Patient Stories: Support and Coping
“How have you built a support network? Where have you turned for connections, advice, and support?”
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“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.”
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“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.”
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“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.”
“My family and friends are my support network. Some of them took the time to read about HCL. I waited a while before telling my daughter, and she may have struggled with my diagnosis the most. I was selective about what I shared with her so that she could remain optimistic and not become overly stressed about my diagnosis. My workplace has also been very supportive, allowing me to work from home for as long as needed and to take sick leave when necessary.”
“My medical follow-up has primarily been with my doctors. I have not had contact with other people who are going through the same situation. My family and friends support me emotionally. My wife, in particular, has been with me throughout the entire process and has remained by my side since the beginning. ”
“My family stood by me throughout my experience. The HCL community on Facebook was also very helpful, and several of my neighbors, bosses, colleagues, and friends supported me during the difficult times.”
“I have read all the articles and stories on this website. It has been very helpful. My doctors in Atlanta and Ohio State have been great at answering my questions and explaining what’s going on. After 17 years and no treatment, I got pretty well educated on Hairy Cell.”
““Although I searched social media and websites, I found it difficult to connect with other patients. Fortunately, I have had the support of my family and friends from the very first day. I also sought help from a psychologist, who referred me to a psychiatrist. To this day, I continue receiving support from both professionals.”
“Fortunately for me, my wife worked in hematology during the early part of her career and studied diseases such as HCL. She was also able to quickly locate a support group for me and research new treatments for the disease. I think it helped that she came to every appointment and treatment and kept notes on the details of what was discussed, my questions, the answers and my progress. She kept family and friends aware of my progress which saved me from reviewing the details with multiple people over and over again. My friends have been very supportive.”
“My friends and family made sure we were fed with healthy food during my treatment phase. I did not leave home, except for doctor’s appointments, during the initial 90 days, so daily phone/video contact with friends and family was very important.”
“I am a 3 year survivor. My support group has been family and friends. Long after I got out of hospital and started healing, the Leukemia Society of Canada started having local meetings. We would share our stories and chat about different types of leukemia.”
“My support network is family and friends. I have not been able to meet or speak to anyone else who has had this condition as it is so rare. Also whilst in the hospital, I learned I was one of very few who had been treated for it there. Most of the nurses hadn’t heard of the condition. Family and friends have done everything they can to support me, from taking me for appointments, visiting me in the hospital, and keeping my morale up.”
“I really don’t have family other than my wife and 2 kids. I have an 18-year-old and an 8-month-old baby, they were my emotional support and were always at the hospital with me. They even moved an extra bed in the room for me due to me not wanting to be alone and my anxiety flying through the roof. I even opened a GoFundMe page because I did not have insurance.”
“My support network consisted of my wife, who was always a fierce advocate and sometimes a mediator between my oncologist and me. Following the success of my treatment, my oncologist and I developed a deep respect for each other that lasted for years. I also consider the Hairy Cell Leukemia Foundation to be a major part of my support network. Through HCLF, I was able to review the latest studies about my disease and communicate more knowledgeably with my oncologists. I continue reading new studies because you never know when you might need that information.”
“I have some lovely friends that walk the walk with me. I try to keep my adult children on the periphery because they have children to raise and are busy and I simply don’t want them too heavily involved at this time. My parents are 1500 miles away and 90 years old, so I don’t turn to them. I have joined the patient forum and am hoping for more variants to emerge. I find this is a very lonely journey though because no one understands!”
“I don’t talk about this much with my relatives or friends, but mainly because I do not feel sick. So on a daily basis, I tend to forget I have this disease. Besides, my family still feels a bit scared of it; either they think I have nothing at all, or that everything is in my mind. So, they prefer not to talk about it.”
“We kept our friends and family close and in the loop. We asked for help when we needed it, especially when Nick had to spend time in the hospital. Nick was never afraid to call his nurse/doctor to ask questions and determine if he needed a follow up.”
“I have received a lot of information from the Hairy Cell Leukemia Foundation, I listen to many workshops, and I have a group of people who speak Spanish with Tricholeucemia on WhatsApp. It has been very helpful”
“Fortunately, I have not needed much support because I have felt very well at all times. My family lives far away, except for one brother who has been 100% by my side—both on the phone and physically during hospital admissions and treatments. The rest of my family and friends have been kept informed or have checked in, but I have not required any additional assistance. My children also knew from the very first day, and with a clear explanation, it only brought them reassurance.
Another very important network of support and information has been a WhatsApp group made up of patients and former patients from Spain and Latin America. Many of them are very knowledgeable and well-informed, thanks to their own experience with hairy cell leukemia. ”
“I did not know anything about the disease when I was diagnosed. I started researching it online, in both Spanish and English, and found an English-speaking Facebook group for patients that was very helpful.
Through that group, I discovered the Hairy Cell Leukemia Foundation website, which became an even greater source of support because of the quality of its information and scientific research. I also contacted the José Carreras Leukemia Foundation in Spain. Although it specializes in other types of leukemia, they researched HCL for me, shared my case on their Facebook page, and connected me with a couple of Spanish patients.
Together, we created a WhatsApp group that has continued to grow and now includes members from several Spanish-speaking countries. This group has contributed greatly to connecting Hispanic and Latino patients with HCL.”
“I’ve been very happy with my support network. I have a very kind and wonderful wife who takes excellent care of me. I am truly blessed! My son and my daughter also help keep me smiling. My father kept me company during some of my infusion sessions. There’s always been someone there. My doctors are all talented and committed to helping me stay in remission as long as possible and keep up to date with new treatment options. I was excited to find the Hairy Cell Leukemia Foundation a few years ago and that was another new opportunity to get more information and for me to stay informed on what’s happening with hairy cell leukemia. Nice to get on the patient forum from time to time and see if I can answer a question for someone or ask a question if I need some help. I’m also a musician and enjoy playing music with my friends at least once a month and that keeps the happiness quotient high. I also enjoy going to church and visiting with my fellow congregation members and they help me stay positive as well.”