ON St Valentine's Day 2006, I was
formally diagnosed with non-Hodgkin's lymphoma, a cancer of the
lymphatic system. I was 42. Six months later, I was told that my
treatment had been successful. I have now been in remission for
nearly six years, but I go once a year for a check-up.
The diagnosis, when it came, was a
shock, but not a surprise. I had woken up on New Year's Day feeling
very sore down my right-hand side. I thought that I had slept in a
draught. You can imagine the level of sympathy I enjoyed that
morning as I searched the house for pain-killers. My protestations
of having behaved sensibly on New Year's Eve fell on deaf ears.
The pain grew worse. I spent the
evening in A&E, having tests. These proved inconclusive - a
verdict that persisted through two spells in hospital - until, much
later, my tumour was found, and identified as malignant. My GP told
me that it was "lucky" that it had been growing in an area full of
nerve endings, otherwise they might not have found it so swiftly.
This made me wonder what a slow diagnosis might look like.
I suspect that everyone who has been
diagnosed with cancer has a similar story to tell, in that it
involves many tests, many false starts, and hours of fruitless
phone calls to friends and relatives, giving descriptions of events
that are beyond imagination.
I HAD two diagnoses. The second and
more formal one was in an office, with tissues and a computer
screen. The first came in a phone call, late on a Friday afternoon.
I was at home, having just picked up one of my children from
school. I had been promised a result from my biopsy a week earlier,
and, having heard nothing, decided to ask if there was any news.
The doctor was brief and to the point, merely confirming that it
was what they had suspected: lymphoma.
A great numbness came over me.
Outside, normal things were continuing to go on without me: a car
being parked, a mother pushing a buggy with a toddler in tow.
My first thoughts were not about
dying, or heaven. I was much more exercised about keeping control
of the news for as long as possible. My daughter was away on a
school trip, taking our only mobile phone, and I did not want her
receiving sympathetic texts from relatives when we had not told
her, face to face. I tried to continue reading the newspaper I had
put down, but couldn't. It was the last concentrated reading I was
to do for months.
I GREW up going to church and hearing
prayers said for people who were ill. Some of them recovered; some
did not. I did not have a very advanced theological understanding
of why this was the case.
What I especially noticed about the
prayers that were said for me was the level of expectation that I
would get better: this was new to me. In truth, I kept my own
expectations fairly low, more around being able to cope with
whatever the consequences might be.
By the time I discovered the precise
details of my disease, various members of my church had prayed for
me, both at church gatherings and in our home. These interventions
were mostly handled with great care and kindness.
Only on one occasion was the
experience jarring. I was asked, about 30 seconds before a
gathering was due to start if we could be prayed for as a family. I
felt that I had no choice; so I acquiesced - to the annoyance of my
children, in particular. It was especially difficult for them, as
in the prayers they were simply referred to as "the children".
If I were to relapse tomorrow, I would
choose to be prayed for again, but I would take greater care to
ensure that it was always on my own terms.
ON THE whole, I would advise that
praying for cancer patients should not include berating God with
comments such as "It's not fair." I would also point out that we do
not want to be told that what is occurring in our bodies is "for
the best", or "part of God's plan". The best prayers I had were
real - they named my children, and my wife, and itemised the daily
issues we faced, such as sleeping and eating.
The best counsel I received on this
subject came from a retired clergy friend of mine, who described
his own experience of serious illness. He had been told by a friend
that he should not have to work at prayer while he was ill. "We
don't call it a church family for nothing," he had said. "That's
what the rest of us are for. Let us take up that burden for you."
This became a touchstone for me.
As my treatment began in earnest, a
friend organised a list of round-the-clock prayer for me. This was
presented in the form of a scrapbook, the pages of which were
covered in Post-it notes, each one a commitment to pray for me at a
particular time of day. As I turned the pages, I could chart the
progress of each day, as the notes changed from "While I'm brushing
my teeth", and "Walking the dog", to "Pouring myself a gin &
tonic", and "Kissing the children goodnight".
My prayers, such as they were,
followed the template offered by Anne Lamott in her memoir
Travelling Mercies. She says that the most profound
prayers of all are: "Help me! Help me! Help me!", and "Thank you!
Thank you! Thank you!" Released from working hard at getting
better, I felt I was no longer alone.
EVER sensitive to how I might be using
my illness for my work as a poet, my friends frequently asked me
whether I was able to "get any poems out of it". The answer was a
flat "No." I find that I can write poetry well only when I am
reading well. Along with most of my immune system, my ability to
concentrate on little more than the sports pages was removed by
chemotherapy.
But I was able to keep a journal of
events as they occurred. I felt I owed myself that, as a debt of
honour. The results of this are now published in a memoir, Love
for Now.
One of the more ironic events during
my treatment was the publication of my third book of poems,
Full Stretch. Not only was I unable to promote the book: I
now found, just when I most wanted to, that I had no poems to
write. I was a poet in name only, and I prayed that poems would one
day return.
Already alert to the potential for
poetry in the everyday, I became increasingly sensitised to the
language that others used to describe the disease. I became
especially interested in the use of war metaphors to describe
cancer.
I had never noticed it before, but
each time a famous person died from cancer it always seemed to be
described as "after a short battle with . . ." This is deeply
unhelpful, because it places all of the responsibility of survival
on to the patient. On one level, the last thing you feel like doing
after a day on a chemotherapy drip is "fighting". You want to throw
up and go to bed.
Second, and more important, the
assumption underpinning the notion of fighting cancer is that those
who win the battle somehow have more moral fibre than those who
lose. From there it is a short distance to talking about
"deserving" to have or survive cancer (or not).
I remember very clearly one friend
describing my illness as "completely unfair. . . He's never hurt
anyone." Apart from its not being true, I took this to mean that
there were people for whom a short dose of the disease would be
good: it would make them shape up and become more rounded human
beings.
Again, this is dangerous thinking. It
made me realise that most of the way we speak of cancer is still
framed by suspicion and fear. It would be a good thing if we began
discussions of it with a simple acknowledgement of that fact.
And yet, only recently, I heard myself
talking about the cancer (and death) of three close friends in
terms that made me shudder with embarrassment. I was saying,
without apparent irony in my voice, how disappointed I was that my
having cancer had failed to "suck up all the bad luck in the room"
and protect my friends.
Having harangued those close to me for
making such simplistic utterances since my recovery, I realised
that changing the discourse we use to describe cancer is still a
work in progress, and will have to happen one sentence at a
time.
MY LOWEST point came some two months
into my treatment. My midway scan results appeared to show my
tumour growing, not decreasing, in size.
My wife Tatiana and I were shown into
a quiet room off the ward. My ward doctor, who had been treated for
Hodgkin's lymphoma himself, looked me in the eye as he watched the
news sink in. He told me in commendably frank terms how he assessed
my chances. "It's like this: even if you are given a shit pack of
cards, those are still the ones you play with."
Nine days after being given this news
(and prepped for an even harsher regime of chemotherapy infusions),
we were told that a mistake had been made: my tumour was, in fact,
shrinking. The most likely explanation was that the slides of my
before-and-after scans had been read the wrong way round.
On more than one occasion during this
period - characterised by insomnia - I lay awake and planned my
funeral, including the music I wanted, and the ceremony for
scattering my ashes. I even broke the habit of a lifetime, and
talked to my wife about savings accounts.
The second lowest point was being told
that I was better. Not the actual moment of being told I was
officially in remission, but the days that followed it. Suddenly, I
was cut off from the community of doctors and nurses who had
monitored me so closely. Suffering from radiotherapy-induced
depression,
I began to drift through my days,
uncertain of the future I was being told I could believe in again.
Nothing had prepared me for the lack of elation I felt.
SIX years after being given the
all-clear, I am just beginning to see the territory I have walked
through. I still pray very short and simple prayers.
I still choose not to be angry, with
God or anyone else. What would be the point? I am convinced that
God was there with me, because of the kindness shown to me in very
human actions that Jesus would have approved of: the friends and
relatives who visited, sometimes just to sit in silence; a nurse
holding my hand as she injected me; mysterious parcels left by the
"Brownie fairies" on our doorstep; the offer of lifts to the
hospital; the endless supply of home-cooked meals-on-wheels made by
friends; my wife stroking my brow and humming as I came to from
Piriton-induced sleep.
Most of all, I remember to be grateful
each day. It is not gratitude for having had cancer (I am not ready
to say that, yet), but for the people whom having cancer forced me
to notice more closely: my wife, my children, and my friends. If it
is possible to speak of heroes in my story, it is they who are the
heroes. They did not have a choice in the matter, but chose to
watch over me anyway.
Anthony Wilson is a poet and
academic. Love for Now is published by Impress Books at
£6.99 (CT Bookshop £6.30); 978-1-907605-35-2.
Riddance is published by Worple Press at £10 (CT Bookshop £9 - use code CT252 );
978-1-905208-16-1. For more details visit www.anthonywilsonpoetry.com .
Let the healing start.
May it begin in the blood
and flood every cell with light.
May it infect the heart.
(Let the healing start.)
May it come as one comforts
a newborn at midnight
the wild shocking eye closing.
(Let it come.) Let it start
now as we sit here waiting
and talking through days
of colour and rain.
May it infect the heart
and save it. May it lead us
into light. (We are open.)
Let the healing start.
You gave me time to notice -
apple blossom, hand movements,
the light taking leave of rooms.
I would like to claim
new attention to my children
but the truth is they grew up
whether I watched them or not.
Mostly I slept.
You began in midsummer.
It took till February to find you.
By then all I knew were symptoms:
insomnia, night sweats, a cough
I could not shake off.
Because of you I revisited old LPs -
I did not want to die
not having fried onions to Grover,
made bubbles to This Mortal Coil.
The scriptwriters of Frasier
helped me recover from you,
plus condensed milk and broccoli -
though not at the same time.
Eventually I drank coffee again.
You reacquainted me with my guilt -
the way I glared at S
after she'd poured out her heart
in the autumn of endless nights
with nothing but the wind for company.
I chose songs, having you,
and invented ceremonies by rivers.
(But I found no poetry in you.)
You saved me from talking about house
prices.
You obliterated my craving for alcohol.
I would say I am grateful
but am not ready for that, just yet.