(Names of persons, have been changed. All content is factual and documented.)
Aroha, my wife, and I arrived in Ireland in January 2003 where I was to take up a university appointment. In June of the following year, we were on holiday in Villeneuve-les-Avignon, house minding for our dear friend, Dominique, when Aroha first felt abnormal tiredness and some pains. Some seven hideously painful weeks later, in Belfast, Aroha was diagnosed with acute myeloid leukemia. We flew home to New Zealand urgently to our whanau (family) and Aroha entered Ward 62 of Auckland Hospital, for her rounds of chemotherapy, at the start of September 2004. I had approval from the university work to with my students, electronically, from Auckland. After the chemotherapy was done I flew back to Ireland for the final semester of the 2004-2005 academic year (January-May). It was twelve weeks of slow-turning calendar days.
At the start of June 2005 we came home to The Grove. Although only 2% of patients in Aroha’s situation live for five years from the time of diagnosis the period until October 2006 was relatively normal. We had to avoid falling into weeks marked by counts of haemoglobins, neutrophils, white cells, red cells and platelets. Then, in that fateful month, with pains returning and her blood tests dropping, Aroha and I knew that the coming summer would be our last. We had a hideous and very private month and then met with Aroha’s specialist in November. She confirmed the collapse of our open-ended days. She expected Aroha to pass away by the end of February 2007.
Through 2005-2007 Aroha had weekly blood tests in our local town that were analysed in the nearest city and led to regular blood transfusions at Auckland Hospital, some hours away, and then at Rakehou Hospital, our nearest rural hospital, for the last six months. The transfusions, which kept Aroha going, had particular rituals which became an engrained part of our lives. The day before, we would check our list of: Walkman and three CDs; barley sugar sweets; fruit juice drink; water bottle; Hello magazine and another; the current book being read; glasses; a bag of soft sweets; cup and green tea bags; some malt biscuits; thermos; rug; tri-pillow; lunchtime pill for platelets and paper serviettes. On transfusion day there were wonderful nurses in Auckland’s Day Care (I immediately think of Miranda, Laurel, Janie ...).
In Rakehou the hospital was poor – the same spiders and grubby areas on each visit but it was only half an hour away and had wonderful laboratory staff (Bevan and Jackson) who never failed to be cheerful when painlessly taking Aroha’s blood. Nurses such as Lesley-Anne and Stacey Lewis were professional and compassionate. There were two ‘bottles’ of blood in early transfusions then three in later ones, necessitating stays of some six or seven hours for my darling wife who was unfailingly pleasant and courageous, despite her fear of needles. She had to enter the hospital each time with the knowledge of her virtually invisible lodes of veins that sometimes-clumsy doctors were trying to mine for a connection to the transfusion line.
In early August, Aroha found that the transfusions had become exceptionally painful and only improved her condition for one day. She made the decision to cease her transfusions. We knew that decision meant the descent would be inexorable. In the last weeks of August she desperately wanted to die and avoid excessive pain and the loss of her dignity. Now we entered the palliative world of Eslow, Mexoclopramide and morphine pumps. She spent much of each day in our lovely bedroom, which opened up onto a deck. Beyond the deck lay the winding valley of wetlands – shimmering rushes, stalwart pongas (tree ferns) and urchin manuka (teatree). Outside, in the garden over the path from the deck, the freesias were fragrant and bountiful. The daffodils Aroha had planted along the drive were vivid in their beckoning yellow. My brother, David, had come over from Queensland to stay with us and replanted the hanging baskets that Aroha loved to look at. Happy Jack came every few weeks for mowing and the grass accordingly patterned into compliance. Except for dark moments in the night Aroha was unfailingly strong.
Inside our home, life became a melange of visitors, cherished minutes of hand holding and muted talk together, snatched evening sleep breaks of 25 minutes (then up to a rare four hours near the end), commodes and wheelchairs. Aroha planned for her funeral. Some jewellery and clothes were given to nieces who came up from Auckland for a memorable weekend, pallbearers were finalised for each step of the casket’s journey, the church service hymns and songs were finalised and the service booklet printed with Aroha’s choice of photograph on the cover. It was the lovely one of herself and Zak, her much valued Border Collie, taken on the lawn at our small farm near Hamilton, in 1990.
The hospice nurses who came to our home, epitomised by Sandy Olsen, were wonderful, as was Aroha’s GP, Graham O’Neill. For the last weeks, Aroha’s sister, Marama, and David eased the daily routines and gave invaluable back-up. In the final days Aroha said she would only talk on the telephone to her special Oncology Day Care nurse in Auckland Hospital, Miranda, and Ben, my son, and daughter, Kate. On one memorable morning, Aroha struggled into the wheelchair for her only time outside in the final week. The sun shone. As I wheeled her inside, across the front doorway, the mizzling rain hushed onto her vibrant hydrangeas. She died two days later.
The end came with a Graseby pump maintaining a palliative supply of morphine that took away her excruciating pain. Around six in the evening of Saturday, 1 September, Aroha slipped away after a brief effort of straining…. In Stuttgart it was the engagement party day for my Kate and Daniel, her outstanding German fiance. It was three years since we came back to New Zealand. It was the first day of Spring.
In the extreme gift of intimate time I washed Aroha’s lovely body. It was the first time I had fully held my wife in my arms for some three months without her bruising or feeling pain. Knowing this was the last time we would be together I sponged those precious limbs repeatedly and dried and redried them. Her fingers and toes, which had become our single physical points of contact in her final weeks in bed, as any other touch was too painful, were soft and relaxed. Aroha was never other than lovely, in sickness or in health.
Five minutes after Aroha died my son called, earlier than usual, from Paris. My daughter called from Stuttgart. The undertaker came and took her to Kensington some thirty minutes away. He was compassionate, respectful and efficient. After he had closed the rear door on his hearse I went inside to tell Aroha what had been happening. I was at the bedroom door before reality washed over me. Next morning, my brother drove three of Aroha’s nieces into town, where he got the doctor’s certificate, then headed to Kensington so the girls could dress their aunt. She had selected the clothes and they had been hanging for days in our bedroom wardrobe…..
The iwi or tribal home, the marae, had Aroha for a day and then the iwi church, built by her cousin, rested her for the church service before the home earth of the hilltop graveyard received her. The eulogy, by her cousin, remembered her so aptly…
… When we recall Aroha’s qualities-there are many pictures and images treasured by each one of us. Her sense of fun and good humour, her compassion and thoughtfulness, her wholeheartedness and gentleness, her generosity and loyalty, her flair and creativity, her steadfastness and purposefulness ,her faith and reverence-and even her irreverence-always interwoven with love.
In these past months, all of us were able to visit, or make contact with Aroha. We had the opportunity to talk, to share the beauty of her home and garden which she loved so much, to sing, to share food and perhaps a coffee or sip of bubbly, to laugh, to cry and to pray. She treasured her moments with everyone. We know who we are, we know the relationship. We know what we saw in her and what she saw in us. We know the truth of love and friendship for a person who is actually there, not an ideal or a projection.
The decisions Aroha made regarding her treatment took courage to bring her through the troubled waters .In turn, she shared her sense of grace, brought us along with her and taught us the practice of acceptance.
I think that Aroha, as teache,r would now ask the question-mai I koinei ki whea? From here to where?
And Aroha, The Unquenchable Grace, would answer, taking the words of a philosopher: Everything that happens to you is your teacher. The secret is to learn to sit at the feet of your own life and be taught by it. Everything that happens is either a blessing which is also a lesson, or a lesson which is also a blessing. Live the happiness that is in your lives….
After the funeral at Kareponia, David and Para, Aroha’s brother, and I drove homeward, first stopping at the church so I could visit Aroha. It was peaceful, there was a hair-ruffling breeze and a glorious gold cross marked that one grave which mine will one day be adjoining.