The only symptom I had was a little pain in my shoulder, which I thought was caused by stress. That was until I broke my humerus and that is where my journey with Giant Cell Tumour of the Bone (GCT) started.
Originally from Colombia, I was taking part in an exchange student programme in Brazil for one semester when I was diagnosed with GCT.
I was only 23 years old and it was very hard to accept this new reality. When I was first diagnosed with GCT I thought I would die from it.
In May 2016, whilst in Brazil, I received the most aggressive treatment and had surgery where my humerus was replaced with a titanium prosthesis. This meant I had to spend around two weeks in the hospital.
Luckily, my sister got married in Brazil and my Brother-in-law helped me find the hospital. My surgeon was Dr Luis Gustavo Ferreira dos Santos, a very nice doctor who helped me and continues to help me all the time, even today. All my treatment was at the CRER Hospital in Goiânia City.
After all my treatment, I found it very hard to come back to my home city. At the time I was missing the last semester of the final year of my bachelor’s degree and was so depressed that I even thought about not finishing my degree. I did not want to face people and wanted to hide. I got really depressed, however when you hit rock bottom the only way is up. With a lot of support from my family, friends and a psychotherapist I could finish my bachelor's and continue with my life.
Now, 5 years later I am very happy to say I am tumour free and no longer have a fear of dying. I have learned that we as humans can adapt to any new situation.
Of course, it takes time to get use to the new reality and sometimes I am still struggling with it, but in a better way. I remember when I had to tell my history to others, it was very hard, and I felt that I had been so unlucky in getting sick.
Now I feel that I have a very powerful story to tell and that makes me feel proud and courageous for all the things that I have lived though, and I have achieved in my life.
In general, my life has changed in many ways. Now I need to be so careful with my metal shoulder and have to avoid crowds and am unable to play sports. I also go to the doctor for a general check-up every year and I struggle with the paranoia of having another disease. Even knowing that in every airport you are going to set off the metal detectors has been an adjustment.
From my point of view, having a rare disease makes you see the world from different perspective and I’m still learning a lot from this experience.
I have had so many positive experiences, the most important one being that I've met so many nice, supportive and lovely people around the world. That makes me believe in humanity and kindness. The negatives experiences, besides the pain, were the cruel remarks from some people about my new incapability's. Also, I really miss doing some activities that nowadays I cannot do, like ride my bicycle or play volleyball. The good thing is that I found another kind of nice activity, calligraphy.
The happiness of living gave me the strength to continue in this process of learning, always with the support and love of my family and friends. Also understanding that you cannot control life, but you can control the way that you live it. It is okay to feel the world crumbling down around you as you will find inner strength. We do not need to deal with this all on our own, it is okay to ask for psychological help for you and your family.
I believe that raising awareness can help lead to earlier diagnosis and could help people receive the proper treatment. There is not as much awareness about bone tumours. It is necessary to raise awareness to increase the research into the disease and its treatments, like prostheses, with the view to improving the quality of life for people.
Below is a drawing Alejandra received from a kind friend, Yapi Comics.