For decades my husband, Xavier, lived with a variety of health problems, including heart disease; multiple cancers; diabetes; and Ménière’s, which causes vertigo and hearing loss. Thanks to his determination, advances in modern medicine and his medical team, he was able to continue with life, more or less as he wanted.
In 2016, on the discovery of a small lump on his jaw, exploratory tests were carried out. Initially it was thought the tumour wasn’t cancerous but extended tests in the US showed it was a cancer of the parotid salivary gland. His surgeon removed as much of the tumour as possible without too much damage to the muscles and nerves on that side of this face. After post-op recovery, he had radiotherapy and was told that that would hopefully buy him some extra time.
He used his three-year bonus well – determinedly enjoying every day. But the tumour grew. The only solution was another operation – a major one. He was in surgery for more than four hours, and his muscles and nerve endings were damaged irreparably, leaving with a lopsided face and an eye that didn’t close. Around the same time, a cancerous lesion on his forehead was excised.
An eye surgeon provided a ground-breaking solution to the problem of his eye by putting a carefully measured sliver of gold under his eyelid – enough to allow his eye to partially close.
Life went on, taken up hugely with medical appointments, with Xavier continuing to travel, playing snooker, gardening and, as always, being the DIY man about the house. The time came when he was informed that cancer had spread to his liver. He probably had only weeks – a few months if he was lucky – to live.
I’ve long been fascinated with the mechanics of dying and death, living through the deaths of family members where the truth was avoided and pretence of recovery when none was possible were the order of the day. The comfort and care was efficient, but emotional compassion was missing and the gap between living and dying wasn’t bridged.
Xavier made the decision to tell family and friends that he was terminally ill, and to talk openly about what was going on in his life.
Then began the start of his end-of-life care. There would be no more active medical intervention. As a forerunner for palliative care, he was referred to supportive medicine, “supportive” being the operative word. His GP remained a constant. His medication was adjusted to alleviate symptoms rather than cure. That state of affairs, with up and down days, lasted for 23 months. Each day, good or bad, was a celebratory bonus for us.
In January he was unwell while on a sun holiday and had to be admitted to hospital. On his return home, a visit to his GP had him back in the hospital, in isolation – along with his other ailments he had that winter’s flu/respiratory dose. He was there for 10 days, had a battery of tests, and not for the first time, he discharged himself and returned home. But he, who we thought of as indestructible, was “on the way out”, as he said next morning.
Life continued, but at an easier pace for him. He was slowing down; he became selective in what he could and couldn’t do. He ate little and was losing weight. Previously weight loss was a cause for celebration, now it was as though the grim reaper held his scythe over our heads.
The final downward escalation began. Xavier decided he was no longer able to drive – a relief. We were to visit friends, but he was too weak, so they came to us. When they were leaving, we all knew it was the last time the four of would stand on the doorstep, hugging. Two days later we tried for a meal in our local pub, but had to leave; our usual Sunday lunch had to be cut short.
The word “palliative” morphed to “hospice”. This was a word that had not used in our house, but now it became familiar. Our introduction to hospice care was via our nurse. She was a breath of compassionate, functioning care, subtly drawing out Xavier, discovering his wishes and preferences. She ironed out queries, made the seemingly impossible possible. The hospice registrar came on a evaluating visit, looked over the house’s facilities, assessed Xavier’s frame of mind and mobility, and encouraged him to continue rising each day, shaving, dressing and doing what he could.
Xavier opted to remain at home; it was what we, his family, had always wanted. He was an easy patient and, an added bonus was that he was pain-free. He spoke philosophically about dying – saying on more than one occasion, “Amn’t I having a lovely death?” Such utterances reduced the rest of us to tears. But his attitude allowed us to talk freely and openly – with occasional bursts of gallows humour, about what had been a forbidden subject around the time of the death of our parents and other family members.
Eventually the hospital bed was required. It arrived, was assembled and Xavier installed it in effortless, double-quick time
Xavier organised his funeral from the bed, letting us know what and how he wanted it to be. Cremation was changed to burial and the graveyard of his choice named. He stipulated a closed coffin during removal; he had Prayers for the Sick; for his funeral Mass he chose the music, the singer and hymns, and he wasn’t to be buried in his best suit.
On Friday, April 19th, he moved downstairs. Despite the urgings of our nurse that a hospital bed would make for greater comfort, he refused. “I don’t want any fussing.” Determinedly in command, his plan was “to push the diningroom furniture out of the way”, but family had other ideas and descended on the house like a plague of locusts, whipping the legs off the diningroom table, carting it and the chairs to a spare room and removing the sideboard and contents to the hallway. A single bed, tables and comfortable chairs were installed; vases filled with flowers; candles added atmosphere; and the patient ensconced. Our diningroom is beautiful: a glass door leading to the garden that catches afternoon sun; golden walls and carpet, which add to the sensation of sunshine; and long cretonne curtains with blousy pink roses. Now that room became the hub of the home.
Eventually the hospital bed was required. It arrived, was assembled and Xavier installed it in effortless, double-quick time. Home-care facilities ramped up with regular visits from our hospice nurse; morning support from InisCare; visits from the local community nurse and a night nurse in attendance from 11pm until 7am the following day. We were in the system and it operated easily and apparently effortlessly to ensure Xavier’s care and comfort, and to support us.
We listened, chatted and confabbed. He barely ate; his medications were stopped; and his fancy for red lemonade was met. During those days there were a lot of tears and some laughter as his mobility, hearing and sight deteriorated.
His room was a haven of peace – the hub of the household with everything centring around him. As family and friends dropped in, the kettle was on constant boil. Gradually over the next week, he became frailer. His GP called: it’s usual to be seen by a GP within a fortnight of dying. His death was imminent. He knew it and so did we. Saturday afternoon, he became agitated and the nurse set up an intravenous tranquilliser that he didn’t want and that didn’t have the desired effect. It couldn’t. Determined to be in control, he had pulled out the contraption. It carried echoes of him walking out of various hospitals.
He died at 7.09 on a glorious spring morning. We were with him, watching and listening to his peaceful breathing. He opened his eyes – we like to believe that he looked at us (his nurse said he did). It was she who told us nano seconds later that he had gone. Looking at us, his family, had been his last act of living.
Death does not have to be all negative
My research and compilation of a radio documentary aired on RTÉ Radio 1, Dying with Love, introduced me to hospice care and opened my eyes to the reality that dying and death didn’t have to be all negative. The documentary led to a book of the same title and raft of features.
Over the years I’ve taken an interest in the various debates on assisted dying, agreeing in principal though recoiling at the thought of having to travel outside Ireland to places such as Dignitas in Switzerland at an exorbitant cost. Now that I’ve experienced first hand how dying and death can be managed, I hope when my time comes, that I can be slotted into the hospice system.
Patricia O’Reilly writes biographical fiction
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