Diagnosis

I wonder how many people just die of shock when diagnosed with terminal cancer. I was going about my normal life when I felt a sharp pain in my back and pushed for tests my doctor didn’t think I needed. Sixth sense I guess. In ten short days I was swept up in a tsunami of X-rays, biopses, CT scans, PET scans and MRIs as multiple tumours were discovered in my lungs, lymph nodes, bones (mostly spine) and last but worst, my brain.

It unfolded in excruciatingly slow freeze frames, each one exquisitely brutal in its accuracy and tossing me into a dark, breathless, bottomless sea of no exit, no future, no hope. The universe just popped like a party balloon and lay shrivelled in my shaking hand.

As the results came in my life force started to dwindle like a waning moon, fading and thinning daily as if the knowledge itself was killing me. When they heard I had cancer some people started saying their goodbyes in subtle and implied ways, while my well-intended medical team treated me like I was in a hospice for the dying. And for a time, dying I was. I started coughing blood in the mornings and became breathless just walking up the stairs. My eyesight went wonky on the left side and a tumour on my C3 vertebra (half way down my neck) caused constant and, at times, acute pain. I was sliding downhill faster than a teenager on a skateboard. I was tired and felt cold a lot. Very, very cold.

Perhaps it was radiation from all the scans that sent things spiraling so quickly, but fear and shock are powerful forces that ricochet through the body like bullets. I was completely blindsided by my diagnosis. I married the love of my life, John, seven years ago and have a beautiful, mischievous turbo-charged four-year-old daughter, Gabriella, whom I waited many years to have. I was heartbroken at the prospect of leaving my husband to raise her without me and of leaving her to grow up without her Mum. I choke on the worlds even as I write them.

Two weeks after I was diagnosed her teacher told me they were talking about scary things at school because it was Halloween and Gabriella said, “When I’m scared I go to my Mummy”. My physical decline was tough to come to terms with, but those were the moments that brought me to my knees. And for days on end I disappeared into that starless night where you cannot see or hear or speak for wishing something different and the only way back to morning is in the slipstream of unbridled grief.

Nothing was the same. I couldn’t see the future anymore. I started to envy people with grey hair, walking sticks and well-worn wrinkles. They represented a destination I would never reach, an as-it-should-be twilight somewhere round a hundred more corners in time where life had been fully lived and contentment fully found. I even envied other cancer patients I overheard in oncology waiting rooms asking, “Why me?” when they had been diagnosed. I would love to have felt that innocent in the face of this disease, but I didn’t. I was assured I had a faulty gene and a “naughty cell” (my oncologist’s words) that had run rogue through my lymph system – a slow growing adenocarcinoma that’s very hard to detect until it reaches Stage 4. A ticking time bomb.

But I knew I had done things to make a bad situation worse, going right back to teenage eating disorders and a pervasive self-loathing that took me many years to shed. It all seemed to have caught up with me now so I swung like a hammock between “Why not me?” (as in ‘I’m nobody special’) and “Of course it’s me” (as in ‘I bloody well deserve it’). Within an hour of first being told my cancer was ‘incurable’ I sat on a friend’s sofa bent double by a thousand ‘if only’s’ that trampled like bandits through my past, as devastated by regret as I was by my diagnosis and resigned to the death knell that now hurtled towards me like a freight train.

The hardest day was being told I had “multiple tumours” in my brain. The appointment was to plan radiotherapy sessions to the tumour on my neck, but my results had come in sooner than expected. I was alone. I don’t remember a lot of it. Something cratered inside. All the fear I had felt until then froze into a lake of despair. However bad this got I believed I could face it as long as I had my lucidity and clarity of mind, but now that was being threatened. I wasn’t allowed to drive my car so a kind hospital secretary took me home to my family, where we nestled into each other as if to shield ourselves from a great storm. This was the email I wrote my parents that evening:

Dear Mum and Dad,

I am sorry to share this news by email, but we are both too tired and shattered to talk. It could wait until you visit tomorrow but I want you to have time to absorb it first so you can play with Gabriella and keep things as normal as possible.

There is no easy way to say this. I had my brain scan results today and I have multiple tumours (all small) in both hemispheres of my brain. That is why my eyes have gone wonky. I am beyond devastated right now. I can’t even write about the treatment approach (there is one) because it is more than I can bear. I need to put my darling girl to bed and lie with my heartbroken husband. There is still some time but the mountain just became so much steeper. It is hard to hope tonight. I had to leave my car at the hospital. No more driving.

This all seems so very cruel and sudden and impossible to keep up with. I am very strong and brave, but also very human and vulnerable and aching for more years with my beloved family who I waited so long for.

I am so sorry to bring you so much grief.

Don’t call tonight. I can’t speak. We will see you tomorrow.

With much love,
Sophie

Fear. Grief. Regret. They damn near killed me before the doctors had worked out my treatment plan, which took six more weeks to instigate. Friends and family kept telling me to ‘be positive’ because ‘half the battle is mental’. I knew what they meant, but it drove me nuts. Being positive isn’t just a switch you can flip. You can’t put icing on dog shit and call it a cake, and this qualified as the shittiest situation I had ever found myself in. But I knew I needed to reach for the light. So I did.

Amazingly, the mind concentrates with laser-like precision in the face of disaster. An astounding strength ascended like a fountain through my diseased spine, simultaneous and equivalent to my despair. I became brave, determined, focused and relentless in my pursuit of hope. The more ill I felt the more strength rose within and a growing stillness entered like an old friend I had loved, but lost sight of a long time ago. I think its name was Faith.

It took some time, but I have returned to morning now. There is light and shade again. Fierce determination to live and appropriate fear that I won’t. Sadness about my limitations, like not being able to work, and joy about what’s still possible, like walking in winter sunshine through frosty fields and doing puzzles with my daughter by the warm wood burner at home filled with logs lovingly chopped by my husband. I have started various treatments and things are improving, but if I hadn’t grieved for the loss of my longed-for future and forgiven myself for all the ‘shoulds’ and ‘shouldn’ts’ that invaded my past, I doubt I would be here now. I would have died of shock. And the complete absence of hope.

I wonder how many people are dying of hopelessness because they have been told they can’t be cured? I wonder how much this disease is accelerated by sheer anguish and how many poor prognoses are fulfilled by the belief that they must be true? Diagnosis is a beginning, not an end. It is the beginning of a journey into who you are and what you’re really made of, a life sentence not a death sentence as my friend Catherine told me from the start, a living of every moment now.

I don’t know when I am going to die or even how. No one does. I know the odds of surviving are stacked against me, but the odds of me living, really living, are stacked in my favour as never before. I am scaling the mountain that is now my daily reality and remembering to take in the view. It is more luminous than ever and more fragile. I savour it like champagne I no longer drink and Swiss chocolate I no longer eat. It tastes better and lingers longer. Like the smell of Gabriella when she snuggles up to me at bedtime and falls asleep in my safety. Exquisite and eternal. I try not to look at the peak anymore – just the next crest, the next day, the next step. One moment at a time.