Growing up in Wales involved being hauled up mountains by my parents on a regular basis – come rain or shine and usually against my will. I preferred to climb them on horseback, alone. Often trailing a metre or two behind the rest of my family I would look up at the next visible ridge believing it was the summit, only to see another ridge rise before me when I ascended the last few feet. This seemed to go on interminably, ridge after ridge after ridge without denting my conviction that the next ridge would be the last.
The last climb was usually the steepest and offered the most difficult terrain. This was where my resistance grew strongest and my complaints loudest. It was where I implored my Dad to carry me or sat sulking in the wild winberry bushes while my family marched on ahead of me. It was where I often gave up.
Eventually I would force my burning legs up the final escarpment to join the others, partly to prove to myself I could do it but mostly to save face. It was invariably worth the effort. The old red sandstone hills cloaked in grass, heather and forestry rolled out like a green storm as far as the eye could see. Then the goal of reaching-the-top-in-order-to-stop would yield to the possibility of climbing every hill and reaching every summit and wondering how many green storms rolled out beyond those.
And so it is with cancer. I climb a ridge only to find another ridge, each one steeper than the last. I will the next one to be the last one, hoping that I’ll soon find myself at the summit where I can sit down and rest at last, swollen with satisfaction about the lonely distances I have traversed and brave trails I have blazed.
But what is that summit? Remission? A cure? The day I can wake up without cancer casting its shadow across my morning and its fog across my gaze?
Or is it when I embrace the climb more than the destination? Is it the day I let myself be cradled in the gentle fold of a giant universe, only to find myself in awe of the unexpected landscape I would never have witnessed without this disease?
Discovering my new brain tumours – ten small ones as it turns out – was like arriving at the foot of a steep escarpment and sulking in the winberry bushes, certain I couldn’t make the climb. The news came, as all news does, in a series of ‘lifeshocks’ (moments in time when reality strikes) – first in a brief phone call with my oncologist and then in a ninety-minute meeting at his clinic:
“We have a real problem Mrs Sabbage.”
“There are four visible tumours in the brain (showing them to me on the scan) and several tiny spots indicating there may be more.”
“I have discussed your case with a top team of specialists.”
“The lung specialist you usually see is on holiday and we can’t wait that long for an appointment so I have asked another consultant to meet you as soon as possible.”
Bam, zap, pow. But leaning in.
“The blood brain barrier is most resistant to any medication so this indicates your current treatment has stopped penetrating the brain.”
“The standard treatment now is normal IV chemotherapy followed by an immunotherapy drug that you have a 50% chance of qualifying for.”
Bam, zap, pow again. But hanging in.
“On average this treatment controls the cancer for ten months”.
At which point I cratered inside. My eyes welled up with tears at the prospect of gaining a mere ten months IF the ‘standard treatment’ (which will leave me fatigued, vomiting and highly prone to infection) is effective in my case.
“No,” I eventually responded, pulling my sanity, courage and resourcefulness up from the bottom of my boots. “We are not doing IV chemotherapy. We need to find another way.”
And so began another deep dive inquiry into what might be possible if we just looked over the next ridge instead of settling for the first.
That day I interrogated my poor oncologist for over an hour – about cognitive and motor functions I might lose, trials I might participate in, drugs that penetrate the blood brain barrier, tests he hadn’t even heard of and radical options we might try.
To his credit he met me in this inquiry with no pushbacks or put-downs. As I was leaving he even told me what he had learnt from this encounter and the attendant nurse said,
“Every patient is different Mrs Sabbage, but you are clearly the master of your destiny.”
This is how it has been this time around. I have had several meetings since then, with him and other orthodox doctors. I have asked many more questions, each one laying the ground for my death plan and my life plan. I have researched options not presented to me by the professionals and refused ‘standard’ solutions on the basis that they are, well, standard.
Something has changed. I am not hitting walls, meeting resistance or being patronised by experts who want me to do what they say. Instead, the system seems to be softening in my hands like ice melting into a river of mutuality through which creativity and possibility flow.
I am being related to as a person not a patient, a human being not an illness, the director not the recipient of my treatment. At the first meeting with my new oncologist he began by saying,
“I know what I want to discuss with you, Mrs Sabbage, but let’s start with what you want to discuss with me.”
More recently, as we debated increasing the dose of the drug I’m already taking (which has unpleasant side effects), he concluded the conversation with,
“I’m not going to tell you what to do about this. These decisions are entirely yours to make.”
Maybe my other consultant tipped him off about me. Maybe he read my book. Or maybe he just recognised the brilliance of my beautiful brain as well as the tumours therein.
This process of inquiry has been painfully slow and a plan is only just forming. Yet in this time I have experienced an almost unwavering inner authority that neither needs to push for what I need nor stand in opposition to what is on offer. Instead I assert myself with crystalline clarity while bending, ever so softly, to meet and accommodate what I hear. In the absence of outer solutions I have found inner resolution. And a Sophie I can trust.
I have also had some very dark nights of the soul – the substance of which I will reserve for my next book, which is beginning to show its face. I have been to the bottom of fear, despair, impossibility and faithlessness. And, once again, I have been broken and redeemed by grief.
Throughout this time I’ve been doing my inner work with my mind, heart and spirit while I try to figure out what to do with my darling body. I even read my book again to help me find my way, sometimes turning the pages as if someone else wrote it, other times listening to my own voice on the audiobook read it to me in the car or before I slept. Does that sound weird? Maybe. But it helped. It made me feel grateful to myself.
The deepest inner work happened last week with support from some amazing practitioners, including two new ones. This was an intense, conscious, focused process of ‘whispering’ that lasted two full days. And once again, in the midst of cancer’s awfulness, I found awe-fullness. Because it is invariably in my emptiest moments that I am, paradoxically, filled with awe.
The next morning many of the blocks, delays and unanswered questions regarding my treatment shifted. I was approved for a specialist procedure I had been waiting several difficult days to hear about and three new alternative possibilities presented themselves. The metaphysical sun rose.
On a ‘webinar’ call I led recently with a group of cancer patients I was asked how I choose from the diverse treatments and protocols I discover.
I explained that, on one hand, I am actively out there researching, inquiring, evaluating, discerning and intuiting my choices. On the other, I am standing still, listening into the silence and waiting to see what comes. Something always does. Usually several somethings. And it is these possibilities I trust the most – the ones that arrive at my door unbidden, as if they were looking for me.
This time one of these arrivals is a natural practitioner in London who has diagnosed ‘a chronic weakness of the nervous and endocrine system’. In essence, she explained that my nervous system is buggered after a long period of sustained trauma.
I wouldn’t have used the word ‘trauma’ before and don’t use it lightly now. But I recognised that my body really has been traumatised by a continuous onslaught of physical blows (not to mention emotional ones), few of which might be called ‘traumatic’ in their own right but collectively amount to just that: scans, drugs, infusions, blood tests, supplements, side effects, procedures, protocols, treatments, contrast dyes, kidney stones, cannulas and countless bloody needles in my weary (and increasingly hard to access) veins.
She isn’t attempting to treat my cancer. She is treating my nervous system instead. This alone is helping me face what is in front of me with more grace, ease and calm. It is also teaching me that when I believe ‘my cancer needs healing’ I forget what is perhaps more important – that my body needs permission to let go of the unacknowledged traumas that mark some of the ridges I have climbed in the past fifty years. It has been a deep, sanity-preserving, adrenal-soothing relief.
During this period of waiting and wondering, the world has continued to turn and the stars continue to glisten, unmoved and unimpressed. Life goes on.
Gabriella turned six in April and Joy – her favourite character from the film Inside Out – came specially to entertain her. It was perfect. Even under our circumstances, which sometimes lead to bedtime conversations about dying (initiated by her), joy is Gabriella’s default position and the emotion she restores me to time and again. Just last week she offered me this priceless reassurance:
“Mummy, when you are reborn your cancer will be gone and you will feel much better.”
Perspective. It’s all a matter of perspective.
As I write, I still have ten brain tumours. I also have the beginnings of an integrated plan. This includes Gamma Radiation, which targets the tumours very precisely instead of radiating my brain indiscriminately. The procedure is unpleasant and carries some risks. I know it won’t address the underlying disease, but it is a viable treatment that I hope will buy me enough time to implement other options (some of which are already up my sleeve).
At a recent meeting with my new oncologist – who happens to specialise in the particular lung cancer mutation I have and to whom I happened to be referred because my other oncologist was on holiday – I complained about how long this was all taking. He smiled gently and leaned forwards towards me.
“Just remember, Mrs Sabbage, this is a marathon not a sprint.”
My state shifted instantly. I loved that. It took the long view instead of the short ten-month one we started out with six seeks ago. It also reminded me of the patience, tenacity and faithfulness it takes to climb a mountain to its summit – stride by stride, breath by breath, ridge by distant beckoning ridge.