“My family understands what's happened to me and the limits I have now and help me to carry this, but my disease is also their worry. I have the direct phone number of the specialized hematologic nurse and it's never a problem when I call with a question or a problem. Also my GP and his assistant know what happened. So when I have doubts, it's never a problem to ask for a lab test. I don't have to explain. It's not easy to explain to friends and colleagues. Sometimes, completely out of the blue, I feel really tired in a strange way, just like I have a body made of lead. Strangely, resting doesn't help; it's a different way of being tired. So sometimes I have to cancel appointments even though I look healthy on the outside. I was at the Hairy Cell Leukemia Foundation meeting in Germany a few years ago and found out that most of the patients I met experienced the same. So for me that was very valuable; it was not something in my head. I finally understood that it had to do with HCL or the treatment.”

“My wife has been my main support. She made sure that my care plan was in order. We planned what we would ask about before we saw the doctor. She came with me to all appointments, took notes, and asked questions. Often, I just sat there like a bump on a log. She also did a lot of research. I didn't want to have to explain my medical condition over and over, so I created an emailing list and sent email updates to friends every two weeks or so for about three months. Then I decided that there was really no additional news to tell, so I told my friends that my treatment was finished. For several months, I avoided doing research about the disease and did not visit the website of the Hairy Cell Leukemia Foundation. This was a mistake. The Foundation has a great site and now I visit it two or three times a week. I go on the patient bulletin board and try to reply to the posts of others; I hope it will make someone feel less alone, even if I don't have a lot of relevant information to add. Also, I recently found on the website information about a clinical trial that I may qualify for and I've started the process of enrolling. This gives me the feeling that I'm seizing control of the situation and that I'm not helpless in the face of this disease.”

“I noted early on that HCL is rare. That told me that there would be little broad exposure and or regular studies and reports for me to access. I found the Hairy Cell Leukemia Foundation to be of comfort in that I could attend webinars, connect with others and also get a general sense of the experiences of HCL patients at various stages of their post-diagnosis lives. I continue to stay current through the foundation and hope to be an active and informed member of the HCL community. I consider myself to be extremely fortunate and have a much more positive outlook about life and the future than even before my original diagnosis!

At times, I found myself having to be strong for my family. Once I learned what HCL would be, I knew it wasn't likely to be a long and painful road ahead that many might associate with other forms of leukemia. Once I showed my family that it was under control, I knew what I needed to know, and that I was feeling great, I sensed that they followed my lead and were able to discuss my condition without pure emotion. Part of my journey is to tell friends and colleagues about my condition and then immediately alleviate their concerns and fears for my well-being.”