My diagnosis: First decisions

I am a doer. But nothing could be done about my diagnosis. At least, 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 live with.”

At that point of time, though, I had no idea how long I was going to live with it. Were we talking about weeks, months or years? I wouldn’t know for a while.

(What happened before?)

Yet, my life was going on. My children needed me. And even on the day after the diagnosis, I had to make my first decision. We had planned a backpacking adventure trip to Eastern Turkey, Georgia and Armenia. I was told I had chronic lymphocytic leukemia on Wednesday. Our trip was scheduled for Friday.

On Thursday, my husband wondered whether we should cancel. I asked him to wait. I wanted to think about it. A few days before, I had still been living a normal life. I was pregnant and I had a weak immune system. But I looked normal and I felt normal. I had just found out about my cancer diagnosis. Yet I was the same person, the same person who had believed herself to be healthy and able to go on a trip. “Let’s go!” I decided. “Maybe it is the last time I can travel. It might be our last trip as a family together.”

Before starting our trip, I called a friend who had just overcome breast cancer. She would understand. We talked and cried for a while. She recommended counseling, “chose whatever feels right for you”, she said. I also contacted a CLL patient support group via e-mail. Someone phoned me immediately, comforting me that the time span between having been told about the diagnosis and getting more details was the most difficult part of it all.

In the meantime, a few other people had heard about the diagnosis. On Wednesday I had sat down and written a letter to my children’s teachers informing them about the diagnosis and the difficult time my kids were going through. My son told his friends at school, the teachers had received my letter …I don’t know who started to talk, but it happened. Bad news spread like wildfire. I got text messages, phone calls, had to receive uninvited visitors. I felt obliged to be thankful although I loathed every moment of it.

I remember meeting an acquaintance I in a shopping mall. She knew about the diagnosis and greeted me with the words: “I am sure it won’t be too bad. You are so strong. Would you please revise the texts for my new website? I have been so busy lately, I need help.”  Another one (and I don’t know if that was before or after the trip) called me from across the street, when I was with my children. “Are you really dying?” My kids were shocked. So was I. I could not cope with all those invasions of privacy.

How could I communicate with others not knowing a lot about my disease? I refused to deal with it. I wrote an informative email and had my husband send it to everybody we wanted to be up to date. I specifically asked people to get the news from him and to leave me alone for a while. It was a wise decision. Some people did not respect my wish, yet most of them did. I still have strong memories of a few more toxic situations. At that time, it hurt me a lot more to experience other people’s reactions than facing the diagnosis.

  • Decision number 1: I will talk about my state of health honestly with my family and especially with my children, trying to find the right words.
  • Decision number 2: As long as I can I will travel and do whatever I like –thus living life to the fullest.
  • Decision number 3: I will not discuss my state of health with everybody, as this leads to hurtful situations. My husband will serve as my “spokesperson”.
  • Decision number 4: Instead, I will carefully chose who I am in touch with during critical times and approach those persons actively.
  • Decision number 5: I needed more information about my disease and a structured approach in dealing with it.

The story continues here

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