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Terminal but not dead yet – Vicki's Story #DefendNZ Documentary 4

Vicki’s eligibility under the End of Life Choice Bill:

In 2011, Vicki was diagnosed with Glioblastoma multiforme (GBM) – the same aggressive brain tumour that Wellington lawyer Lecretia Seales died from. It is colloquially known as “The Terminator”. At the time of her diagnosis Vicki was given a life expectancy of 12 to 14 months. Even though she has outlived this prognosis, she is still considered terminal.

The only reason a medical professional might not approve Vicki for euthanasia or assisted suicide under the End of Life Choice Bill would be if they believed that she was no longer able to understand the nature or effects of euthanasia and assisted suicide. Vicki could easily find a medical professional who would give her a life expectancy of six months or less, since prognosis involves subjectivity, and her condition can deteriorate suddenly. She is “in an advanced state of irreversible decline in capability”, and could, at any point, decide that the suffering she endures is unbearable.

Terminal but not dead yet – Vicki’s Story

Vicki, wife, mother and grandmother from Palmerston North, lives by the mantra of ‘you can lay down and die or you can get up and fight’. As she stares death in the face, choosing to fight is a daily choice she is determined to make.

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Vicki has already had several close encounters with death. She lost her brother and two of his friends after they were killed by a drunk driver when she was only thirteen. Then when she was 21 her father passed away from a heart attack, and following an eighteen-month battle with ovarian cancer, her mother also passed away. So Vicki understands only too well what it is like to lose loved ones, whether it is suddenly and unexpectedly or whether it means having to watch them die slowly over a long period of time.

“I say, there’s never a good way to lose someone you love, but the reality is that we all die,” Vicki says. 

Unfortunately, her heartache has not ended there. In early 2011 she was driving towards an intersection as the lights were turning orange and as she tried to brake, her foot would not move. She didn’t understand what was happening, but had the quick thought to use the other leg. She managed to brake with the left foot just in time to avoid being hit by an oncoming car. Vicki remembers just sitting in her car completely bewildered at what had just happened. “I had no idea it was going to be the start of something big in my life.”  

Over the next few days there were seizures and other signs that things were not quite right, and so began her journey of many hospital visits. Vicki had test after test and finally, after two days in hospital, the doctor ordered an MRI scan. Within minutes of returning to her room from the scan, the doctor appeared, held her hand and told her that she had a mass on her brain, and that he was very sorry. Vicki wasn’t left to ponder too long what that meant. As she was being wheeled into the new ward, things started to feel a little too familiar; this was the exact same ward her mother had been in before she died. Vicki recalls that moment tearfully.

I just thought to myself, well you’ve got cancer. You wouldn’t be in here if you didn’t… and I wondered what that was going to mean for Dave and my kids.
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A nurse and doctor explained that she had Glioblastoma Multiforme (GBM) – the same condition Lecretia Seales had. A nurse and doctor explained that she had Glioblastoma Multiforme (GBM). Other than being told that it was indeed cancer, she wasn’t given many specifics at the time, but she did ask the nurse to write down the name of her condition so that she could Google it later. It was a sobering experience when her online search brought up the words, ‘The Terminator’. Based on what she read Vicki soon realised just how serious her diagnosis was, and that she would be lucky to survive even as long as 18 months.

Amid swirling thoughts she tried to figure out what she could do to fill those 18 months. Suddenly, she was in a very surreal place where everything felt like she was watching a movie of someone’s life, except it was her own. 

Vicki’s husband, Dave, recalls that day which would change their lives forever, “As far as we were concerned, our world was falling apart. Crying, holding hands, embracing and crying again, and then trying to work out what was happening... it’s like having fifty thoughts all at once and trying to work out which is the good one… and the good thought is that she’s still alive… The other 49 are that she’s going to die.”  

It was Dave who broke the news to Vicki’s daughter, Asti, who was a student at the time. “I remember when Pa called me and said, ‘Bub, Mum’s actually got a brain tumour,’ and I just remember thinking, like, ‘No way. There’s no way. It’s got to be wrong!’” remembers Asti. 

When Vicki returned home, she was overwhelmed by the love and support she was shown. Friends showed up from all over. Some of them have stuck beside her and Dave and throughout the whole journey so far. She organised her funeral so her family wouldn’t have to deal with it. Next she used every last shred of willpower to achieve her dream of finishing her degree in applied management, between surgery, radiotherapy and chemotherapy. According to Vicki, “It was hard and tiring but I was very determined to do that. I’d worked hard enough to get it!” 

Vicki hit a low point after she had completed her degree and was going through treatment. She was utterly exhausted, struggling with everyday things like getting out of bed and going to the toilet. In retrospect she realised that she had depression. No one had really talked to her about depression and how she might feel, just that she was going to die soon. She didn’t really know how to cope. Dave took three months off work to care for Vicki. “By the time she came back from hospital she was semi-bedridden… I was her carer, doing everything that was needed to get her through the day. So I helped her out of bed, and I carried her out to our courtyard and to the bathroom.”  

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Vicki had reached a dark and desperate place and, one day as she sat and contemplated what her life had become, she decided that if this was how it was going to be, then she didn’t want to live anymore. She counted out some pills, the number she felt would be sufficient to be fatal - and prepared to end her life. In that split second the thought popped into her mind to have a cup of tea. She reflects, “In those moments of having that cup of tea, I thought, ‘Mmm… no, don’t. Not today’.”  

She felt better the next day and even enjoyed reading a book that afternoon. “I remember thinking to myself, what if I’d done it!? I would’ve missed out on this day!” She realised that she could find something good in each day that she faced. Vicki is so grateful for all the beauty that she has been able to be part of since that day on which she almost gave it all up. She has since had three more grandchildren, been to her son’s 21st, celebrated 20 years of being married to her ‘soulmate’, and seen one of her children go through a tough time and come out successfully the other end.  

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After those three very difficult months, Vicki’s condition improved to the point of not needing Dave’s constant care and he was able to return to work part-time – until Vicki was sure that she could manage without him. Although life was still hard, she had managed to turn a small but significant corner. She realised, too, everything she would have lost. There were so many things that were good in her life which could have been prematurely stolen if she had followed through on her feelings to end it all. 

Vicki now has a mindset that even on a dark day it is still a good day to be alive. She is no stranger to pain and suffering, which makes her the perfect candidate to choose euthanasia if she so desires.

I know exactly what it is like to be so mentally and physically exhausted that it takes effort to even pick up your head. I know exactly what that feels like. I’m not cured; I’m still terminally ill.

While Vicki still undeniably has bad days, she shudders at the thought of what could happen if she went to the doctors on such a day. “If I was to visit the doctor on one of those bad days and he was to offer me euthanasia as an option… that would be awful. It would be like handing nooses to people at a suicide clinic. It doesn’t make sense to me that we would even contemplate offering this as a medical choice… and quite frankly, I’d be scared stiff to go to any doctor who believed in this.”  

It does beg the question, what confidence are we giving those who are already vulnerable? Will we isolate the vulnerable even more by making them feel unsafe around the medical professionals who care for them? Doesn’t this contradict what good support should look like? Surely, moving forward, we want to create an environment for vulnerable people to feel they can trust their doctor without having to be wary of them because of a feeling that they can’t be completely trusted. 

Vicki is incredibly grateful to her family and says, “If my family didn’t support me to live, and if they would accept it if I made the decision I wanted to die… how much pressure would that put on me to follow through?”  

It is only because she has such good support around her that she knows she doesn’t have to feel that pressure. But she knows this is not the case for everyone and there are many who struggle alone. “No one should have to suffer… no one should be alone. It’s about how we treat people so they can live with dignity. It’s not about dying with dignity, it’s about living with dignity”. This is a point Vicki makes very strongly - that the way forward is not simply thinking we can relieve someone of their suffering by ending their life. To truly help someone is to ease their suffering by having the correct support in place. She says, “In New Zealand we have incredible palliative care… but I don’t believe that everyone receives it.” 

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Vicki says, “If you’d said to me before I was ill that I’d end up in a wheelchair all the time, or not be able to walk unaided, I probably wouldn’t have valued that as being a very good quality of life. Yet now, here I am, thinking that I’ve got a wonderful life, and wonderful family and friends.” She is adamant that as long as someone receives the right support, with their cultural needs met, and is cared for by people who are acting in their best interests, they can experience a good quality of life and then go on to die with dignity. She speaks of her mother’s death as being hard, but also of being a beautiful time that she would not change for the world. Vicki considers her last moments with her mother as a very special time.  

For Vicki it is a no-brainer that the End of Life Bill is very much a public issue and not merely a private one. She says, “We might think individually we have the right to make these choices. We’re not actually realising the impact these individual choices might have on others more vulnerable than say, ourselves. How do we really know what’s going on with coercion? There’s a lot of sad and lonely people who I talk to.” 

Vicki once had a conversation with a lady who confided that she was made to feel a bother, saying she felt like an inconvenient responsibility to her children who were just waiting for her to die. It is confronting, but far more common than we would imagine.  

Against all odds, Vicki has survived her condition for almost eight years now which is a lot longer than the prognosis of 12 to 14 months she was given. She says when a doctor tells you your life expectancy, you could die sooner, or you could live longer… it is merely based on generalised statistics, meaning that no doctor can guarantee how long you truly have left to live. Obviously this can be a dangerous place on which to base any life-or-death decisions. Vicki worries that someone who is given a short life expectancy and who chooses euthanasia, could miss out on a whole lot more that life has to offer. “If I’d bought into that whole dying thing right from the beginning, which I think to some degree you do, I probably would have missed a lot of experiences that I’ve really enjoyed and had a lot of fun along the way.” 

Vicki also challenges what we want to be saying to our children. We should be letting them know that everybody has the right to live a complete and full life. Raising the next generation in a way that they can grow up embracing people with disabilities, or those who are different from themselves, and not excluding them from community. “We can’t promote suicide awareness and think euthanasia is okay. Neither are okay!”  

Vicki is concerned about the impact this Bill would have on shaping our society. “I believe David Seymour’s Bill removes choices for people like myself who are vulnerable and rely on other people. Things creep in slowly… over time what seemed abnormal to us will become normality. You know, I already feel vulnerable. I know many people feel vulnerable. Is it the cost of our medication or treatments that might make us be considered as a burden? Is it the cost on society?”  

In 2016, the insurance company of Californian mother-of-four, Stephanie Packer, refused to pay for her chemotherapy treatment but offered instead to pay for her assisted suicide. Who can guarantee that we won’t be hearing stories similar to Stephanie Packer’s coming out of Aotearoa? Things that we think are unimaginable suddenly start to become very real options once a door like this is opened.  

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Vicki enjoys spending time with the people she loves, playing with her grandkids (who love to have rides on her wheelchair), baking, knitting and talking to people all around the world about GBM. She is also a member of the Palmerston North Disability Reference Group which works to make Palmerston North a more accessible and user-friendly place for disabled people. If Vicki’s life is not full enough, she is also planning to return to work in some capacity this year. In the words of her daughter, Asti, “Like mum says, ‘You can lay down and die or you can get up and fight’, and she is definitely fighting. She fights every day, which has given me a lot of hope and strength too.”

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