My diagnosis: The first hours

My diagnosis came out of the blue. I was still relatively young. I was going to have a baby. I already had three children. I was going to move to Southern Europe. I had plans, I had so many dreams. I was going to travel  in two days.

Was I? Or was I going to die? When? How soon?

(What happened before?)

I am a mother. I had to tell my family. I left the hospital and called my husband on the way to the underground station. I cried and said “I have cancer”. He replied “Oh my god” and then it turned out he wouldn’t be able to be with me until nighttime, because he was on a business trip. He asked me a lot of questions, about the pregnancy, whether I needed chemotherapy immediately… and I didn’t know what to answer. He panicked and I told him I would find out, call doctors, as I didn’t have a clue. I do not want to portray myself as the one who was in charge of the situation. I was not. I was under shock. And gradually I grasped that apart from a few words, I didn’t have a diagnosis.

I am a researcher. I knew that further information was the key for my future decisions. I was on my way home in the underground, tears running down my cheeks, people staring at me. I googled my diagnosis. Landed on the wrong website. Too scientific for me. I called my doctor friend. He just muttered. “Oh sh….!”. And confirmed that I would have to wait for at least two months to find out more about my chances. I was on the way home to meet my children. I knew I would be with them for at least four hours until my husband arrived. I had to explain my tears. It would take an hour to reach the place where I lived. I could find out a bit more. I googled and found other websites. I read that my immune system was going to pieces. That my disease was incurable. But that it could be decades, years or months until I died, depending on the cancer`s progression.

I am a journalist. I was already thinking about how I would communicate the diagnosis to my children. I had to do it. If it was incurable, it would be impossible to withhold information. We would have to make decisions soon, our trip to Turkey in two days, and our move to Southern Europe. I might be dying, but my family life was going to continue to my last breath. Ion my mobile phone, I searched the internet for advice. How should parents communicate their disease to their children? I didn’t find a lot, but after I had read several articles, I knew how to describe chemotherapy in a way appropriate for their ages. They were nine, seven and six years old at that point of time. I called my sister in law and told her that I was arriving … and that I had bad news.

I am responsible. As a mother I have to be. The children were allowed to watch a movie. I didn’t care about their homework and I let them skip their afternoon activities. I sat down with my sister in law and told her what I knew – which was not a lot. Her father had recently died of cancer and she was still mourning. She talked about his last months and weeks. I reckon it should have been a consolation. Nevertheless, I could not relate to the death of an old man and I did not want to listen to descriptions of his dying. After a while I decided I could deal with the children on my own. She went home. When the kids had finished their movie, I took a deep breath and summoned them into the living room. I told them I had cancer. My daughter was deeply affected. A friend of hers had died of cancer at the age of five. My son wanted to know whether I was going to get curly hair. I was confused. It turned out one of his classmates had leukemia, lost all of his hair and when it grew again it was curly. My son assured me that it was not so terrible to have cancer because his classmate was okay, although he could not run as fast as before anymore. My youngest son was concerned about my hair. He needed explanations. Why would I lose it? I was glad about the aquarium story I had found online. If you want to get rid of the evil fish in an aquarium, you had to poison them and eventually some nice ones would die as well. Chemotherapy was the poison for the evil fish of cancer. My hair was a symbol for the good ones. I explained my form of leukemia to them from what I had read in the internet. That I would not be able to fight virus and bacteria as well as before, because my immune system was getting weaker and weaker.

I am a doer. But nothing could be done. Looking back at my frantic research and communication activities of the last few hours I slowly started to realize that I couldn’t do anything about my diagnosis. My husband arrived. I would love to tell you about those crucial first moments with him, but I can’t. My mind goes blank when I try to remember. I guess it was when I gave up and surrendered to what was happening. No actions, just despair.

A cancer to live with

At night, before going to bed, I sensed I had found the right words for my children. I had told them: “Don’t be afraid. I have cancer. It can be something you die of. But it can also be something you life with.” In the following weeks and months my three children would repeat it like a mantra, over and over again: “My mother has cancer. She will live with it. She is not dying. “

The story continues here

Body, Soul
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My diagnosis: First decisions

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