October 2005

The diagnosis is unambiguous: cancer. But the patient and his wife simply cannot imagine that the happy life they have shared is doomed to come to an end. To have to accept death. How can one accept this, when one loves and is loved back. And now they are hoping until the very end.
By: Petra Thorbrietz

“It is difficult to prepare oneself for death while being busy just surviving”

“It’s nothing”, János declares with empathy, staring straight ahead while driving. But what, if it's not nothing? “Believe me, it really is nothing!”

We had gone to see our General Practitioner as a sore spot on his head, no bigger then a one-cent coin, had been hurting for weeks, and combing his hair kept inflaming it. This spot was slightly red, but otherwise it looked quite harmless. A little tissue fluid had collected beneath the skin. An infection in a root of hair, we believed and this belief was shared by a friend from the medical field. Hence we were sent to a surgeon just around the corner, “… he’s going to open it up, five minutes and it’s all over and done with.”

Alas, his colleague had a different view. “We need to send this over to the laboratory”, he commented tersely once his scalpel had removed a circular piece of skin from the scalp with an audible noise. He closed the wound with some stitches. In between movements he eyed my husband with open curiosity. “Well, you look rather fit otherwise.” I shyly inquired if we had reasons to be scared. “You only need to be scared when you know the result of the biopsy”, he replied while tucking the laboratory vial, which contained the tissue sample, into an envelope.

Great, just great. One week of panic, I thought, being the hypochondriac of the family. Several times already I had thought of myself being mortally sick, had, over the course of long weeks, increasingly worked myself into ever-growing fears, illogically against better knowledge, incapable to ignore any kinds of symptoms. Until my release during a visit at the GP, where I was told that everything was perfectly harmless and that I was healthy. “It’s nothing”, János declares for the third time and changes the subject.

Ten days later we know that the spot on his head is cancer. A carcinoma in the glandular cells and, so it seemed, probably not even the original tumour, but a metastasis. But how could this be? Apart from the pains on his head, János had never had any other kinds of complaints. A computer-tomography of the whole of his body confirms the suspicion: right in the middle of his lung a tumour has grown, not really large, but it had already spread into the surrounding lymph nodes.

“Otherwise the carcinoma would not have become noticeable on the head”, a professor at the Munich Clinics Großhadern states matter-of-factly. “And perhaps we have found it in good time.” But he also adds: “This cancer cannot be healed.” While he quickly fills in forms and documents, adds instructions for his assistants, he quietly talks about gentle chemotherapies, which enable the patient to experience a ‘comfortable quality of life’ during the treatment. One could win time, months, perhaps even years. “But ...”, he adds at the end and looks at my husband and myself. “that doesn’t happen very often at all.”

We were silent as we left the doctor’s office and walked through the seemingly endless corridors of the clinic towards the exit. The diagnosis in all its clearness really left nothing else to be asked. But despite of it, we just simply couldn’t imagine that our life together, our happiness, should suddenly come to an end. “I don’t want to die”, János had told the oncologist clearly and matter-of-factly. “I will try the chemotherapy and I will fight.” Months. Perhaps years. Our steps echoed through the corridors, corridors I would walk through so very often in future, he less and less. There were one hundred days left until his death.

It is difficult to prepare oneself for death while being busy just surviving. The routine-business of the clinic engulfed us without mercy and hardly left us any time to ask sensible questions. At seven a.m. blood samples were already taken at the day-clinic. Just a little moment later we were clutching a notice-slip and heading for the X-Ray-Department: X-Rays, bone scan scintigraphy, ultra-sound scan of the heart, check of the lung capacity, endoscopy of the bladder, endoscopy of the stomach.

As my husband, a Hungarian national, had never really learned to speak German, despite our 15-year marriage, I was present during most of the checks, was needed as a translator. I found it rather difficult to translate the dispassionate medical terminology in a neutral way, allthewhile the doctors searched for more cancerous tumours. “Space-developing occurrence” – with such totally abstract terms the doctors kept death at bay while describing the uncontrollable growth of a tumour. But after a ten minute dispute between two doctors, it was found that the suspicious thickening within the lymph node in the throat was in fact harmless and not more metastasis. We had been lucky this time.

“Fear paralyses, therefore we suppressed the threatening death and clung on to normality”

Fear paralysis, therefore we suppressed the threatening death and clung on to normality. In the waiting rooms of the treatment rooms in the day-clinic, the women knitted scarves or filled in crossword-puzzles, while their husbands talked amongst themselves about the latest side-effect of their chemotherapy. From the infusiforms besides their chairs the poison dripped into their veins. Some patients had been coming here for years already, others looked as if they were here for the very last time. But after five, six hours, they all said their good-byes and left for home, perhaps to a very short life outside the clinic.

“Well, all the best, keep your chin up, maybe we see each other again next time!” Who really knew?

If they can cope with their cancer this easily, we will manage it, too, I thought during the first few weeks. But then the speed of the developing cancer overtook our power of imagination and capability to react. Only a short while ago the Head of Oncology had congratulated us because the three-dimensional X-Rays of the computer-tomograph had shown no further metastasis. “Well, perhaps you have had a bit of luck.” But just a few days later a few ‘spots’ showed up on a bone scan scintigramm of the skeleton: tumour cells within the spine and pelvis. “This is not really good”, the assistant doctor of the day-clinic mutters in an embarrassed way after I insisted on knowing the results just before the end of his working-day. I had known that the result would be decisive regarding the life-expectancy. The doctor was quite obviously relieved when I didn't ask about the consequences. I didn’t want to hear the answer nor did I want to translate it for János.

Now that the illness was visible, it seemed it developed faster and faster. Punishing pains in the bones caused János to have tears of agony in his eyes; day in, day out, the pains wouldn’t allow him any kind of peace, no matter his posture. The morphine didn’t seem to have any effect. The professor speeded up along the corridor as I fell in beside him to beg him to help my husband, who was writhing in pain on a bed in the day-clinic. “To soothe the pain in the bones we need to use radiotherapy – but do you really want us to interrupt the chemotherapy? We would lose precious time”, he called back at me over his shoulder before he saved himself and disappeared into his office. “Once the chemotherapy becomes effective, the pains will also lessen”, the ward doctor informed us, also being in a hurry as usual.

It was only later that I found this to be an excuse. The poisonous infusions only have a very limited effect onto the tumour cells within the bones. Radiotherapy would probably have fought the pain a lot better. But the doctors noticed by the blood-count that the cancer was spreading itself over the whole of the body very fast and decided to continue with the chemotherapy. They thought to have a better chance to prolong his life with their decision. They wouldn’t tell us just how sick János really was.

Death is the enemy of doctors. They don’t really like to talk about death, as if that would make the Grim Reaper appear. But just why didn’t I ask more precise questions? Why didn’t János ask me to make more precise inquiries? Our friends had long since fallen into embarrassed silences whenever we aggressively talked about further chemotherapies. The doctors had nervous-compassionate expressions on their faces when we asked if the vitamin-infusions and the medications tolerated one another. And our neighbours uttered phrases like “Hope is the last thing to die”. They had all already resigned themselves, I thought and felt very lonely and betrayed. “Just accept that he is going to die”, even a very close friend commented, “don’t torment him with all those therapies, but concentrate on having a wonderful time with him of what remains.”

To have to accept death. How can one accept this, when one loves and is loved back? “If both of us should have to die now”, János had once said to me, “then we would just simply hold on to one another and it wouldn’t be so bad at all.” But to be left alone behind, this is what I couldn’t imagine. Never ever in all my life could I imagine this. Wasn’t love something wonderful, something extra-ordinary, something unique? How could one possibly force love below the laws of probability, beneath the cool logic of a five-year-survival-rate? “Don’t listen to them all, they just don’t understand”, my husband told me over the phone tiredly when I called him late at night at the hospital because I had suddenly become so very afraid. Against all odds he wanted simply to live, for me and for all the other people he loved.

So we refused to accept an end. We stared – despite nausea and pain, despite depressing blood counts and rising fever – we stared straight ahead towards the little point of light at the horizon which was getting smaller and smaller. We hoped unwaveringly, wished with tremendous effort for the one thing we desired, even when it shrank away and became smaller and smaller pleadings. At first I hoped that János would be one of the very few people to defeat lung cancer or, at the very least, would be able to survive with it for many years. Then I begged for the doctors to be at least able to remove his horrendous pain. I wished for him to sit up in bed again and eat a roast chicken. Shortly before he died and was already lying in an artificial sleep, I hoped that he could feel my hand which was holding his – and that he would perhaps answer its gentle pressure. And then I only thought that he could die ... without fear.

“Sometimes it’s better to give up”, the young assistant doctor says. He is a doctor of palliative-medicine, the special ward for the seriously-ill patients, where János had been moved to to lessen his pain. “But hope can move mountains and sometimes it can heal”, I replied defiantly. “Only on television”, he smiled tiredly. “Here we rather experience people suffer because they simply cannot let go.”

Regarding palliative-medicine I had only a real vague idea of what it was all about. I gratefully accepted the sudden warmth and affection which surrounded me within this ward. It was much later that I realised that this warmth and affection was only possible because here they had given up fighting the illness with everything possible. “Life isn’t everything”, the young doctor-in-charge told me months later. “We try to open up new spaces for hope – to facilitate the search for honesty, reconciliation, for purpose.”

During her first visits she made János cry because she didn’t explain what was possible, what could still be achieved, but showed compassion instead. “Now you have to cope with a lot all at once …” – “They were just too nice”, he sobbed when the doctors had left his room and the tension could finally be let go. And for the very first time I saw his fear.

Did I leave him alone with it? The last fortnight of his life I stayed at his bedside, night and day, but I still didn’t want to believe what I was seeing. ‘Metastasis of the liver’ was written with a sweeping script across the green notice-slip which we were given before heading for the X-Ray Department. I folded it so János couldn’t read what was written on it.

The oncologists had only explained that due to a light fever the next chemotherapy would have to be postponed. But that nice palliative-doctor, who usually took his time for a chat with us, left the room rather hurriedly after noting down the new dosages for the painkillers, his face even more grey then it usually was. The next of his visits occurred in the company and protection of his colleagues. “One of the vertebras has disintegrated”, he told us. “We could cement it back together, but afterwards we would have to use radiotherapy on the surrounding vertebras to stop the tumour-cells spreading. This means we would have to interrupt the chemotherapy.” And after a pause: “Afterwards we would have to check if you immune-system could cope with further treatment.”

Totally exhausted, János had fallen asleep halfway through the conversation. But before he had simply told the doctor: “I want to be healthy again, I will do anything you tell me to do.” Then his eyes fell shut. At this moment I felt ashamed for his naivety – or was it my own? “Actually, he knows”, I stammered, then became unable to talk because tears shot into my eyes and my throat closed up. Actually, I knew – since much longer then I would have admitted to myself. Four and a half day later János died.

I see the trust in his eyes and his words are haunting me. Did I let him die in false hope? Was it wrong to believe in life until the very end?

The ward-doctor was the same age as János’ son. He had tears in his eyes as my husband lay dying. Yet he had chosen to become a palliative-physician because he wanted to accept death. But being an oncologist he daily faced the question which kind of hope carried the patients and which kind of hope carried himself. Should he encourage and motivate his patients to face a long and often senseless fight? Or should he prepare them for a hopefully gentle end?

János suffered such terrible, horrendous pains that not only the doctors, but most of our friends wished for him to die quickly. Not me. Against all reason I hoped for a miracle, and this miracle did happen, albeit different from what was really expected. One night he woke up out of his artificial sleep and presented me such a tender farewell as I could never describe it. There are some things which simply are stronger then death.

It’s been 18 months since the authoress of chrismon, Petra Thorbrietz, lost her husband. Now she returns to the clinic to find out just why hope is stronger then reason.

The art of emotional support:
How to deal with relatives of seriously-ill people

Traugott Roser, protestant pastor of the interdisciplinary centre for palliative-medicine at the Munich-Großharder university clinic.

CHRISMON: There is a person, who is suffering from cancer. Firstly, he is a sick person, but friends and acquaintances already see him as doomed to die, see him as dying already. A girl-friend tells the wife: “Just accept that he is going to die.” Why are people so fast in giving up a seriously-ill person?

TRAUGOTT ROSER: It doesn’t matter how high the chances of healing are – and with cancer they are very different indeed – people believe that when the word cancer is mentioned death himself is standing at the door. But it’s not different to any normal life: each lifetime has a limit, there death will eventually come along, too. But people don’t see it that way, and because of this, they remove themselves from this phase in the life of a patient and the family, they only think: how much longer? While the affected people think: live now! They want to take part in this life as long as possible, they focus all their strength on it ... These are really different perspectives of life.

Relatives receive the advice: “Don’t torment him with therapies, concentrate on having a wonderful time together of what remains.” Motto: off to Mallorca …

ROSER: That, of course, is utter rubbish. The illness itself is a torment, one couldn't go and sit on a beach for two years and witness one sunset after another. This type of advice shows just how much our imagination has been influenced by movies dealing with cancer: in movies everything leads towards death, a good death. But in reality, the members of the family have a very different thought in their heads: They fight for the life to go on, and for this they accept it when ... let me put it a bit more drastically ... they accept it that they have to go through a really shitty time.

Let’s assume that somebody I know receives a bad diagnosis. The relatives tell me about it - what must I not do under any circumstances?

ROSER: Never ever tell any comparing stories! As in: “Oh, I know somebody who received the same diagnosis and then died six months later …” or: “She really went fast.” That kind of talk is depressing. The only person who could say these things is a person who is affected. You should keep your good advice, recommendations and your own diagnosis to yourself; instead you should help others with inquiries about how to express themselves.

What if the relatives cling on to a tiny bit of hope, but I personally cannot believe in it for one single moment. So what do I answer if somebody tells me: “And next year we're going to be doing this and that and so on …”

ROSER: Simple let them talk. Because there is somebody who is fighting for his future. And one can be sure that relatives as well as patients, even if they live in perfect ambivalence, have doubts time and again …

So I could reply: “Yes, it would be nice if next year you could …”

ROSER: Exactly. That would be great. Or maybe: I hope that you will experience this together. Basically to give them support. Because everything else will be experienced by the people affected anyhow, one shouldn’t deepen it. Just listen to them unconditionally, don’t have a sceptically expression on your face but a well-meaning one, this way the people affected gain trust, perhaps enough trust to talk about their doubts and questions and not be punished for it. After all, there is also a return reaction: Stop talking about this now! Perhaps it’s all too soon still!

The conversation is usually about the patient – what could I possibly do to help the relatives?

ROSER: This is a very important issue. Many people make inquiries with the relatives and family to check how the patient is doing. They then have to repeat the same story a hundred times over, but they rarely have the possibility to talk about just what they themselves are going through at the time. So simply ask: What is it like to spend three hours each day in hospital, to continue working, to look after the kids, to make countless phone-calls because lots of other people need to be kept informed? What does it mean to be totally wound-up at all times, and also ask what it means to never be able to let everything sag and to look at oneself as being the one who is suffering?

And do you really believe that, being an outsider, one could simply ask and accept the answers about the ups and downs of doubts and the dealing with hope without commenting on it all, this really helps?

ROSER: Yes! Considering that listening and asking are really difficult tasks indeed. But one could say something else, too: You know what … I’m going to light a candle in church for you. Or one says: I’m going to include you in my prayers. I’m going to ask God to look after you, after your family. These are small things which are very supportive indeed and felt as such by the affected people.

The questions were asked by Christine Holch