Interview with Susana, a leukaemia patient

Susana is 34 years old and lives in Madrid, although lately she has been living in Valencia, close to her parents, as this year she had an umbilical cord blood transplant in the La Fe Hospital in Valencia.

In summer 2008, Susana suffered a terrible blow: she was diagnosed with leukaemia.  After some anguished months with hard treatments, she had an autologous bone marrow transplant.  Nearly two years later, in February the 7th 2011, she heard a word she was not prepared for: RELAPSE.

Susana needed a transplant and her two brothers were not compatible with her.  Luckily, through the Bone Marrow Donors Registry (REDMO), which is a program managed by the Josep Carreras Foundation, we were able to locate a suitable unit of umbilical cord blood, which had been donated by a Catalan mother.  In April 2011, Susana underwent a transplant again.

Now, she feels more recovered and has wanted to explain how this process is: how do you feel? What is it like to live waiting for an anonymous person to save your life?

– What crossed your mind in the moment of the diagnosis?

Susana: First, why me?  why me?  I had done nothing wrong to anybody and I was not a bad person… Why? And why must my husband, my parents, my brothers and my family suffer so much by seeing me suffer?  Why did we deserve that? When this shock passed I told myself: “This is not going to beat me and it is not going to hide my smile; at least, it is not going to have it easy”.

– How was it, starting your treatment?

Susana: I started with chemo to eliminate the blasts.  I was in the hospital for one month, due to the complications caused by my low white blood cell count.  I achieved full remission after the first cycle.  Then I had another cycle, I think a consolidation one, for another month (in October 2008); then, another one in December and finally the Auto-transplant on the 20th of February.  At that moment the big nightmare was over. But on the 7th of February 2011, in one of the check-ups they told me there were blasts again, RELAPSE, the word that you never want to hear.  I went to the hospital again for chemo and to have my bone marrow cleaned for the umbilical cord blood transplant.

– After some time with the treatment, when and how did they let you know that the only option was a bone marrow or an umbilical cord blood transplant? Did you think it was going to be fast to find one?

Susana: When I relapsed they told me the option was a donor or an umbilical cord, but having time on my mind, it was easier to find an umbilical cord.  Mostly every day I asked the doctor if they had it… and what would it happen if they didn’t find one.  The doctor always gave me a lot of hope and told me to be calm as this cord would appear.  It was the first time since I was diagnosed that I the word “fear” entered my body… yes, yes, fear and uncertainty about “what would happen”.  However, the doctor gave me so much confidence that made this fear bearable.  In these moments I was only concerned about
the chemo I was taking to clean all the blasts while thinking that this cord would appear soon.

– How is this waiting period?

Susana: This waiting period generates a lot of anxiety, fear and uncertainty.  You are waiting for the phone call or for the doctor to enter the room and tell you: “Susana, we have a compatible cord”.  This was the sentence I dreamt about every night.  It calmed me seeing my doctor so calm and telling me everything was going “step-by-step”.  So one day they told me: “Chemo is finished, your bone marrow is clean and you are going home.  At the surgery they will be informing you about the steps to follow”.  I went to the surgery and Dr. Montesinos told me: “Susanita, we have found three compatible cords”. I couldn’t hide the  happiness on my face.  It is a mixture of feelings: happiness because they have found the cord and fear of the transplant.

Susana with Javi, her husband.

– How does it feel when one day your doctor calls you and tells you: “there is a donor for you”?

Susana: It is one of the happiest and moving moments of my life.  A baby was going to give me my life back.  There are no words to express what you feel. I knew a hard journey was starting, but at the same time I thought about all the strength that this cord was going to give me. It was time to tell leukaemia: “you are not going to bother me anymore, ¡let me live!”.

– What would you say anyone who is thinking about registering as a donor? What would you tell the mother of the baby that donated the cord to you?

Susana: To the person who is thinking about registering as a donor I would tell them there is nothing to think about.  The life of a lot of people like me depends on people like them, who with a small gesture can give us our life back. I cannot think of anything more beautiful in life than giving one person’s life back.

To the mother of the baby that donated the cord to me I would say: “¡THANK YOU! Thanks to this small gesture allowed me to make my dreams come true.  You have given me my LIFE back and I am going to be able to enjoy all the moments that I lost due to leukaemia thanks to you.  You gave happiness back but not only to me, but to my husband, my parents, my brothers and my family… to all of them, and you made it possible for us to enjoy all of the family events.  I would love to meet you and thank you personally for what you have done, although I would never be able to give you back all you have done for me. Because you really deserve it, I wish you all the HEALTH and HAPPINESS from the bottom of my heart, both to you and to your baby (I called him Jordi, as it was a Catalan cord).

Susana, three months after the transplant

– What do you ask for the future? What are your current plans?

Susana:  I ask for a lot of HEALTH. We do not realize these simple moments as having a coffee with a friend, saying I LOVE YOU, giving a cuddle… till we are in a situation like this.  I really feel like LIVING.  I need to recuperate all this time that the disease has taken from me, mainly to give it back to my husband, my parents, my brothers and my family. Giving them the time they deserve, however it will never be enough. Loving them and taking care of them as they did with me.  Having time to thank them for everything because for a husband, a father or a mother, a brother or a sister, a family, or a friend to see a wife, a daughter, a sister, a sister in-law, a niece or a friend suffering it must be not just hard, but really hard.   I suffered my part and I know how I suffered, but their role is not that easy, because the journey is very hard and you must be very strong to be near me without letting me down.  There were days that I was charged full of energy just with one of their cuddles.  That was all: a cuddle, a kiss, a few words…  I will never be able to forget so many gestures, so many words, but I will never forget my mother’s words: “my daughter, if mummy had been able to, she would have right now lain on the bed and would have gone through all of this and not you”.

I WANT TO LIVE.  I want to enjoy life by roaring with laughter.  I want to take up again all the plans that leukaemia made me put on the back burner, such as living in London, being able to go back to my house in Madrid (I am currently in Valencia, at my parents house, because I had the treatment here) and continuing with my life.  I want TO TRAVEL, TRAVEL, TRAVEL, because it is my passion.  I want to enjoy time with my family.  I want to take my parents on a very special trip.  I want to study and do new things.  TO LIVE!!!  I want to raise people’s awareness of the importance of blood donation and mainly of bone marrow donation.  Making my testimony helpful to people that fortunately or unfortunately will have to deal with this situation.  You can also take a positive side of it and, for me, one of them is the wonderful people I met, that have taken my hand and which they haven’t let go of.  Truly, there were days I told myself: “wow, so many people love me.  How is it possible that there are so many?” We are very close, a very united family, but now, so much more after all of this.

Ahhhh! And another thing I want to do is to get married again (of course to Javi, my husband), organize a party with all our friends because I think that all the love that a person can give it is very clear for me now with everything my husband did for me.

Susana, at a friends’ wedding in September 2011

To enjoy and see my sweethearts, my two nieces, Lucia and Martina grow up.  I suffered a lot in the hospital not being able to see them.

Susana and Javi, with their niece Lucía

I want to thank everybody that made me smile even in the hardest moments. Javi, my husband, for all he had to stand during my time of “isolation” and for the love he gave me at every moment, letting me know that things were going fine.  My parents, for the bravery they had: they never shed a tear in front of me; we said everything with a look.  I want to thank my brothers, for all their daily love and words.  I want to thank my sisters-in-law, for always being by my side and for supporting my brothers and my parents.  I want to thank my aunts, uncles and cousins for always being by my side and for taking care of me.  I want to thank all my friends for their words, their e-mails, messages and support.  THANK YOU ALL.

And of course, I want to thank my dearest Dr. Martin.  He has been like a father for me during all this time.  More than my doctor he is my friend.  Thank you for your humanity and for your loving words day after day.  And of course, all the 7th floor of haematology: nurses, auxiliary nurses, doctors…, all of them.  They treated me like their daughter, always taking care of me and trying to make me keep my smile. All of them are my heroes.

And, of course, THANKS THE JOSEP CARRERAS FOUNDATION for the wonderful job they are doing. You are a really charming team, and I take my hat off to you.  You are always paying attention to all the sick people, their development, and encouraging them with your supporting words… CHAPEAU for the Foundation!

I HAVE A LOT OF PLANS AND DREAMS AND I AIM TO MAKE THEM COME TRUE.