My name is Isabel, I am an oncologist and I want to tell you our experience with a young patient diagnosed in 2003 and with no treatment options. She was our sister Merce, who was just 35 years old and whose death left four little children ( the youngest one year old) orphan.
When the happiest moments of her life seemed to have arrived, with a solid and enviable family, when she had just had her first daughter, she received the most severe blow. It was May, 2003 and we were in a family gathering. Everything seemed fine, but my father, worried, told me: ”Look at your sister, she keeps on limping”. Quickly, I turned to observe her; it was certainly striking how much she had worsened in two weeks. She had been in rehabilitation for six months, when her pain in the right part of the pelvis started. I didn’t like it, so I asked her to come to the hospital emergency department the following Tuesday to get an X-ray of her pelvis… how painful it is to me to remember the image! How harsh the radiologist’s words still echo in my mind, telling me that “all the acetabulum had been destroyed”!!!… Even today the words are echoing in my mind, and I can distinguish clearly the image of horror… How could I talk to her? What could I say to my parents? I hospitalized her but I didn’t tell her the truth; it was so cruel that I thought she wouldn’t be able to endure it. An MRI was performed to look for the primary tumour and there it was: she had an enormous tumour in the left kidney and she had multiple metastases in bones and nodes. How could she imagine it? She thought that a hip fracture is solved by operating and that everything would be fine… Little by little she realized it was more serious, and her question was always: “Will I survive?” And I couldn’t tell her the truth. I needed her to be strong, to fight… but… where were the weapons? This was the worst for us, we walked with her, keeping her company across a vast desert where we were unable to see the horizon, where we could not even glimpse an oasis to drink a bit of recovery… and every night was a rude awakening, realizing life ends and there isn’t a way out…
This is what happens to the patients who have a rare cancer; these patients see how life comes to an end and they don’t even have the opportunity to fight. They and their families feel a hopelessness difficult to describe, being such a heartbreaking experience.
In spite of all, Merce was given a bone marrow transplant in the summer of 2003, to carry out an immunological control. She was 38 days isolated in a room in the Clinical University Hospital in Valencia; 38 days fighting, with just one person next to her and unable to see her children. She was patient, hopeful, obedient…because she wanted to fight. Merce was basically a person full of hope, joy and optimism. Deep down, I think she was convinced that it will end well and this was positive for her and for all of us. But fate shattered our hopes and a bit later, in the IVO, she underwent an experimental treatment with Aplidina, which was not successful and brought complications.
Gradually her candle was going out, the tumour invaded the bone marrow and she didn’t produce red blood cells. She became exhausted easily and we kept her alive through blood transfusion every two or three days. Because she had an objective: the First Communion of her two elder sons on the 8th of May. And she reached it, stuffed into a white dress that hid her polymedicated body, on her wheelchair, with her moon-like face. That day she made her face up and she wore a big straw hat. She saw the boys receiving communion and then, during the lunch, overwhelmed by emotion, she asked us to take her home. She was very tired and she couldn’t stay on the chair. That day we talked; and I knew that she was totally aware of her condition, but she needed confirmation to organise things in her life.
Maybe she had known from the beginning, but she didn’t want to surrender. I think it mustn’t have been easy for her to come to terms with the idea of not seeing her children grow. However, she never complained to me about it. I saw how she endured the pain and sickness the illness caused, but I also saw her accepting the deformities and limitations with resignation. She lived bound to a wheelchair for 11 months, she was separated from her children more than one month, and she always wanted to go on. Merce would have wished to live a long life on her wheelchair, enduring pain, if instead she would have been allowed to see her children grow.
From that day on my sister was a better person for me; she was an example of acceptance of adversity, an example of serenity in contrast with the sadness the people who went to visit her usually felt. She was a person ready to raise our spirits in her last days. She was such a good and kind person that she didn’t stand to see her loved ones suffering, this is the reason she never talked about her sadness for leaving us.
Her light went out in the early hours on May 16th, 2004. I will never forget her last words, taking my hand; outstanding…”I am sorry, Isa, I’m complaining a lot.”
For years we didn’t want to look back; the pain produced by the loss of such a young and loved person was too acute for the family. Luckily, our parents managed to recover from the blow and our nephews and niece are growing strong and happy. But the scars remain and in spite of time being a healer, they still hurt with the cold. For our association, Merce’s story is an example of how this illness can shake a family.
We often turn a blind eye to the miseries and tragedies of others. We never think we can be hurt by an earthquake or a tsunami. From our safe position we watch the sufferers with no empathy, because it is difficult to stand in their place.
PHEiPAS wants to make us understand real suffering in a real family. The suffering of a real woman and her children who have been growing up without a mother. It seeks to move us closer to life’s hardness, to understand that there are no resources to investigate these rare tumours. If Merce had had a colon cancer or a breast cancer her life would probably been longer, but it was her fate to have a tumour with no treatment in that moment.
Dedicated to all Merces, to all parents, to all spouses and all the children of the patients who have died young with no option to fight.