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Now to locate the source

I had a full body CATscan today, the purpose to locate the primary tumour, which can then be biopsied to determine a prognosis and strategy. Although I returned home with copies of the scan images on CD, I will wait until the neurologist reports the conclusion, and not attempt to identify the critter myself! I will post more when I know more.

Meanwhile Lavinia and I are booked on a long weekend in Rochester, Kent, for the wedding of a cousin of mine, which will be a great opportunity to catch up with various family members. Precious times.

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A Difficult Week

Monday:

Frightened by my worsening condition, I booked an emergency MRI scan on my lumbar spine at a private clinic in London, and with Lavinia’s help I took the train. The scan was quick, and I had the emailed report by the time we got back home. I was exhausted!

I had expected the report to identify which spinal spur or disc was pressing on the nerve, and hence which would have explained my symptoms, but none was evident. It was suggested that a spinal surgeon might spot something missed in the report, so I urgently booked to review the scan with one for the Thursday.

Tuesday:

Some time ago I had booked to attend The Human Mind Conference, 27-29 June at The Møller Centre, Cambridge, and had been very much looking forward to it. So despite my increasing difficulties in walking, I took the train and a cab to the first day of the event. The talks were excellent, all broadly supporting the ideas in my book Bottleneck – Our human interface with reality. Walking round the venue was difficult however, my conspicuous dragging foot making noisy squeaking sounds as it scraped along the polished floor. I was clumsy and slow, and must have appeared odd to many.

What has happened to my writing?

A Break-out session had been arranged (to discuss important areas for future research). Each group of half a dozen delegates sat round a table with lists of topics on which to score and comment. As I attempted to write I was shocked to see that my usual untidy script was almost completely unreadable, and my hand began to shake unusually. One of the group suggested that we needed a scribe for the flip-chart, but that their own writing was too untidy so we needed a volunteer. At this point everyone else, including me, insisted that ours was worse, but I clearly had won the race to the bottom that day. I enjoyed the interaction but was very disturbed by my inability to write, based on the assumption of a trapped nerve in my lower back.

By the end of the day, I felt too exhausted to join the arranged meal, and set off home on the train, dragging my heavy foot. I had a scary encounter in an otherwise empty carriage, with a very drunk hoodie with Tourette’s syndrome, who shouted a sequence of aggressive obscenities until staggering out of the train at the stop before mine. It was probably fortunate as my exhaustion might well have made me sleep and miss my stop. Reluctantly I decided to abandon the remainder of the conference.

Wednesday: Alarm Bells:

By now my medically knowledgeable friends who had read the spine scan report, and my son, were all urgently persuading me that I needed to see a neurologist, and that it might not be a back problem at all. To Hell with the expense, I managed to book an appointment at the local private hospital. Very fortunately the Dr. was able to see me straight away. He quickly confirmed that it was not a spinal problem and immediately sent me for an MRI brain scan. So two hours later all was revealed:

The consultant showed Lavinia and I the successive slices of my brain scan, starting from the bottom. As he approached the top, two bright objects appeared, the larger “Walnut sized” one he said was a tumour right in the middle of the part of my Left brain responsible for my Right side locomotion. This was surrounded by a much larger area of swelling. The second bright object was much smaller and was “not in an important part of my brain”, however the very fact that there were two tumours indicated that they must both be Secondaries of a Primary tumour somewhere in the rest of my body which has gone unnoticed. To find where it is located, we immediately booked a full-body MRI scan for this coming Monday.

He told us that they would need to biopsy the Primary before knowing a diagnosis, and that radiotherapy would be used to shrink my”walnut”. His mood was serious, no attempt to put an optimistic spin on my predicament. He prescribed some steroids to reduce the swelling and told me that they might provide a brief temporary honeymoon period of reduced symptoms.

I felt surprisingly calm and all my emotional concern was for how upset my nearest and dearest would find the news. By chance I had recently posted a poem on this website describing an earlier encounter with death (Dying to Live) which I had always felt helped me with the truth about my own mortality. We returned home and called my son and daughter with the news. They immediately came round to support me, and we enjoyed a delicious Indian takeaway meal together, with an excess of dark Gallows humour (it’s my Yorkshire way).

So that’s it I have Cancer with Secondaries. Now for a forward plan.

Thursday

Phoned my two sisters. Informed my immediate neighbours. Made phone calls to Occupational Health Dept, and arranged physio visit for Friday.

Friday

Physio spent time showing me exercises. My dead Right leg refuses most mental instruction.

 

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Dying to Live

(With apologies to my Grandmother and her enthusiasm for poems by Stanley Holloway)

When I was two, I had no fear of waves
So walked straight into the briny sea.
It fell to Grandmother to make the save
Leaving a traumatised little me.

At twelve, despite all efforts by the rest,
Still I could not swim.
Dad tried to teach me, as he knew best,
But only my muscles were taught.

Despite correct movements of arms and legs
To the bottom I rapidly sank,
Emerging coughing and spluttering.
With Dad just frustrated and muttering.

So I took myself off with my inflatable ring,
Played in the shallows, hanging onto it floating.
But the tide was well out, and the wind blew off-shore.
Little did I know what soon was in store.
For the water was cloudy, and the beach slope was steep.
I let go of the ring while in water waist deep,
Least that’s what I thought at the time,
But horror of horrors I was way out of my depth
And sank down in the depths of green slime.

Panic seized me, as my body fought for air and for life.
But all I took into the depths’ of my lungs
Was water to add to my strife.
Each time I neared the surface,
I thrashed and struggled for air,
But only swallowed more consuming sea.
By the third time I’d realised despair.

Now I knew I was going to die,
I was totally out of control.
The gates of Death had taken me by surprise.
Quite an end to a holiday stroll.

Then a final thought came,
As I stood at that portal
To die with dignity.
A last wish for a mortal.
To be in control,
To choose to step through,
Didn’t want to be flushed away lightly,
Like some useless waste in the loo.

So I started to breathe the water,
To get it over, in my own way.
Now, you may think my action quite ruthless,
But it is what saved the day.

If you are trying to drown there’s no panic.
The thrashing and fighting just stopped.
A peace came restoring my senses,
And my body completely relaxed.

Aided by physical exhaustion,
I found that my body could float.
I spread out my arms and legs, and
Lay face up in the sea like a boat
Breathing air…………..

I dared not move my position,
Fearing I’d start to sink.
What to do next I wondered?
Finally able to think.

My hands could make tiny movements
To paddle towards the shore.
But which way is land? I hadn’t a clue
I needed to know something more.

I dared lift my head just a little,
But all I could see was the sea.
So to paddle in the other direction,
Seemed the best action for me.

I paddled for what seemed an age,
Wondering if I was back in my depth.
By the time that I dared lower a leg
I was almost aground in six inches of sea
Home, safe on the beach.

A man with a boat had rescued my ring,
God only knows what he’d seen of my plight.
Would he have been able to save me?
As I sank deep into night.

Slowly I walked up the beach,
A long walk, as right-out was the tide.
Eventually my father and sisters I reached,
Enjoying a relaxing day at the seaside.

They rested in total oblivion,
Of the drama that just did unfold.
Dad reading the Sunday paper,
And me, a story to be told.

“I just nearly drowned!” cough, cough I spluttered,
Expecting at least some surprise.
But Dad’s mind was somewhat distracted
By more interesting news I surmise,
For without raising eyes from the paper,
Just said “oh yes” in a voice without rise.

The pause gave me time to think.
Would it really be good if he knew?
I guessed it might spoil his beautiful day,
Or at least take the gloss off the holiday morn,
If I were to reveal,
That he might well have missed,
The drowning at sea
Of his son, his Richard, his me.

So I buttoned my lip,
Never told, while he lived.
For what good would be done,
For him to be anxious regarding the risks
To which life had exposed his son.

I never mentioned the dangerous tricks
The electric shocks that left me quite stunned
The bombs, or the Phosphorus sticks
The bedroom carpet soaked in Mercury toxic.

A parent needs not to hear tell,
Of a son’s scary moments.
A truth I know now, all too well.

My own son recently told,
Of a time when he felt death come near.
I’m relieved that he’d waited a decade to tell
Of the time of his own mortal fear.
So I can reassuringly say,
He’s a much safer person today.

But what of my drowning event?
Did it leave me scarred and traumatically rent?
No.
Though a terrifying experience at the time,
I emerged with confident intent.
I felt life had filled my cup.
I lost my fear,
And learned to swim, from the bottom up.

It gave me a gift,
More than all wealth.
Though I still fear ways of dying,
I fear not death itself.

At the age twelve, I stood at that door,
And consciously stepped towards death.
Some day, I will do it once more.
But for now, while I’m living
The gift of life keeps on giving.

Richard Epworth, April 9th, 2010

Note:
This is about the occasion when I came very close to drowning in the sea, age 11, during a holiday with my father and sisters, in Newquay, Wales. When I considered my death was inevitable, my choice to breathe the water to finish myself off almost certainly saved my life.

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The Facts of Lies

“Tell me something I don’t know Mummy?”

It was a warm summer afternoon. I was a skinny six year old, thirsting for knowledge while watching my mother who was preoccupied and struggling to make the beds. When I asked that same annoying question for what seemed to her the hundredth time, she paused, sighed, drew breath and said: “Would you like to know where babies come from?”

I will never know why she chose that particular moment to reveal the full frank facts of human procreation. Was it her desire to get it over with before I reached an age where she would be too embarrassed to tell me? Or perhaps it was an uncharacteristic moment of frustration with my never-ending requests for new knowledge. As I loved my Mother, I prefer to remember it as the act of a brave young woman of the early 1950’s, eager to educate her young son in the fullest sense.

And so she began. I remember feeling the warmth of the sun shining into the room, smell the freshly laundered sheets, and seeing her leaning beside the polished bedroom table as she busily tucked in the bedclothes. But I can remember nothing further except the feeling of: “Whooaaoo!, Too much information!”, as she described the carnal act of sexual intercourse between my dear Mother and my upright Father, though to be fair, she told it in a clean and clinical way. It was just so unexpected, such a big story and so bizarre compared with all the other clickety-click facts that Mum and Dad had told me in the past. I usually knew just where to pigeon-hole everything my parents told me, alongside all the other safe, sterile objective facts in my mind. And frankly, I really didn’t want to have to think about my parents connecting parts of their bodies that I had never been allowed to name, see, or even imagine.

Well, if it was to shut me up, it certainly worked, as I didn’t ask another question all day. I was six, I believed everything my parents told me as I trusted them even more than God. So as the evening wore on, I rehearsed in my mind what I had learned, and attempted to marry it up with anything else that I knew around the topic. This was almost entirely unsuccessful, as what little I did know about the birds and the bees, all seemed to be about gardening. But as I began to realize just how strange my new learnings appeared to be, I grew increasingly excited at the thought of sharing my new knowledge at school the following day. Knowledge is power, so at last I would command some major respect from classmates who’d previously treated me as the skinny geek that I was.

Though my mind was buzzing with further questions, I resisted the urge to seek further clarification from Mother over the breakfast table, fearing huge embarrassment for myself if I did, and set off on my walk to school with a spring in my step. I managed to contain myself until the morning break, then gathered a few classmates, and said: “Hey boys, listen to what I know”.

I told the tale as best I could remember, but instead of the expected hush of awe and respect for which I had hoped, I got titters, laughter followed by loud guffaws. It appeared that on the topic of human procreation, they were all much more knowledgeable than me, for as if in one voice they united in telling me that I had got it WRONG. The truth, it seemed that all but I knew, was that babies were carried into the world in the beak of a large long-legged bird called a Stork.

I felt humiliated, and even smaller than usual among my boisterous classmates, but worse much, much worse, I felt wounded to my very core. For the first time in my life, I knew that my Mother lied to me. Now, from that point on, everything she told me would need to be weighed against others views and thoughts. Was there anyone I could trust to tell me the facts of life, or must I explore the truth of everything for myself?

I never told Mother what had happened at school, but she must have noticed that I was rather withdrawn when I returned that evening. Perhaps she remembered what she had revealed the previous day, and wondered if it had been too soon to teach her little boy about sex? But I had learned something important; that truth is the consensus of the crowd, and trouble comes from listening to strange ideas from lone individuals, especially one who is trusted and loved.

My Mother’s strange tale soon faded in my memory, since it made no sense to me at all, until some years later I began to hear similar stories from older children. Slowly, slowly, it began to dawn on me that she had been right all along, and I felt a little ashamed that I had not trusted her. With hindsight, I learned two things that I would never ever forget: The first, that the truth may be both complicated and uncomfortable. The second; that a shared narrative is a powerful thing, even if it has no grounds in reality.

Excerpt from: Bottleneck -Our human interface with reality