Homeless

It doesn’t feel like anything else. I feel like someone who has been unconscious for years and has suddenly woken up to another reality, another world I am unfamiliar with. As everything else is so new, so alien – and since I cannot remember the past – I don’t now know what to do, or how to handle that strange feeling of emptiness inside me.

It is not similar to what I felt after the death of my father who passed away in my arms at the end of a protracted struggle with another illness. Yes, my father died at a relatively young age; still, he had lived life to the full. We knew why the illness chose him; he had called it upon himself. He had turned a blind eye to doctors’ advice and opted for a prolonged, slow suicide. But he wasn’t five-and-a-half years old. The life he had was probably longer than the life he would have had.

Luca, on the other hand, was not there yet. As the famous Turkish poet (indeed a close friend of my father) Cemal Sureya said, “every death is an early death”, but he has not had enough of life to be able to say “keep the change”. Not to mention the fact that he did not give up on the future voluntarily. There was no known cause for his disease. The angel of death, who selects one among 1 million children every year, had decided to fill his annual quota with him.

Thus, what you feel doesn’t look like what you would feel when you lose somebody you love, even one of your parents. Since the memories you have collected are limited, when you close your eyes, what punctures darkness is not happy moments or memories. The last few weeks, the last day, in fact the last night – that indescribable, excruciating last night – creep through every single hole, like a lethal chemical gas, filling the void and asphyxiating every bit of emotion it encounters. It leaves only an eviscerated, soulless shell behind.

Of course life goes on. You don’t want to stay in bed the whole day. You cannot sleep anyway. Alcohol, anti-depressants, or different combinations of these don’t work. You don’t want to stay alone, because whenever you do, the chemical gas returns. Just for the sake of living, you are obliged to get by. You try to distract yourself and build a routine that reeks of “the normal”.

And you do. You spend time with close friends who won’t make you tell the story from the beginning and don’t repeat clichés like “words fail us” or “there is no way to describe your grief” (not that they are wrong or you don’t appreciate them; they are a thousand times better than utter silence); you eat, drench your suffering in alcohol, watch the World Cup. Then, suddenly, while chatting about something trivial, you find yourself talking about him. “He loved football too. When he grows up, he’ll play football probably”, you say, and take a pause there. What did I say? Did I use past tense? “Loved football?” Did I say, “when he grows up”? But he won’t grow up. And you reach for another bottle of beer.

Even when you realise you are being emotional, in fact simply irrational, your compass is him. You want Sweden to be defeated by England for example. When they concede a goal, you rejoice. Then you remember that only a few days ago, you were rooting for Sweden – how you were explaining Swedish jerseys to him. “Like the Minions. They have the same colours as the Minions”. He laughs, feels a sudden joy. “Minions!”, he says. Grandfather, grandmother, bonus grandmother cheer for Sweden shouting, “Go Minions!” He wants to stand up, to jump. He cannot. Because he cannot stand up.

When that memory interrupts your fragile routine, your attempts to reconstruct a new “normal”, you collapse. You are instantly detached from the present, your surroundings, even the whole world. If your friends are close enough, they notice it and bring you back to the present, quietly. You return, until the next interruption.

Some time after, you start reflecting on some of the things someone you care about told you, “slowly, step by step”. Or the gentle reminders of his doctors, a mantra you have memorised over the years, “one day at a time”. That all sounds reasonable but weren’t we supposed to get rid of this when all is over, one way or another? Weren’t we going to be able to re-establish the link between the past, present and the future? Why can’t I still make plans about the future? Why don’t I want to remember the past at all?

The present? Well, it is the incarnation of Dante’s Inferno. I have already passed through the door upon which the words “Abandon all hope, ye who enter” (Lasciate ogne speranza, voi ch’intrate) are inscribed. I have started travelling down the concentric circles of hell. I have been conversing with sinners and damned souls hoping to come to terms with anger and the feeling of injustice. Knowing of course that no matter what I do, I cannot bring him back.

As I know that I cannot go back home, that there is no home anymore, that I have lost my sense of belonging, the only thing I believed in, the deepest and most genuine love of my life.

💚

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Living with cancer: What I have learnt, what I will never learn

This piece, originally published in Ahval, was widely read and received a lot of positive feedback from people who had to struggle with cancer, either themselves or via their loved ones. So I am reproducing it here as the audience of my personal blog is different from that of my professional writings. Two clarifications:

  1. An oncologist follower kindly warned me that Point 3 could be misconstrued as implying that genetic factors do not play any role in cancer. Of course it does, in many types of cancer (breast, prostate, leukemia, to name but a few). I was referring specifically to childhood cancers and in particular to neuroblastoma in that paragraph, and the likelihood that the disease is transmitted by the mother or father of the child. We have been informed that the only “statistically insignificant” hereditary factor in neuroblastoma is the incidence of childhood cancer in the parents’ family.
  2. Luca is being followed closely by top oncologists in several countries as it is a very peculiar and rare case (I don’t want to name them as I have not sought their consent), including such institutions and associations as NANT (New Approaches to Neuroblastoma Therapy – http://www.nant.org/) and SIOPEN (International Collaboration for Neuroblastoma Research – http://siopen.org/wp/). The information I provide in the article are based on the knowledge we acquired over the years and our own experiences.

**

18 March 2018, Barcelona

I -we- have been living with cancer for almost four years now. In fact, it would be more accurate to say we have been ‘trying to live’, as our life is quite different from yours. I am not even sure if it is close to what we usually call ‘living’.

Our life has been a roller coaster since my son, who will turn five this Sunday, was diagnosed with neuroblastoma when he was 11 months old.

Sometimes the ride is slow, almost ‘normal’; then suddenly it accelerates, reaches the top; you think you have gotten over it, you walk on air. Then the car starts to go down full speed… Making you feel inside out. It feels you are not going down, you are literally falling.

You keep on falling and falling. You long for a stop, an end to this turbulence. It never happens. The control mechanism has broken down; the person in charge of the ride does everything she possibly can, calls others for help, but the open car does not stop. It torments you – both the victim in its claws and those who love the victim more than anything else.

Some of you may already know the story of my son. Not that we wanted to share it publicly (you will understand why). It was private; private for him, private for us. But the cancer relapsed after a long and agonizing treatment process and the only alternative that seemed promising was available in a hospital in New York. We could not have afforded to take him to New York through our own means, hence we were obliged to launch a fundraising campaign. We shared our story with everyone. True, we have not been able to raise the amount to take him there, but we were surrounded with an unexpected, seamless flood of love. Luca (without being aware of it) has turned into a modest icon that managed to overcome the polarisation in Turkey and to bring thousands of anonymous people living in different parts of the world together. And the money we raised did help him to live two more years.

The moment our story was heard, relatives of many neuroblastoma patients from Turkey reached out to me, asked for help, tried to learn more about new treatments available abroad. So on the occasion of his birthday, I have decided to share with you the little that we have learnt in the past four years with the hope that it might help those who struggle with this deadly disease.

First: Never believe in what you read on the internet or hear from others. Each and every cancer case is unique. Interpret official statistics in the same way. For example, a child who has neuroblastoma at stage four has a 50 percent chance of disease-free survival. But each time there is a relapse, the percentage drops. Yet, as any statistics expert would tell you, even if this possibility drops down to 10 percent, your child could be the one to survive among those 10 patients. Or a newly tested drug might alter the odds.

Second: Never trust anyone other than your own doctor for your child’s treatment. A good pediatric oncologist would be familiar with new treatments and consult her colleagues about your child’s condition anyway. But the reverse is also true. An oncologist who respects her profession would never comment on your child’s case based on the test results you send via e-mail. Almost all advanced treatments are available in Turkey – as long as you have the financial means. But there is still no cure for neuroblastoma; if your oncologist tells you that there is a type of treatment which would fully cure your child without consulting anyone, immediately ask advice from another expert (not by sending an e-mail, but by taking your child to the expert).

Third: Don’t blame yourself for your child’s cancer. Including neuroblastoma, none of childhood cancers (apart from a few exceptions) have genetic causes. It usually emerges at the embryonic stage, when the baby’s cells are developing. Therefore it is sometimes identified even before the baby is born, thanks to new diagnostic tests. In the case of neuroblastoma, the only ‘statistically insignificant’ relevant genetic factor is having a children’s cancer case in the family. But, to reiterate, even this correlation is too small to be taken into account. In other words, your child having neuroblastoma – depending on what you believe in – is either the result of fate or simple coincidence.

Fourth: Children respond better to treatment than the adults. They are stronger; and most of them will not even be aware of their disease up to a certain age. Therefore as parents, you have a great responsibility. The first advice we have received when our son was diagnosed was ‘to treat him as normal as possible and to live an ordinary life’. Enjoy the little breaks when your child is fine; let your child go to school; don’t be over protective.

Fifth: Try not to lose your hope. Yes, neuroblastoma have the second highest death rate among childhood cancers. However, a lot of money and energy is spent all over the world to overcome this disease and it is quite likely that there will be a breakthrough in the next couple of years. To the best of our knowledge, there are at least 30-40 trials going on as I write these lines. These include conventional chemotherapies as well as new treatments (ALK therapies targeting genetic mutations; various types of immunotherapy that teach the body’s immune system to recognize cancerous cells; new methods of radiotherapy or stem cell transplantation; CAR T-Cell treatments based on the idea of removing white blood cells from the body, genetically engineering them so that they can recognize cancer cells and then injecting them back to the body are the first ones that come to my mind).

Here let me quickly address a question that has often been raised. No, modern medicine does not rule out organic treatments. It only demands that the effectiveness of those treatments to be clinically proven. Take the oft-mentioned case of a vaccine which ‘cures’ cancer in Cuba… This is to a large extent a myth. Yes, there is indeed a type of vaccine that is believed to be really effective, but it only works for lung cancers among adults and it is now being clinically tested in the United States. Large pharmaceutical companies would get the patents of such treatments, drugs whether they are developed in China or Cuba, and test them. Apart from that, oleander (zakkum), the herb X that only grows in the Caribbean, the extract of the tree Y, these are all myths produced to exploit desperate patients.

Do these help some patients? Probably. But this does not mean that ‘alternative medicine’ can be used for children or for all types of cancer, offering a cure so to speak. To the contrary, it is very likely that you will make things worse by resorting to such treatments as their long terms side effects will be largely unknown.

The bottomline, then, is not to lose faith in science. Modern medicine discovers everything that works and makes it available. For example, it is known that cannabis (marijuana) oil can be useful for treating neuroblastoma and some other types of cancer. Hence, its medical use is legally allowed in some countries and in some states of the United States. Even in countries it is banned, it is possible to find and use it, as doctors will most likely turn a blind eye to them.

Don’t get me wrong; when I say don’t lose your faith in science, I mean the researchers and clinical doctors who have dedicated their lives to finding a cure. We have have met several of these along the way. They do not benefit financially when they admit a patient to a clinical trial. In any case, these trials are often free of charge. This is not true for pharmaceutical companies driven by profit like all other capitalist organisations. But this means that they do want their drug to be effective as they can make a fortune out of this. This is why, for example, a large pharmaceutical company would not hesitate to get the patent of a drug even from those countries under a political embargo.

In a nutshell, if your child has neuroblastoma, your target should be to extend her life as much as you possibly can without ignoring long term side effects and reducing her quality of life. A few years is sufficient for a revolution to occur in the field of medicine.

Last word. To hope, not to lose faith in science, trying to live a normal life… As a parent who has been trying to coexist with this disease for the last four years, I am very well aware that these words are meaningless at most times. When your child crawls in pain, when she vomits those few bites she has hardly swallowed, when she asks you why she does not have hair like other children, when she melts away in front of your very eyes… Then nothing helps, nothing makes sense.

There is no way to grasp this if your child is not diagnosed with a similar disease. Do not judge those parents; but do not treat them differently either. And do not ever have pity for them. That is insulting to their and the little one’s heroic struggle. There are a thousand ways to support them. A brief text message you send them without expecting a reply or most of the time to just ‘be silent’. If they need you by their side – and they may not, do not get offended if this is the case – try to just sit silently by their side. Without saying a single word.

For there is nothing you could say to someone whose most precious has been hovering between life and death.

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On remembering and forgetting. Or Cancer…

Last Sunday, the 4th of February, was the World Cancer Day. I don’t know how many of you have noticed, but if you are a regular user of Facebook or Instagram, you could not have missed it. You all receive those notifications, or “reminders”, as they call it, right? Remembering squeezed into a simple algorithm that acts as a God-like figure which tells you what to remember and what not to remember. Anniversaries, “happy friendship days” accompanied by haplessly cheezy messages…

I am sure some people find them helpful. Others, like me, hate them, trying to find efficient ways of turning them off for good – as you probably are already aware of, getting totally rid of them is not so straightforward. You turn off one; another pops up. You unfollow someone; it creeps back into your timeline via a “like” button pressed by one of your friends. Blocking is not an option either, for you can block people, but you cannot block Valentine’s Day, for instance. Or another important date that Facebook, the omniscient gate keeper of time and of our minds, thinks we “have to” remember.

But what is wrong with raising awareness with regard to cancer, I hear you ask. Nothing. Unless you are a cancer parent that is. If you are, cancer is your everyday reality. Equally, it is something you wish you could forget. I always think of French historian Ernest Renan’s fitting observation about nations when I see such reminders: “the essence of a nation is that all of its individual members have a great deal in common and also that they have forgotten many things … Every French citizen has forgotten St. Bartholomew’s Day and the thirteenth-century massacres in the Midi.” Cancer is the St. Bartholomew of those whose loved ones have to go through the ordeal of cancer.

I am of course aware that St. Bartholomew is a thing of the past whereas cancer is your present, your “here and now”. But the analogy is not too stretched, as cancer parents forget about the disease the moment their children go into remission. They never think it might come back; they deliberately make it a thing of the past; delete all traces of the suffering their loved ones had gone through to enjoy some sense of normalcy – however brief it may turn out to be.

If you do want to see what childhood cancer is like, however, and raise awareness, then I suggest you check and share the 4 year old Jessica Whelan’s Facebook page who passed away on 20 November 2016 after a two year battle with neuroblastoma. His father, a photographer, released the following picture when they were informed that Jessica had only a few weeks to live.

The black and white photograph went viral, leading some to question the appropriateness of making such an intimate moment public. Andy Whelan who had to face his own St. Bartholomew was unapologetic, and rightly so. His words are worth quoting in full (emphases mine):

“As a photographer it is important to capture the truth and the reality of a situation, too easy it becomes to capture the joy of life whilst discarding the torture that we see.

This is the hardest photograph I have ever made, it is in fact my own four year old daughter. A few days ago she was given what is most likely only a few weeks to live after a battle against cancer that has been waged for over twelve months. This photograph was made in a moment that we as parents could offer her no comfort, her pushing us away whilst she rode out this searing pain in solitude. This sadly, for us as a family, is not a sight that we see rarely. This is now a familiar sight that we see regularly through each day and night, its frequency now more often. This is the true face of cancer, my baby girls blood vessels protruding from beneath her skin, a solitary tear running down her cheek, her body stiffened and her face contorted in pain.

I could try and use a thousand words to describe this image that we as parents are confronted with on a daily basis but these words would fall short of truly depicting the sight we see. With this photo I do not mean to offend or upset, I do mean however to educate and shock those that see it in its context. Perhaps by seeing this photo people not in our position will be made aware of the darkness that is childhood cancer, perhaps these same people may be able to do something about it so that in the future no child has to suffer this pain, so that no parent has to bear witness to their own flesh and blood deteriorating daily.

The only apologies I offer are to those that know Jessica, I understand that this photo is hard to see and even harder to absorb. To those that do not know Jessica I offer no apologies, this is what cancer does to a child in their final weeks and days!!! Before her diagnosis I was one of those ignorant to the darkness of childhood cancer, not truly appreciating the hell that it brings. It would never happen to us! Now I give childhood cancer the respect it deserves, seeing too many children suffering this same fate and watching families torn apart.

If this photograph only serves as a purpose to make people think twice about this evil and put into perspective what it does to a child, then it has achieved its purpose. Research needs to be done, cures need to be found, too long now has this been allowed to happen.

Please I beg of you, as a heartbroken father, it is too late for my daughter, but childhood cancer needs to be cured. No family should have to go through this hell.”

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One day at a time

Imagine you’re an obsessive compulsive person. Dedicated, disciplined, somewhat rigid, disturbingly perfectionist, with a huge aversion to uncertainty. Of all kinds. You hate uncertainty in your personal life, in your work life, everywhere, under all conditions. Life has always been particularly difficult for you since life is, well, full of uncertainties! Worse, you are aware of this. I mean, you know you cannot control external circumstances, yet you still strive for certainty. As much as possible that is.

Then a monster finds your loved one. The monster is called cancer and the monster is unpredictable. Even his name or true nature eludes the doctors. For almost two weeks. When they discover who the monster is, they look into what it can do. But before that, they call you to a meeting, the very first meeting after diagnosis, and tell you a sentence which is supposed to become your mantra for God knows how long: “One day at a time”.

One day at a time? To a control freak parent? To someone who has spent half of his life trying to make things as predictable as possible? And not on some random subject – the most important thing in your life so far.

When will you start the treatment? What will you do? What if a, b, c happens? The doctors, all so patient, reply: “One day at a time!”. You want to scream at the top of your lungs, “But one day, each day, is an eternity! How do you want us to cope with eternity?” They know your suffering. They see through your eyes. You don’t need to scream when you are with them. Because they’ve already seen so much suffering. They’ve dedicated their whole lives to end or at least lessen the suffering. In the case of this monster, not so successfully.

Then the monster is beaten. So you think. No more one day at a time. Days become normal; the future loses its heavy meaning. The present becomes the present, not pregnant with questions, fears and expectations. You start living again.

But the monster comes back. It throws a smile at you and says “I’ve been here all the time. You think you can beat me?” It brings one day at a time with itself. With a vengeance, as relapse means uncharted territory. There are options, but not enough information. No one knows which is best. You have more questions this time and yet they have fewer answers. Sometimes not even one day at a time is enough of a reply.

Finally, you learn. Navigating in uncharted territory teaches you the meaning of “one day at a time” because most of the times, this is all you have! No future, no past. Even the present is squeezed into hours, minutes… You have to do your utmost with what you have. If it is a day, then it is a day. If less, then less.

You learn of course. But you never get used to it. A gigantic caterpillar in your stomach. The void…

 

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Guilt by association

The first, and possibly the longest lasting, feeling of a cancer parent is “guilt”. Shock, anger, pain, desperation are all there; they come and go like tidal waves, but guilt, of different shapes and sizes, never leaves you.

First, you think you are responsible for your child’s cancer. Maybe it was genetic; maybe it was something you did during pregnancy. Experts tell you immediately that this is not the case with most childhood cancers, definitely not with neuroblastoma. The only statistically insignificant correlation is if you have childhood cancer in your family. Neither his mother, nor I did. In any case, even if we had it, it would have been irrelevant, scientifically speaking. Young kids, i.e. babies, develop cancer usually when they are still an embryo. One gene goes awry, that’s all! Chances are one in a million so far as neuroblastoma is concerned. But that 1 (ONE) is everything to you. Like the other numbers you will learn to value, such as the prognosis, the odds of survival with this or that treatment..

When your rational mind takes the control back, the irrational hits back even more forcefully. You become superstitious: what if all of this is happening because of some mistakes I made in the past? Could this be some sort of divine payback? Rationality does prevail in the end, though not before you go through several sleepless nights.

But guilt works in mysterious ways. There is the guilt which makes you think “Am I taking good care of him? Could I have done more? Should I look for more options? What can I do to calm him down when he is in pain?”.

Then there is guilt by association – I wish I had a better term. You want to take his place; you want to become sick in his stead. You feel it is as if it is your mistake that the monster has chosen him and not you.

And the worst kind of guilt. What if things really go wrong? What if you have to make that “fateful” decision? Should you pursue other, alternative, avenues or… We’ve been there once. We’ve survived it; he’s survived it. I don’t know whether I can survive it again…

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(Autumn Sun, Egon Schiele)