XI

Kyra writes a letter to the surgeon in Holland who’s been of such great help in explaining and advising us.

I am Paul Cox’s daughter Kyra and wanted to write and ask you a few questions, which I hope you don’t mind. If you haven’t the time to reply at the moment, I completely understand. I wanted to know a bit more about the transplant/donor process in Holland and if it would be possible for my father to continue there. I feel it would be better for him, professionally and emotionally to be in Europe. He has been approved for transplant here and has of course had all the appropriate tests done. Would he have to go through this testing process again in Holland, or could he take across the existing information and results? He is at the top of the waiting list here and I assume if he were to return to Holland he would be at the bottom of the list again? Would this be different because of the cause of his liver damage? We are unsure if he would have a better chance of earlier transplant here or there due to the different donor culture in Europe. Any information you could give us would be much appreciated. Thank you very much for your help.

Kindest regards,

Kyra Cox

He replies:

Dear Mrs Cox

I apologise for the delay in answering your question. It took a while, but gave me the opportunity to discuss your father’s case with one of our transplant surgeons who has worked for a couple of years in Australia and therefore knows transplantation medicine here & there from the inside.

With respect to your questions, the following: in principle, it would be possible for your father to continue here. I presume that we run the same kind of tests when screening a patient for transplantation. Most likely, these would not need to be repeated. In your father’s case, the status of the liver tumour needs re-evaluation from time to time (we typically repeat the CT scan of liver & lungs every 3 months), but undoubtedly this is being done in Australia as well. Apart from this, your father would be seen by an anaesthetist, a transplant surgeon, and by a hepatologist, after which a formal decision to accept your father could be made. Apart from that, he would have an interview with the transplant nurse and social worker.

Waiting lists work differently in Holland compared with (what I know of) the Australian system. In your system, each transplant centre has its own donor region. In case a donor becomes available, the transplant team determines which patient will receive the donor liver. This will be determined by the perceived urgency. We have a national list containing patients from the 3 Dutch liver transplant centres. The position of patients on the waitlist is determined by the American MELD system. This scoring system is used to measure illness severity in liver transplant candidates. It uses three laboratory values (bilirubin [the parameter for jaundice], creatinine [a measure of kidney function] and INR [a measure of blood clotting]) to calculate a score that is predictive of the risk of death within three months on the liver waiting list. At the time when he was in Holland, your father’s MELD score was relatively low, but this may have changed – he might now occupy a 2nd or 4th position, depending on his numbers. This MELD system is not fair to patients like your father in whom the function of the liver does not adequately reflect their risk (one may have normal lab values yet harbour a very deadly tumour). Therefore, under certain conditions patients with liver cancer may receive an ‘upgrade’, that is bonus points, which puts patients higher on the list. As a drawback, this bonus is only given after a minimum of 6 months on the list.

You should know that the position on the list is not all-determining. It often happens that a liver is not accepted or not suitable for the first patient waiting on the list, or that a specific transplant centre has no capacity to do the transplant (as they are busy doing one, or have no ICU bed available, etc). On the other hand, only 7% of our population have blood group B; this is higher in Australia (because of the Asians, among whom B is much more frequent). Waiting times for a B liver might therefore be shorter over there, especially when high up the list. In Holland (as in Australia, as far as I know), we do not prioritise on the cause of liver disease. If we have good reason to expect that alcohol will not cause problems, the patient will be treated just like the others. Patients who are truly addicted to alcohol will not be accepted for transplantation.

I realise that a waiting list is a morbid kind of lottery, and nobody can tell with certainty what offers the best chances to your father. Yet, my colleague and I are convinced that there is no reason to believe that he will be transplanted earlier here than he would be in Australia. The level care in Australia is excellent (I have seen detailed results of two centers, and according to my colleague they are ‘typical’).

And finally, as I most likely have told your father before, this waiting time is a horrible experience, and I myself would prefer the relative comfort of my ‘own’ country and the presence of my close relatives and friends.

More explicitly, the only reason to advise your father to come here would be if the chances of finding a donor in Australia would be judged to be poor. In that case, I expect that the team caring for your father would contact us (or any other team they would judge appropriate); I would do the same for my patients (it happens sometimes).

At this time I wish you, and of course your father strength and courage. I hope the transplant will be soon.

Sincere regards – Aad van den Berg

I respond to this generous doctor’s email:

My daughter Kyra, showed me your extraordinary detailed answer to her letter. Many, many thanks. You are a remarkable person and I feel extremely honoured and grateful for the attention you’ve given us. You’ve also made it easier for me to decide what to do and where to go. From all accounts it’s better and more sensible to stay here, be patient and hope for the best. That I’ve come this far is already a miracle of sorts. In a few weeks they’re doing some more tests, x-rays and scans. We shall keep fighting the good fight!

Warmest regards

Paul Cox

This correspondence speaks for itself. The surgeon who’s been so generous with his time – with his concerns, is a rare individual.

Some ten years ago I made a film called Molokai – The Story of Father Damien. Father Damien was a Belgian priest who at the end of the nineteenth century went to Hawaii as a missionary. He lived among the sufferers of leprosy, caught the disease himself and died among the people he loved. Yesterday, 11 October, he was canonised and after ten years of fighting with the producers, my version of the film was shown on various European TV stations. They often say there’s justice after all, but this is more like a miracle. Nobody could tell me where this version of the film came from, as the producer went bankrupt – so miracles exist after all.

A few years ago, I wrote a small contribution for a collection of essays called ‘My One True Love’. Last night before I fell into a dreamless sleep, the man in the story appeared to me – waved from the distance, smiled and then turned back towards the mountains. I’m exorcising him from my life and death by repeating the story here. I don’t relate to the ending any longer. I don’t love my imminent demise. I want to live.

MY ONE TRUE LOVE

For the one true love of my life I want to embrace a rather large picture.

The largest of them all. A thing called death. Please read on …

The first five years of my life during the Second World War, I witnessed nothing but death and destruction. Half the population of the small town we lived in perished.

I was always immensely relieved when I came home and our house was still standing and our neighbours still alive. It caused me and others who had crawled from under the ruins a profound fascination with death and decay.

I kept looking for the skull behind the face. A rather indulgent preoccupation. It wore me out.

But I was extremely fortunate. Found a profession in which I could express myself, learned to treasure life and always tried hard to give both the good and the bad my loving understanding.

Many years later, I met an old man in Nepal with a mission. I met him seemingly by chance – yet I wonder … He was a noble Italian gentleman with a great passion for beauty and the arts. We shared a meal in a small restaurant. An old shepherd sang songs from the mountains and children offered flowers.

It was one of those evenings that helped you change.

Before we parted he said, ‘When the time comes we must be able to will ourselves to death.’

He quoted Rilke:	I would like to walk
	Out of my heart
	Under the wide sky

Then he said ‘Adieu, my friend,’ and disappeared into the night.

The next morning his body was brought down from the mountain. I saw his face frozen in time and space. A marble sculpture – eyes wide open – his mouth like the Buddha – infinite and timeless – freed from all mortality.

I still see his face and I still carry the little book he gave me. It is Tagore’s Gitanjali (Song Offerings). In it I read, ‘I know I’ve loved this life and because of that I shall love death as well.’

I stopped looking for the skull behind the face. Tried to find the human heart. It hasn’t been an easy search.

Our civilisation of instant gratification is so out of touch with death that most people one meets have never seen a dead body. Many die by themselves in a white sterile room, drugged out of their minds, surrounded by strangers. There’s also always some miraculous excuse for death. Recently I heard that a ninety-seven-year-old man died of cancer. I think he died because he was very old and very tired. May he rest in peace.

We seem to have taken the wrong turn. We don’t understand life any more, or love for that matter, and consequently are out of tune with death. Death as we know it now is spending our earnings on things we don’t need. Death is the manufacturing of guns, bombs and land mines. Things no one needs. Death is building cities as drab and grey as possible. Death is emptying the oceans of life and polluting our rivers and waterways. Death is celebrating the wrong gods for the wrong reasons. Death is denying our children to dream of the future. Death is the politics of greed, hatred and ignorance. Death is lost to the living.

My friend from the mountains was right. Poverty and nakedness and even death are nothing, provided there is tenderness, provided we’ve learned to live without fear.

In the face of death everything becomes more humane, more alive. In the face of death only true love makes sense – harmony, peace, warmth, gentleness, kindness, words that have almost disappeared from our vocabulary. All the ambitions, all the career moves become meaningless. In the face of death we can find our true spirit.

All we have to do is return the key and our claims to the house and maybe expect some kind words from families and friends. No more noisy, loud words. ‘People deal in whispers near the dying,’ says Tagore. Now we have time for ourselves and can think of all those we have loved and how we have loved them. Life could be like that …

Oh yes, death is my true love. The true love of my life. I couldn’t live without it.