A Tale of Cancer

On January 27, 2018, Fabienne Berthelot passed away at the age of only 52 years. She was the wife of István Ertl, co-founder of Libera Folio, and mother to their three children, Klára, Ruben and Dorián. In 2013 the literary magazine Beletra Almanako published a text by Fabienne, “Kancerkroniko”. Libera Folio republishes these notes in her memory.

Esperanto: Kancerkroniko
Français: Chroniques de cancer

Fabienne Berthelot.

October 2010: an unusual pain in one arm, which became difficult to move.

January 2011: breast cancer diagnosed, stage 4 of 4: various metastases in the bones, not just in the shoulder. Consequently: initial chemotherapy, palliative.
Prognosis: 5 years after diagnosis 10% are still alive.

May 2011: Seventh and last chemotherapy session.

August 2011: 25 radiotherapy sessions.

September 2011: hormone therapy, plus Herceptin every three weeks in hospital.

December 2011: tumours dissappear.

April, July, December 2012: no sign of tumours.

April 2013: appearance of new metastases in the bones, further examinations, chemotherapy again.

F is for Friends
The cancer beginner already knows, or feels, or has seen from experience that some friends will disappear and others will become friends, but who will that be? It’s like the guessing game Mastermind: is the hidden colour the right one? And how many friends are there? I have imagined them at my funeral: will there be a crowd? Let’s see: 8 members of the family (will my brother Pascal be there?), plus a few from Budapest, plus a few neighbours, plus four work colleagues, plus 15 from the Court of Auditors, plus Thames, plus perhaps my doctors, plus the management of the school… yes, the school and the parents’ association! That adds up, so I think that makes 150 in all! Wow, so many! I’d like to see that! And then, who will be sympathetic? understanding? compassionate? encouraging and positive? Who will be the surprise? I’ve already had surprises: friends I thought to be extremely humane, kindly, understanding and faithful fell silent and stopped chatting or sending messages, while acquaintances visited me, helped me, phoned regularly and were very attentive, sollicitous, cheery and positive. My brother hasn’t taken the opportunity to come back, but there have been friends, enormously friendly friends. That’s a great advantage: to be able to take stock of one’s friends thanks to cancer.

A is for Anna
In July last year she went home to Finland for reconstructive breast surgery. She was not at stage 4, but she was very frightened, her children were worried to death. We met once outside the hospital, and she said it was like a second home.

P is for Pain
When there is pain, when it seeps into everything, you get used to it. At least if you keep still, you can even manage to forget it, provided life is throbbing on around you. But when night comes to send you off to bed, then the pain rises up, becomes insistent, thrusts at you, stings, and turns the night into a sort of long-drawn-out stew. Bones under attack feel like a crushing bag of cement. So when I had a morphine drip I felt revived, my body took on a normal shape again instead of being a mass of sharp bony growths flowing viscously through me in the dark. But because of the morphine the children’s whispers became an infernal din, and the bathroom wall turned bright yellow and psychedelic. I was paralysed, the pain was gone but I lay there dully, surrounded by sounds and colours beyond my control, in nights plagued by Hollywoodesque nightmares. So I decided to cut down on the morphine. Did I want to be a hero? No, I was right! The pain actually disappeared and a strong dose of paracetamol did the trick, without my noticing that in fact the chemotherapy was beginning to work amazingly well.

F is for Flora
She wrote a book, no doubt a very good one. But unfortunately I don’t read Hungarian. She’s very beautiful, above all when her hair is short. But why did she show her damaged breast in Facebook?

H is for Herceptin
€900 per dose, that’s all I know (in France and in Luxembourg it’s not the patients who pay). Every three weeks, starting in January 2011. It’s like mineral water, heavy, fresh, prepared for me, with a dosage depending on my weight. If I don’t turn up it will be wasted, so I have to say when I’m coming. If I put on weight, it costs more. And I put on a lot of weight. Am I costing too much? Am I worth it? I reasoned: they are investing in your old bones because you are a mother, if you were to die your children’s quality of life would be reduced, their future would be at risk and they would contribute less to society, so you are worth it. In the TV channel Arte I saw that in the UK the medicine is not free for patients at stage 4. Of course it’s not worth it, because at that stage there is only a 10% chance of survival! Hell! If I were in a country like that I would have to pay for Herceptin!!! Could I afford it? Yes, we could sell the car, the house, and we even have parents willing to help. Actually, I’m not an old lump of bones. And old patients also get treatment at the same price. But then, why did Cédric, my favourite nurse, ask me recently when I would come off Herceptin? I read somewhere that for someone at stage 4 it’s a lifelong treatment.

Y is for Yosi
I know I’m not Yosi’s only friend, but his passing left me in mourning as if we had been the closest of friends. I felt deceived, because he claimed he hadn’t got leukemia, so why did he have to have chemotherapy? And why a transplant? A donor had been found, he was clearly going to be cured! He always appeared in good spirits, and he passed away so quickly. I felt inconsolable, and without the help of Ella… I always think of him tearfully thanking Tomasz for his work on the Jews of Bjałistok, and that brings tears to my eyes.

A is for Age
In the corridors of the oncology department I saw a young man hardly 40 years old walking with difficulty, accompanied by his parents. The three of them dragged themselves along, in silence, arms limp; it was impossible to tell who was suffering most. There was probably no hope for him.

And once, in the lift, there was a young woman of barely 20 with a carefully tied headscarf, eyebrows smooth, with an ashen complexion but firm skin, and looking dynamic, almost happy, with her mother. Clearly her cancer was in remission. Apart from those two everyone is older than me. It’s a good thing children are treated elsewhere.

P is for Pity
Actually it can be mixed with fear, the two have something of the same look. In any case it’s rather like burial before death. Sometimes I found it amusing, other times I didn’t like it at all, for example when that salesman passed me on the stairs on the third floor of a large bookshop and pointed out that there was a lift. And I had thought I could pass unnoticed. The chemotherapy was over, I was on holiday, I had a lovely wig, I could walk a whole kilometre! But apparently none of that was visible. So I thought: damn, I really am ill then, is it so easy to see? I was a little annoyed! Just when I was feeling better, the bookseller failed to notice?!!

H is for Heart
Cancer is very ungrateful, voracious. Not only does it feed on your cells, but the medication that starves it out, Herceptin, wears down your heart, which shouldn’t be concerned by the treatment. So every five months they have to check whether the heart is holding up. If not, the treatment has to stop. My heart is doing fine, egotistically, it completely ignores the ravages of Herceptin!!

C is for Culpability
Cancer is not a virus that attacks from outside, sent by some enemy, but a sort of internal anarchy that destroys your own cells. “Why did I get cancer then?” If you are a smoker, you can say “It’s my fault, I smoked.”. But if you breast-fed three children, didn’t use hormonal contraceptives for any long period, had a healthy diet, then you are left with the psychological causes. You should be ashamed of yourself! You are a pychologist and you can”t even manage to get your own subconscious in order! You are a good-for-nothing, you somehow wanted it that way. A somehow perverse reaction: “Isn’t that an interesting experience? So many new feelings, new thoughts, new perspectives on time!”

C is for Courage
“You’ll need courage.” That irritates me! What do I need courage for? I don’t understand. This is not a boxing match! “You need to fight! “ Who am I meant to fight against? Against something invisible? Against myself? That’s crazy! As if all you need to be cured is to will it, as if clenching your fists could reduce the metastases. One day I realised that fighting means standing up to fear. So does it come down to “Don’t be afraid”? You may be going to die, but that will be the end of it. Don’t be afraid, they’ll find a cure, don’t be afraid, it doesn’t matter. Whatever, it’s not clear at all. We cancer patients don’t need courage, we need a lot of compassion, patience, presence and laughter … and effective medication.

L is for Leo
When Leo, aged six, died after falling on the pavement in autumn 2011, I thought nothing could be more terrible that losing one’s child. That helped me to put my cancer into perspective. I could cry for Nicolas and Masako and not cry for myself. If I were to die, the distress of those close to me would not be comparable with their distress. I know that comparisons are invidious, but still: the death of a child is a denial of the future. Dying at 47 is not the same. One day I will be able to tell Nicolas and Masako how much the disappearance of Leo helped me. They are the kind of people who will appreciate that. Masako is very Japanese in her modesty and dedication, and Nicolas is very religious, believing that Leo is looking down on us from Paradise.

D is for Death
Of course one thinks about death, or about one’s own disappearance – that is one of the gifts cancer brings: thinking about the disappearance of the future, the unreality of other people’s future, since for yourself there is only a void. What will become of the children? I will never know what they choose to study, what work they do. Will I have grandchildren? I’d like to know, even if I’ll never see them. That’s called negociation. All cancer patients, up to the last minute, try to negotiate like that: I’ll stay alive until my daughter finishes high school. After that, I want to stay alive until she finishes university. Now I understand why people about to die make their loved ones promise all sorts of things before they disappear. That makes it easier to think about the future that will exist only for the others. Anticipation gives life to things that are not going to happen. Later, when I felt better, time became more flexible: the future extended to additional weeks, months, even to many years. Sometimes I put off my death to the age of 60, and sometimes – that’s the whim of a star – I think I’ll live to 90! For in the meantime they’ll surely find additional medications.

O is for Operation
“Did you have an operation?” No, no operation. I’m almost jealous. Being operated on, being mutilated, that’s the tops, a sort of first prize for the seriously ill. After that you’re definitely entitled to a seat for the disabled on the bus. An operation means you have had cancer. Without an operation? It’s not even sure she’s really ill. So there’s clearly nothing terrible, nothing to complain about, and anyway, breast cancer is curable nowadays. Why didn’t they operate? We read somewhere that operating on cancer at an advanced stage, at Stage 4 as in my case, can create metastases, and in any case it was too late … So I heroically explained to those who didn’t know that no, you don’t operate when there are metastases. If I was met with an enquiring, inquisitive look, I then added: “Too late”. There! But a moment later I was sorry: the person went away terrified. So I have stopped giving explanations; now I say that it’s not worth it, and even add that it’s not worth it because the treatment is working. But still, it’s not fair, not for me but for the others, those in stages 1, 2 and 3, that they suffer mutilation. I am lucky. Do I deserve it?

R is for Recovery

Why hasn’t my oncologist ever used that word yet? It would be so easy!!! Recovery, synonymous with improvement, relief, remission, resumption, rest. There’s a great improvement, I am calm, everything is down, I am at peace. Nature is benevolent, I feel great, so am I well again? Ten months after the diagnosis there was no longer any trace of the tumors, neither the little ones nor the big ones. Statistics say that after five years 10% of patients are still alive. And I am only in the third year. Perhaps that’s why I haven’t heard the word “recovery”? It’s true that I am still being given chemotherapy.

T is for Time
The day I was diagnosed I thought it was the beginning of a series of last times: “the first day of the rest of my life”. When the doctor set out for me the probable cause of my pain, I had to go – for the last time – to the school to pick up my son and – for the last time – drive home and pack a suitcase for the hospital, where they were expecting me straight away. Then, don’t think about it. Then, time stands still and is confined to hours and days. No more projects, no more future, don’t think about it. But then came morphine, which helped to get the clock going again, but first sent me into a woolly cloud without any sense of time. The daily hospital routine gave me back a sense of time, albeit outside the real world: the times of visits by nurses, doctors, István, the times of meals and other pleasures. If you are kind enough to lend your body to doctors and technicians, trust develops, and time becomes adaptable.

F is for Fear
Other people’s fear. But cancer is not a virus. You don’t catch it through contact! Still, you can imagine what AIDS patients feel when they tell strangers about their illness. What looks they get!!! I saw in people’s faces their terror, my funeral, the fear of suffering, goodbyes. “Oh my goodness, she’s going to die”, just because I had a wig and an ashen complexion. It comes down to a lack of experience, since those over 50 often ask how I am and want to know what’s new, tell me about their wives, brothers, friends, in positive terms, and I ask for nothing more. István, to vent his anger, tells everyone that his wife has cancer, just like that, heedlessly, crudely, abruptly. But there’s no point in shocking people. I prefer to say nothing, to let nothing out, to keep that for later. I have always liked to think “If only they knew, wait till they find out”, revelling in a sort of deferred revenge. I imagine the reaction a few months later: “But she’s not dead yet? Wow!!!”, and then they’ll admire me!! Like that young trainee at work who told me about her mother’s cancer (Stage 2 or something, so nothing at all). I said that I too had health problems, and she asked “Is it diabetes?” No, metastatic cancer, and then came the satisfaction: “Oh my goodness, I didn’t know. I’m sorry, but you look well.” “Well yes, I am strong.” What a delight, that admiring look. She was someone I didn’t know, it was silly of me, gratuitous. I never did that again.

M is for Moving
I have moved to a different country three times. Moved house even more often. Each time it was a new adventure: new administrative formalities, everything to rediscover, a new vocabulary and new rules to learn, venturing into administrative, cultural and linguistic labyrinths. Moving forward step by step and learning to be autonomous and not miss the opportunities for regular day-to-day life, nor make costly mistakes. Cancer is rather like that: a moving adventure full of surprises, a complicated world with a vast vocabulary you have to adapt to, step by step, a world rich in real discoveries, be it at the cultural or the human level.

R is for the Road
I still haven’t found the road to recovery, but I have faith in a new medicine I’m to be given in July 2013. It costs €5000 a month… so it’s sure to be effective, isn’t it?… But I have found the road to peace. Peace between conflicting feelings: I’m going to live another fifteen years or more, or I’m facing an early death. I am at peace with feelings like that and enjoy life from day to day.

Fabienne Berthelot

English translation: Brian Moon