What were the signs and symptoms you experienced, and who first spotted them?
One day, while I was playing on the carpet, my mother called my name. When I looked up, she noticed a white shadow in my left eye and immediately grew concerned. Despite reassurances from family members who believed it was merely a reflection in my large, bright blue eyes, my mother decided to take me to the doctor. She had also started noticing that I would bump into things more often than usual and would close one eye to focus or make funny faces.
When I was 14 months old, my mother took me along to my brother’s eye check-up. The doctor suggested checking my eyes as well since we were already there. Ironically, this same doctor would later diagnose my retinoblastoma when I was 22 months old, but at that time, he saw nothing unusual.
At the second appointment, the GP initially suspected cataracts, as they were unaware of what retinoblastoma looked like. They recommended booking an appointment with an ophthalmologist for further monitoring. Believing it wasn’t urgent, we scheduled an appointment for 15 days later. During this visit, the ophthalmologist noticed signs of retinoblastoma and, after conducting several tests, confirmed the diagnosis. The tumour was quite advanced and had spread outside the eye, posing a high risk of reaching the optic nerve and brain.
Dr. Camacho swiftly arranged for us to travel to Madrid to see Dr. Abelairas at La Paz Hospital. Within 48 hours of our arrival, my left eye was removed, and I began a series of treatments to eliminate the tumour in my right eye. My treatments included cryotherapy and radiotherapy on my right eye. Contrary to many people, I only had two artificial eyes in my lifetime. I find it leaks and sometimes I get infections, mostly during Winter.
How did having Rb affect you as a child?
From a young age, I always rebelled against my disability. I despised appearing weak or different in front of other kids. This fueled the development of a strong character and a deep empathy for other children with special needs. I would fiercely stand up for them and ensure they were included, often quite assertively.
Driven by a desire to excel, I poured my energy into school, ballet, and dance, striving to be popular. I believe this was my way of overcompensating and, in my mind, distracting from my disability.
As a child, I was very happy and witty, but as I grew into a teenager, I became miserable and frustrated. I struggled to accept my reality and constantly felt inadequate, regardless of my achievements. Since my diagnosis, I have suffered from various eye issues due to the aggressive treatments I underwent.
Navigating life as a child, teenager, and now an adult while in constant discomfort or pain has been exhausting. Performing everyday tasks often requires immense physical effort, despite my outward appearance of being okay. This experience has forced me to develop resilience and strength, shaping my character and approach to life.
How has having had Rb affected you as an adult?
Having had retinoblastoma (Rb) has undoubtedly shaped who I am today. I often wonder who I would be and how I would look if I hadn’t gone through Rb. Would I have achieved more, or would I have been content with much less? Would I still be the brave woman I am today? I am who I am thanks to my experiences and how I managed to approach them. Part of it is my personality, and part of it comes from my parents, who always encouraged me to dare and pursue my goals without limitations, other than my own.
While I have grown comfortable in discomfort and gained a clear perspective on what is important, I remain resilient. However, I also find myself in a constant loop of feeling unsuccessful, like a failure, and unable to simply be content with myself.
Can you tell us a bit about what you do now for work, and also any big achievements in your life?
I started working at the age of 15 with the goal of learning as many languages as possible so I could leave my country and explore the world. I used my earnings to spend summers abroad studying English, aiming to move abroad one day. At 18, I decided to attend university and pursued a law degree in three different countries – Spain, France, and Australia – all supported by scholarships. I worked various jobs, from cleaner to au pair to receptionist, to support myself while doing it. I remember being very conscious of interviews because of my disability and got rejected by many because of it. One lady at Camden Town Market after a whole day trial said to me, we really like you but are conscious of tourists feeling funny about interacting with you because of your glasses. If you could take them off, we would hire you.
My passion was to use my degree to combat discrimination and make the world a fairer place. In Australia, I studied Aboriginal Law. In Spain, I worked with the Red Cross assisting African refugees. By then, I was fluent in Spanish, French, and English, and helped translate their stories and assist with their legal statuses upon arrival in Spain. During my third year at university, I raised funds to travel to a very poor and remote island in Madagascar, where I lived for a while, working with a local NGO on various community projects.
After completing my degree, I explored different career paths. My creative needs weren’t being fulfilled in the legal field, so I transitioned to marketing, starting as an assistant. Today, I am a Marketing Manager for a financial services company in London, navigating the corporate world in the UK.
I am extremely passionate about health and well-being and constantly strive to become the best version of myself through continuous learning and self-improvement. I am working on YUV – Your Unique Vision, which is an online community and space focused on eyes, trends, products and the Your Unique Vision Podcast. I am also starting to do inclusive modelling and look forward to my first campaign.
Our support team provide lifelong support to everyone affected by retinoblastoma. If you would like to talk to a support worker, please contact support@chect.org.uk or 020 7377 5578.
If you would like to share your story, please contact Isabella.greenwood@chect.org.uk.