Shingles is much worse than Leukemia – Guest Blog by Lynley Hood

By Helen Petousis Harris 23/12/2014 3


By Dr Lynley Hood

For the first three years following his diagnosis in December 2002, Jim’s chronic lymphocytic leukemia was a non-event. Then from late 2005 the complications – the anaemia and the chest infections – began to recur with tedious regularity. My husband endured them all, and the consultations and treatments they necessitated, with good-natured stoicism.  

On 10 September 2007 the complication was a sore throat. To Jim and me, and to his GP, the tiny blister that appeared on his forehead that day seemed inconsequential. So the treatment he received was for a sore throat. 

Next day, an oncologist phoned to call him into hospital.  A serratia infection had been found in his sputum. He needed urgent inpatient treatment. In the course of that conversation Jim mentioned his sore throat and the red, slightly swollen, eyelid he had woken with that morning. The doctor’s response caught him by surprise. “Did I have chickenpox as a child?” he asked, checking that he had heard the question correctly. Of course he had chickenpox as a child. I do not recall what treatment Jim had for shingles, but it was started that day and taken as prescribed – the diligent nursing staff of Ward 8C made sure of that.

During his week in hospital, the blisters around Jim’s eye multiplied and began to weep. The medical staff looked worried. Jim was unconcerned. “I feel fine,” he  insisted. “No – I don’t need any pain relief. Yes – I’ve got plenty of panadol if I need it.”  

After a week, Jim came home. He relaxed in the warm spring sunshine as the magnolias, camellias and rhododendrons in our garden burst into multi-coloured bloom. For nine precious days, all was well with the world.

In the evening of 26 September, the first terrible paroxysm of post-herpetic neuralgia struck. We were peaceably watching television when Jim lurched out of his armchair and staggered around the room, moaning and gasping, clutching his head. To my frantic questions he had no answer. Finally, after what seemed an eternity but was actually about five minutes, the pain began to subside. Jim regained his composure. “It felt like I was being stabbed in the eye with broken glass,” he explained.

Thereafter the vicious stabbing attacks recurred unpredictably. Five in one 24 hour period, thirteen in the next, then eight, and on and on and on, sometimes only five minutes apart, at all hours of the day and night. Such randomness left no room for relief in the spaces between. Those spaces were filled with the doom-laden, soul-destroying dread of not knowing when the next attack would strike.  

Jim’s doctors struggled to find the right balance between excruciating pain on the one hand, and life threatening sedation on the other. Nothing worked. 

After a month of intense and uncontrollable suffering Jim became increasingly helpless and dependent, and I became increasingly bewildered by the seemingly arbitrary, random and ineffective treatment he was receiving. 

“I don’t understand,” I said to Jim’s oncologist. “For everything else Jim’s had wrong with him, there’s been a raft of diagnostic tests. You’ve told us what’s happening, and why. You’ve outlined the treatment options. You’ve explained how they work, what their side effects are, what outcomes we can expect. Shingles is much worse than leukemia, but all you can do for shingles – and all the neurologists and pain specialists can do – is throw stuff at it in the hope that something might work.” 

“Shingles is not something we know much about,” said the consultant.

After eight weeks of inexorable post-herpetic neuralgia, Jim died, and I went in search of answers. 

I was dismayed to find no current New Zealand research into shingles, and even more dismayed to find that a bequest given to the Otago Medical School in 1984 for research into ophthalmic shingles had lain untouched for 25 years.

I did find a New Zealand estimate of the health burden of  the varicella zoster virus (VZV) but that was no use – it considered only chickenpox. 

But while New Zealand health authorities seem indifferent to shingles, ordinary New Zealanders clearly are not. An international survey commissioned by Merck in 2007 found that “Kiwis have the highest awareness of shingles in the world.”  

Clearly, the time for shingles to be taken seriously by New Zealand health authorities is long overdue.

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zoster
New Zealand herpes zoster hospitalisations by age group, 2013

 


3 Responses to “Shingles is much worse than Leukemia – Guest Blog by Lynley Hood”

  • Hi Lynley,
    My father’s experience with shingles seems to have been similar to your Jim’s. he was already very unwell with both terminal bowel cancer and aplasia (a chronic anaemia) when he was struck down with shingles. It was a miserable blow and made his final year even more horrible than it already was.
    I can only agree with you wholeheartedly.

  • I recently had shingles…I tried everything to ease the pain, but nothing seemed to work. I had it across my torso. Given the nerve pain I was experiencing, my wife (a registered nurse) suggested I try a tens machine (that she used when she was in labour) and place it above the blisters (i.e. between the blisters and my brain!). It worked…..! For the duration I used the tens machine…it substantially eased the pain…..so felt it was worth sharing! Hopefully it can help others suffering from shingles – it’s not nice!

  • Debilitating. My “cure” was time and literally sitting still watching TV. Any movement around the torso of even shirts lightly scraping the skin was just excruciating. Tried all the recommended (medically recommended!) creams but none alleviated. I never thought I’d ever take sick leave for a “skin rash”.