"Hello, my name is Carmen, I am 47 years old and I have just received some news that has changed my life. I have been diagnosed with Acute Lymphoblastic Leukaemia with positive Philadelphia chromosome.
A long name for something so short: a deadly disease that has no immediate cure. I have a 3 year old daughter and a wonderful family, in addition to some irreplaceable friends and colleagues. A further little point is that today, the 6th of March 2007, is my wedding anniversary".
That is how Carmen experienced the diagnosis and today she explains to us the full process of her recovery from the disease:
"Since then until now, 2011, I have received many spinal taps and bone marrow samples that have been so painful. During the treatment I was told that my only brother was not compatible for a possible transplant. What is more, it would be necessary to carry out 6 cycles of consolidation chemotherapy in order to prepare me for the bone marrow transplant, in the event that an unrelated compatible donor was found.
For each cycle it was necessary to go into hospital for continuous transfusions, vomiting, feeling bad, and tiredness, etc. Everything was weak due to my defences being so low after several cycles of chemo.
Carmen, before the disease in the summer of 2006.
The process was going well, despite a lot of discomfort and tiredness, until the 4th cycle when things became more complicated. On the 13th of August 2007, I suffered a septic shock caused by E.Coli. I was rushed to intensive care where I stay for 15 days hovering between life and death. After that, I passed 2 months in the ward with many pains and necrotic wounds in my arms and legs with unknown cures. It was like starting again, I had to learn how to walk. It was really hard; I couldn't lift my legs even 10cm and I didn't have the independence to carry out my most basic needs. However, I am a strong person and I would not let the loss of 20kg during this period defeat me, despite the constant tears, desperation, and loneliness that came over me time and again.
It was the summer of 2007 and from my window in the hospital room I could see the terraces of Juan Bravo Street in Madrid, with all the people enjoying their lives. How I envied them and wanted to be there and not in that small room! It is curious, that when we are healthy we don't value the small things in life but they become an insurmountable barrier when you are closed within four white hospital walls.
The 6 cycles of consolidation that were previously planned became 4. As I entered remission after the first cycle the doctors felt that it wasn't necessary to give me more so they began the preparations for the transplant.
It is funny how I remember the dates without a problem but I have forgotten the pain of the spinal taps and bone marrow extractions. The terrible pain in the back was caused by problems in my spine from the loss of muscular mass. The only way to alleviate my pain was to receive all kinds of painkillers.
My guardian angel arrived from the USA by donating the bone marrow that allowed me to hope. On the 13th of December 2007 I finally had a new bone marrow.
Carmen, with her husband celebrating their anniversary in 2009, 2 years after the transplant.
Sadly, after the transplant things did not improve because I had GVHD (Graft versus Host Disease) with all the symptoms: diarrhea, vomiting, skin irritations, fever in the afternoon, back pain, weight loss, mucositis....and some that are still with me like drying of the eyes and mouth.
Following the weight loss after the transplant I was a low as 46 kg from the 70 kg weighed when I received the diagnosis.
It took me a year to really see the light after the transplant, but little by little I began to do the things I had done before. Yes, I was able to sit on the terrace like I had seen others do from my hospital room. I was getting better, bit by bit. A medical tribunal declared me as permanently disabled and I was like that for 2 years until I decided to ask for permission from a tribunal to go back to work.
You might ask why I did this, and the answer is simple: I needed to rediscover my old life. That is why I went back. However, I have gone back to my old routine with an awareness for the little moment that normally pass us by.
I also want to remember the better moments during the disease like the wonderful people by my side and friends who helped me with the most menial tasks like helping me to get up out of bed. Many people called and were worried about me and my friends at work even helped me to create a personal blog. Above all I want to thank my husband, my daughter and my family who never left my side.
Carmen and her 6 year old daughter during a cruise in 2010. They won 1st prize!
Thank you also to all those who I owe my life to for helping me in the most difficult moments. Above all I want to say that there is hope because we have a health system that works and is one of the best in the world.
I hope that this has been helpful to you, just like all the little things that have helped me to overcome this disease: the disease that has a long name but is so short.
Become a member of the cure for leukaemia and haematological malignacies, HERE
Find out more about bone marrow donation, HERE