A soulmate’s kiss goodbye

Anth and Jill on Valentine’s Day 2013 at Cinema in the Park.

I knew that in Anthony I had found my soulmate, but I didn’t quite understand just how special a person he was until he became ill in December last year. In the face of this terrible illness, he showed such bravery, determination, an inspirational never-say-die attitude and kept a keen sense of humour to the last. I was proud to be his partner and, in recent months, his wife. He asked me if I felt “gypped”, having only 5 years together. I said I didn’t, as what we missed in longevity we more than made up for with intensity and quality of time together. Having said that, saying goodbye, slowly, over the past 5 months was the hardest thing I have ever done.

The beach was a favourite destination for the wog boy and his dogger chick.

Anthony said he was proud to be a wog boy and he called me his ‘dogger chick’. He loved recalling his upbringing in Klemzig, his mother’s home-made pasta, and the strength of the community around the family. He spoke dialect fluently, although he always denied any fluency in the language, and would surprise me with how easily he would converse when meeting old family members. Anth was an enthusiastic swearer in both English and Italian but would always save Italian expressions for those he felt most strongly about. The term “Fagole” he frequently used, as well “commo di faut a me”, amongst other ruder expressions. In the evenings after work, in the kitchen Anth would cook pasta and, over a glass of wine, tell me about all the Fagole he had encountered during his work day.

Anth doing two things he loved; mowing and swearing.

Anth was passionate in all he did: passionate about mowing, passionate when he disliked something or someone, and passionate in love. He was both deeply intelligent and deeply complex. Like all of us, he had his demons but these were completely overshadowed by his innate generosity, warm heart and zest for life.

Anth was easy company. From first meeting until he left me on his journey elsewhere, I felt always at completely home with him and able to be myself without pretention. He was completely accepting of me as a person, and I never felt lacking in his love. We argued because he loved me – we were able to have a difference of opinion and air our grievances because we both felt secure in our relationship – love was always present, whatever the mood.

Searching for the Holy Grail at the Alma Hotel, Willunga.

He was so much fun. We always had fun together, laughing at the silliness of life. Anth was willing to make fun of himself as well as others. An example – he participated in the Cinema Willunga presentation of Monty Python’s Holy Grail and sang in the Holy Grail choir dressed as a Knight. Prior to the performance, we met his great friends David and Leanne Willson in the pub opposite the cinema, Anth in full Knight’s regalia, drinking beer at the bar, with the regular crew of Willunga rednecks laughing at his get-up. At times would speak in heavily accented Italian English, channelling his mother. Favourite expressions were “I no lika his face”, “He’s a nica boy”, and he would sing to the dog, “I hatea you!”

All through his illness, he kept his sense of humour; his usual retort to doctors asking him how he was would be, “I’m fine, thanks…. Apart from this pesky little brain tumour”. He loved nothing more than farting at opportune times when the carers were tending to him in order to raise guffaws of laughter. Even in his last week, in hospital, we were laughing our heads off at the carry-on a nearby patient was making, yelling at the nurses about his bowel movements. He took pleasure at making up different permutations of his favourite treating specialists’ names and making sure he referred to them as such. The neurosurgeon, Santosh Poonoose, became Santoozie Chanoose or sometimes Chantoozie Sanoosh, the oncologist, Ganessan Kichenedasse, became Creamy Kitcherbun. (Those he didn’t’ like were referred as Dr Dickhead and Nurse Ratchett. There were a few of those.)

Anth fishing at Second Valley

Anth always encouraged me in the things I wanted to do. Whether my passion – photography – or the pursuit of a new job – or simply accompanying me to the beach so I could bodysurf or go fishing, things he wasn’t particularly keen on himself (the former because in the water, without his glasses, he couldn’t see). He was happy making me happy. Some of our best times were had at home in the paddock at the Vale, chainsawing and clearing up fallen timber; he enjoyed these simple pleasures as much as sharing meals with friends or sneaking sly cigarettes on the back porch.

Anth was sympathetic to Eastern philosophies. Here he prays at Uluwatu Temple, Bali.

He introduced me to Eastern philosophy and thinking about things spiritual, including alternative viewpoints. He called this his “Hoobly Goobly”. During the 5 months of his illness, we read books with titles such as The Book of Awakening, The Power of Intention, Anatomy of the Spirit, Quantum Healing and, simply, Faith. We listened to the Dalai Lama, Gregorian chants and recitations of the poetry of literary masters. Anth was not afraid to delve into the metaphysical, and it was this learning which gave him strength to accept the finality of his illness and to prepare for his journey elsewhere with great dignity.

Team Anth, February 2017.

If a picture may be painted of a person by reference to their friends, Anth’s portrait is a masterpiece: such wonderful friends, who have stood by him in the best and worst of times, and from diagnosis to his dying days created such a community of warmth and care. When he was first diagnosed, I was terrified of the prospect of facing his care alone. I had nothing to worry about. Tony and Hala, David “My Man” Willson and Lee, Trish and Tas, Manny and Liz, David “Davide” Moran, Leilia and Sandy all rallied around to provide us with the moral and practical support we needed. My dear friends Kylie and Rey, Michelle, John and Jacqueline, all the Frogs (he had the Wogs, I had the Frogs), Blenky and many others were equally wonderful. Special mention must be made of my beautiful kids, Sang and Jinny, who with great maturity assisted me in Anth’s care when the professional carers were not present. A special thank you to the carers, Tim, Ben (to Anth, “Baby Ben”), Jackie and Justine. Their professionalism, boundless kindness and great sense of humour made the two months at home a pleasure. The care he received at home was far superior to the care he got in hospital. The carers became members of the family and I miss not having them around. Finally, thank you Elsa and Laura who were there for their Dad in his final days. Their presence meant so much to him and he was able to die in peace knowing he was loved.

Anth with his Dad Peter and daughters Elsa and Laura, Christmas Day 2016.

Anth’s zest for life was pitted against the rapid decline of his body in the face of the terrible illness. The progress of the disease was shocking. He was diagnosed on 1st December 2016 after presenting at the doctors with left-sided weakness, and a mild limp. A CT and then MRI revealed a 4 centimetre lesion in his right frontal lobe, which had already started to spread to his brain stem. A brain biopsy the following week confirmed the diagnosis of Glioblastoma Multiforme, an aggressive brain cancer, which we were told, initially, was inoperable. He commenced an intensive six-week course of daily radiotherapy and chemotherapy and high-dose steroids to reduce swelling on the brain. His balance became increasingly compromised and, after a number of falls, started using a walking stick, and then a walker for mobility. Despite his decreasing mobility, in January Anth insisted that we take our planned family holiday to Kangaroo Island, as he had never been there before. On the second day there, he suffered a grand mal seizure on the couch of the holiday house and was rushed to Kingscote hospital where, after being prescribed anti-seizure medication, in true Anth style, he discharged himself and insisted we continue with our planned day trip to Seal Bay, despite it being one of the most isolated places in the State.

Triumphant and defiant, Anth with Jill’s kids Jinny and Sang, at Seal Bay, Kangaroo Island.

The seizure had further compromised his mobility and he was now unable to walk far even with the walker, but such was his determination that, at Seal Bay, we borrowed a wheelchair and Sang maneuvered him down the long boardwalk so that he could see the wonderful sight of hundreds of seals basking on the beach. This made him very happy.

A week later, we received a call from the renowned surgeon, Charlie Teo; he thought he might be able to help Anth, and we made a dash to Sydney for an urgent consultation. Charlie was willing to operate but needed to wait until after the radiotherapy had finished. The surgery had a high probability of causing paralysis, so, rather than do this in Sydney and on Charlie’s recommendation, we contacted Dr Santosh Poonoose in Adelaide. Events overtook us – one morning, at the end of January, Anth was unable to walk at all, unable to get out of bed, so he was admitted by ambulance to Flinders Private Hospital. There he finished the radiotherapy course and, after a week, was transferred to the Repatriation Hospital for rehabilitation.

Anth learns to walk again with the help of robotics at the Repatriation Hospital.

At the Repat, he learned how to use a wheelchair, to transfer from bed to chair and learned how to stand with the use of one leg. The look of dignity and triumph on his face when he stood tall for the first time filled me with admiration and pride. However, this triumph was short-lived as, on 23 February, his 51^st birthday, he suffered a series of grand mal seizures and was transferred to ICU at Flinders Private. The chemo and radiotherapy had not helped halt the progression of the tumour and the pressure in his skull was such that it would soon kill him if he did not have an emergency craniotomy. That evening, we decided to bring forward our planned wedding, and we were married in ICU with my kids, his Dad and dear friends present.

Our first wedding ceremony in ICU Flinders Private Hospital, the night before his big operation.

That surgery, performed by Dr Poonoose, gave him two and a half more precious months of life. After a week recovering in hospital, Anth came home to our care, and, although now unable to even sit up in bed by himself, he loved being home, loved sitting on the front verandah in his recliner, receiving the constant stream of visitors and watching the kangaroos in the paddock. We were also able to get married properly, with a lovely ceremony performed in front of a larger group of family and friends.

Our second wedding ceremony, at home.

In the last month, a large lump started forming on Anth’s head – a psuedomeningiseal – which was caused again by pressure within the skull. Dr Poonoose planned on inserting a shunt to relieve this pressure, but the day before this surgery, Anth suffered a massive pulmonary embolism – clots on the lungs – which meant any surgery was now off the table. While he was being treated for the clots, his swallowing reflex degenerated (due to the pressure in the brain) and he started to aspirate food and drink, causing pneumonia. The doctors told him the only way to prolong his life was not eat or drink any more and to be fed and watered by drip and tube. Anth did not want this. Instead he placed orders for his favourite food – gorgonzola gnocchi – and red wine. He was going out in style. We were able to spend a few beautiful days surrounded by family and friends, reminiscing about old times before the pneumonia set in and he was transferred to Daw House Hospice, where he died on the morning of 8 May, with his best mate, Tony Iasiello, and I holding his hand.

Before he died, I kissed him and then promised him three things:

To look after myself.

To look out for Elsa and Laura and their children.

To do my absolute best to assist brain cancer research and treatment so that others may not suffer as he did.

I hope that, by creating this blog, I may go someway towards this third promise, by raising awareness of brain cancer and, when the time comes, raising money for research. Anth’s wish was that his brain be donated to science. It is now one of the brains which make up the South Australian Neurological and Brain Tumour Bank. In one of his last conversations with his daughter, Elsa, he told her that if he is able to help just one person, then his terrible struggle would have been worth it. Please help make his final wish a reality by donating money to the Flinders Foundation in support of the Brain Bank. You can donate online by clicking on this link: http://www.teamflinders.com.au/default.aspx

Jillian Smith