M is for ‘Mental Health’

noun
  1. a person’s condition with regard to their psychological and emotional well-being.

When would be a really inopportune moment to discover you’d developed an overwhelming fear of heights?  About 5 minutes after you’ve started walking across San Francisco’s Golden Gate Bridge, that’s when.  The terror slammed into me as hard as the wind blasting through the narrow strait connecting San Francisco Bay to the Pacific.  And in the brain fog of panic that followed I didn’t have the ability to interrogate why this phobia had emerged just then.  I was too busy trying to move as fast as I could across the remaining 2.5 miles of bridge.  It was only later that I pieced together the clues and realised there was only one thing to blame.  Cancer.

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While you’re going through the manic maelstrom that is cancer treatment, awash with hospital appointments where you’re endlessly poked, prodded and asked to get your intimate anatomy out for doctors to gawp at, the goal, the light at the end of the tunnel, is always the end of that treatment.  Just keep going, you pep-talk yourself, just get through that next appointment and it’ll all be over, it’ll all be back to normal.  And yes, the end of treatment, for those BC women who are lucky enough to be told they are NED (no evidence of disease) is a massive relief.  But it also has a price.

The ‘safety net’ of those medical check-ups and regular contact with supportive, understanding medical staff is removed.  After months of haunting hospital corridors and waiting rooms you are gently nudged out of the door, told ‘it’s all over, you can go now’ and find yourself facing the world all on your own.  The world is the same as it’s always been.  But you are different.  The woman who first heard those words ‘I’m afraid you’ve got cancer’ has gone.  There’s a new you now and a ‘new normal’ ahead, but precious little support to help you navigate this new life.

Side bar – This Sara Bareilles song from ‘Waitress’ became my cancer anthem.  It’s a love song to the person you used to be before a life-changing event, the old you.  It’s beautiful.  And heartbreaking.

It’s a common theme on cancer support groups that the time after treatment has finished can be the scariest time of all.  Without the distraction of all those appointments, tests and interventions, the reality of what you’ve just endured hits you like a tonne of bricks.  For months you’ve kept at bay the tsunami of emotions broiling away inside you with a ‘I need to hold it together to get through treatment’ attitude, but with therapy finished, that tsunami returns to the shores of your psyche in one mighty rush.  But this is only your reality.  For those around you, your loved ones, family and friends, the relief that ‘it’s all over now’ is so monumental, the desire to get back to a normal, non-cancery life so keen that it’s easy to file cancer away as done and dusted.  And that desire amongst those who supported you through treatment is understandable.  But for the cancer survivor, there is  blankness after treatment, a void that floods with a rush of overwhelming emotions.  You are alone with your thoughts.  And those thoughts can run amok.  It’s no surprise that in the months and years that follow cancer treatment, countless survivors face difficulties with their mental health – low moods, depression, anxiety, panic attacks etc.  Cancer, the gift that keeps on giving.

For me, the first hint that something was not quite right appeared on a tube station platform.  It was about 2 months after my DIEP surgery and although I was still recovering physically I was back to happily pootling about at home and out in London.  On this particular day I’d been on a long rambling walk round London with a friend as we enjoyed a mobile treasure hunt (I’m an escape room and puzzling addict) that took us through the teeming streets of the City, finding little nooks and crannies of London history I’d never explored before.  It was a great afternoon.  Lots of walking, history, laughter and cups of tea.  We ended the amble close to Bank tube station, ideal for getting home.  It was rush hour but I’ve lived and worked in London all my life so I was very well acquainted with busy, peak time commuting.  Usually head down, headphones on, book in hand was enough to ward off the horrors of crushed tube carriages.  But on this afternoon, as I was swept along in the waves of people heading down the escalators, I started to feel a bit … off.  I was tired and a bit light-headed as I reached the platform.  It was crammed with hordes of commuters and I looked about for a seat where I could perch until the crush lightened a bit.  But there were no seats.  And there were delays on the line so trains were slow to arrive, while even more commuters elbowed their way onto the already over-crowded platform.  Suddenly I was finding it hard to breathe, to get a proper lungful of air.  I felt dizzy and clammy and sick.  I felt like I was going to pass out.  And being a true Brit the idea of doing something that embarrassing in such a public space was horrifying.  So I pushed my way out of Bank station (why is that station so fucking massive?) and resurfaced on the street, sucking down air like it was going out of fashion.  Within minutes the panic had passed, but I still opted to bus it all the way home rather than return to the subterranean terrors of the tube.

And at home, it was easy to dismiss what had happened as a one-off.  It had been a long day.  I had walked miles.  I was still recovering from major surgery only 8 weeks before.  I was tired and my blood sugars were probably low.  And everyone knows that Bank station at rush hour is a nightmare.  It was all totally understandable and explainable and I pushed it far away to the back of my mind as something I didn’t have to interrogate or challenge.

But then the Golden Gate Bridge happened.  I have never had a fear of heights.  Bit of a running joke in my family that every holiday needs to involve me climbing at least one tower, church steeple, lighthouse or similar.  I’ve always loved getting a panoramic view of a new city I’m exploring from the top of something very tall indeed.  So I was excited about  the Golden Gate Bridge.  A 25 minute walk across an iconic landmark.  A bucket list moment.  And the first few minutes were fine.  Busy taking snaps of the red painted girders and the view back to SF, Alcatraz in the distance, I was enjoying myself.  But then the high netting at the end of the bridge dropped away and the only barrier to the strait below was a waist high metal fence.  It was then my brain started to go into overdrive.

Because what scared me wasn’t your typical ‘oh my god, look at how high we are, that’s a really long way down’ acrophobia (which is the proper name for fear of heights, dontcha  know.  Not vertigo).  It was that my brain had got stuck in a permanent feedback loop of wondering ‘what would happen if I jumped?’.  To make it entirely clear, I wasn’t then and have never been suicidal.  I was happily on holiday, enjoying touring the West coast US, hitting some sights that had long been on my ‘to see’ list, feeling free and happy and healthy.  But some part of my brain had other ideas. And decided to fuck with me.  So I ended up taking the most terrifying 25 minute walk of my life.  Not only was a little voice in my head repeatedly asking the ‘what would happen if I jumped?’ question, but another squeak of paranoia joined in to ask ‘does this mean you’re going mad?’  These thoughts ran in parallel, repetitive tracks all the way across that ridiculously long bridge (2.7 miles feels like a marathon when you’re brain is fucking with you.  I mean seriously, who needs a bridge THAT long) but as soon as I stepped off onto solid ground again, they evaporated.  I was released from the terrifying soundtrack and it was like absolutely nothing had happened.  So, as with the tube station panic, I dismissed it as a one-off incident.  Easy to do when you have the delights of San Francisco, and then Las Vegas, laid out in front of you.

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London City skyline from Waterloo Bridge (by me)

But back at home, taking one of my favourite walks from Soho down through Covent Garden then across Waterloo Bridge to the South Bank, those horrible, weird, unsettling thoughts returned.  I’ve walked across Waterloo Bridge a zillion times.  Its panoramic views of my beloved London never cease to thrill me, to make me feel warm and fuzzy about the city I call home.  For that to turn into a hideous 5 minute head down, barge tourists out of the way speedwalk haunted by the repetitive ‘what would happen if I jumped?’ was soul-destroying.  One of life’s small, simple, free pleasures had become a minefield.  So I googled.  Surely this new way of thinking had an explanation.  And it did.  Turns out I’m not suicidal or a freak with no control over my brain function.  Turns out that there’s something called ‘High Place Phenomenon’ or ‘the Call of the Void’, which when standing in a high position leads to the sudden appearance of the ‘what would happen if I jumped’ thought.  It’s not connected in anyway with suicidal ideation but is down, in part, to the way your brain is wired to send out survival (‘get away from the edge you fool of a woman!’) signals.  And it’s also connected to, you guessed it, anxiety and fear of anxiety symptoms.  There’s a couple of interesting articles about the phenomenon here  and here.  Apparently Winston Churchill suffered from it and refused to travel by boat in case he had the urge to hurl himself into the water.

So Dr Google taught me that I wasn’t going insane.  Sure, now crowded tubes AND bridges were making me nervous but I could avoid rush hour and as I don’t live in Venice or Amsterdam bridge-avoidance wasn’t going to have a major impact on my life, I reasoned.  But then anxiety decided to take down another victim.  One of the great pleasures of my life.  Theatre-going.

It struck one evening, in the middle of the first half of a play I’d been looking forward to seeing for months (‘Rosmerholme’ with the delicious Tom Burke and the brilliant Hayley Atwell).  Our seats were in the middle of a row, close to the front.  We were in spitting distance of the actors.  It was a quiet, intimate piece, lots of pregnant pauses and silences.  And from nowhere, the thought popped into my brain ‘what if I swore or shouted something during a quiet moment?’  As before, on the Golden Gate, I had zero intention of doing either.  But once the thought had taken seed, it started to grow and became relentlessly repetitive.  And I started to panic.  I found it hard to breath, I was clammy and fidgety.  And as I was in the middle of a row close to the stage I knew that if I tried to leave now I’d disturb both the audience and the cast, ironically drawing attention to myself while trying to escape a situation in which I might draw attention to myself.  The rest of the first half was an agony and in the interval I made a hurried and pathetic excuse to my friend that I could feel a migraine coming on.  I dashed out of the theatre and before I’d hit the tube station I was free of anxiety, but full of self-loathing, crying and kicking myself for being a freakish idiot who can’t even control her own brain long enough to sit through some Ibsen.

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Gratuitous photo of Tom Burke being sexy

So now my list of anxiety-inducing situations includes crowded places, bridges and/or high places and theatres.  I was getting weirder and weirder.  I now had to book theatre tickets at the end of a row so I felt secure in my ability to exit discreetly if needed and small things (like being told I couldn’t take a water bottle into the 02 for a show) could send me into a rapid anxiety meltdown.  This was not the life I wanted, it was not the promised land of the post-cancer ‘normal’, where I frolicked in healthy abandon, carpe-ing every diem, free from worries.

I still don’t know exactly why my anxiety takes the form it does – that strange obsessional, repetitive, situation-dependent thinking about things that are unlikely to happen.  But the theory behind High Place Phenomenon and other OCD-like ways of thinking is that they are the result of the brain working too hard to detect possible threats.  Our system’s inbuilt sense of danger round certain situations (heights, humiliation) is triggered but the brain misinterprets that warning as an indication that something dangerous was planned, so we start to think that we intended to jump/swear when really our brain was just warning us to be careful.  The ‘watch out, danger here’ message is misread as ‘I must have wanted to jump’ and becomes a repetitive, anxiety-laden loop.

It can’t be a coincidence that my brain is working overtime on detecting threats after my cancer diagnosis and treatment.  Once you’re told you have cancer, you are suddenly on high alert for any warning signs about your health, for signals that something is wrong.  Even once you’ve been given the all clear, the fear of recurrence or secondary cancer is ever present and every little ache, pain, itch or bump becomes a possible signifier of more disease, of the return of the thing that you dread.  Post-cancer life can feel deeply unsettled and lacking security. It’s hard to trust your body or brain after it’s already betrayed you by giving you a potentially life-limiting illness.

And I think that lack of security, lack of trust is where my anxiety stems from.  I mean if my body can do something so damned fucking stupid as make cancer cells then how can I trust it not do something equally as stupid as, oh I don’t know, jump off the Golden Gate bridge or yell out “fuck” while seated in a hushed theatre.  In my rational brain I know that these things are unlikely.  These are not things I want to do.  But my irrational brain also likes to remind me that I was statistically unlikely to get breast cancer (1 in 8 women do) and yet I fell foul of that statistic, so yeah, anything is entirely fucking possible.

After cancer, the world itself can feel less safe.  Particularly for those who endure chemo, the outside world, with all the possible infections that it contains (especially mid-Covid-19) seems like a dangerous place with lurking, hidden threats.  Streets full of rushing, distracted people, felt, to me, like a collision into my still sore, post-op body just waiting to happen.  It was easier to safely cocoon myself at home, inside the secure bubble I’d built away from rushing commuters and the judgy stares as I hyperventilated on a tube platform.  While I wanted ‘normal’ back, with all the commuting, dinners out, theatre visits, that promised, the world beyond my front door was still somewhere I needed to be on high alert.  No wonder that my brain fired up into overdrive when I pushed my body to dangerous heights or crammed it into packed spaces.

Cancer is a brutal disease.  It destroys your body, leaving you scarred and unrecognisable, and hacks away at your self-confidence.  I felt, still feel, diminished and vulnerable.  My attempts to restart certain aspects of the pre-cancer life that I loved, travel, theatre, London, resulted in anxiety attacks that shook me to the core.  And those anxiety attacks made me more anxious about going out to do those things that I love, producing a self-fulfilling prophetic circle of fear and uncertainty.  The Covid lockdown has put much of that life on hold anyway, so my anxiety has receded for now but I can feel it’s still there, lurking in the dark recesses of my mind, waiting for an opportunity to resurface.  My self-confidence lies battered and broken, I feel exposed and dumb, unsuited to the rigours of modern life.  Low mood and anxiety have driven me into depression, marked by fatigue, loss of appetite, feeling incapable of adulting.  In a way the Covid lockdown has been a blessing, a putting-off of real life.  I am a post-cancer work in progress.  Counselling, a safe space to discuss my fears and anxieties has helped, but has also been limited first by funding and then by Covid restrictions.  I think I have to accept that cancer took a big chunk out of me and I might be tending to the wound it left for a long time to come.

So please bear with us.  Me.  Anyone you know who has had cancer.  Our bodies might be cancer-free but our psyche still bears it’s imprint.  It’s not as simple as ‘come on, time to move on’ or ‘that’s history, forget about it’.  Cancer can do damage that only emerges when it’s officially ‘all over’. That damage can penetrate your thoughts with intrusive and unwelcome interruptions that feel alien and disturbing.  It can surface even when you’re happiest.  It can raise its head in the sunshine of a golden San Franciscan day or in the hushed gloom of a West End theatre.  It can be terrifying.  I have to hope it can also be overcome.

 

 

If you want to understand more about the psychological challenges cancer survivors face, this article by a clinical psychologist offers some great insights.  

If you’re having a difficult time and need to talk to someone, you can contact the Samaritans on 116 123 or online here

2 thoughts on “M is for ‘Mental Health’

  1. Karen, I’ve read your whole blog over the last couple of days. It is honest, informative, relatable, funny and moving. This will help, and resonate with, so many women going through a breast cancer diagnosis. Wish I started reading this months ago. Your final paragraph in this blog is something I may borrow from time to time. You are an inspiration xxx

    Like

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