Have you
ever been to that dismal place of deep, dark desperation? The place where you
think, ‘I cannot do this anymore. I
cannot go on. Don’t make me go on. Make it stop.’
Most of us
have, I suspect, been there. Or been somewhere on the path to that godforsaken place
at some point. It is a bleak and isolating experience where you can no longer
see the light, and perhaps you don’t even want to.
If you
haven’t been there, then lucky you. Unfortunately, at some point in our lives
most of us will experience that rug-pulled-out-from-under-you,
wind-punched-from-lungs anguish that
accompanies every variety of life challenge from relationship breakdown to
loss, from health issues, to genuine physical and mental pain.
The
question is, what pulls you back from the proverbial edge? What enables you to
carry on, to fight back, to build up from that dismal pit? What enables you to
do this again…and again…and again.
I will tell
you now that there is no one answer to the question I have posed. The answer
will vary from person to person and from day to day. For I have been to that
dark place several times in this last year, several in fact in this last week
stuck in hospital with a further excruciatingly painful bowel obstruction.
The irony
the timing of this incident is not lost on me. The cruelty of this latest
episode has been felt far more keenly by virtue of its juxtaposition against a
period of relative calm and joy. After the misery of surgery and months of chemotherapy,
it genuinely felt like my world was opening up; for travel, to see friends, to
get back to work, to climb mountains even (more about Snowden in my next blog). Then last Thursday after a
surprisingly magical day filled with unusually well-behaved children and a girly supper
that culminated in dancing around the kitchen table, it folded in again without
warning. Collapsing spectacularly into writhing, gut-wrenching agony which no
standard painkiller could touch. (Believe me, I tried)
I put on my
brave game-face for long enough to outsource my childcare to my wonderfully
supportive nursery, drive myself to A&E and throw myself at the mercy of
the NHS. It was as I suspected. Another bowel obstruction. I knew and feared
the road ahead. Days of Nil by Mouth (NBM) and zero calories. A regimen which
leaves you weak and frail. This accompanied by the institutional trappings and
routines of the NHS; endless cannulas, saline drips, the wards rounds of drugs
that bring relief (and occasionally morphine induced and welcome oblivion), the
dreaded nasogastric (NG) tube…and the incessant vomiting.
Despite
having been here before I had forgotten the pain, my memory had erased it. Pain
in which there is no world beyond the torment of your own body. All-consuming.
Exhausting. Seemingly unending. In the grip of such agony, there is no light
and no hope.
Unlike
childbirth, in which the gap between contractions brings intermittent relief,
and wherein the prize at the end is great indeed, this pain has no silver lining,
no reprieve. It was at times relentless. Pain can also shapeshift and morph; gain
control of the lower abdominal spasms and then the back ache become acute.
Resolve the stabbing back pain and perpetual nausea ensues.
It is a
game of cat and mouse, firefighting to control the pain rather than fix the
root cause of the problem. As a rationale pain-free person I would suggest
focusing on the root cause. Obviously. But as a patient who has literally
counted down twenty minutes, broken in seconds and half seconds before being
allowed my next IV pain-quelling fix, I say ‘focus on the pain.’
At its
worst, having literally performed the counting exercise above for just over two
hours, alone in a fabric cubicle, sat on the edge of a bed rocking silently
forward and back with a sick bowl in hand, belching foul air every few minutes
whilst the joyous cacophony of visiting hour floats over the curtains, I can
tell you it is a low and humbling place. I cried. I prayed. I would have done
almost anything for the pain and nausea to stop. I had already thrown up litres
of dark, murky, bilious liquid that day. Yet every few hours it would accrue,
reach a certain level and pour out of me.
I am
conscious that many endure more and worse than the above, but on the fifth day,
at the point when my body and mind was exhausted by sleeplessness, lack of
calories and by the pain itself, this was my rock bottom. I could not see an
end in sight, not even a glimmer of light. As someone who (in sound mind and
health) is of the ‘pick-yourself-up-and-try-again’
school of thought, being in and being reminded of that horrible, faithless
place is tough to stomach.
Yet I
digress. My original query was about the things that get you through the pain
when medicine fails. When it is dark and you cannot see the light you often
need an external influence to jolt you back to belief, or to show you the
flicker of hope that you cannot yet see.
Simply
counting down the clock and knowing each half second was a half second closer
to experiencing less pain was a helpful tactic, but it doesn’t bring the light
like the comfort others can offer.
During this
particular stay certain things made the difference between despair and hope. Of
course I found it helped physically having someone there with me. To smile, to hold
my hand, maybe to rub my back, but mostly just to be there and remind me ‘this is not the end.’
But in
hospital there are many hours in which you are, by necessity, alone.
Fortunately, my amazing daughter as I staggered out the house that fateful
Friday with a hospital bag, handed me two items; a necklace of plastic,
glittery beads that she had hand-strung with love the day before, and a garish,
plush frog called Smoochy, in case I got lonely. I can’t tell you how much
those items helped me. Smoochy, in particular. Omnipresent reminders of my
family and my children. Reasons to drag myself off the floor and keep fighting.
Reasons to get through just another minute, and then another, and then another.
Of course,
my family and friends have, as ever, rallied to support me through visits and
messages, virtual and real, photos of sunrises, hugs, etc. Those little
messages, each one perhaps insignificant to the sender was a sign to me that
the outside world cared. Each message served as a reminder to breathe deeply, a nudge to believe that
this pain would pass, that I would get better and that I would get beyond this.
 |
| @pswecreate Sam Pooley-Stride |
Two ‘messages,’
in particular, stick in my mind.
The first involved a stunning, glorious,
life-enhancing painting created by a talented friend and artist, Sam Pooley-Stride @pswecreate,
which reminded me of a tower of strength, the strength that family members
offer to one another to reach great heights. At the time of receiving it I had
no strength left, but as I stared at it I realised that very few things are
strong all the time. Much like Jenga bricks, towers can be destabilised, toppled
and yet rebuilt. That inspirational image helped motivate me to think beyond
the pain to the future. A future in which I regain my balance and equilibrium
and become part of that strong family unit again.
Another photo
sent by a friend was of a whimsical trinket that proclaims ‘when it rains looks for rainbows, when it’s
dark look for stars.’ In my windowless ward there was a dark humour to this
that drew a wry smile and provoked me to locate a rainbow photo on my phone, taken
from my kitchen window weeks before.
Then finally one morning I woke up
and the ordeal was over. The day in which I could finally say yes to the
question ‘When are you coming home Mummy?’
Magically it was the day of my daughter’s fourth birthday and the professionals
consented to my release.
So now I am home. Weak,
institutionalised and chastened, but home. It takes time to heal from hospital
stays. Circadian rhythms disrupted by the routines of life on the ward;
continuous cycles of hot drinks, washing, meals, clinicians, medications, more
drinks and meals and medications, lights never off, silence non-existent. It is
hard to be in there, and just as hard to leave and re-adapt to the world
outside.
I have repeatedly asked what I can do
to avoid this happening again, but beyond the obvious tips like stay hydrated,
eat well, avoid stress (which I thought I was doing), there is no specific fault
that lies at my door. It can simply be down to anatomy and scar tissue.
The thought that this could happen
again is terrifying. The thought that it could be next week, next month, next
year. This is along with the unmentionable threat of cancer reoccurrence, but
let us not dwell on that.
You should know that many of you
reading are those external influences that helped pull me back from the darkness
of despair. In pain, I rarely have the capacity to reply or respond to
messages, but those little snippets of love and concern were received with
immense gratitude, and collectively they built the ladder to allow me to claim
out of my pit.
At times, often through no fault of
our own, we all need those external influences to remind us that we matter. In
deep darkness, it can be tempting to lock oneself in and shut everything out.
Yet this is foolish. Those little drops of care and concern are the tiny specks
of light that alone seem in significant, yet together they can turn a dark
night into a starry sky, and thence to a sunrise and the daylight beyond.
As someone who has, once again, felt
deeply humbled by the human compassion and warmth with which I have been guided
back to health and light, I encourage everyone to consider two things today.
Firstly, think of someone who might be cheered by a little light in their lives
and take a small action to deliver it, a message, a phone call, anything. And
if, woefully, you are in that other, darker place, dare to open yourself up to
those who seek to help, it’s not easy, but remember that each tiny chink of
light that you let in is a step towards a brighter tomorrow.
(For those interested...this is Smoochy, the adorable frog who kept me company on lonely hospital nights)
