“But I don’t want to die!”
This is what Anthony said when the doctor gave us the terrible news that the reason he had suddenly developed weakness on the left side was because he had a brain tumour.
Of course he didn’t want to die. He was 51 years old and he had everything to live for. He was a successful business executive, he had two teenage daughters, and he and I had just started our lives together in our home in the South Australian countryside.
But only 5 months later Anth was dead. He battled bravely but the fight was already over even before he knew it had begun. That is because he had one of the deadliest forms of brain cancer, a grade 4 glioblastoma, which had already started to spread into his brain stem.
When the doctor showed us the first scan, we were incredulous. The huge white blob in his brain obviously shouldn’t be there. How on earth could he function at all with that in his brain, let alone walk, talk, crack jokes like he always did and run one of Adelaide’s major law firms. It beggared belief.
Anth never went back to work after diagnosis. Except to sign the will one of the partners had drawn up for him. This cancer was aggressive. There was no cure. There was a slim chance treatment could extend his life. But at best we were talking months, not years.
The problem with brain cancer, and glioblastoma in particular, is that it is usually diagnosed in the very last phase of the disease. It sits silently growing, invading, until it starts manifesting with physical symptoms. With Anth it was the left sided weakness and a limp, which he had noticed only a few days before going to see the GP. The GP thought he might have had a stroke and sent him to the hospital. The hospital did a scan and found the ugly cause of the problem. Anth was dying.
Looking back on it, there were other signs. For a long time beforehand, a number of years, he had suffered mood swings. He had been to the doctor about this, who had diagnosed mild depression. But the mood swings became more and more frequent, to the point where I could set my watch by them, at 7.30 every evening my sweet, funny, good-natured man would morph for no apparent reason into a bad tempered shrew. The change would be swift, his face would change ; it was as if I was living with two people; Good Anth and his evil twin, Bad Anth. I begged him to see a doctor, it seemed something organic was going on.
In my view, that first visit to the doctor, some protocol should have been followed to rule out brain tumour. But no such protocol exists. Even though all medicos you will speak to will agree that mood swings and personality change are common symptoms. If you also add headaches into those symptoms the case for a scan becomes even more convincing.
Many will say, and in fact his treating doctors have said to me, that it would not have mattered if he had been diagnosed earlier. Gliobastoma is such an aggressive cancer that by the time it is detectable, it is already too late. What’s more, the medical world is largely powerless to fight it. Surgery, radiotherapy and chemotherapy is the usual treatment. Surgery only if the tumour is considered operable. Drug trials for immunotherapy and a new treatment with the drug Avastin are also possible, if you’re lucky enough to get on a trial. But that’s only if you’re unlucky enough for the radio and chemo not to have worked. If not, these second-line experimental treatments are available, but at great cost, as they are not on the PBS.
Quite frankly, if you get gliblastoma you are fucked. Fucked with a capital F. Unlike many other cancers there is currently no possibility for early detection to improve survival rates, there is essentially no effective treatment (average lifespan from diagnosis to death is 5 to 7 months). There is no known cause and certainly no cure.
There needs to be more research. But research costs money.
Before Anth passed away I promised to do whatever I could support brain cancer research. He was very keen to get involved in this cause himself and met with the Flinders Foundation Charity for his story to be recorded to bring awareness to the disease and to assist fundraising efforts. Anth also donated his brain to the SA Neurological and Brain Tumour Bank in a very practical and selfless act to assist brain cancer research.
So when the Flinders Foundation suggested I come on a bike challenge in Cambodia of all places, all I had to do was think of Anth to know I had to accept. Anth went through so much physical and spiritual suffering in his last 5 months. The least I could do was to leave my comfort zone and put a bit of physical effort in to ride a few kilometres. But equally important, was to make the most of this opportunity, to live life to the fullest, to appreciate each and every moment. I owe Anth that.
When I was in my early 20s I went on a trip to Western Australia with friends. We stayed on Rottnest Island and hired bikes to get around. One night, we rode the bikes to the lighthouse. It was pitch black – no moon – and we could barely see the road in front of us. Except every 10 seconds or so the beam from the lighthouse would sweep across the landscape and very briefly light the road in front of us. That was enough to show us the way. I think cancer research is something like that Rottnest bike ride. There is a way and it is briefly illuminated when breakthroughs light up the road ahead, just enough so you can see where you are going. Our fundraising can give that light a bit more power, a bit more energy to light the way ahead.
Please help me and the Flinders Foundation team raise money for cancer research by donating to the Cycle to Cure Cancer bike challenge.
Thank you.
Jill x
Anthony Mazzone 