Up Until Now

by Petrea King

  Wendie was expecting a strongly worded suggestion that she be a friend to me but no more. Instead, once drinks were in place, Geoff raised his glass and said, ‘We love our daughter and want only the best for her. If Petrea loves you, then we love you, so welcome to the family!’

  After that, Wendie was warmly embraced into our family, and she readily admits that Geoff was the best father she ever had.

  CHAPTER 32

  Leo’s lump

  The saga with my legs continued. While I could walk quite well, living with chronic pain was and is tiring. My knees swelled easily when I stood for long periods, as I did when lecturing or delivering workshops, and I couldn’t walk very well on uneven ground—sand, grass or European cobblestones were all very difficult. The slightest tilt in the joint meant I had raw bone on raw bone, because all the cartilage had been removed from my right knee during three arthroscopies. There had been many times when I stood up, perhaps in a restaurant after a meal, only to have to sit down again and wait until the cartilage relocated itself so I could put weight on the joint.

  My orthopaedic surgeon, Jim O’Brien, couldn’t understand how I could walk at all given the state of the joints and the raw patches of bone on bone, but the pain levels I experienced weren’t unmanageable and I was very careful with the way I walked, turned and generally used my legs. The great blessing—on a good day!—is that my legs have taught me to remain focused in the present moment and made the valuable practice of ‘coming to my senses’ a constant in my life.

  Leo had often helped at times when I’d needed to have surgery or be away from the children for any reason; he’d simply move into our home to take care of them. His hostility towards me had completely disappeared, and he’d become a frequent visitor on weekends. He still had many idiosyncrasies and fixed ideas, but most were tolerable given the short amounts of time we spent together. He came to love Wendie’s company, and the children were happy that we all did our best to get along with one another.

  Leo had little money—having lived for some years on the funds I’d signed over to him when I had leukaemia—and because he lived outside of Sydney, the only way he could have regular contact with the children was if he stayed in our home. He often slept over when Wendie and I went away for the weekend.

  Leo knew very few people and, while he was likeable in many ways, his eccentricities tested most long-term friendships. This meant he had no support network except us to help him when he suffered from his own health issues.

  ***

  Leo had a lump—a fibrous histiocytoma between his shoulderblades. Histiocytomas aren’t generally malignant unless left unattended, but Leo was unquestionably a quirky character who held unusual and rather extreme ideas about health and healing.

  His histiocytoma started off as a relatively small lump that he had removed three times. When it grew again after the third surgery, he decided that doctors didn’t know what they were doing, and he determined he would treat himself through nutrition and fasting. The problem was, Leo was rarely consistent. There were times when he would eat nothing but apples for a month, and the lump would disappear; then he would eat chips and burgers, and the lump would reappear. This went on for quite some time, with the lump coming and going depending on the strictness of his eating regimen.

  However, a time came when the lump was no longer fluctuating in size. It grew and grew—until he had to wear it in a sling because it was so heavy. He looked like a weird version of the Hunchback of Notre Dame. I harassed him to go back to the doctors and have it removed, but he was determined to rid himself of it ‘naturally’. Although it must have been incredibly uncomfortable, Leo rarely complained about it and his life began to revolve around this wretched alien clinging to his back.

  The histiocytoma was growing rapidly, fed by a network of hundreds if not thousands of blood vessels wrapped around his chest like webbing. The tumour extended from the top of his shoulders to below his waist and outwards on either side to his armpits. This extraordinary tumour is best not described in further detail.

  I finally convinced him to see a neurosurgeon at St Vincent’s Hospital because, by this time, the lump weighed more than six kilograms. It was literally like a soccer ball hanging between his shoulderblades.

  Before our appointment, I wrote to the neurosurgeon. I knew that if he gave the slightest indication of judgement about Leo and his eccentric ways, my ex-husband would walk out of the consultation and refuse to return. I was very keen for him to get the lump attended to once and for all. Though we had been divorced for years and there had been many testing times with Leo, I continued to care for him and felt sorry for having caused him so much emotional pain. And there simply wasn’t anyone else who would look out for him, let alone help him.

  The surgeon was particularly sympathetic and overly solicitous towards Leo as we walked in together and sat down. It was to be one of the funniest conversations I have ever witnessed.

  To assess if he had the facts correctly noted, the surgeon recounted Leo’s story. ‘So, Leo, you’ve had a lump on your back and you’ve had it removed?’

  ‘Yes, that’s correct,’ replied Leo with characteristic gusto.

  The neurosurgeon continued, ‘And, Leo, the lump came back and you had it removed again?’

  ‘Yes, that’s correct,’ replied Leo, again with his usual unflagging enthusiasm.

  ‘And, Leo, the lump came back a third time and again you had it removed?’ asked the neurosurgeon, being as gentle as humanly possible.

  ‘Yes, that’s correct,’ replied Leo with emphasis.

  Then the surgeon hesitantly said, with a kindly look on his face, ‘And now it’s back, Leo, would you say it’s a very large lump?’

  Given the doctor’s approach, Leo may as well have been a small frightened child rather than a difficult and exceedingly eccentric man in his late fifties.

  Without further conversation, he turned around and lifted his shirt to reveal the soccer ball-sized tumour hanging off his back.

  ‘Oh yes, Leo, I see it,’ the surgeon said in the most even of tones as I successfully suppressed my hilarity.

  No medical professional had ever seen such a grotesque monstrosity. In a developing country, no one would survive so long with such a tumour; in Australia, no sane human being would have left it unattended. The surgeon excused himself for a moment as he rushed out the door to see if he could find another doctor in the building with whom to share this extraordinary case. Alas, he returned frustrated and dejected because no one else was available to witness this singular medical phenomenon. He said that Leo would definitely benefit from having the tumour removed but, given its size and location, he would need a combination of surgeons.

  Leo said he’d think about it, but I could already tell he had no intention of pursuing a surgical option. He had clearly humoured me by attending the appointment while remaining firmly wedded to his bizarre beliefs.

  ***

  Even though the lump was rapidly growing, a few weeks later Leo flew to visit Sai Baba in India. He hoped that the Indian saint would help him, possibly even cure him.

  Leo was 195 centimetres tall and flew scrunched up in economy class. How he underwent the long flight doubled over with the weight of the tumour on his back, I’ll never know. I am sure his fellow passengers found it to be one of the longest and strangest journeys they ever made.

  From India, Leo recounted to me how he’d sat on the floor of a shower stall while an artery haemorrhaged from the tumour. His body went into peripheral shutdown: his blood only circulated between the heart and brain to keep him alive while the rest of his body survived on minimal blood flow. He sat in the shower for two or three days until he could get one finger moving, then two, and gradually he brought his body back to life. It is truly extraordinary what the human body is capable of surviving. This happened several times.

  When I suggested to him that his dying in India would be painful and difficult for his teenage children, he joked about not bringi
ng his body back to Australia and laughingly said, ‘Just float me down the Ganges.’ I tried to reassure the children while being realistic about the possibility, even likelihood, of their father dying from blood loss before he made it back to Australia. There would be no point in my going to India to bring him home—if I knew one thing about Leo, it was his relentless determination to do things his way.

  In India, all people looked with disdain upon Leo. He later told me that he was considered the lowest of the low because of the monstrosity clinging to his back. I imagine most Indian people wondered why a man who could easily have surgery in his home country would be living in theirs. And, indeed, what dreadful karma was he living out with his alien companion?

  Leo rang me before his return flight, saying he’d haemorrhaged again and was exhausted from washing the hotel’s bed sheets—I could only imagine the scene. He just wanted to sleep, but I knew he was teetering on the edge of life and encouraged him to get on the flight home. We would be there when he arrived.

  ***

  The following morning, Wendie and I were among those waiting at the airport to greet the arrivals. I had determined in my mind that Leo would go from the airport directly to the hospice—if he still refused to go into hospital—as I could no longer look after him and felt it was unfair of him to expose our children to such unnecessary trauma.

  As Wendie and I waited, we noticed anxious men running around with walkie-talkies. I nudged Wen and said, ‘Do you reckon they’re looking for us?’

  Without hesitation, the men quickly escorted Wendie and me behind the scenes—and there was Leo, sitting in a wheelchair on a pile of newspapers with blood and plasma dripping through them to the floor. He had survived the trip only to collapse in customs due to further haemorrhaging. He was unbearably skinny and his skin was a greyish-blue. His icy cold hand descended on mine as he declared in his broad Dutch accent, ‘Ah, Petrea! It’s so good to see you!’

  The simple fact was, whether I liked it or not, Leo had always loved me in his own strange way, and he was home.

  An ambulance had been summoned, of course, but most international flights arrive during morning peak hour. As an attendant pushed the wheelchair at a fast trot towards the terminal entrance to get Leo to the ambulance as quickly as possible, he said to me, ‘Is he going to die?’ and all I could honestly say was, ‘It’s possible.’

  An hour later, Wendie and I were again reunited with Leo in the emergency department of St Vincent’s Hospital. He was lying on his side. The nurses were nonplussed, not having a clue what to do with him. His haemoglobin was 3.8 instead of in the normal range of 13 to 17, and they couldn’t get a blood pressure reading. After so many years of living with this growing mass, his body had adapted in extraordinary and creative ways, allowing him to survive.

  I had rung St Vincent’s Hospital and Sacred Heart Hospice the week before Leo’s arrival to warn them of his impending return with this massive tumour; I was frustrated but understood why they didn’t believe me when I tried to describe its size and the magnitude of the challenge about to descend upon them.

  The tumour had become very unpleasant, with a few sinuses several centimetres deep. Leo had packed it, heaven knows how, in plastic and towels soaked in diluted lavender oil under the sling to make the trip home. The nurses couldn’t cope with the smell, and it was left to me to gently unpack the tumour and get him into a bath.

  The only part of Leo that never faltered for a moment was his mouth. He was as weak as a wobbly kitten, but he talked non-stop about how pleased he was to be home with me. I reminded him that we were in hospital, and I stressed that he wasn’t coming home to the children until the lump was removed.

  Leo taught me a great lesson during this hospital ordeal. When he was finally ensconced in a warm bath, he decided he wanted to shave. I went off in search of a mirror but there wasn’t one to be found anywhere in the ward. I returned to him apologetic that I couldn’t find a mirror, then he vigorously pointed to something in the corner of the bathroom, saying repeatedly, ‘Get me that. Get me that! Get me that!’ with increasing agitation. I finally figured out what he was wanting: a dusty, broken aluminium paper-towel cover, on the floor in the corner.

  I stood holding this cover up for him to catch a glimpse of his unshaven face in its dingy reflection. This comical scene was fortunately a private moment, and I wondered what on earth the staff would think if they walked in. Surely they would wonder who was the madder of the two of us.

  That is when a beautiful, life-saving mantra occurred to me: ‘No one does Leo better than Leo does. There’s Leo doing Leo now. If I want Leo to be any different from who Leo is, I’m going to suffer. There’s Leo, doing Leo now.’

  I softened and smiled. Leo had always been relentlessly and consistently himself. My wanting him to be any different would be a sure path to my own misery. In that moment, I understood why I loved him despite his irritating foibles, outbursts and challenging idiosyncrasies.

  ***

  Before subjecting him to surgery, the doctors tried to increase Leo’s haemoglobin through blood transfusions, but every time they slightly increased his blood pressure, the tumour haemorrhaged. They finally decided to take him to theatre as he was.

  The likelihood of him surviving the surgery, given his lack of blood pressure and his perilously low haemoglobin, was minimal. There were literally hundreds of blood vessels to be cauterised. Leo was quite cavalier about whether he lived or died. He said his farewells to his children, Wendie and me before being taken to the operating theatre.

  The surgeon and his team were truly heroic and remarkable. Nine hours later, Leo was lumpless: the 8.8-kilogram tumour was gone, and a bare rectangular patch of exposed flesh remained.

  I am sure that people find this story hard to believe. I would too, but for the fact Leo took us on the long, miserable journey with him. And I have photographs, although the tumour only weighed about 6 kilograms when they were taken. The hospital staff certainly took detailed photographs, given no doctor had ever seen anything like it or would again. Without a doubt, Leo was a singular character who taught me to never ever give up on a person as the human body is capable of amazing feats of resilience.

  It is hard to say whether Leo had a classifiable mental disorder. He exhibited so many odd behaviours, such as declaring to the doctors who had come to witness this extraordinary medical phenomenon, ‘I did this for humankind, to show what the human body is capable of.’ This was in keeping with the way Leo had experimented throughout his life with diets, fasts and water treatments such as sitz baths, though now his ideas were more extreme. The seeds of paranoia were there too in his mistrust of the medical system, and these seeds sprouted and developed as he aged.

  Four days after the surgery, Leo returned to theatre for skin grafts taken from his thighs and applied to his rectangle of bare flesh. There were grave concerns about the skin adhering to bare bone, and the surgeon decided to go ahead only on the condition that Leo agreed to radiotherapy once the grafts had fully healed. However, on the fourth day post-op, Leo discharged himself from hospital having decided that doctors knew little about treating skin grafts. He never returned for radiotherapy.

  It was aggravating that Leo wouldn’t comply with medical advice; however, it was typical of him and to be expected.

  ***

  I approached the owners of the Southern Highlands property where we conducted retreats. They had become good friends of mine over the years, and I asked if they could help Leo by giving him some work and a place to stay. They created a low-stress job for him on their property where he lived in a caravan.

  Leo gradually recovered his health and strength. He stayed on the property for some years, creating gardens and doing simple chores.

  Kate and Simon would visit him there. I so admired the love and care that they always extended to their father. He often lectured them mercilessly or talked incessantly about his health and his strange philosophies around healing. Regardless, Kate and S
imon continued to love him and remain in contact with him.

  CHAPTER 33

  Our tree change

  I had worked hard to repay my parents for the financial support they’d given me, as well as to house and feed my children; Leo had never financially contributed to their welfare except during the years when I was unwell. My income was derived from my practice along with the sale of my books and recordings, which usually just covered the rent and food for me and the children, given the amount of my pro bono work.

  But as Wendie and I created a life together, we decided to purchase a house with the meagre funds we had, most of which came from her superannuation. Her heart was no longer in the education system as she too had found the journey through illness and the loss of someone she loved to be a profound and life-changing one.

  Every weekend the two of us searched up and down the coast and hinterland to play out the fantasy of how we might create a life outside Sydney, as purchasing a home there was well beyond our means.

  Finally, we settled in Bundanoon when we found a small and secluded house set in a beautiful garden on a battleaxe block. While walking around the garden, we were in awe of a magnificent gum tree whose roots were nourished by a natural spring forming a pool at its feet. I said to Wendie, ‘This is it.’ We’d instantaneously fallen in love with the tree and knew this was the place even before we entered the house.

  Kate had recently moved out of home into college at the University of New South Wales, while Simon was completing Year 9. He wasn’t overly keen to move to the country, because he was happy at his school in Sydney, Glenaeon. He was only slightly relieved to find another Rudolf Steiner school in nearby Bowral, and as soon as he was able he secured an apprenticeship to follow in his father’s footsteps as a chef.