I will be 57 in April.
I was diagnosed in 1997.
Many kinds of infections, e.g. ear infections, the flu, fatigue, weight loss, uncontrolled bleedings, and discomfort.
It took about one year before I got my diagnosis, and they thought it was acute, near blast crisis. I went through all the tests for a suitable BMT donor. My sister was a match, but had two relapses.
My GP thought it was a "harmless" infection, then as I had an annual check-up at my work – having been referred to university hospital, I was initially diagnosed with AML (I'm going to die), but then it proved to be CML with a 20 % survival rate after five years. Wuhuu, I have another additional 5 years in hell.......but better than sudden death – was my initial thought as a mother.
My workplace referred me to my GP and he said it was "some kind of leukaemia" and the haematologist told me that I have CML in accelerated, near blast crisis.....So my diagnosis changed from AML to CML.
I thought I had to be calm, so I wouldn't worry the family too much. I did not understand how serious it was at the beginning. Maybe I was in a state of shock.
I had to report sick leave for a while and the family was very much worried, because they all live abroad. My husband believed that I will manage and just had to "stand up". I had a 2 year old son, so I had to concentrate on him. Later I found out that he has autism. So many things to think about at that time.......My surroundings felt I did fine, but my head and heart were exploding.
They were devastated and afraid for my life. Some friends I never saw again.
I was told that I was very calm, and rational, I believed that this will turn out successfully. I had a very good haematologist to talk to. But the fear was always there to die, because I had a 2 year old son, and I felt very young. I had to fight for him.
I had to be strong, because my ex husband did not support me – he was in a state of denial, and the family was very much worried about me. Everyone recalls that I was very calm and trusted that the doctors know what they are doing.
I was sick all the time, so I would spend lots of time in hospital, because of infections. So the first 5 years I was in and out of hospital.
I got divorced, I lost my job, went on pension.
I got married again and refound pleasure in life.
I thought I'm going to die, but I got a second chance, and it means a lot to me! Now I celebrate life every day....not taking it for granted, as I used to before CML.
I was very much alone with my disease and there was no patient advocacy at that time....My aim is to make no one feel alone.
I went on TKI 1 in 2002, and TKI 2 in 2010, because of the relapses, and the t-cell from my sister didn't help, so I survived. I learned about CML, what it means to have CML. I' m so much aware of my body’s reaction to my treatment, and I'm living a good life despite side effects and medical issues.
I had many panic attacks, anxieties, after about 10-12 years after the diagnosis, but a very good psychologist helped me, and I haven't had it in a long time. I have a husband who takes care of me. I'm on a "diet" – no fat and sugar etc as it affects my stomach and my wellbeing.
I'm telling them to get all the information they need, so they can understand the disease, and I'm a good example in surviving, although it has been very tough. Their relatives also need to meet others in the same situation in recognition of their loved one’s situation and state of health/mind.
I have survived, and I managed to go on with my life against all odds, see my son grow up, influencing his upbringing, being a man with good manners and so on. I found a new husband and living happily with his 2 children too...I have dedicated my time to help others in a similar situation – you're not alone, and if I could make it.....so can you (and your doctors).
OH YES. Recently everyone likes to stress "quality of life", but what is it? Cost of treatment/medicine, time with loved ones, economy, recovery, work or pension, self-esteem, recognition of "hidden" disease, acceptance of visible disease etc etc...