The Ghosts of Cancer


“Excuse me, miss, can you step this way?”

The airport security officer pulls me out of the line, and leads me to a cylindrical glass pod.

“You’ve been randomly selected to undergo a body scan, please stand on the line, and when directed step into the machine.”

I meet her eyes.  “I’m sorry but I’ve just been through radiation treatment for cancer 6 weeks ago.  I don’t want to expose myself to any more radiation.  Here’s a letter from my doctor.  But I’m happy to be searched if you need to.”

She overtalks me: “It’s not radiation, it’s radio waves.  It’s perfectly fine.  You’ll be exposed to more radiation in the airplane than here anyway.”

“I just don’t want any more unnecessary radiation.  I’d prefer to be patted down and searched.”

“It’s fine.” she says definitively. “There’s no radiation.”

Conscious that people are now starting to mill about, I step up to the chamber.

“Follow the instructions for the body positions, don’t move until it tells you to leave.”

I wait for the light, and then step inside the chamber, holding my hands above my head.  The outer arc of the machine circles around me, and suddenly my body starts to shake.  My mind lurches back to the SPECT machine I was strapped into prior to being discharged from hospital, following my radiation treatment.  The doctor’s initial scan – which should have been a run of the mill confirmation that my treatment had worked – instead showed an unexpected result, requiring me to undergo the 45-minute scan all over again.  Fearing the worst, it was a tense wait as the gamma camera circled my body in a similar pattern to the way this airport machine was doing now.  I feel tears stinging my eyes.  I’m out of control.

I gather my belongings and try to stop the tears, but I’m completely confused about what’s happening and why.  I’ve finished my treatment!  I’m getting back to normal life: heading away to visit friends for a week, to enjoy some R&R.  What the hell are these fragmented thoughts and feelings doing running through me with reckless abandon, bringing chaos and destruction?  It’s a wild, visceral response radiating from the centre of my cells, and surging through me.  And I have no idea what to do about it.

It was my first encounter with the Ghosts of Cancer.

• • •

Detecting

The Ghosts of Cancer are invisible to the naked eye, save for unusual physical reactions, snappy comebacks, breakdowns or even full-on explosions from the person they are visiting.  They can arrive in predictable situations, such as a blood test or check up, but they can also appear in strange and seemingly unrelated situations, like going on holidays.  And once you’ve seen them, you can’t unsee them.  The Ghosts draw back the thin veil between normal life and other, and you are forever aware how fine a line our perception walks.

I can look at that experience now and understand how the parallels between the two situations triggered the Ghosts: I was forced into a situation that I didn’t happily consent to, and my attempts to be my own advocate were overruled. I didn’t have a say over what was happening to my body, and then of course the final trigger was the visual similarity of the airport scan and the hospital scan. But at the time, my reaction was far deeper than my rational mind could understand, and I had no framework for it.

When Mum went through her second cancer diagnosis, there were many phone calls between our family with informational updates, often with bad news.  Two of the worst came when I was standing in the Lingerie department of a local store.  These calls came a week apart, but for some reason I was standing in the exact same place on the planet each time I received them.  As a result, for a few years following, I would see the Ghosts of Cancer whenever I walked into that store.

I’m now more prepared for their arrival, which at times serves to stop them bothering to come altogether, but they’re still inconsiderate and unpredictable.  Last month, I went for my 2-year checkups; blood tests and a neck ultrasound.  I was prepared for a few wobbly moments.  But it was pretty smooth sailing: I didn’t feel the need to bring anyone in with me, I didn’t have a sense of dread going into my appointments, and even became so engrossed in a conversation with the radiographer about Antarctic photography that I barely remembered to ask for the results… which were all clear!  YES!!!  And on these kind of days, I congratulate myself and feel like I’m doing pretty well at this whole “put things in perspective/focus on the positives/live in the moment/get back to normal/the world is your oyster/that was merely a blip” playbook and eat some cheesecake.

But then there are the other days: the ones that, without warning, grab me by the neck as a tornado of thoughts, memories, fears and imagined outcomes whip through my being with such powerful force I’m not even aware that something is going on until my breath is tight, my body is quivering and tears are threatening to spill down my face.

By the time I realise what’s happening, the train has already left the station and I’m caught stranded between the carriages.

It happened this week.  I went in for an ultrasound on my wrist which has been hurting for the best part of a year.  It’s been on and off: stiffness, reduced mobility but more recently waking me in the middle of the night with searing pain.  So I decided to get it checked out, and thought most likely a ganglion cyst (i.e. benign).  But then a funny thing happened.  And by funny, I mean terrifying.  I was sitting on the bed in the examination room, the sonographer running the ultrasound wand across the gel on my wrist as I absentmindedly watched the pictures forming on the monitor.  I still don’t know how anyone manages to discern anything from those grey, grainy images – what’s blood versus bone/muscle/ligament?  And then I see a small, dark oval-shaped blob appear on the screen.  He slows the wand, clicks a few buttons, and positions some screen cursors around the blob. He’s measuring it.

And that’s all I need.  I’m off.  I stare through the screen as in my mind’s eye I receive the news they’ve found a secondary cancer, chemo is required, I will lose my hair and need to put any plans for the future on hold indefinitely.  Cancer is about to become the star of the show.

And then I catch myself.  I realise that I’ve stopped listening, I’ve left the present moment and am currently floating somewhere outside of the room in a parallel universe, and I try to pull myself back to my body and my breath.  I’m startled by how quickly and violently my thoughts have spiralled.  The Ghosts have turned up, unannounced, and I’m unprepared.  I did not see this coming.  The sonographer leaves the room to check the pictures with the doctor, and I take the opportunity to remind myself that it’s probably a ganglion, and this is a good thing. In fact, it backs up what I said to my physio: “a sense of congestion in my wrist, like something’s in there stopping me from moving it fully.”  My sense was right.  There is something there.  And it can easily be dealt with.

But it’s too late.  My skin has become paper thin, as if threaded with thousands of tiny hairs standing to attention, ready to detect even a whisper of a breeze to trigger all systems into “GO!”.  And then I’m stuck.  Stuck between giving voice to this fear, or pushing it as far down as I can into my body so that I can get through this moment.  I opt for the latter, but I know myself well enough to know that I need to release this energy in safety as soon as possible.  And for me, that’s inside my car in the hospital carpark.

• • •

A Trick of the Light

I’ve got to say I would generally describe myself as a positive person.  Or more specifically, a positive person with a genetic dash of Celtic melancholy.  Someone who feels emotions deeply – both mine and others.  I think it’s part of the reason I studied psychology, became an actor, worked with children and have always felt moved to help and support other people.  But when the Ghosts of Cancer come rattling their chains, when they reawaken the pain, the fears, the memories and worries for the future, it’s truly haunting.  On some level, I know it’s anxiety speaking.  My rational brain is working hard to apply logic and statistics to the situation, to try to bring me back to an even keel.  But my body and emotions have a louder voice, at once speaking the reality of my past, but also somehow claiming my as-yet unlived future.

At drama school, they told us that our bodies don’t know the difference between reality and fantasy – the idea being that if we create vivid enough imagined circumstances for a scene, our bodies will follow suit and commit to this truth.  And it’s a pretty effective technique!  But not one to be taken lightly, and in these ghostly visitations I see how reality and imagined reality can merge into an awful landscape.  The thing is, how do you discern what are the ghosts (imagined realities), and what are the intuitive nudges that should be followed?

Cos here’s the kicker:

If I hadn’t followed my intuition, I could have died.

Fear served a purpose.  If I’d listened to the people who told me (tick all that are appropriate):

it’s all going to be fine
we don’t need to test again
☑ just think positive
you’re worrying too much
you’re very sensitive (ie. too sensitive)

where would I be now?

Obviously, I did think positive, I did take it one step at a time, and I did question my own reactions.  For four years.  And yes, I am very sensitive.  But maybe it was the same sensitivity that told me something wasn’t right.  The truth is that if I’d continued to allow doctors and well-meaners and shh-shhhers to squash my concerns, the outcome could have been so much worse.  I’ve lived through my cancer, and I’ve born witness to my mum’s cancer… twice.  In each case, it was because we refused to be silenced that we got the correct diagnoses and treatment.  We proved the doctors wrong, three times between us.  What are the odds?  I mean, for me it was a 5% chance of cancer, for heaven’s sake! Well when you’ve been in that 5%, the odds don’t mean so much any more.

Some people don’t understand the Ghosts too well.  They look at you like you’re crazy, or they’ve heard it all before, or they wish you’d just get over it.  For both your sakes.  Plus of course, there’s the shame.  Especially when your physical scars have healed, you didn’t really take that much time off work, and your check-ups are clear.  What are you still worrying about?  The thing is, when we’re visited by these Ghosts of Cancer – whether it is from our own experience of cancer, or witnessing that of a loved one – we can’t always just kick them out.

The best way I can describe it, is this: remember when you were a kid lying in your bed at night, convinced the shadows were boogiemen or monsters were under your bed?  Did you yell for a grown up to come in and turn on the light or check under your bed?  And even when you saw it was just your dressing down hanging on the back of your door, or your teddy bear’s eyes glinting in the moonlight, it took you some time to settle back down?  Well, it’s like that.  Even more so when you’ve lived through an experience of actually finding your concerns were well-founded.

When the fear surfaces, I have an instinct to seek someone to voice this fear to – because I intuitively know that, like the monsters under the bed, shining a light on the darkness helps me see it for what it is, feel it, release it and then move through it.  It doesn’t always work straight away, but it does help me gain more strength to regroup and face the next day.  And it’s most effective when I don’t do try to do this by myself, using the same thinking that got me into this state in the first place.

I don’t need you to tell me it’s not real.  I need you to tell me I am real.

You know all those inspirational, galvanising thoughts about cancer teaching us how fragile life is, how life’s too short, how there are no guarantees?  They possess a shadow life, too: these ghosts remind us that life is fragile, that it can change in a moment and that there are absolutely no guarantees.  What can enliven us can also haunt us.

• • •

Ghost-Busting

So 24 hours later I’m in the doctor’s surgery, and the results come in: it looks like a benign ganglion cyst.  Good news!  And it’s then I dissolve into tears and into what I call a grovelpology: a gushing waterfall of half—finished explanations and justifications for my tears:

“I’m sorry, I was just worried… when I saw the black shape on the screen, I flashed back to… it’s very hard now, any time something unusual happens, I think… I’m relieved really – sorry, I don’t mean to – sorry.”

“This isn’t mental illness” my GP says, “It’s completely understandable given what’s happened to you. The more time that passes, the easier it will get. You just need lots of reassurance, take things slowly and carefully, and check things out.”

She looks kindly at me, and I instinctively place my hand on my heart, and inhale her words. They are like a balm to my red, raw, paper thin skin.  Just like that, I feel the Ghosts vanish.  The armour of tiny hairs begin to settle.

And this is how friends, loved one and health professionals can help. Not by encouraging us to bandaid it, but by validating that in experiencing what we have, it’s natural for us to have thoughts and feelings like this sometimes.  Please meet us where we are.  It’s okay.  It is, after all, just a thought.  Just a feeling.  Just passing through.  Please be patient.  Give us room to have these feelings.  Understand that although we know cancer does not define us, the experiences of cancer – like it or not – do inform some part of us, our history, our scars, our frailties and our strengths.  Love is important. Kindness is important.  Hand-holding and cuddling are hugely important.  Well-timed jokes can be excellent.  Making a beautiful cup of tea is one of my favourites.  But listening without judgement or rushing to fix: that’s the alchemical gold.

Cos here’s the thing: we will get through this.  We will return to the light.  We will remember that the Ghosts are just that.  But in my experience, trying to shut them out or ignore them only delays the inevitable and in many situations, makes it worse.  I believe by facing them, seeing them for what they are, releasing the emotions and then coming back to the present moment I can emerge from the tunnel a little clearer and stronger. But it is a practise.  And I never know when I will be called on to perform.

I understand that to live life means to coexist with some ambiguity and grey area.  I am more at ease with this on some days than others.  And I do believe that, as my GP said, in time the ghosts’ visits will become less and less frequent – in fact, they already are.  I am hugely grateful and comforted by this.  In the meantime, I will continue to grapple with uncertainty but find safety, comfort and support where I can.  And if that means asking for an extra check up, sticking a needle in a lump, having someone hold my hand, or help me shine a light on them, then I will.

After all, ghosts are said to be lost souls, looking for the light. Aren’t we all?

Life’s too short … wear the red shoes,

Emma


PS. Have you had an experience with the Ghosts of Cancer?  Please share in the comments below.

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