How do you find the balance between living and the ongoing treatment that brain cancer requires? By Georgia Blain.
The Unwelcome Guest: Meditation and guilt
In the six months since I have been diagnosed with a brain tumour, I wake most mornings before dawn, immediately alert to the fact that I have cancer. Sometimes I go back to sleep. Often, though, it’s no more than a restless doze.
As soon as the sun rises I plug my headphones into my iPhone, tap on the bright orange dot of the Headspace app, and wait for Andy to take me through the next guided exercise.
Andy is the Jamie Oliver of meditation. He’s your non-spiritual guru for the urban bike-riding professional. Dressed in a casual navy linen shirt, sporting a bald head and olive skin, Andy looks fit, happy and calm. He makes meditation seem easy, constantly reassuring you that it’s okay if you’re finding it difficult, don’t worry, it’s just a matter of practice.
I have a busy mind, a readily distracted mind, a mind that can turn into a panting wolf tracking down the scent of my own fear. So far I’ve done the basics package, the anxiety package, the stress package, the depression package and a few of the Headspace Pro packages.
Andy tells me anxiety and stress is never going to go away.
Too right, I want to reply.
Rather, the aim of the exercise is to put some space between you and the emotional storm, to observe through a window instead of going out there and getting struck by lightning and drenched in the downpour.
Sometimes when I meditate I fall asleep. Other times I get so overwhelmed by all my worries that I don’t see the point in finishing the exercise, but I do. Both are simply ways in which the mind is distracted.
Meditation is my way of coping with the emotional onslaught of my diagnosis. When I don’t do it, I notice the difference.
I use acupuncture to help me deal with the nausea and fatigue induced by treatment. I also have an exercise regimen, and I drink Chinese herbs, and bone broth, made by a friend.
But as far as trying to keep the tumour itself at bay, I have put all my eggs into the basket of medical science.
This basket contains one main weapon for my particular form of cancer: the Stupp protocol. Published in 2005, it established a new form of treatment. Patients now undergo surgery, followed by six weeks of concurrent radiotherapy and chemotherapy, and then by six cycles of chemotherapy alone. In the past, people were often treated with surgery and radiotherapy only, with life expectancy lower.
I was given information sheets about the treatment, and the doctors were thorough in their explanation. They told me that the aim of radiation and chemotherapy was to shrink tumours and kill cancer cells. Both are not without risks or side effects. In nearly all cases, the treatment won’t stop the tumour from returning – it’s just a matter of when.
Dealing with the shock of diagnosis, and the after-effects of surgery, I didn’t feel as well equipped as I otherwise might have been to rigorously question some aspects of what was in the basket. Perhaps I didn’t want to know. This was my main hope, and I didn’t want it dented in any way.
I also had to make decisions in a hurry, and there, in the slipstream of the traditional medical model, I didn’t ever consider or research alternative treatments. It wasn’t that I was against them per se, but I had neither the time nor the expertise to evaluate their claims.
When it came to discussing complementary therapies as an adjunct to my treatment, the doctors took a pragmatic approach. They just wanted to be informed, in case it interfered with the chemotherapy.
They also had a word of warning – there were a lot of people out there trying to fleece desperate people. Be careful.
Most recently, Belle Gibson hit the headlines by saying that she’d cured her brain tumour with diet – an app and cookbook at the ready to launch her business. Next came the revelations that she’d never had cancer in the first place, nor had she made the sizeable donations to charities she’d professed to make.
But it’s not just advocates of alternative therapies who can act unscrupulously. In January this year, Susan Gubar, who blogs about cancer for The New York Times, wrote about the routine lapses in reporting clinical trials, despite a United States law requiring public reporting from all pharmaceutical companies, hospitals and universities. She cites instances where failure to report put patients at real risk, sometimes even of death.
In Australia there is no obligation to report clinical trial results to the general public. There is only an obligation to prospectively register trials in publicly accessible databases.
I have to maintain faith and hope. I need faith in the approach I have chosen to treat my illness, and a belief that I am being well guided in the decisions I need to make along the way. I also have to hope that I will respond well, perhaps even becoming one of the miracle-survivors who lives well beyond the life expectancy for someone who has the particular tumour I have.
The approach I chose was a pragmatic one. Early on I decided that if I had a limited time left I didn’t want it to be ruled by my illness. I wanted to live as normal a life as possible, enjoying food, perhaps the odd glass of wine, and not spending all my time going to appointments to deal with my cancer.
I didn’t want to chase down every rabbit hole of potential cure. And I didn’t feel equipped nor have the inclination to wade through statistical data that professes to prove the benefits of a particular therapy.
It’s difficult to find this balance between doing my best to treat the cancer and not letting it occupy too much space. I’m also discovering that this balance shifts. Each time I undergo a round of chemotherapy, different side effects are more prominent, necessitating different ways of dealing with them.
On average, I now spend at least two hours a day dealing with my illness. Once my meditation is finished, I drink my Chinese herbs, I walk the dog, and I do 15 minutes of core strength exercises. I have acupuncture once a week, blood tests and appointments with the oncologists once a month, brain scans every three months and now the occasional trip to the counsellor.
It’s more than likely my illness will progress and then I may become more desperate in my hunt for a cure, or a way of buying more time. In cancer land, it’s always day by day.
There are times when I doubt myself terribly, chastising myself for not doing enough to “combat” this tumour, for being lazy, for failing to attack my cancer from all sides. These war metaphors always have the shadow of defeat, of not being valiant enough, and I also do my best to avoid them.
But there have been nights when this guilt about not being a good warrior wakes me before dawn. I try hard to get back to sleep using a breathing technique recommended to me by a neuropsychologist. It involves taking a deep breath in and exhaling with a purr, like a cat. When it fails, I wait for the first fingers of light to creep under the blinds and I go out to the lounge room.
I find my iPhone and I swipe to that bright orange dot, beginning the exercise as Andy always tells me. First I become aware of the space around me. Then, I close my eyes and concentrate on the breath flowing in, and flowing out, before trying to visualise warm liquid sunlight, pouring down on me, slowly filling my body, melting away the stress.
Most times I don’t find peace until the very end of the exercise. I worry about how this liquid sunlight gets in, or how exactly it’s going to fill my body, or the amount I have to do, knowing I haven’t had enough sleep.
And then, finally, Andy tells me to let my mind do whatever it wants to do. That’s when my busy brain settles, calm for one brief wonderful moment, just before I have to open my eyes, unplug my headphones and try to keep myself from running out into the storm again.
The Unwelcome Guest is a monthly column about Georgia Blain’s life with cancer.
This article was first published in the print edition of The Saturday Paper on May 21, 2016 as "Alternative realities".
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