Guest Blog – Max Emmenegge

WILL YOU TELL HER, OR SHALL I?

The True Story Of A Man Who Lived With The 10-year Terminal Illness Of His Wife

An Autobiography

My wife Liz had a massive seizure one evening when we were dressing to go out to dinner with friends in Orlando, Florida. The title of my book derives from the question a doctor posed when a CAT Scan revealed a tumour the size of a tennis ball on her meninges. I was barely able to take it in. He took my arm. “Come on, we’ll tell her together.”

Her tumour was, fortunately, benign. It was removed at the Orlando Regional Medical Center a week later. When she was well enough, I brought her home to England to be near the family. I brought her MRI scans with me. She was 53. The year was 1993.

Three years later, Liz started talking gobbledegook. This time, they removed two tumours, again benign. When she came round, she struggled to find words. In 1999, she needed surgery again. The dreaded c-word was mentioned. Now she could only manage the words ‘yes’ and ‘no’. This required considerable ingenuity to determine how she was feeling, or what she needed.

In January 2002, now bedridden, Liz was having mini-seizures every few minutes. The doctor suggested she be given the Last Rites before calling an ambulance to take her to the hospice. The priest infuriated me with his comment: “Suffering is such an enigma.” I saw this as the ultimate cop-out.

The staff at Forest Holme, in Poole, could not have been kinder. Nothing was too much trouble. But three months later I was wheeling her through Poole Park in one of their wheelchairs. They had stabilised her with medication.

Dr. Steven Kirkham, who ran the hospice, called me into his office. He looked ill at ease. “I’m sorry to have to tell you this, Max,” he said, “but I’m afraid I’m going to have to ask you to take Liz out of here.”

“But why, Steve? She’s happy here.”

“And we are happy to have her, but it will not have escaped your notice that most of our patients are here for no longer than a week. Liz has been here three months. We need the bed. We have a list of care homes offering level four palliative care in the Poole and Bournemouth area, and I’m sure Poole Council will help with the cost.”

“Are you saying I’m going to have to pay for her treatment from now on?”

“I’m afraid so. The NHS will pick up the costs while people are in here, but they won’t pick up the costs of a care home.”

“But she’s still dying, Steve. I don’t see the difference.”

“Well that’s how it is, I’m afraid.”

“So, she isn’t dying fast enough for the NHS? I see.”

I found Liz a private room with its own bathroom and a view over gardens in a nursing home in Bournemouth. Poole Council picked up a third of the cost.

One Saturday evening I was sitting by her bedside when she whispered: “Do… you … have…. any… drugs?” Where she had found the words was beyond me, but it demonstrated how badly she wanted to end it all. And why not? Our life is the only thing we can truly call our own. Why should we not have the choice as to how and when we end it? The owner of a family pet would have been thrown in jail for allowing his pet to suffer like this.

One day, Liz threw her rosary beads across the room. I took this to mean that the God she had believed in from birth had let her down. She died on the evening of November 15, 2002. She was 63.

And it’s not only the dying who suffer: My book covers my depression, my feeling of impending doom, my feeling starved of affection, my feelings of guilt, anxiety, helplessness, loneliness and frustration. My feeling trapped in a box with Liz and the box floating on the high seas and slowly sinking, my thoughts of suicide and my needing counselling. The book has been described as profoundly moving.

A literary agent wrote of the book: ‘We feel you are very brave to commit your intimate feelings of your wife’s illness to paper, and we are sure your story will be of great comfort to someone living with or caring for someone with cancer.’

If my book gives readers something positive: comfort, inspiration, a feeling of being less alone, it will have been worth the effort of my writing it twice, once as a novel, then as a true story.

This version is the true story.

Amazon Kindle: http://ow.ly/f6a7p

Barnes and Noble Nook: http://ow.ly/f6awV

iBookstore: http://ow.ly/f6aL2

email max.emmenegge@booksthepublishersmissed.com

Maximillian Emmenegge

November 8, 2012