LIVING AND DYING WITH STAGE 4 TERMINAL CANCER

LIVING AND DYING WITH STAGE 4 TERMINAL CANCER

Everything seemed perfectly fine as 2019 loomed; family celebrations had been fine-tuned and things were unfolding to plan. Then it all came crashing down around our family, our iwi, leaving shattered pieces not once, but sadly, multiple times, on a cancer-ridden roller-coaster ride that derailed our lives just four short days before last Christmas.

As a number of my family and friends already know, and for those who don’t, on Dec 21st I was diagnosed with an aggressive Stage 4 Cancer - right lung adenocarcinoma.

Understandably, that news came as an acute shock. One minute I was being sent by my physiotherapist for ‘chance check-up’ x-rays, and a few short hours later I was in my GPs office being asked whether I smoked (no), how healthy was my lifestyle (very), did I have anyone at home who could help me ‘process’ this (yes), and that it was time to start scheduling urgent scans and oncology consultations... four short days before Christmas.

My cousin Miri had attended that consultation with me, and we both stumbled out in particularly fragile states of mind, reeling over the news that the big ‘C’ had interjected itself into my relatively happy life, and into her beautiful Auckland home, where I lived, as I sought ongoing casual contract work at the University of Auckland.

AN AGGRESSIVE ONSET

The radiologist had mentioned the x-rays, the adenocarcinoma, I was impressed at the professional concern in his calm voice… when a total stranger, with the title ‘Dr’, calls to discuss x-ray findings, asks who your ‘Dr’ is, puts you on hold, then a few minutes later lets you know your Dr can see you within the hour, it’s pretty serious… I remember slipping into shock during that urgent GP’s consult.

I had led a pretty healthy existence, certainly more so in recent years. I hiked and tramped regularly. Walked everywhere, because I love walking as much as I detest driving in Auckland. Anywhere else I’m fine, but these day’s one has to be so aggressive to drive in Auckland. My diet could have been healthier but as a general rule of thumb I stayed away from fast-food. Being a former chef meant I appreciated home cooking, as relaxation and healthy fare. I had a reasonable rapport with alcohol that had admittedly decreased in the past 4 years since relocating to Auckland. Okay so I had smoked many years ago, but I hadn’t smoked in almost a decade. Drugs were a definite ‘no no’… you don’t get multiple university degrees, including a doctorate, without being pretty healthy.

I had done okay for a literal dirt-poor Māori boy raised initially in a rural Rotoiti lakeside papakāinga with an old polished dirt floor, before being relocated to Rotorua Waipa Village then Fordblock, under the NZ Governments ‘pepper-potting’ scheme for forced cultural assimilation. For those who know Rotorua, this was and remains the ‘slums’ of that magnificent city which I shall always devoutly call my wondrous magical geothermal wonderland home. Māori from the ‘Block’ were not destined to become high achievers when, if, we escaped the poverty stricken destitution… but we did… I was not alone in doing so.

I had trekked the hard yards to getting my PhD several years ago, ironically (now) in Death Studies - specifically examining Indigenous Funerary Artefacts of the Māori. So, here I was, on the cusp of 52, medically considered still young, but facing an aggressive lung cancer which, regrettably, would, like a farcical Joker from Marvel, accelerate its roller-coaster hunting and tracking spree at a frightening rate that saw me initially hospitalised within the week. Life as I knew it was transforming as I started the fight for my life... forever transforming life as I knew It…

THE BIG C

So, I found myself pondering the big C … How, when, and why did this happen? These questions were flooding my brain. This couldn't possibly be happening to me. The fear and confusion are hard to explain. But, being a mostly positive person, I soon realized that I had to take optimistic action. Feeling sorry for myself was wasting time and wasn’t going to get me anywhere.

Telling my family was the hardest part. They were initially confused and eventually, understandably devastated. It wasn't easy convincing them that this wasn't the worst news one could receive. People can and do survive cancer. Some even survive under impossible circumstances. Miracles do and have happened. I have friends, and friends of friends, and newly made friends, who are living testament to this. I am blessed.

The upshot of the situation was that I immediately realized the stark reality that I could not continue with any immediate plans for Christmas and New Year. In fact, all summer plans were immediately null and void.

I had cancer. Like being in the dark and hit over the head with a mallet, I had to shake-out the all-over shock in my body, breathe deep, slowly… blink damned fast, and reconfigure my entire life in accordance to what the big C meant, in my life. My life. Very quickly things were put into perspective. It wasn’t hard to know what I had to focus on. If I wanted to heal myself, I needed to put some things into action and I needed to do so damned quickly.

As proud as I have always been, I had no option but to register for immediate government benefits, and forge ahead with focusing on my health and wellbeing. My GP was a godsend in this aspect, albeit took a month to ‘activate’. But financially I could receive blessed aid and not worry about working because I had far more important things to put my energy into. My body needed help, I needed help. So, I was admitted to North Shore Hospital.

“HAT TRICK AND CERVICAL ADVANCEMENT”

From the outset I had 3 advanced medical concerns, with a diagnosis of days/weeks depending which concern we looked at. Primarily they were worried about the 9.5 cm blood clot, wrapped miraculously inside a tumour. This in turn was wrapped around a rapidly (90% no less) closing aortic valve. I was immediately injected with blood thinners and informed I’d have to learn how to self-administer these everyday if we were to try and beat the self-advancing blood clot. I asked what would happen if the clot ‘did it’s worse’… they said I’d quietly close my eyes and that would be ‘it’. I initially thought “not a bad way to go really” but of course I had so very many things I needed to get on top of, so many things. I needed time. Day’s and weeks were not enough. Not enough.

There was the major concern of course for the main lung tumour(s) and it’s three correlated impacted ribs. Laymen’s interpretation; I had an ‘octopus shaped tumour sitting on my lung, and where it touched my ribs, the bones were being eaten away, dissolving. That was a bit of a worry and was the cause of a lot of pain. Morphine painkillers were efficiently enlisted as we carried on discussing the other main concerns... yes you read correct, while these were of concern, they were not the leading concern.

Where the octopus, nicknamed Kient, was causing havoc to my dissolving rib cage, the multiple threaded whipping tentacles, nicknamed Tenty, were reaching up and over my shoulder, wrapping around nerve-endings and muscle, very efficiently destroying my right arm! This was ‘their’ initial concern, because my arm was already exhibiting serious symptoms. The drug regime jumped, from a handful to 26 tablets a day, as we tried to ‘head Tenty off at the pass’ so to speak. That was a physically painful transition period and I had AJ and whānau sleep over at nights when it all got particularly painful, in order that they could calm me when I screamed out of pain. The medical professional’s opinion; I was scheduled for urgent radiotherapy within the fortnight, intended to attack and nullify Kient and Tenty into some hopeful form of submission. In the interim, Kient and Tenty were being like Prince and partying like it was 1999.

We all took a deep breath, I was released from hospital a few days later and we settled in to a home routine of sorts as we patiently awaited scheduling. Then, a few days later, AJ, Christo, Miri and I had decided we would be proactive about this emotional roller-coaster of a cancerous nightmare as we piled in to the car and sought out support services from the NZ Cancer Society, who had to date been amazing.

That was a fateful car trip. My phone rang as we were looking for parking at Auckland Hospital, and after a short conversation, a new doctor eventually had us convinced that we had to head back to North Shore Hospital where they immediately put my neck into this huge cumbersome brace, readmitted me, relocated me in a ward, and asked me/us to wait. This was late on a Friday afternoon. We were then introduced to an Orthopaedic Surgeon who informed me/us that the lung cancer had shifted. It had jumped from its points of origin, to my vertebrae, causing serious lesions on my C4-C7 cervical system and they were concerned now that my neck would collapse. I was in shock, my family were in shock, as the surgeons said they had one of two options. Either prep me for major emergency ‘scaffolding’ surgery first thing the next morning, or urgent radiation therapy immediately, a decision and process which was out of their hands. That was on a Friday night, I was at another hospital altogether, requiring a mini-miracle within Oncology in order to slow the cancer down till Orthopaedics could figure out a ‘fix’. Our collective shock was tangible in that hospital ward, as Auckland Hospital Oncology were ‘phoned’.

RADIATION AND CHEMOTHERAPY

Dr Christine Elder’s calm, commanding, and no-nonsense voice came over the phone as the orthopaedic surgeon and medical teams were talking to me/us in the ward… I was well entrenched in shock when I heard her say “Get Vince ready for Ambulance Transfer, my staff are on their way back in to Auckland Oncology, we’ll prep and receive him there within the next two hours… and without further ado she simply told me to hold on, they were going to start the urgent radiotherapy as soon as they could get me back to Auckland Hospital.

I was sitting in that ambulance being rushed between hospitals, crying out of gratitude that I hadn’t had to make the final decision. I would be strapped to the radiation machine by 9pm, undergo urgent treatment, and by 11 pm be transferred again by ambulance back to North Shore Hospital where I was now well and truly in ‘residence’. This was to be ‘life as I knew it’, every night, for the next week. Radiation treatments, hospital transfers, visitors trying to make me smile and laugh, whānau keeping everything together….

They eventually let me be discharged so we could commute independently, and that was how we undertook the 10 days intense radiotherapy targeted at my cervical vertebrae, as well as at the original lung ‘octopus’ tumour.

It would take a few weeks before we could get any ‘sense’ of how everything was going. In the interim, I wore that cumbersome neck brace 23/7 as we waited for orthopaedics to do their pre-scan/post-scan comparisons.

During this time, there were several medical complications. Meds had to be changed and adjusted a few times, my studio housed a mini-dispensary here briefly as I taught myself to understand the various pharmaceuticals they had me on, their purpose, efficacy and potential side-effects. At one point I was diagnosed with a ‘cold’, that worsened rapidly, only to end up readmitted to hospital after it was realised to be Pneumonia. I lost the use of my voice for a week (yes, there were some people who were quietly glad of this lol), and my weight loss was impressive.

I have always had weight issues. Physical vanity is a humble man’s Achilles. Throughout my 15-year academic career I had wanted to desperately return to the ideal weight of my 20’s, that being 80kgs at 180cm. For this to happen I needed to drop an elusive 9 kg. Finally, I was to have my wish granted, and worse. Acute nausea set in, I stopped eating for several days, and by the time Christo threatened to have me readmitted to hospital, I had shed 12 kgs. I would lose another 3 kgs before we got a handle on it. I was prescribed 4 different anti-nausea tablets as we sought to find those which worked best so I could eat. It is a truly horrible state when your body is craving food, any food, and once you put something in your mouth the body immediately rejects it. So it was that the Waitemata DHB referred a wonderful Nutritionist/Dietitian who immediately introduced me to the supplement drink Ensure (gratefully subsidised by the government because it was not inexpensive).

THE LIVED REALITY

It has now been 14 weeks and three days since diagnosis. Regrettably I have been precluded from the American Clinical Trial of ‘Potential Immuno Blast B’. With all of the numerous challenges to date, I am doing okay, and we, the medical teams, myself, and my amazing support team, have other pathways to pursue and prepare for.

The ‘Dying Reality’ is of course a natural course or pathway when embracing the challenge of cancer. I have started pre-planning a palliative process involving Hospice NZ and whānau who will all be instrumental, when that day arrives. However, that is not yet, not today.

My amazing Oncologist Dr Laird Cameron has recommended:

1. Private Treatment of a drug called KEYTRUDA which is registered for the treatment of a sub type of lung cancer called non-small cell lung cancer, but is not currently funded. This is the primary cancer I am fighting. KEYTRUDA is also registered in the treatment of neck cancer called head and neck squamous cell carcinoma but is not currently funded.

2. Chemotherapy. We will be initiating this pathway regardless of whether we are able to crowdfund for the private treatment of KEYTRUDA. The Chemotherapy is scheduled to begin within the same week of this crowdfunding campaign being launched.

THE DYING REALITY and EMBRACING SOCIAL SUPPORT

Perhaps one of the biggest lessons I have learnt in the past fourteen weeks is the need to reach out for and embrace support; from friends, family, extended family and even strangers who have driven me to radiation treatments and so forth. These are what I think of as ‘the gifts of cancer’. This must now include the gift of swallowing my pride, humbling myself, and reaching out for help in the form of this crowd-funding campaign.

At 52 years of age I’m still considered young. I have a large whānau, hapū, iwi… family and extended family, with whom, since finishing my PhD, I have been striving to collectivise and work amongst. My intentions were to improve our family awareness of genealogy and health. There is still so much to do in their presence, and for their peace of mind, together. I am not ready yet to embrace that dying reality that looms ominously for all of us, no matter our age, status or health.

I am grateful to belong to professional academic university networks with whom I have been blessed to work on some fantastic research projects. Alongside Emeritus Professor Ngahuia Te Awekotuku and Professor Linda Waimarie Nikora, I was engaged with ‘Aitua; the Māori way of Death’, as well as ‘The Tangi Research Programme’. I proudly collaborated for 18 months alongside Dr Kepa Morgan and Dr Robyn Manuel on a project titled ‘Ka Whanake Ngā Papakāinga Hei Mauri Ora: Realising the potential of Papakāinga for better homes and communities.’. I similarly collaborated with Dr Marama Muru-Lanning, Dr Mere Kepa and Dr Ruth Teh on various mahi wānanga preliminarily titled ‘Koeke me Kai Rangahau’ involving far North Tutukaka iwi. Most recently I have concluded three years research alongside Professor Dory Reeves and Lena Henry in research titled ‘Te Whaihanga Project’, mahi rangahau aimed at improving Māori content and professionalism for all graduate and emerging professionals in Architecture and Urban Planning, Engineering, and Landscape Architecture.

As of the date of this campaign, I have been invited to continue with more research work… good health prevailing.

I also lecture. In Anthropology, Death Studies, Religious Studies, and International Studies: Indigenous Contemporary Māori Issues. My most recent international cohort were from Hobart and William Smith Colleges, Geneva, New York. They were an amazing and vibrant group of university students accompanied by their wonderful Professor Nick Ruth and his whānau. The twelve weeks of lectures, hiking field trip, and Noho Marae (Marae Stay) interwove unforgettable memories of youthful eager students exploring the cross-cultural and intercultural realities of the modern world. Their abilities to learn and willingly share waiata (Māori song) as we travelled, were impressive and they each individually remain in my thoughts such that I smile broadly when they come to mind. Ngā mihi aroha HWS!

I was a grateful recipient of an award from the (ASAO) Association of Social Anthropologists of Oceania and continue to call the members friends. That was in 2016, and in 2019 several members visited me here in Auckland. I am similarly a former member of the Association of Social Anthropologists of Australia and New Zealand; having been a graduate from both the University of Canterbury and the University of Waikato, prior to relocating for casual contract work at the University of Auckland.

I have been, and continue to be, blessed.

CROWD-FUNDING KEYTRUDA:

Christo, my cousin and primary care-giver, and I, have been informed by Dr Laird Cameron that they can activate the private treatment of KEYTRUDA at an upwards cost of $90,000. That will facilitate all initial treatments at $7000 each plus administration fees. I am blessed that Dr Laird Cameron has private practice resources here in Auckland NZ. He, his colleagues, and medical team, are confident of KEYTRUDA as a treatment plan to address this cancer. Furthermore, whilst the NZ Government will not subsidise the initial treatment, they will subsidise all subsequent treatments after the initial treatment period. Being a NZ citizen, resident in Auckland, means I have no need to seek accommodation, and I already have a core primary support team. I am truly blessed to be living here now, and to have expensive private treatment available.

I have always found asking anyone for financial help extremely difficult. Perhaps it is because I am a proud person who hoped to succeed without having his hand out to people. It would be true to say that I have had several small successes in life, particularly academically, but they have been collective successes, not individual. I have been blessed to have been helped along the way.

As I said, I did okay for a literal dirt-poor Māori boy raised initially in a rural Rotoiti lakeside papakāinga with an old polished dirt floor, before being relocated to Rotorua Waipa Village then Fordblock, under the NZ Governments ‘pepper-potting’ scheme for forced cultural assimilation. This was and remains the ‘slums’ of that magnificent city which I shall always devoutly call my wondrous magical geothermal wonderland home. Māori from the ‘Block’ were not destined to become high achievers when, if, we escaped… but we did, and I was not alone in doing so.

Consequently, regarding this campaign to seek treatment for this aggressive cancer, surely now is no time to be proud. While I am super embarrassed to have to ask for help, I truly have no option. We all know its little steps that lead to the end goal. So, any amount that you can spare will help and, believe me, will be very, very much appreciated. Perhaps more so than any of you can begin to imagine. I may have you to thank for giving me the chance to hopefully live for another 20 years and to do everything I can to help others facing this frightening journey. That's the serious part of my plan!

So, from the bottom of my heart I thank you for taking the time to read this. If you can donate to my campaign, then I thank you a thousandfold.

Pūmau tōku aroha - my love is constant.

Ngā mihi aroha - thank you.

Vincee.