José Luis

Hello, I am José Luis.  I am going to tell you about my experience with leukaemia just as I reach one year since my diagnosis.  I will also tell you about my plans for the future.

One year ago, one telephone call to my home changed my life and that of those around me. 

The call was from the Sant Pau Hospital in Barcelona.  It was a specialist in haematology who was calling to give me the results of some tests I had done.  In a very direct way he told my wife: "your husband came for some tests today in the Sant Pau Hospital. He has leukaemia".  That is how it was.  From the 1st to the 31st of December 2010 I received induction chemotherapy in a special isolated ward.  It was all worth it because when they let me leave on new years eve, I was told that the objective had been completed: "total remission". 

I remember that only a few weeks before, I had returned from a business trip to Germany completely worn out.  I didn't have any energy and I felt really bad.  The anaemia began to attack me quickly and the pain in my bones and the night sweats which left the bed sodden, did not point to anything good. 

I had been in and out of the hospital for two months of uncertainty and anguish, that was sometimes to hard to bear, by the time the diagnosis was confirmed as acute lymphoblastic leukaemia (Ph +).

José Luis 1

In the isolated ward at Sant Pau Hospital

It was a hard blow to take and at the same time a surprise, as up to that point my analysis had always been perfect.  Also, I was a healthy person, who was sporty, without any bad habits (neither tobacco nor alcohol) and with a balanced diet.  However, as I have found out, that has nothing to do with certain cells in your system which mutate and act as they wish.

That is how my fight against leukaemia started.  Now, having had a range of experiences from the diagnosis, to the transplant six months ago, I have gained a bit of perspective and I have some things to say.  Firstly, I want to thank from the bottom of my heart, all the staff in the haemotology department, ward D1, and the day clinic at Sant Pau Hospital: auxiliaries, nurses, and resident doctors.  The work they have done for me in the last year has been extraordinary.  They are an example of humanity, vocation, and professionalism for many other professions.  I also want to thank my wife, my mother, my children, my siblings, my family in general, and my friends who were always there to cheer me up.  They are without doubt one of the keys to overcoming this period, especially Sara, my wife and partner, who has been the most important person throughout all this long and difficult journey.  I cannot imagine how I would have made it through this year of medical visits, hospital stays, chemo sessions, injections, punctures of the bone marrow, tests of all types, a transplant, and much more, without her.

José Luis 2

Sara and my children, Nerea and Sergio.  Consolidation chemo

I have had some hard days, some very hard days.  Although, I think that in any given year, whether you are sick or not, you are going to suffer bad days, right?  I have learnt that the mental state and the ability to manage adverse circumstances and always think positively is fundamental in this battle.  For those who are just starting in this fight, never forget this: your mind runs everything.  If you are mentally strong and positive you have already won a lot. 

The specific type of my leukaemia only had one possibility for a cure: a bone marrow transplant or a haematopoietic stem cell transplant.  I was so lucky that both of my sisters presented me with a possible donation as they have an HLA identical to mine.

José Luis 3

My sisters Chari and Montse, potential donors

At the end of May 2011, thanks to my sister Chari, I was reborn.  As a joke I call her "mum", which makes her laugh, even though she has two biological children.  I dont think I will ever be able to fully understand the enormity of what she has done for me. 

José Luis 4

In the end it was Chari who became my donor. A question of veins.

Following the transplant, my "Charicells" have now been working inside my bone marrow for half a year, and I feel fine.  My recuperation has gone well.  I can't complain.  An acute rejection didn't occur and now I am a phase of control for the chronic graft versus host disease that is giving me some problems.  I have now returned to a more or less normal life, eating what I want, I play sports, and I am able to go out in public without a mask, which are all things I really missed. 

José Luis 5

With my brother Manel 5 months after the transplant

My plans for the future are: firstly, to LIVE (which isnt anything small).  Then I want to continue learning the little lessons that life teaches us.  Experiences like the one I am living help you to understand life a little better.  You are able to see the relavance of different situations and above all you learn how to judge what is important and what is not. 

Helping others also enters into my plans, by telling my story and trying to get rid of the stigma that exists in society surrounding diseases such as mine.   Unfortunately I cannot be a donor of blood or bone marrow.  I will make the most of my time by writing my account in a book, and one day perhaps I will publish it in the hope that it would serve as a support for someone who was faced with the battle against leukaemia.  In my day to day life, I want to go back to doing the things I enjoyed before, going back to work is one of those.  After such a long time away, being reincorporated into the working world would be hugely significant in relation to my recuperation. 

For work I have had to travel a lot but I owe many trips to my wife, who is passionate about other cultures. 

A small hint for those who read this web for one reason or another, I urge you to give anything you can to the José Carreras Foundation (I became a member at the start of my process).  If you can, I think you should become a blood or bone marrow donor.  You cannot imagine the importance for us, the sick people, that a donor is available for both blood and stem cells.  It is an act of complete solidarity and altruism, something that will make you feel proud or yourselves.  I have attached a video about the issue of donation which was filmed in Sant Pau Hospital during one of my times there.

And finally, an intimate reflextion for those who are in a various stages of the treatment: "You have to keep going.  You have to overcome the fear and be sure that despite the uncertainty with which you arise each day, it is possible to get better, and have hope for the future.  Together we can overcome it".

Warmest regards.

José Luis Rodríguez Mohedano

Webpage updated 07/09/2019 16:37:22