Patients need more education to interact with the system

My name is Toni Montserrat, I have chronic myeloid leukemia (CML) and I live in Sant Cugat (Barcelona, Spain). I was diagnosed in September 2015 at 48 years old. From the beginning, doctors told me that I could lead a normal life taking a drug for the rest of my life (Imatinib). But the reality has been quite different. The medication gives me quite strong side effects: diarrhea, joint pain, memory loss… To add up, I  have to cope with anxiety and depression from time to time. Since the beginning of my cancer journey, I haven’t felt understood by my doctor, who seems to think mine isn’t a serious condition.

Toni Montserrat with her daughter.

Celebrating my 50th birthday with my daughter. 

In my experience, healthcare professionals don’t communicate enough, as patients, we have to find information by ourselves. Here is an example I personally experienced: when my doctor decided to switch my medication to the generic equivalent, he didn’t even tell me. Patients have to be aware of these changes to make sure the new therapy is equally effective and to be alert to possible side effects.

Not long after my diagnosis, I looked for support in Spanish patient groups but I didn’t feel they could help me. It was when I turned to the internet that I was able to connect with patients that were in a similar situation. Thanks to Facebook, I met CML patients from the UK, US, France, and Canada. I’ve realised that Spanish patients don’t share their feelings and are more reserved when talking about the disease. As a result of my experience, I decided to register a Spanish CML patients group (Pacientes LMC) and I became a member of CML Advocates Network, an international advocacy group.

Spanish CML Facebook group

Pacientes LMC Facebook page. 

Not being fit to work

If dealing with CML wasn’t bad enough, things got more complicated when I realised that I wasn’t fit to work and to support my family, as I had always done. Shortly after the diagnosis, I got back to my job as a manager in a small engineering company. But soon I realised I wasn’t able to work as I did before. I got made redundant and I proceeded to do the necessary paperwork to be recognised with a permanent disability. But up until now, the Spanish medical court has denied me this right. My next step will be to go to the civil justice. My case is not unique, there are many cancer patients who are forced to work despite not being fit.

As I wasn’t feeling comfortable with my doctor, I decided to look for another one. I have now a physician that listens to me and understands my feelings. I know I can rely on her. She answers my emails and text messages. The downside is that I have to travel 300km to see her as she lives in Zaragoza, but I don’t regret having taken this decision.

This is part of my story as a CML patient. Although it might seem sad and not very encouraging, I hope my advocacy work will help other patients.

Toni Montserrat, CML patient advocate.

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