A chronic odyssey: no remedies, but referrals

You know these forms you get when you see a new doctor. The ones, where you are asked whether you are pregnant, addicted, suicidal or whether you have any other serious disease. Until recently, the mention of my asthma and pregnancies were not alarming to any of my practitioners. Cancer is. Suddenly, specialists don’t seem to be in charge anymore and an endless journey of referrals begins.

Even before being diagnosed with CLL, my immune system was extremely weak. Even before, I tried to find solutions for recurrent infections. It was difficult enough. My diagnosis has not made things easier, but more difficult. I will give you two examples, both quite recent:

Last spring, I was losing a lot of blood whenever I had a wound. It could take days before a wound stopped bleeding. Also, they did not heal well and there are still many scars. I went to see a general practitioner who (hearing about my cancer) felt he was not in charge and referred me to a hematologist. I could not get a specialist appointment earlier, so I saw a doctor about it six or seven weeks after the bleeding had become more or less normal again. He said that massive blood losses were a sign of my leukemia worsening. Yet he told me that six weeks later, the losses would be apparent in my lab results, but the cause would be impossible to determine.  

In fall, it was even worse. I had feverish attacks for three months. They came and went, had an enormous impact on my daily life and could not be stopped. I suffered from a lot of additional virus infections as well during these months. I went to see a general practitioner again. Same story. Cancer – go to see your specialist. This time, I got an appointment about two weeks after the feverish attacks had stopped. I talked to a physician who called himself hematologist. He did not seem to know a lot about chronic lymphocytic leukemia. He even said so. He mentioned that it was not his specialty. When I informed him about my health problems, he had the best advice ever for me. He told me to wear warmer clothes when the weather is cold. He might have realized that I was getting rather angry, because in the end he referred me to his colleague, who (quote) “might know more about CLL”. Two months later, I got an appointment with his colleague who knew more in fact. However, she said that my problem might be linked to CLL, but could also be linked to my asthma, my anemia or other immunological factors. Everything had to be ruled out and checked. She said she wanted to observe my blood for a while (6 months) and then she would refer me to pulmonologists, immunologists, nutritionists and many others.

I attend each medical appointment with so much hope, but usually I leave my doctors and I am more frustrated than before. I don’t get pills, I get more appointments. I lose time. Time which is so valuable for me. My health deteriorates, I get weaker and more tired. I don’t have the energy anymore to see all those doctors who have no remedies, but further referrals to offer. 

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