11 The Medical Model
In which a friend gets a bad diagnosis, lives until she doesn’t, and does it all on her own terms in pretty good health - considering.
“There’s a crack, a crack in everything, that’s how the light gets in’ L. Cohen.
“Life has no opposite. The opposite of death is birth. Life is eternal.’ ’E. Tolle
INITIAL DIAGNOSIS
The first inkling N. got that something was not right in her head was when she had a seizure. She was sent straight in for an MRI and a tumour was discovered – small enough and in a position where it was considered safe to operate. Within a week she was in Perth at Charlie Gardner’s having surgery. A week after that she was summoned to the neurosurgeon’s office.
N. remembers the doctor sat on one side of a desk of vast proportions and addressed her and her mother. He gave her the news. N. had, he stated, a glioblastoma, a particularly aggressive type of tumour which meant she had a 25% chance of living for 2 years and a 10% chance of making 5 years. After he finished talking he pushed a box of tissues across the desk, leant back and said: ‘you can cry now’.
N. was stunned by the diagnosis – but even as she struggled to take in what was said she was aware of the gracelessness of the delivery. She remembered thinking: Fuck you, I’m not crying in front of you – and – well I might as well be in that 10%.
News delivered, the doctor left.
N. sent her mother out to ring her sister. She remained with the nurse – who, recognising that N. was in shock - sat with her until she regained some semblance of calm. It was the start of a varied and sometimes fractious relationship with the medical profession.
N. credits a life-time of non-mainstream thinking to an attitude that had a bit of ‘I’ll show you’ in it…the fighting spirit was never directed at the disease. In N.’s words: ‘It was more ‘stuff the system, this is wrong, the whole approach…..I don’t think I ever said things like: ” I’ve got cancer”. I said things like, I had a diagnosis. I never attached myself to it.’ From the start she didn’t feel like she wanted to fight the disease, it was more about being informed, making her own choices, maintaining her health as much as possible.
After a diagnosis like that the conventional path is to fast track into chemotherapy and radiotherapy. N. again: Its all bang bang bang bang… so fast. Once you are in the system it happens really quickly, but it was too quick for me. Because I had worked in hospitals as a social worker, I knew how to slow things down. I did things like requesting an appointment with the radiotherapist - knowing that would give me at least 2 or 3 weeks in the system because they would have to put the referral through. Once you have a diagnosis it is standard practice, cookie cutter stuff: operate, radiotherapy, chemotherapy. I started asking questions about the treatments.
When N. eventually opted for no treatment, they told her she had months to live: apparently the 25% and 10% survival rates were only if you took the standard treatments.
A., her then partner, led the charge in pushing back against the statistics: where are your stats for the odds of patients who have tried different treatments? Do you evaluate wellness and other factors during the treatments you recommend? There were also logical questions: What are the chances to get well or stay well if chemotherapy is destroying your immune system? When pushed, the radiotherapist they talked to was not able to be clear either about the damage or the healing that the treatment would deliver.
COMMUNICATION
Down the track, living with this glioblastoma, N. could laugh about this. The inability of neurosurgeons, radiographers, and oncologists to communicate with patients became a factor that was a constant in the telling of her story….. The lack of honest feedback about the efficacy of conventional treatments was a major revelation for her.
N. started to define what wellness meant for her. She was backed up by various practitioners. N. learned a lot from her local Chinese medicine man – like her, a believer in holistic treatments: lifestyle factors, attitude, diet, exercise, trying to get to a causal level with disease, rather than merely treat the symptoms. N. learned not to talk to him about any allopathic treatments she chose to pursue. He believes that if the body cannot balance itself with acupuncture, diet, exercise spiritual practices, then the path to take is to simply keep oneself as positive and well as possible without what he called ‘harsh’ interventions. N. chose to work within the medical system for some treatments.
She also visited a Kinesiologist, and had a trusted naturopath who helped with herbs and diet suggestions when her immune system, organs and endocrine systems were out of whack from treatments…….
The few she encountered who had the ability to treat her as a whole person with respect and understanding stood head and shoulders above the rest. Dealing with specialists who became angry if she asked questions became a part of the new phase of her life she had to negotiate.
AFTER THE DIAGNOSIS
At this point I had only met N. a few times and the first I heard via a mutual friend was that she had been diagnosed with an aggressive brain tumour and had taken herself off to India with her then boyfriend.
I was struck by her courage, the beauty of this step. This, I thought, is what I would like to have the courage to do in her situation. Go to a wonderful place and make my peace with the world in whatever time I had left.
Wrong. I learned later N went to India, because she loved the country and her partner, A. had family and connections there and a strong belief that treatment with marijuana gave her the best chance for both survival and wellbeing. Cannabis use is illegal in India, but they hooked up with an Indian-born white man whose dream was to set up a clinic using cannabis as the main treatment.
THE COST OF CANNABIS
In tune with the research A. did, they set up independently in India, sourcing the strongest buds they could find and learning how best to introduce it into her system. A. learnt how to cook the marijuana into oil. It is a lengthy process that can be done with simple kitchen equipment. In WA the cost is prohibitive. Good quality pot costs $300-$400 an ounce and an ounce converts to 2.4 grams of the good oil. They calculated that N. needed to be on at least 1 gram per day so her system could be flooded with cannabinoids…a cost of at least $700-$800 per week. Plus keeping up a steady supply to take advantage of the season – autumn is the time for harvest in the bush pot markets in WA. She had
Back in Australia, the next fight was to be allowed access to the scanning equipment and expertise on offer in the oncology program. N. was initially refused access because she had rejected treatment - but she persisted, insisting that as oncology is on-going care for cancer patients it should be available to all clients. She prevailed and was able to receive scans.
These tests showed that the tumour had not followed expected pathways. A private radiologist she saw was impressed that the tumour had not spread and multiplied as expected – a brilliant result for this type of disease. Always, N. knew she was on the path that was right for her.
SURGERIES
N. had a second surgery to remove a tumour that grew on the same site of the tumour they cut out in the first op. This was the surgery that in N.’s words ‘blew everybody away’. The experts expected the tumour to have spread to other parts of the brain – the fact that it had only regrown in a similar area was an extremely unusual result.
Before the second surgery one of the medicos -aware of the fact that she had maintained a high degree of well-being since the diagnosis asked her why she had stopped taking cannabis, allowing a glitch in the self-treatment that had led directly to the re-growth of the tumour.
N. explained that she had hit an emotional wall around the breakup with her partner’ It was around Xmas, New Year, A. left, taking with him the knowledge of how to make the oil. I struggled emotionally and with the practicalities of sourcing the hi-grade marijuana I needed. I started eating sugar, my diet went to shit and…well it took me three months to get back on track. I dropped the ball. OMG how do I manage all this, what do I do?”
By the third surgery, early in 2018, N. was being treated very differently by some of the medicos involved in her treatments….except for the neurosurgeon who used to duck out of the building when he saw her coming, others were on board and supportive of the path she had taken. The aenethsitist came to see her the night before the third surgery and said that she was in the best position she could be: the fact that her system was flooded with cannabinoids convinced him that she would fly through the surgery and the aftermath.
This proved to be the case, N. had the surgery on a Friday, was out of high intensity care on Saturday and discharged on the Monday…as it is common within that timeframe for patients with similar diagnosis and surgeries to still be in the high intensity unit, unable to walk, N. did it easy…..when I say easy. …I mean it relative to other patients – major surgery is disorienting and requires a lot of post-operative care.
Before diagnosis N. had found her niche as a social worker and councillor working with adolescents – had been accepted to do a Masters and won a grant to work with troubled young people. She joked that it was lucky she had had the smarts to begin with in the face of diminishing capacity for practical action brought on by brain surgeries and a body system flooded with THC.
DISADVANTAGES
There were disadvantages to the fact that she was not taking up the standard treatment program on offer– she was interested in being a guinea pig in the latest immunology and bi-carb treatments offered at Charles Gardner hospital; but was refused a place on the program; even refused a conversation about the programs, because she didn’t follow the prescribed cancer treatments.
RADIOTHERAPY
I started writing this story with N. after her latest brush with conventional medicine via radiotherapy – the bones of this story come from a conversation I taped at N.s kitchen table that ranged over many topics over a few hours.
N. spent much time to-ing and fro-ing in her mind before she decided to embark on a treatment plan in Perth at Charlie Gardner’s’ hospital. 15 minutes a day for 8 weeks. It doesn’t sound like much, but radiotherapy is an intense, targeted treatment. The head has to be clamped in and strapped down so it remains completely still, the chamber is claustrophobic and the discomfort mounts daily.
N. began with good intentions. It was her choice …but she quickly came to grief. It just felt wrong. Three weeks in, she pulled out feeling she was compromising her health beyond any help the treatment could bring. She had lost most of the hair around the radiotherapy site when she called a halt to the treatment.
This was the point at which the radiologist, a sympathetic man, gave N. the real lowdown on the treatment. Her instincts were right – the chances of the therapy doing her any good were very low. Statistically, there was a 10% chance of getting a reduction in the size of the tumour – meaning that 90% of patients returned within the year after this treatment with their tumours intact or growing. Her instincts were sound – she was wasting her time - and worse - by subjecting herself to radiotherapy. The ‘and worse’ meaning that she felt she was giving time to something that was taking her further away from wellness.
The fact that she was offered, even urged to take this treatment at all N. read as a testament to the desire of the medical profession to be seen to be offering something, rather than nothing, regardless of the treatment’s lack of efficacy and potential to do damage. It also says something about the pressure medicos are under to pull a rabbit out of a hat for people on the receiving end of a bad diagnosis.
She also learnt the real side effects of radiotherapy do not appear until after the treatment schedule. Back in Geraldton, she was admitted to hospital with uncontrollable vomiting.
Curled in a foetal position in emergency at the Geraldton Regional Hospital N. fought tooth and nail to stop them sending her down to Perth to Charlie Gardner’s. She explained that she had come in for only two reasons, to see if they could stop her vomiting and to make sure that in the case of debilitating fluid loss she could be near life-saving drips and other necessary medical interventions. She won that fight and remained in hospital until she felt well enough to go home and be with her dogs, her garden and her chooks.
Her battles were not yet over. The next day, recovering in a hospital bed she lost her temper with a nurse who berated her for something. The nurse backed down and showed a friendlier face the next day. N. feels some satisfaction that as she defined well-being for herself, she dragged some of the people in the medical profession along for the ride.
MEDICAL EGO versus SELF DISCOVERY
A good part of N.’s journey has been spent struggling against the medical ego in both alternative and conventional practices. We bonded over the word ‘healer’ as being an egocentric turn off. Wellness is a complex notion and has a vital spiritual dimension. This is not an airy-fairy zone; wellness is about what feels right to a person at any given time, and above all it is about the capacity of one’s body/mind and spirit to heal if given the chance.
I wish I had talked more with N. about the deadly power of the diagnosis. She was given a death sentence straight up based on – presumably, the statistics of the allopathic medical model. What use is this? The language of ‘aggressive tumours’, stage whatever cancer is contemporary bone-pointing….…there is a point where – as one survivor of pancreatic cancer asserts on an internet video – ‘science stops and life starts’. Statistics can be misleading – especially if they are only drawn from one medical model - we are all made up of billions of cells, every human being is unique. Surely the questions the medicos should be asking are: What is the best way to support people to find the emotional and spiritual resilience to live as best they can under the conditions they face?
In Melbourne in the 1980s Ian Gawler published an influential book called You Can Conquer Cancer and with the establishment of the Gawler Foundation it seemed that the treatment of chronic disease had found a new pathway following a therapeutic application of mind-body medicine and meditation. What happened? Why are these still fringe activities relegated to a zone outside of main treatment? Why are we still being offered treatments that have the potential to be more detrimental to the body than the disease itself?
There is an obvious political angle here. Big Chem. The money. As in agriculture, there is a lot of vested interest in keeping this treadmill going. – it takes courage to resist the push of a well established medical juggernaut that is invested in a particular treatment model.
CANCER INDUSTRY
Cancer is a big industry and the current system has been around for years. N’s. experiences in this system have convinced her that the wheels have already fallen off the cancer management model. She feels that some people are being made extremely ill by toxic treatments that not only do not prolong life significantly – but make what life is left unliveable in the process. I quote: “People with aggressive cancers are being killed by toxic overload and then cancer is listed on the death certificate.” People who are not impressed with the treatments on offer are taking matters into their own hands – it is time their efforts were supported.
N. tells a story of a woman she knew who had had a bad cancer diagnosis: N.s words: I remember seeing her up at the cancer centre one day, and it was obvious, she had only got days to go..she was dying. The cancer treatment was still going, they sent her to Perth for more radiation on her spine because she couldn’t walk. And I remember standing there thinking: why don’t they just tell her that she is dying? Why are they not counselling her about how to manage? What are they doing? I felt like they didn’t know what else to do, so they waste time, sending her to Perth, in planes and ambulances, away from her family… She died a week later.
‘Why not be honest? It’s too advanced, we can’t treat this. Why is palliative care not right at that first appointment? That discussion about death. This is going to get you. You need to decide how you want to manage this… At what point is treatment enough? Why don’t they introduce this from the word go, with someone enlightened about how to approach this kind of situation: how do you want to live? In an ‘Onbeing’ podcast – on U.S. public radio – I heard a doctor talking about end-of-life engagement with patients. Over years, his thinking had shifted to dealing with the whole person, rather than simply focusing on the disease. The questions he learned to ask people facing the end of their days were along the lines of: What matters most to you? A simple question: What does a good day look like to you? asked by the team of medicos who have the capacity to enable this good day, whatever it looks like, still sits with me as a great thing to ask.
At different times Natasha called upon a core group of friends to support her with their thoughts as well as their practical help – she valued her bunch of luvvies, for their thoughts and actions. On the street where she lived in Geraldton two neighbours became hugely important parts of her life – they were her daily support crew, keeping an eye on her, providing easy company, dealing with seizures and helping with post-operative care.
Because N. kept herself well during the last three years in between seizures and the odd brain surgery, she made corresponding gains in the sense of herself as someone in charge of her own needs. She learnt how to cook down ounces of marijuana to make the oil that has made such a difference in reducing the size and spread of the tumour and thought nothing of holding pounds of the stuff in her house. It costs a lot of money, it’s illegal, but what could they do to her was her thinking? What jury would be interested in putting her behind bars for using an illicit substance – she could be confident that among the 12 jurors would be someone dead keen to learn what she knew to help a loved one who is currently facing the same hard choices about treatments that she has had to make. It would be a pyrrhic victory for the legal system to claim her as a criminal.
THE STRENGTH TO LIVE
Part of N.s strength came from her belief that she had chosen the right treatment for herself and perhaps from her acceptance that her disease would kill her. But she wanted to be fully alive up until that day and to that end she embodied life in a way that many with ostensibly better health than her could envy. This was her life. Her dis-ease was not a weird aberration – it was what she has been given to work with, and work with it she did, while remaining conscious of the people and places around her that brought her pleasure and solace. Possibly the hardest thing for N. was the practical limitation – she was not permitted to drive – a legal restriction to do with the possibility of seizures.
N. wanted me to write about her experiences because she began to see that she might be able to give courage to others working with a diagnosis who wanted to seek their own answers.
N. met with interest from some doctors and specialists and even within the three years since her own diagnosis she felt a shift in attitude. Doctors, specialists and staff could see that N. was kicking goals in terms of maintaining wellness. They only needed to look at their own statistics for the behaviour of this particular tumour to see that N. was a walking, talking miracle.
DEATH AND THE ORDINARY
What I learnt from N. is how ordinary death is. Death sat with us when we had a cup of tea and was present when we laughed at the antics of our dogs. Death was there as we ate lunch – no meat, live greens. Death was as ordinary as toast for N.
N. also wanted to be acknowledged for the perspective she could offer that had both practical and spiritual lessons for those who were interested. She occasionally expressed a bit of frustration that people weren’t more interested in what could be called ‘living on a knife edge’. It is something that theoretically all human’s do, only N. was forced to be much more aware of this knife edge than most of us.
N. understood people sometimes felt awkward around her – her advice: just come and have a cup of tea with me and tell me what’s going on. Part of my learning was to get over my surprise that N. was interested in my life. I stopped trying to compare our experiences, automatically downgrading my own in the face of her bigger drama. N. wanted, as before, to be part of people’s lives – you are after all alive until you aren’t – funny that I had to learn that from someone who as far as it can be comprehended, didn’t expect to be alive for the usual allotment of years.
The friendly radiologist told N. at one point that she was, indeed, living in denial – but how else can one live? Our everyday minds have no capacity to cope with the idea of our imminent death, in one sense, we are all living in denial. N. lived for 3 years with a disease that could and did, eventually, kill her: that’s the bald fact. I think the degree to which she made peace with this fact is where she made a powerful difference in the quality of her own life and the life of the people around her.
I learned to relax – to stop looking for the big moment, the profound insight – moment by moment it is just about living. No-one knows when death will come – to be alive and fearless in the face of the unknowable is what we have
Cancer is a word that produces many opinions and many ‘shoulds’. N. become allergic to the ‘should’ word – as in, you should be eating something, trying this treatment, listening to this podcast. People love to be helpful and love to produce ‘solutions’ to illness. It’s this ‘doingness’ that keeps the cancer industry churning through the bodies.
But after the initial intense research period N. was looking for comfortable engagement with friends, not other people’s ideas about fixing cancer.
As for her experiences in the hospital system. N. was convinced the whole communication thing needed to be rethought. The level of discussion around treatments – being honest about what treatments can and can’t do needed to be opened up. She blessed the professionals prepared to answer questions, listen to her, show interest and support for the path she took to manage her own wellness. She feels that patients who have effectively received a death sentence could be introduced to a team who could walk them through treatment, aftercare and palliative options. People who would answer her questions and be open to ideas that lie outside the medical model….and kindness in all transactions to cope with the huge change in life a diagnosis can induce. Kindness was a word she used a lot.
N. had a crucial conversation early on in the piece. After the first appointment when she decided she didn’t want to do the treatment that was on offer she talked it through with an oncologist she was assigned to as a public patient.
This in N’s words: “Look, I could do it your way, or I could do it my way…I get there is no cure. I could do it your way and it fails, or I could do it my way and it fails. And the oncologist was really open: yeah you are absolutely right.’ We don’t have a cure’. That’s what they need to say to people, there’s the change in the language. There is no cure, let’s help you manage ….rather than, there is no cure, so we’ll give you a fucked up treatment that will kill you and we’ll say cancer killed you….
That’s what I reckon.”
N. lived her way – and then she died. I’ll miss her.
