached out to me with an offer of help, without really knowing much about my wife’s medical condition or current circumstances. He had a contact that had a PhD and had helped with ‘all sorts of cancers’. His heart was in the right place, and I know he was only trying to help, after all, everyone wants Lecretia to live, but below is a letter I had to write him in response. I hope he doesn’t mind me publishing it, because in part I would like to send it to everyone who sends me a link to an article on the internet, or a lead for a clinic in Germany or Russia, insisting that we have to follow it up. In most cases, if the option is any good, we have already investigated and dismissed it, or they either cannot help Lecretia or she is ineligible for their trial, or they have refused or ignored our pleas for compassionate admission.

Lecretia is already taking all the alternative supplements she can that have no or low risk of harming her. We have worked and continue to work hard for my wife, trying to balance reasonable health interventions with what her body will allow, while trying to maintain her quality of life. But more than that we are taking into account Lecretia’s wishes and what she wants to do in terms of treatment. Her scope for exploring new approaches is very limited.

Dear friend,

My wife has suffered through surgery, radiotherapy and chemotherapy and is now confined to a wheelchair, losing her ability to focus, and her ability to see. She has entered palliative care because her oncology team believes nothing more can be done for her from an anti-cancer perspective. We have received second and third opinions, and they concur with that assessment. The expectation is that she has limited time to live.

Giving us false hope at this point would be extraordinarily cruel. We have been sent so many false leads, and we have some quite nasty people making us feel guilty because we aren’t chasing their miracle cure fantasies. We are coming to terms with the implications of Lecretia’s health, and making us feel guilty for accepting what is naturally and likely going to happen is just unkind. We are likely going to have to deal with the loss of someone we love deeply. Dealing with guilt too will just complicate and intensify our grief.

So I ask that if you do make a suggestion to me, you do not make me feel guilty if I turn down your help. Because my wife cannot travel, has no desire for further treatment that has little chance of working, and it would take an extraordinary opportunity to make us want to divert my wife from her current path of seeking quality of life from her remaining time on this Earth.

If your lead fails, and I expend money and time and effort on it, then that would be an enormous burden on you. You will have screwed over a grieving family. So before recommending anything, please consider whether you really want that responsibility? How confident are you that it’ll work? On what basis? Medical knowledge and experience? The fact it worked with Lecretia’s precise medical condition? An article you read? Did you evaluate the sources? Because that’s what I’ll have to do. I’ll have to spend time poring through scientific articles to evaluate the chance it’ll work for Lecretia, spend mental energy on a judgement call on whether it’s worth putting everything on the line for, instead of spending time with her. Or is it just hearsay? A hunch?

We don’t have time for ‘it might work’ or ‘what have you got to lose’. We could lose everything. We could lose our last remaining precious moments with Lecretia. That is what is at stake. We only really have time for certainty.

I get recommendations all the time from unqualified strangers, and I can dismiss those. Dismissing a recommendation from a person I respect is a harder thing to do – and I hate to do it. So please be careful and think hard before putting me in that position.

I am sorry for being so blunt with you. But I worry that you may not appreciate the enormity of our personal situation and how involving yourself in the way you propose might affect our relationship, which I value greatly.

As a result, my friend replied that he would follow up with his lead and qualify it before coming to me with it. He has changed tactics from putting the work on me to doing the work himself to really evaluate what he is proposing and whether it can help Lecretia in particular. I’m utterly grateful for that.

If you’re the sort of person to recommend medical treatments to strangers with the intent of trying to help, and I don’t mean just Lecretia, I mean to anyone who is facing a terminal illness, my advice would be to do the same. Be skeptical. What is the science? Do you really have the skills to evaluate the science? Is there any science at all? How many failure stories sit behind the success stories? Have you qualified the truth of the success stories? How similar are the circumstances to the person you are trying to help? And if this is so successful, why hasn’t it been peer-reviewed? Why hasn’t it been adopted by the oncology community? Why isn’t it part of the standard of care? It costs you nothing to send a link, but it can cost a family a lot to receive it if it isn’t qualified and its veracity and relevance evaluated. Please don’t put the work on the family. They just don’t have the time.

If you want to advocate a treatment, I’d suggest that the right approach is to lobby the scientific community to evaluate and peer-review it, rather than pushing it on to desperate families who are already agonising over every medical decision.

We want to imagine that all cancer is treatable. That we can always beat it. That there is always an answer. The statistics tells us that that is just not true, and that is the sad reality. Lecretia hasn’t given up yet, and she has no desire to die, but she is facing very tough odds. We have to be very careful about next steps, so that we can give her the best possible outcome, without putting what she has left at too much risk.

Work In Progress

Today was a significant day for Lecretia. After seven and a half years with the Law Commission as a senior legal and policy advisor, she has handed in her resignation for health reasons. I have discussed Lecretia’s contribution to the Law Commission before, and though she has been on leave from the Commission now for a couple of months due to health, she was determined to participate in a Commissioner meeting to discuss progress on the Law Commission’s Review of Contempt of Court. That meeting was today, her last day at the Commission.

Lecretia and the Commissioners

Lecretia and the Law Commissioners earlier today for a progress meeting on the Review of Contempt of Court

The meeting was hosted at our home and was an opportunity for Lecretia to review progress on the report with all four Commissioners. They themselves were determined to receive Lecretia’s perspective on the report’s progress, so were eager to visit her. Though she was happy to help, their attendance was contingent on them bringing with them some almond croissants from Louis Sergeant’s. They complied.

Lecretia is gradually adjusting to more limitations. Last week we had planned to travel to Auckland for a cuisine tour. We’d made bookings at The French Cafe and The Grove and Sidart, but unfortunately Lecretia’s health would have made travel very difficult so we cancelled. Lecretia was naturally disappointed but I think I’ve worked out a compromise. I’ve organised an accomplished chef to come and cook for Lecretia at our place later this week. And two weekends ago we organised an event at a close friend’s here in Wellington with the lovely folks from Nikau catering for us.

We have been in touch with Mary Potter Hospice and they have been absolutely fantastic. They have dropped off an electric armchair which reclines and also elevates and tilts forwards to help Lecretia get into a standing position, which assists us a lot as Lecretia’s paralysis shows no sign of easing up.

Our home is gradually evolving into an accessible environment of ramps and rails and stools and walking aids. It calls to mind an article I read a couple of weeks ago that a friend linked to on Facebook, about a 90-year-old woman employed by Ideo, the legendary design company that came up with the first computer mouse. Ideo’s ahead of a trend. With our aging population, there’s a lot of money to be made designing for people in failing health.

I am worried about Lecretia’s vision, as it’s where we see the most change right now. She’s always had the hemispatial anopsia, but lately even her good side is giving her trouble. She’s begun seeing double and her perspective is off – things aren’t where she expects them to be. An eyepatch seems to help a little. But she can’t reliably tell me how many fingers I’m holding up, which concerns me somewhat.

Lecretia is doing a fair bit of sleeping at the moment, but when awake is as fiery as ever, poring over the evidence and counterevidence for her upcoming proceedings. Reading is more difficult for her now, so I do need to read a lot to her, but she is quick to pick up on things that are wrong or where she feels she is being misrepresented.

We’re focussed on keeping Lecretia in the best possible health for next week’s hearing. We are eager for it to start.

Going Public

Sunday May 17If you’ve been following Lecretia’s story, you are probably aware that Lecretia is going to be on TV One’s Sunday tonight at 7pm, talking about her illness, her action in the High Court, and a few other things besides. We’re pretty nervous about it, as you can imagine. Both Lecretia and I are resolutely private people, but we do understand the public interest in Lecretia’s case and the need to help people understand where Lecretia is coming from, which is why we agreed to three days of cameras and interviews, at a very challenging time, to get the story told.

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If Lecretia was able to choose the death she wanted, most people would probably have never known about her. My beautiful wife has lived a full and rich existence, greatly appreciated by those that know her. She is revered and respected by her friends and colleagues. Her cancer has struck us as utterly tragic, and utterly, utterly unfair. But if Lecretia had her choice, we would be working through it as a family and when the time was right, we would be coming together, saying goodbye, grieving and being privately devastated, and there would be no need to ‘tell the whole world about it’. Lecretia would have lived a wonderful life, with a poignant and precious closing chapter, a life lived as a gift to herself and to the favoured few that knew her.

But as Lecretia’s cancer forces her to confront her own mortality, she realises that she isn’t likely to have a death that is agreeable to her. The odds are that the essence of who she is will gradually unravel, and she will lose a lot of what she values about her life. Though she might remain alive, she would not truly be what she regarded as living, and she would be forced to continue to exist in a way in which she does not wish to be remembered. To avoid this, she has only one option: take her own life. And that would rob her and me and her family of quality time with her.

As a rational person, Lecretia has looked at how she might achieve an ending that gives her the maximum amount of quality life, and the minimum amount of suffering. She was inspired by Terry Pratchett’s famous Dimbleby Lecture, read by Tony Robinson. As with the UK, such a death is not possible in New Zealand. But there was hope in a recent Canadian Supreme Court decision. After consulting her lawyers, she decided to take a similar action here.

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Her court case is not going to be a forum for a broad debate about end of life choice, as much as some parties would like it to be. It is going to be about her, and her alone. She doesn’t have the luxury of time for politicians to make up their mind about the issue, and they certainly don’t appear to be in any hurry to have a conversation about it. So Lecretia is doing what’s right for her, and taking the only action available to her, to get the answers she needs about the Crimes Act when viewed through the lens of the New Zealand Bill of Rights.

Personally, I think that it’s a disgrace that she’s being forced to take action in a courtroom, and that interest groups who would rather see my wife suffer to satisfy their own warped and dogmatic principles are doing their best to stand in her way. The way I see it – they are free to die their way, Lecretia should be free to die hers. And it should be nobody else’s business but hers and the consenting physician that agrees to help her.

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Some people compare this with suicide. It is really very different. It is not as if, by not doing this, she would miraculously go on living. The difference between her and a suicide is that she is genuinely dying already. That is a fact, and we can’t change it, as much as we wish it weren’t true. She doesn’t have the choice to live. If she had that choice she would take it. This is not a choice about if she dies, it is a choice about how she dies.

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Lecretia does recognise that in taking this case, she is bringing these issues into the spotlight again. We hope that by going public about the case we get people thinking about what they would want if they were in Lecretia’s situation. We hope that politicians will confront this issue and summon the bravery to have the debate. If Lecretia dies and politicians sweep the issue under the rug again without looking at a law change that continues to poll as having overwhelming public support, and that even our Prime Minister has come out in support of less than 12 months ago, that would heap tragedy upon tragedy.

If you believe our politicians should be addressing this issue and that Lecretia and others like her shouldn’t have to go through the courts to get the choice they want, there are several ways you can help make that happen. As for us, we are focussed on the hearing, so that hopefully Lecretia can be granted the choice that she desires. Thanks for taking an interest in her journey.

A Future

Angela & Lecretia

Angela & Lecretia

Lecretia is no stranger to supporting others in dealing with loss, and helping them find a way forward. Here is a very special story from Lecretia’s friend Angela, who Lecretia grew up with in Tauranga.

My friendship with Lecretia began around the time of my twelfth birthday, when I invited a mutual friend to my sleepover party and she brought Lecretia along with her. Thirty years and many blocks of chocolate later, Lecretia remains a very special friend.

There are so many stories I could tell about Lecretia, and a few Lecretia would prefer I did not! There is one story that keeps coming to mind. It’s a very personal story, but it really illustrates the depth of friendship Lecretia has shown me.

When we were in our last year of high school, my boyfriend died suddenly. It was six weeks before our bursary exams, and my life was in pieces.

Lecretia understood that even though I was broken, it was crucial that I got through my bursary exams if I was to hold on to my future. I was a good student, and like Lecretia, planned to become a lawyer. Each morning Lecretia would come to my house and collect me for school, whether I wanted to go or not, often with our good friend Hilary as second in command. Lecretia bossed me about, which was exactly what I needed, and pushed me to focus on my exams and my future, supporting me with the maturity of an adult. I did get the bursary I needed to get into first year law, and a few months later, headed off to Canterbury University.

I will be forever grateful for the love and wisdom that Lecretia bestowed on me, not just through those first months, but over the next couple of years while I slowly came to terms with what had happened.

It was so very difficult to be out on my own, away from home and still grieving. Lecretia understood that I was struggling without me needing to explain myself. Lecretia became my rock; my ‘go-to girl’. Often I could draw strength from her just with a phone call, but when things were really tough, I would jump on a plane to Wellington and visit her. It was always a spur of the moment decision so I never gave Lecretia much notice that I was coming, but she never hesitated in welcoming me, in sharing her new life and friends, and giving me such comfort. She made me feel cherished.

After a few years, I transferred to Victoria University, joining Lecretia and other friends at law school there. I married a lovely man Lecretia was friends with, as things transpired, and I am grateful to have had the career I wanted.

Lecretia was an outstanding friend in helping me through what was the toughest experience of my life, that is, until Lecretia was diagnosed with a brain tumour.

Over the years that Lecretia has battled her illness, I have been inspired, heartbroken, proud, and devastated in equal measure, as have all her many and wonderful friends. I truly hope I have been able to return the unconditional love Lecretia so willingly gave me all those years ago, and in the many years since. I could not have asked for a better friend to journey through life with.

At the Commission

Law CommissionAside from a secondment to the Department of Prime Minister and Cabinet in 2010, Lecretia has worked at the Law Commission since 2007, project leading a number of reform projects, including the Review of the Regulatory Framework for the Sale and Supply of Liquor, the Review of the War Pensions Act 1954 (discussed in an earlier blog post), the Review of the Judicature Act 1908 and Consolidation of Courts Legislation, and most recently, the Review of Contempt of Court. As she was diagnosed with cancer in 2011, almost half the time she worked at the Law Commission she was also managing her illness.  Even cancer could not dissuade her passion for law reform.

Marion worked with Lecretia on several reform projects during her time at the Law Commission:

I remember first meeting Lecretia when she was introduced to me when she started at the Law Commission. I was struck and slightly awed by her poise and beauty, but soon felt at ease because of her unaffected, warm nature. Despite her obviously sharp mind, she was unendingly patient with me and had time for my questions and thoughts. I feel that I learned much of the ropes of legal thinking and law reform from her. And personally I felt accepted by her, despite my sometimes bumbling ways and our different backgrounds.

I learned many things from Lecretia during our years together on the veterans’ review. She would always treat the people we interacted with absolute respect and patience. Even when some people caused frustration, she demonstrated how to treat them with dignity. She reminded me of the compassion with which veterans deserved to be treated. Her law reform work was always so thorough and carefully thought through and sensible that she made it look easy. She showed me that it is always always worth doing the best possible job and that means taking care over every page, every paragraph, every word. She was generous with her time and help, and gave me confidence in my work. Some memories of that time that will stay with me always are our terrifying daredevil helicopter ride at Ohakea Air Force Base with us clutching each others hands with white knuckles (knowing Lecretia was doing it despite not really enjoying that type of thing gave me courage!), and us somehow missing our boarding call at Canberra airport, getting paged by name and having to run through the airport together to get to our flight on time.

There are the little things that Lecretia does that really made a difference to me. She bought me a chai latte when she picked up that I was having a bad day. She made me a delicious carrot cake for my birthday. And she’s always been interested in my cat!

Roland recalls arriving at the Law Commission in 2012 and meeting Lecretia for the first time.

The first time I met Lecretia was my first day at the Law Commission. I entered the building with the increased level of nervous energy and apprehension of the unknown that comes with the first day at a new job. The first person I encountered was a tall elegant woman with beautiful eyes. She spontaneously gave me a big smile and said the most genuine and authentic ‘welcome’. I instantly knew everything would be okay.

A few months later I would be moved seeing Lecretia lost in a moment of joy with the simple pleasure of singing with the ukulele group at work.

I would learn of the high respect and regard that people, some who were not easily impressed, had for Lecretia’s intellect and analytical abilities. I would also learn of the significant roles she had held and the important issues she had worked on.

But for me it was her ability to make the world a better place with a simple smile, a single word and her joy of life that makes her special.

Haute Cuisine

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If you were ever lucky enough to be invited to one of Lecretia’s dinner parties, you were in for a real treat. When Lecretia cooked, she went all out.  She’d spend days planning and sometimes days preparing, and would craft a full dining event with appetizers followed by three amazing courses that concluded with a fantastic dessert, which was always her favourite course.

Lecretia taught me to really appreciate food, and to love good cooking. I used to be pretty feral in my approach to food – I was happy with pizza for dinner before I met her, sometimes a few nights in a row. But she introduced me to great restaurants and great chefs and great dishes, and some of our favourite evenings together were sitting across a table from one another at a top restaurant, working our way through a degustation menu, discussing politics, or the law, or love.

Sadly, Lecretia’s paralysis has meant that cooking duties have fallen to me. I’m a lot better than I used to be, but I’m nowhere near as good as her!

Lecretia’s friend Eileen was also a fan of Lecretia’s cooking:

I flatted with Lecretia when we were in our twenties. She was definitely the flat mum. We never said that to her face, but we did call her Mum when she wasn’t there. She did the responsible things like having her name on the lease and making sure bills got paid.

But, the real reason she was the flat mum was that she cooked for us. We all had turns rostered onto dinner of course. But there is cooking and there is cooking. Lecretia cooked. She didn’t just cook for us. When people at work had birthdays, or various occasions, she took in cakes she had made them. And that was what was so special about Lecretia’s cooking. Lecretia’s cooking had love in it.

My father used to bring us macadamia nuts. They reached us still in their shells and tied up in a woman’s stocking. My dad thought that was a clever solution to needing to dry the nuts in an airing cupboard for months in a ventilated way. Lecretia was far too gracious to point out just how eccentric that was. But, she did crack all those nuts, and turned them into the most amazing chocolate and macadamia nut cookies.

Lecretia used to say she had two requirements in a man. Sadly she never met a man who met both of them. The first was spelling ‘you’re’. Apparently nothing spoils a romantic note like saying ‘your beautiful’. Matt was the first boyfriend she had who could reliably spell “you’re”. The other criteria was the most undemanding criteria I’ve ever heard of, and how Matt could have failed to live up to her expectations is beyond me. The criteria was that he would have to like her cooking. Matt’s under-enthusiasm for cakes and biscuits was a source of disappointment for Lecretia. Fortunately she didn’t stick to her guns on this demand and I’m sure there were always people in her life prepared to take on the burden of letting her bake for them.

I used to be a bit in awe of her, perhaps I still am. As I waited to emerge from the dignity-free zone of my twenties she always had such poise. She was always amazingly turned out, but would never bore people with the details of how she made herself look so good (a welcome relief from the self-obsessed prattle of many well-turned out 20-somethings). I always thought she was classy. I learnt that she never held others to the same high standards she expected of herself. In fact, despite a few setbacks over the half-moved-in-stopped-to-get-drunk flatmate and rat-owner-flatmate, she is one of the most tolerant people I know.

I remember her family coming to visit and having expected them to be posh. They camped down in the lounge and I can imagine her brother’s big smile and her mum and dad on their other side of the room and finding out how young her mum was. She used to talk for hours on the phone with her mum, in her pyjamas.

I love Lecretia and I am so grateful for her friendship over these years. She really is one of the warmest people I have ever known.

A Doppelgänger

PrescriptionsDespite the best efforts of modern medicine, cancer remains, for the most part, incurable. Even when we beat it back and it enters what’s called remission, its essence abides in the twists and turns of our chromosomes, waiting for the slightest defect in the intricate machinery of our cells to let it burst forth like a dark flower. Siddhartha Mukherjee in his excellent book The Emperor of All Maladies, describes it as follows:

Cancer is an expansionist disease; it invades through tissues, sets up colonies in hostile landscapes, seeking sanctuary in one organ and then immigrating to another. It lives desperately, inventively, fiercely, territorially, cannily and defensively – at times, as if teaching us how to survive. To confront cancer is to encounter a parallel species, one perhaps more adapted to survival than even we are.

This image – of cancer as our desperate, malevolent, contemporary doppelgӓnger – is so haunting because it is at least partly true. A cancer cell is an astonishing perversion of the normal cell. Cancer is a phenomenally successful invader and colonizer in part because it exploits the very features that make us successful as a species or as an organism.

Treating cancer, therefore, whether it’s surgery, radiotherapy, or chemotherapy, is one of medicine’s hard problems, and despite all of our advances, even modern therapy is still, as one writer describes it, like beating a dog with a stick to get rid of its fleas.

Lecretia has experienced what is called ‘the standard of care’ which is the best the peer-reviewed science can currently offer a patient with her illness. She has had surgery to debulk the tumour – the most obvious hunks of it stripped out with a surgeon’s scalpel. Radiation has been fired through her skull into her brain, searing good and bad tissue indiscriminately in order to deprive the bad cells of their ability to divide, and she has swallowed cell-killing cytotoxic chemicals which hunt out cancer cells, but also white blood cells and platelets, and interfere with their perpetuation.

But surgery can only really be done once, and there is a limit to how much radiation a human being can safely take in a lifetime, and the cancer cells adapt and mutate and build up defenses against cytotoxic agents, so all of that eventually comes to an end, and you have either beaten back the cancer, or you haven’t. Despite four years of solid cancer-killing efforts, Lecretia’s cancer abides.

We’re now into the realm of hope, speculation, and hypothesis. I’ve been poring through journal articles and onocology websites to see what the next steps might be. The website Astrocytoma Options has been particularly helpful. We visited our oncologist today and it’s clear that he doesn’t believe there’s anything that can be done – his prescriptions are to deal with symptoms, not to deal with the tumour. But Lecretia and I haven’t given up. Though at this point, if it weren’t for my science savvy, I’d be susceptible to any charming mystic who promised to cure my wife. And we’ve had plenty of those send us well-intended but ultimately fruitless emails.

The seriously promising options are few and far between. There is a device called Optune, which is similar to radiotherapy in its approach. It fits like a skullcap and applies tumour-treating fields to the brain. It’s FDA approved but is only available to residents of certain countries, of which New Zealand isn’t one. My advice to you, if you’re planning to get cancer, is to make sure you’re rich, American, and well-insured first.

We’ve had a few people point out the work of Duke University with their polio virus trial, which featured recently on 60 Minutes. I’ve contacted them, but they are concentrating on glioblastoma at present, a concentrated, localised tumour. My wife’s astrocytoma is diffuse and expansive, so it’s not easy to see how their approach would work. Nevertheless I’ve pleaded with them for help. My fingers are still crossed that they might consider her for a trial before she becomes too unwell to travel. But they are adamant they are focussed on GBM.

Finally, there’s the idea of using low-toxicity off-label anti-cancer drugs, in combination with the drugs available within the standard of care, to assault the tumour from multiple directions. It’s down this path that we’re headed. We’re hoping to get our oncologist’s support to resume Lecretia’s use of temozolomide, and to augment this regime with a variety of other drugs that hopefully support the uptake of anti-cancer agents and interfere with the mechanisms that allow the cancer cells to replicate. I’ve been reading a lot about various drugs that have these properties. Ben Williams, professor emeritus at University of California, San Diego, claims to have cured himself of glioblastoma with this approach, and outlines his thinking in his film Surviving Terminal Cancer.

But it’s fair to say, I really have no idea what we’re doing. I feel like we’ve been dropped into a foreign country, where all the signposts are written in pharmacological greco-latin and scan like the names of forgotten angels and demons, and where the guidebooks are useless but you still feel like there must be some local wisdom that you could avail yourself of if you could only become fluent in the language.

In his book, Mukherjee reflects on the words of poet, Jason Shinder, who said: “Cancer is a tremendous opportunity to have your face pressed right up against the glass of your mortality.” But Mukherjee says what patients see through the glass is not a world outside cancer, but a world taken over by it — cancer reflected endlessly around them like a hall of mirrors.

My hope is that one of those reflections depicts my wife restored, unafflicted by her doppelgӓnger. But it’s impossible to tell just now which reflection that might be.

Lecretia In London

Roller Disco

Jon, Alice, Lecretia & Matt heading to the roller disco.

A story from Lecretia’s English friend Alice, who met Lecretia while she was on her OE in London, and before Alice emigrated to New Zealand.

I first met Lecretia in London in 2001. I answered an advert for a flatmate to join a group of young professionals in Wapping, London. Although Lecretia was doing her OE, she was not living with ten other kiwis in a hovel in Shepherd’s Bush. Instead she had found a nice newer house with four rooms, with British flatmates, in E1, by St Katherine’s Dock and five minutes from Tower Bridge. I was lucky enough to join them.

Lecretia is tolerant, open-minded, fun-loving, and kind. She is a great gourmet and loves fine food and cooking. She makes the best granola I have ever tasted. I liked it so much that used to sneak bowls full and only realized I was found out when she kindly placed a little note on top of the container asking me to ensure the lid was properly on after taking some.

I loved going out dancing with Lecretia, she and I share a passion for dancing like no one is watching and between us we would dominate the dance floor.

Lecretia enjoys the finer things in life, not just a Pinot Noir, but a really good one, not just a meal out, but at a place that may have a Michelin star chef using the finest ingredients. She made the most of being close to Europe and went on several trips and came back looking like a Greek goddess having enjoyed the sun, sights and culture so much.

Lecretia was probably the first to hear my tale of my first date with my Internet boyfriend, Jon, and went on to meet him, and to be his friend too. Jon and I are now married and living in Wellington. When we came on holiday here in 2003, Lecretia had returned home and we stayed with her in Kelburn. What a flat that was. It was stunning. When we arrived here again in 2004, she picked us up from the airport and we stayed with her and her flatmates in Mt Victoria. Another fine choice of home and location, and what a view!

We enjoyed meeting Matt, finally a fitting man for our majestic friend, and attending their wonderful wedding and celebrations.

Does she remember the roller disco that we all dressed up for? I cant remember if that was before or after you got married.

I remember the happiness of meeting up for lunch in September 2008 to let her know I was pregnant, to hear that she was also pregnant after several rounds of IVF. It felt so special to hear of Lecretia and Matt’s joy at that time. Very sadly Lecretia’s pregnancy didn’t last, though despite her loss, she bravely came to my baby shower the following February and has always been loving to our children.

Lecretia is a true life friend.

Half a World Away

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.

Hemispatial Neglect

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.

Veterans and Interventions

Anzac DayI 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.