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November 2014

Living with Lymphoma – a most unexpected adventure

‘Life is either a daring adventure or nothing at all.’ (Helen Keller)

September 1984.  I’m 20 years old, on a diet and have lost weight with unmerited success.  The doctor wants a chest X-ray.  Within hours I’m in the Royal Victoria Hospital, Belfast (RVH). Biopsies identify a mass as Hodgkin’s Lymphoma.  Five months of chemotherapy follow, with unimaginable nausea – then a month of radiotherapy to my chest.

With my dad terminally ill, Holywood Methodists kick into action.  Mr Jack Wilson co-ordinates a rota of daily drives: Belvoir for Dad, RVH for me.  Friendly faces show up regularly with casseroles. I learn from this man of God the value of leadership in co-ordinating compassion and practical care. One night in Ward 22, I wake up following chemotherapy.  Opening a card and reading the comforting words, the room fills with a sense of peace I haven’t experienced before.

Access to my veins becomes tricky.  I experience ‘anticipatory vomiting’ as doctors approach with syringes.  Reflecting on my terror of this procedure – administered for my benefit – I become a supporter of Release International, established by Richard Wurmbrand, that supports people imprisoned for their faith.

Life proceeds.  I get a job with BT.  I meet Ruth and am profoundly blessed to marry this beautiful, insightful woman in 1994.  Twin boys Chris and Downey arrive.

May 2008.  The growing mass in my neck is diagnosed as Non-Hodgkin’s Lymphoma.  It’s just bad luck or, possibly, a ‘late effect’ of Hodgkin’s treatment.  Ruth asks what if it comes back after treatment.  The succinct answer – ‘limited options’.

Cancer treatment had moved on dramatically.  Anti-sickness drugs neutralise my brain’s nausea response.  Chemotherapy is administered as an outpatient.

Treatment days pass uneventfully, featuring helpful chants from Margaret Rizza.  One favourite track (recommended!) is, ‘You are the centre, You are my life…’

From that summer one day shines, infused with an unexpected peace.  While on a drip, Ruth kissed me on the forehead.  A friend from Corrymeela called in.  He kissed me on the forehead.  One of the nurses kissed me.  Small gestures… with abiding impressions of presence and compassion.

I learned to respect expert counsel from the doctors.  I was advised to save sick leave until, after three months chemo, I truly needed time off.  A low moment during my recuperation occurred one rainy autumn morning, with the house empty.  Waiting for a PET scan, I was convinced the disease remained.  Thinking I’m ‘going down’ and feeling ‘anticipatory grief’ for Ruth and my 14-year-old sons after my likely demise, I cried to God ‘I give Ruth and the boys to you’.  The consultant rang the following week.  ‘The scan is clear, you are in total remission.’

Time passed.  Worries about relapse receded and ‘thinking positive’ became more natural.  We had family around for the 2012 Olympics opening ceremony.  Serving drinks, I suddenly found myself weeping with thanks amongst those I love, blurting out, ‘It’s just good to be alive’.  I started to look forward to my five-year survival, anticipating a celebration barbecue in August 2013.
June 2013, I’m worried about a neck lump and bowel symptoms.

By the end of August, I’m critically ill with tumours obstructing bowel, jaundice, pancreatitis, no sleep and hallucinations.  Admitted to Belfast City Hospital, I’m too sick for surgery or chemotherapy.  We update our wills.  I draft my funeral service.  During September numerous doctors, nurses, laboratory and ward staff stabilise me.  Chemo can start, with a view to a stem cell transplant in December.

Ruth and my sister Rozzie visited daily.  Rozzie helped me set up the visitors’ room for a ‘Strictly Come Dancing’ TV date with Ruth.  Friends left food at our home, sent cards and texts.  Church prayer was intense, including a prayer-filled, hand-knitted blanket from Carnalea Ladies’ Connect group.

From those five months in hospital, I still ponder an experience one October night.  Attached to six pumps, on chemo, I had a stomach bleed.  A blood sample had to be obtained peripherally – ie, from my veins.  A nurse tried – no joy.  A doctor tried – nope!  A roving ‘Hospital At Night’ team member, a blood-taking expert, was called at 4.00a.m.  Agitated, I’d been asking God for help, but my veins just weren’t obliging.  Surveying my arms, she explained this would not be pleasant.

The needle went in deep and fast, with confidence and skill – a sharper needle pain than I have ever experienced.  Just as the needle went in, totally unexpected, I received a clear impression that ‘Angels were active when Jesus was on the Cross’.  I don’t ‘do’ angels, but this was very clear – not a visual image, but a definite impression.

After a moment, I said, ‘Can I share an experience I’ve just had?’

‘Yes.’

I articulated what I could.

‘As you were speaking I felt a tingle down my spine.  I’m actually just reading a book about angels.’

We didn’t say much more.  I offer no tidy conclusion for this story.  The fact that Jesus was pierced has come into clearer focus for me.  Seeing images from conflict zones, I understand that we have a suffering, as well as sovereign, Lord.

In Helen Keller’s terms, my adventure has been an involuntary roller coaster ride rather than ‘daring’.

On this adventure, the phrase ‘show up’ has become very meaningful for me.

All sorts of people have shown up for me and my family in extremis over the years.

God’s love can be experienced as ‘closer than hands or feet’ in diverse situations – maybe, in some inexplicable mystical experience, but more often through a card, kiss or casserole.

Recently, my son Chris quoted from the film Bill and Ted’s Most Excellent Adventure where two teenagers prepare a history talk using a time machine.  Bill says: ‘Be excellent to each other.’

In his hymn, Charles Wesley asks us to ‘Kindly help each other on, till all receive the starry crown.’

The exact nature of the ‘starry crown’ remains vague for now, but each of our adventures presents ample opportunity to show up for others – whether family, friend, colleague or stranger.

 

First published in The Methodist Newsletter, November 2014 issue.