By Sophie Sabbage
When you are acutely, chronically or terminally ill, as I am, you will do all you can to live as well as you can for as long as you can and, when your options are genuinely exhausted, to die as well as you can too.
I don’t mean live comfortably, sedated and pain free, numbed out from the fear and horror of your impending and premature demise. And I don’t mean stay alive at any cost, following the ‘whatever it takes’doctrine that emerged from the success of medical technology and burgeoned into the expectation of patients and demand of their loved ones.
I mean live well - vibrantly, consciously, taking your place in the story, fully engaging with what is happening to you, planting your heart in the people you love, grieving the closely-guarded desires you had for your future and remaining the author of your destiny even in the face of your unassailable loss of control.
A crucial part of this is being granted the power to direct your own treatment as you navigate the medical maze and seek the counsel of every expert you can find. Despite the development of ‘patient-centred care’ as an antidote to the prevalent top-down relationship between patient and practitioner, I have found this to a be a surprisingly tall order. Instead I have often encountered unflinching expertise and fixed opinions at the expense of enquiry, partnership and empowerment.
Putting together my team of experts
Within a fortnight of being diagnosed with late stage cancer I knew I wanted to take an integrated path by combining orthodox synthetic treatments with complementary natural ones. It seemed to me there was significant merit in both approaches and plenty of evidence to support that view. I saw no reason to choose between them and went about gathering a diverse group of practitioners to support me in my quest to ‘live well’(and, frankly, get well if there was even the slightest chance I could pull that off).
Before long I had pulled together quite a team (an oncologist, radiotherapist, nutritionist, naturopath, acupuncturist, colonic irrigator, lymph drainage masseuse and even some ‘integrative’ doctors abroad). Friends and family rallied round to raise funds for this eclectic group of health experts and I did considerable research to choose wisely the practices I believed could make the most difference.
To be completely clear, each of these practitioners has proven exceptional both in their field of expertise and the depth of their care for me as a patient. I consider myself privileged to be served by them and am deeply grateful for the part they have played in getting me this far. They aren’t just extending my life, they are enhancing its quality and enabling me to continue making it count for something while I’m still here.
But here’s the thing. Perhaps naively, I expected everyone to bat for the same team in service of a single purpose – my wellbeing - and to collaborate willingly and enthusiastically on my behalf. Not literally of course. I didn’t imagine they would all be on the phone to each other, just respectful and supportive of each other’s contributions to my case.
There are quacks and pharmaceutical companies suppress and bully people
Instead I found myself caught in the cross-fire of a great divide: orthodox vs complementary, synthetic vs natural, conventional vs alternative. These two worlds are so positioned against each other the patient is often left to figure it out alone and integrate opposing views about their treatment. This has certainly been my experience. Natural practitioners berate the slash-it, burn-it, poison-it approach while the doctors and oncologists caution me against anything that isn’t rigorously (and expensively) evidenced and approved by the regulators.
This isn’t personal, it’s systemic. There is a mutual discounting that pervades these two paradigms and some with good reason. There are probably a few complementary ‘quacks’ out there who do a great injustice to the many practitioners who are highly trained and serve patients with real integrity. And the pharmaceutical industry has a lot to answer for in squashing, suppressing and bullying people who come up with alternative solutions. I don’t need to harp on about it, but it really is a scandalous catalogue of putting profit before patient care.
As a patient you need to have considerable presence of mind and no small amount of courage to forge the best possible path of healing through this dense forest of contention, self-righteousness, hostility and closed-mindedness.
On one hand the doctors tell me to eat a ‘balanced diet’ while placing bowls of sweets in the chemo treatment rooms and poo-poohing any suggestion that cancer thrives on sugar – which any qualified nutritionist and some more enlightened oncologists will confirm. In this instance I choose to listen to the nutritionists – partly because it fits my own experience of craving extreme amounts of sugar in the months prior to my diagnosis and partly because nutrition is a minuscule (bordering on non-existent) part of medical training in this country (unlike in Mexico where it is a major part of the curriculum). I simply don’t think my doctors are qualified to advise me on this matter.
Complementary side could admit not all chemo is bad
On the other hand some of my natural practitioners counsel me to avoid chemotherapy and radiation like the plague because it is as likely to kill me as my cancer. While I acknowledge some compelling evidence to that effect, it is easy to say ‘don’t do it’ when your body isn’t riddled with tumours that are draining your life force and causing you considerable distress.
I had a large tumour on my C3 vertebrae that was eating through the bone, threatening my spinal column and cascading rivers of excruciating pain down my spine several times a day. For me, radiation was a no-brainer. And it helped a lot. I am now walking at pace for an hour a day and giving my five year old painless piggy back rides on a regular basis.
At the same time I resisted radiation to my entire brain, which was peppered with multiple metastases in the lining and tissue. This was probably the hardest decision of my life (you can read the full story in My Beautiful Brain on my blog). I made it under considerable pressure from doctors and some family members to have the radiation, but I wanted to see if other treatments could help me before I further risked my already-compromised lucidity.
In this instance I believe that the combined effects of orthodox and natural treatments (plus a homeopathic dose of divine intervention) have made a big difference. Of course I don’t actually know. I have created such a gumbo of treatments from both sides of the divide it’s impossible to know where efficacy begins and the placebo effect ends. But this is of little concern to me as long as progress is being made and no harm is being done.
It’s no fun playing piggy in the middle when your life is on the line
What matters to me is that I am directing my own treatment with as much information, guidance and discernment as I can muster. What matters is claiming some semblance of power in the face of powerlessness and drinking the sweet, seasoned wine of another life-drenched day until gratitude bleeds through the other side of fear and sorrow and dismay. What matters is that five months after my original scan my brain was tumour free.
It is no fun playing piggy in the middle when your life is on the line. I don’t want to be warned off what the other side is offering or admonished for accepting it. I don’t want to hide what I’m really up to from my doctors for fear of paternalistic, if well intended, notes of caution about alternative treatments they are rarely qualified to comment on. And I don’t want to be judged by the purist natural healers for embracing what the Big Bad Pharma has to offer me.
I want to be transparent with everyone involved and arch my diseased body into a bridge they can meet in the middle of and shake hands. I want both sides to abandon their conceit and join me in the darkened corner of the world I find myself in. I want curiosity, enquiry, collaboration and a circuit of mutual respect in which serving the patient is their highest and noblest purpose. I want them to notice the eagle across the water and the carpet of possibilities on the windblown shore of the other country. I want them to be bigger than themselves.
Fortunately there are some who really get it. Like Dr. Dana Flavin, half human, half angel, who has worked with cancer patients for nearly forty years by successfully integrating orthodox and natural medicine to great effect. As compassionate as she is clever, she will collaborate with anyone if it serves the patient and has helped me navigate, integrate and simplify the diverse drugs and supplements I’ve been prescribed by different practitioners, herself included. This halved my stress levels and restored me from a taut piece of rope in a systemic tug of war to a human being with cancer who is reaching for the silver crest of stars in a foreboding night sky.
My marvellous acupuncturist and dispenser of truly disgusting, but surprisingly effective Chinese herbs also put it beautifully when he said,
“You have terrorists in your house Sophie. The chemo and radiation are the SAS, here to take ‘em out. The rest of us are taking care of the citizens, the land and the building structure, which are so often destroyed by chemo. It’s the best kind of teamwork.”