Fourteen hours to get to Singapore. I fall asleep in my business-class cocoon. What a luxury. An American sponsor made it all possible. In the United States they say, ‘We love your work – what can we do for you? How can we help?’ In Australia it’s more like ‘Love your work – good for you!’ I don’t expect support or special treatment. Nobody is more special or deserves more than the other. The thing I expect, though, is human warmth, a degree of trust and respect and the security of knowing that we’re all doing our best and always try to help those who are in need of help. It’s cold and wet in Melbourne. Still don’t understand why this became my hometown. I think the creative indifference of the place allowed me to concentrate and develop my work. In all those years I rarely ventured out or mixed with the outside world. Only with a few close friends and during productions would I be inclined to be social. It’s different when I’m in Europe or North America. Yet here I have many friends and many people care. Tomorrow I’m in for a bone scan at the nuclear medicine department. I’ve heard that all hell will break loose if you try to go through the scanners at the airport afterwards. I will be a nuclear time bomb for a few days. And next week the final tests to determine whether I’m eligible for a liver transplant. If I’m not, there’s not much I can do, but at least I know where I stand and which of the many demons that lurk in the dark are to be confronted. I’m facing a labyrinth of contradictions, inside myself and outside. Twice I’ve been told how much time is left. Both times came and went – I’m still here, feeling quite strong and well. I’d surrendered to the idea of dying soon and felt quite at peace with the very thought. Now I feel the opposite. I’m rewriting my script Centre of Gravity and want to live, want to create – finish the many ideas that circle around my feeble brain. I don’t understand this sudden flutter of hope. Nothing tells me I have a future. But I realise more than ever that I’ve been cursed or blessed with a creative urge that still rages, even in the face of death.
From a very kind and knowledgeable doctor, whom I visited in Holland, I received a proper evaluation of my condition. Looks pretty grim, but at least I know the reality. Also now I don’t have to explain to others what is going on. I have found that extremely frustrating. Questions, questions to which I have no proper answers or get so confused that I give different answers to different people. Here’s the letter, which makes it easier to understand the situation.
Dear Mr. Cox
I have discussed your case with two radiologists, a transplant surgeon and a hepatologist. There is a variety of opinions. I have tried to formulate a conclusion, and I will point out what the difficulties/areas of uncertainty are.
First conclusion is that there is cirrhosis of the liver – that is, scarring due to chronic damage, with changes of the normal liver architecture. The function of the liver still is good (mildly disturbed): that is not a problem. It is still to be determined what the cause of the liver disease is. Alcohol has been mentioned: most of us (including the hepatologists) drink more than hepatologists deem wise. I may be wrong, but I do not regard you to be an ‘alcoholic’. There is suspicion that there is increased iron deposition in your body: this might be due to hemochromatosis, an inherited disease in which the body absorbs too much iron that is deposited in the liver and other organs (e.g., the heart, the pancreas, joints) and may damage them. Importantly, amounts of alcohol that are not too worrisome by themselves may become harmful in combination with iron excess. So it is important to know whether iron plays a role. There is a number of ways to get this information: blood tests, a liver biopsy or an MRI scan of the liver (hopefully the lipiodol that was given during chemoembolisation gives no disturbance of the measurements). If iron would play a role, it is of course necessary whether the liver is the only victim or that other organs are affected as well.
Second conclusion is that there are several lesions in the liver. In a cirrhotic liver, a nodule always raises the suspicion of liver cancer (hepatocellular carcinoma, HCC for short). HCC is not the only possibility, because a cirrhotic liver becomes nodular, and many nodules are not malignant. There are several ways to determine the nature of a lesion: the pattern of contrast enhancement in a scan, tumor marker(s) in the blood, a biopsy, or changes over time (if it does not grow, chance of malignancy is very very low). In your case, the lesions showed contrast uptake early (which is consistent with liver cells in the lesion, either benign or malignant), but according to our most experienced liver radiologist, the lesions did not show early washout of contrast (which is typically seen in HCC but not in benign lesions). Tumor markers were negative (which does not exclude HCC). There was strong uptake of lipiodol however. Taken together, the most likely diagnosis is HCC, although this is not 100% certain.
Third conclusion is more difficult: the number of lesions. The most experienced radiologist described 2 lesions, both about 3 cm in diameter, with no change between the CT scans of Jan and March this year. The second radiologist thought that there might be more lesions (one of the lesions might consist of two lesions next to each other – these were described as separate lesions by the Australian radiologist as well – and there might be 2 additional lesions. I am not fully convinced of the latter, as this conclusion was based on the CT scan after lipiodol, which is difficult to interpret.
Cirrhotic livers are inhomogeneous, and are notably difficult to judge on imaging. Your liver is not different in that regard.
Fourth conclusion is about potential spread outside the liver. There are a couple of small nodules in the lungs, which are judged as non-suspect for tumor. I hope that the follow-up scan confirms that. Lymph nodes in the abdomen are difficult to interpret, and are often present in patients with liver disease. Follow-up scans will tell us more, but at this time these do not worry us too much.
Fifth conclusion again is difficult. However, based on my strong suspicion of HCC, my advice would be transplantation. Chemoembolisation is not a curative treatment. Resection of part of the liver is difficult: probably, the capacity of your liver would not be sufficient to tolerate that, and moreover, HCC in cirrhotic liver is often present at more spots (or will develop elsewhere in the liver). This is of course a problem with all types of local treatment: only what is recognised as abnormal is treated.
There are a couple of provisos regarding transplantation. One would have to be as certain as possible about the diagnosis. Perhaps MRI scanning might be helpful (that is, if the lipiodol does not disturb the imaging). Disease should not be demonstrable outside of the liver (lungs, lymph nodes), because it would make transplantation futile. The extent of tumor in the liver is another point. As told, Eurotransplant follows the Milano criteria. That is, HCC is acceptable as an indication if there is 1 lesion of max 5 cm in diameter, or at most 3 lesions, with the largest max 3 cm in diameter. I do not know whether the Australian centers follow these same criteria or are more liberal. Naturally, a patient should be physically and mentally healthy and able to undergo major surgery.
Ideally, a transplant should be done at short notice in order to prevent further tumor growth. If there is uncertainty, some ‘bridging’ procedure might be advisable. This will slow down tumor growth during the waiting time. Chemoembolisation is one such method. There might be benefit in combining this with another treatment modality. We discussed RFA [radiofrequency ablation]. This might be difficult for at least one of the lesions, which is located next to the caval vein: this location makes this method less effective (heat is readily lost due to the blood flow in the vessel) and more dangerous (if heated too much, damage may occur, etc.). Yet another option might be radiotactic radiotherapy (computer-directed towards the lesion).
My hopes would be that screening does not show new problems, that you can be listed on short notice, and that waiting times are short (couple of months at the most).
I wish you, your friends and relatives all the best and good strength in this extremely difficult period. I hope you will be able not to despair but keep on fighting.
If possible, I would be glad to remain informed about your situation.
Sincere regards – Aad van den Berg
I’m extremely thankful to this doctor for taking the trouble to write all this down. I now have a clearer picture and don’t have to try to explain to others what is happening.
A whole week of new tests. Some are being repeated. The rumours about getting on the transplant list are becoming stronger. I’m staying at Kyra’s place, which is close to the hospital. Little Arabella keeps me entertained and in the right mood to face all this. This morning we went with my youngest son, Marius, my closest family, to the hospital to have a meeting and discuss all the things that can go right and that can go wrong before and after the transplant. I think we’re all strong enough to cope with the emotional ups and downs and be patient with one another. As long as I can pass these tests I have a chance. A transplant is not something to look forward to either, but it would give me hope, and hope brings life.
16 June. A hospital bed is like a throne with a view. There’s so much splendid detail in the people around me. Some eyes are fearful, others full of hope. Nurses come and go: some are interested in their patients, other do their job and move on. Nursing is still a special profession. More rewarding in the long run than working in an office. From my window I can see some mountains in the far distance and a large slice of the city in front. It’s a clear, crisp, wintry day. Hospitals are huge recycling factories of blood, sweat and …tears.
A friendly lady has come to see me. She has to evaluate whether I’m emotionally strong enough to face a transplant. We talk and connect. I need to talk. Have been too silent. I talk too much but she understands. She believes in God and in prayer and in a way I envy her, but we’re both human beings – we care and feel comfortable in one another’s company.
This morning the whole physical procedure of transplant was explained: the pros, the cons – the frustrations – the hopes and sacrifices. When you see the photographs of diseased livers and all the intricate technical details about the operation you realise that this is a big task – that the road ahead is difficult and will involve a lot of dedicated people. Life will never be the same, but at least now I have a slight opening to another chapter – a new horizon might be opening up. Very different from what I had before, but maybe with more poignancy, more care and creativity.
Today I find nothing but kindness and love from the people who are looking after me. New blood is being taken, more scans, more trips to the various departments and talking to various doctors. Everything I encounter and go through, I’ve seen in various films or documentaries. Even when it interested me, the full impact never registered. I was always too busy. Cancer happens to other people.
But now, a little flutter of hope has come my way. For the first time in those six months of confusion and despair, grief and anxiety. I feel a little more optimistic about my physical condition. Soon I will know if a transplant is at all possible.
The sacred ancient text the Bhagavad-Gita says that love is interwoven with light, love leads to light, but this light is not ours. It’s given to us by the divine grace of the universe. What matters is not to think much, but to love much, because all creation comes from love and if we want to live more we have to love more. I have cancer. I was told, ‘You have so many weeks, months to live.’ I’m still here because I probably started to love more. My friends and the people who really care have helped me to see this love. Now I can give more. Whereas at first, I thought I had nothing to give. There’s a soft evening glow caressing the window. I want to say to the world – I have enough love for all of you … I’ve moved away from my existence into another, rather distant world. The truth and reality I find there is not as gruesome as the truth and reality I have lived with for the last six months.
I am home for the weekend. What a luxury. I rearrange my room a little, clean up and sit in the sun. There is nothing I want to take from anyone or anywhere, and nothing to give. Living on the edge of the void has advantages. You feel more in tune with life, less confused. You realise how unique and very beautiful life is. ‘It’s the people, oh the people,’ says Sheila Florence in A Woman’s Tale. If it weren’t for the people, it would even be possible to believe in God!
One wonders at times what possesses the human race to behave so badly on this planet. They call you naive when you’re not greedy and stupid, when you believe in peace. The history of Man is the history of madness. We’ve suffered more at the hands of each other than through natural disasters. We have slaughtered, by our own hands, millions of our own species because of greed and blindness. We seek death and destruction as much as life and happiness. Our civilisation has betrayed our true potential and our spirit. God didn’t create us. We created Him/Her. It’s so easy to explore and exploit the metaphysical needs of the individual. The whole concept of God doesn’t come from God, but from professional believers. Most wars are being fought in the name of their God. What a miserable and mean excuse. ‘God is the manifestation of power in Nature,’ said theologian Paul Tillich, in his The Shaking of the Foundation, and I agree.
Today I receive an email from Werner Herzog. He writes about the forest and the birds and the view into the distance and how he hopes that this might give me a moment of cheer in the joyless ward of the hospital. Werner says that I should keep writing and working on my next screenplay and ultimately go under while shooting the film, or the next, or the next after that. He’s right. Werner himself has overcome many obstacles. The legendary story of the making of Fitzcarraldo is well known. A friend brought Werner to my place some thirty-five years ago. ‘I am Werner Herzog’ he said. I thought he was an impostor or someone who carried the same name. He was wearing a white hat like a twentieth-century explorer. It was only later during our conversation that I suddenly realised that this was the real Werner Herzog! Throughout the years we’ve kept contact and meet up in strange places. He acted in my film Man of Flowers and I photographed and played a small part in his film Where the Green Ants Dream. He’s still as prolific as ever and is one of the few personal filmmakers who use the cinema as a means of self-expression and who has retained his independence and integrity.
Three days of selective eating then fasting. Weak and nauseous, I go into the hospital for a colonoscopy and a gastroscopy. Takes me some time to be able to pronounce these words and find out what happens. I arrive at the hospital feeling pretty sick and tired. My good friend Tony takes me there at six in the morning.
Once again, in no time I’m reduced to a helpless patient in my apron, paper underpants and shoes, and a plastic cover for my head. A large man in a wheelchair is being pushed along by a small woman wearing a tightly knitted wig. It looks like a helmet. From a distance I think it is a hat. We laugh hysterically and hide our faces. We go upstairs and I book in as usual. Same questions – different people, but they are kind, and one elderly nurse even knows one of my films and the actors who played in it. Then the waiting game begins again, interrupted by various nurses and doctors asking questions. Although I couldn’t sleep last night, I’m not tired, slightly anxious, halfway through reading The Setting Sun, a stunning Japanese novel by Osamu Dazai. Like Yukio Mishima, he also committed suicide, and his book explains why. Despair, loneliness, fear of failure, hopelessness of the thinking, feeling, struggling mind. ‘When I pretended I couldn’t write a novel, people said I couldn’t write. When I acted like a liar, people called me a liar. When I acted like a rich man, they started a rumour that I was rich. But when I inadvertently groaned because I was really in pain, they started a rumour that I was faking suffering.’
They’ve come to take me into the operating room … morphine, oxygen, tubes everywhere. I fall asleep and dream of beasts. A few hours later a nurse wakes me. ‘It’s all finished. We’ll observe you for a while and then send you back to the ward.’ My dreams are of the past, of my parents, sisters and brother. We’re all so young and walk through long waving fields of longing. Then my children appear, and the tender face and smile of my grandchild.
On the threshold of sleep or awakening, I feel unbearable tenderness and love. My mother rises like a meteor from my singing blood. Oh, dear Mother, dear Mother of my life. I owe you my life, but more importantly, my humanity. How she would suffer now if she were alive and knew the seriousness of my illness. How she would worry and care. ‘If anything happens to one of my children, I would not survive,’ she once told us. Suddenly tears, rivers of tears. I can’t stop. A kind nurse holds my hand, touches my forehead. Meanwhile, talks casually with a patient across the room. From her touch I realise that she cares, that she understands. She gives me great comfort. When I want to thank her, she tells me to be quiet. All these emotions, mixed with memories and dreams, take up only a small part of our lives. Yet that is the essence of life. That is life! The rest is ‘cups of tea and talks of you and me’, as TS Eliot puts it so aptly.
This week we’re waiting for the final verdict. I will know soon if – in spite of my age, lungs and whatever else – I am eligible for a liver transplant.