CML Hub__>__Patient interview – Rita from Denmark

Patient interview – Rita from Denmark

__25 March 2019
How old are you?

I will be 57 in April.

When / how long ago were you diagnosed with CML?

I was diagnosed in 1997.

Did you have any symptoms before you were diagnosed? If so, what were they?

Many kinds of infections, e.g. ear infections, the flu, fatigue, weight loss, uncontrolled bleedings, and discomfort.

Can you describe the diagnosis and how long it took?

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.

If it is relevant, and not covered by your previous response, was the diagnosis correct at first? What did the doctor think it was?

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.

Can you describe who you saw, and the healthcare setting, when you received the diagnosis?

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.

Can you remember any thoughts or feelings you had when you first got the diagnosis of 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.

How did the diagnosis affect you and your life?

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.

How did your friends and family react? How did it affect them?

They were devastated and afraid for my life. Some friends I never saw again.

How did you deal with your feelings? Did you find that any specific activities / past times / emotional outlets / people helped you?

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.

Can you recall how your feelings changed over time, if they changed, once the diagnosis had sunk in, and how you felt later on?

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.

What impact would you say CML has had on your life?

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.

What has changed?

I got divorced, I lost my job, went on pension.

Have things stayed the same?

I got married again and refound pleasure in life.

How does it compare with what you expected when you were first diagnosed?

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.

Have you found that certain things or people help you to live with 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.

Can you tell me how you have adapted to living with CML?

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.

Can you describe any specific challenges you have faced since you were diagnosed and how you have overcome them?

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.

What advice would you give if you were talking to someone who has just been diagnosed with CML, or to anybody living with CML?

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.

We’re interested in making this a positive article for people with CML so can you tell me about positive things you’ve experienced about living with CML?

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… can you (and your doctors).

Is there anything else you’d like to add about your diagnosis, or about living with CML, that has not been covered in our questions?

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…