'Loved ones are hit hardest and reduced to a supporting role...'
In a moving article about her husband, journalist Liam Clarke, the former Political Editor of the Belfast Telegraph who died in 2015, Kathryn Johnston, VIEWdigital deputy editor, writes about the effect of his illness and how he coped
The fear of a slow, lingering death blights life now - my late husband, Liam Clarke, Sunday Times Political Correspondent and Political Editor of the Belfast Telegraph, wrote these words when he was diagnosed with a very rare cancer, pseudomyxoma peritonei (PMP).
PMP originates in the appendix and spreads by filling the abdominal cavity with mucin. The most famous sufferer was actress Audrey Hepburn, who died in 1993 - six months after her diagnosis.
Liam had been alerted to a serious omental cake (a mass in his abdomen) on the shortest day of the year, December 21, 2012. We spent Christmas Eve in hospital, where Liam had a gastroscopy and a colonoscopy.
Eventually, he was referred to a specialist consultant, Dublin-born Brendan Moran, at one of the two specialist centres for PMP in the UK, in Basingstoke.
Six months later, almost exactly six years to the day as I write this, Brendan gave his diagnosis. "This thing will shorten your life," he told Liam.
Any chances of a complete cure would involve very radical surgery, known by patients as the 'Mother Of All Surgeries' (MOAS) - stripping the abdomen and all affected areas. In Liam's case, the chances of success were low, judging by the scans.
He wouldn't really know until he opened him up - and he thought it would probably come to that eventually. Removing some bulk could extend his life, even if some remained.
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He had, Brendan said, after Liam pressed him, 'probably' years rather than months. Liam's major concern was us - his family. And the prospect of a long and lingering death.
He wrote after his diagnosis: "Loved ones are hit hardest and reduced to a supporting role in which they may be called on to play the part of widow, orphan, morale-booster, or long-term carer during a distressing and lingering decline. Savouring chronic pain would be a challenge to most people, certainly to me."
He investigated all kinds of palliative care, from MOAS to chemotherapy. As his oncologist and consultant agreed, all would have massive side effects.
He had drawn the short straw.
Any 'curative' treatment would mean early retirement, disability and lengthy periods in hospital recovering from surgery. Liam investigated many alternatives with researchers in Madrid and London. They held out hope of trials with medicinal cannabis. But PMP is too rare to be included in similar trials.
So Liam was thrown back on his own resources. He was lucky. Although he had plummeting energy levels, and discomfort, by and large he escaped the most searing of pain.
This, he was convinced, and his specialist medical team were open to persuasion, was the result of his eclectic and radical choice of alternative therapies.
However, several times he was rushed by ambulance to hospital for emergency treatment for AF and pain relief and palliative care for a blocked bowel.
His last appointment with his oncologist, just before Christmas 2015, was depressing. The tumour in his lung was large and the abdominal cancer was progressing.
His bowel was no longer operable. He had cachexia, muscle wasting, including wasting of the heart muscle. He had the sickly yellow pallor of someone seriously ill.
On Christmas Day 2015, two days before he died, he repeatedly told us all how much he loved us and that the previous six months had been the happiest in his life.
Liam got what he wanted, a good death. He died with his boots on, sharp as a tack, resolute in the face of dying and knowing he was loved.
And free from the debilitating pain he had feared.
To read the latest issue of VIEW on Palliative Care - go to https://issuu.com/brianpelanone/docs/view_edition_-_issuu_53