A Marathon, Not A Sprint

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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.

Inside Out

“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.

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  • 10th Jun 2016, 2:23 am  Reply

    Sophie, you are such an inspiration. May all the sharing you do with the world bring you many, many blessings in return for your health, peace and wellbeing. Wishing you continued courage and strength. Thank you!! xo

  • Kaye chambers
    20th May 2016, 8:14 am  Reply

    Dearest Sophie
    Thank you for your clarity in sharing. My daughter Rose (now 16) is on a tough journey too, first panic attacks, then suicidal, now self harming. Her beauty, love & talent shine out at me, yet she sees only blackness, failure and no future. So we are both climbing different mountains,both accepting death & perhaps will see you when we both reach the top of a ridge.
    With much love

  • Judy Roy
    20th May 2016, 1:28 am  Reply

    You are a brilliant woman, with a light to share for us all. Thank you for all you are giving to us and the gifts your messages hold. Sending you healing love and energy.

  • Paul McAweney
    19th May 2016, 9:25 pm  Reply

    Thank you Sophie, wonderful writing which stretches my mind and soul to its best places. I have great people in my life yet still curse if some slight strain prevents me playing golf, and then I read you and feel awful in some ways but inspired in many. Your in my thoughts and prayers so much and the moral/mental courage you display is so hard to adhere to and draws us to be our best, love Paul, x

  • Gerry
    19th May 2016, 8:10 pm  Reply

    Sorry, I got cut short… You have this unique ability to touch souls with your words. You always have done. But somehow, cancer has amplified that gift, in a way that goes to the core of humanity. Cancer has released you, fully into the world. And we are the grateful benefactors of that release.

  • Gerry
    19th May 2016, 8:04 pm  Reply

    What you write has relevance for all of us – touched by cancer, or not. I did a thousand-mile hike through the Appalachians, and remember vividly reaching that ridge, only to find the next one still ahead. That was years ago, before I was able to relate that in some metaphoric way to life. This post did that for me, and gave me an insight into your journey, from some kernel of my own experience.

  • Julie Barnes-Frank
    19th May 2016, 7:44 pm  Reply

    Once again I’m feeling connected to a very special person. You are writing stuff that I feel. Its helping so much but more importantly you’re making me realise about options.Im so pleased Ive found you …you are actually one of my options daft as it sounds.
    With you on Monday x

  • Pam Devine
    19th May 2016, 6:28 pm  Reply

    Your sharing makes us all braver Sophie. That funny sensation you will feel as you ascend your next ridge is the feel of hundreds of our hands pushing you up and forward.

    • Sophie Sabbage
      19th May 2016, 6:31 pm

      Now that made me cry Pam! Thank you

  • Martha deaton
    19th May 2016, 6:17 pm  Reply

    Breath by breath, step by step. You are a beautiful teacher.

  • Robert
    19th May 2016, 8:30 am  Reply

    I went for a run this morning and at one point had the choice of taking either the long route or the shorter version. I took the shorter option (it was early and I hadn’t had breakfast) but having read your blog I get that there’s no short cut to anything worth having. You’re special and I feel blessed to be on your list.

  • Sheila
    19th May 2016, 6:58 am  Reply

    Truly amazing.

  • Suzy Lucas
    19th May 2016, 6:51 am  Reply

    Sophie, as ever there are jewels here for every marathon runner. What a gift, thank you.

  • Peggy Jarrett
    19th May 2016, 12:10 am  Reply

    You teach me, Sophie, you teach me.

  • Karyn
    18th May 2016, 11:06 pm  Reply

    Such a great blog, you are so eloquent! I, too, was diagnosed Stage IV at the end of 2014 – brain, spine, lungs, liver. I, too, look at every alternative. Your book was there to boost me as no-one else could.. There are few who really understand. Thank you so much Sophie, from the bottom of my heart!

  • Cousin Mary
    18th May 2016, 11:02 pm  Reply

    Darling Sophie. You are the most amazing girl: brave and wonderful and so bloody courageous. Your writing is pure poetry and I am swept up those ridges with you and should you falter, you know that everyone who loves you will be there to push and shove and do everything they can to get you over the next one.

    All our love is with you. xxx

  • Libby Kerr
    18th May 2016, 10:06 pm  Reply

    You really are a fabulous writer! Thank you for sharing your understanding and celebration of complexity, ambivalence and paradox – recognising the importance of both vulnerability and resilience, awe within the awful, that our souls need feeding as much as our cancer needs healing. And your imaginative search for treatments that reflect this – a profoundly integrative approach.

  • Gilli Stephens
    18th May 2016, 9:57 pm  Reply

    Oh Sophie, how wonderful that something has shifted in the system which is softening for you, by you and with you.
    Your high bar has become a familiar ridge for you which you know all about on the way up and that it is worth the effort.
    I find that the way you write about how you hang in is including and all-embracing. Thank you.
    Huge hugs xxxxxxxx

  • Julie Webster
    18th May 2016, 9:08 pm  Reply

    I am not only moved by your story because my heart has been touched by our fleeting connections, but also because you are an amazing writer.
    Authentic, real and yet sensitive to the many contexts of your readers.
    I particularly loved your writing for the images you use, particularly the phrase … the system seems to be softening in my hands like ice melting into a river of mutuality through .

  • Clare Vivian-Neal
    18th May 2016, 8:23 pm  Reply

    Sophie, I am deeply touched. Thank you for taking the time and care to write and sharing your experience. You are a living example to me and many of how to embrace each day, all of it. Love, love, love you.

  • 18th May 2016, 6:35 pm  Reply

    Sophie, there is a program in the U.S. called Sixty Minutes. Last week there was a portion devoted to brain cancer being attacked by polio injections. The trial is at Duke University in the U.S. I don’t know if it appropriate but I am forwarding it on to you anyway. My husband, Howie and I are friends of your parents when in Mexico. You are in our hearts, Julie

  • Barbara Cleaver
    18th May 2016, 6:17 pm  Reply

    Oh my dear.

    Your courage is very great. You are a hero.
    We watch you, and learn from you, and pray for you.

    Sending love from my family to yours, and from me to you.

    Please heal soon and completely.

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