We spoke to researcher Clare Stothart about her latest retinoblastoma research:
Hi, I’m Clare and my daughter was diagnosed with bilateral retinoblastoma at the age of 2 years and 8 months. At the time, our son was a baby and my husband and I were 29 years old and suddenly thrown into an unimaginable and traumatic world, that we would always be a part of from that day forward. We had to learn to navigate not only having two young children, but also: a treatment plan for our daughter; our weeks being filled with multiple hospital appointments and all the challenges this created; travelling from Yorkshire to Birmingham every 3 or 4 weeks for the Rb clinic; and most importantly, caring for our sick daughter and our baby boy.
In a strange way, this new routine was more manageable and felt safer than when the critical treatment period ended and we were left to pick up the pieces of the life we thought we would have and the new reality we now found ourselves in.
I was not working at the time of my daughter’s diagnosis, as I had a young baby and we had moved north prior to his birth, so the plan had always been that I would start work once he was 1 year old. At the end of my daughter’s treatment, this milestone had already passed and finding work that would allow me to have a minimum of a day or two off every month in order to travel to Birmingham Children’s Hospital and other appointments was really challenging.
I am a qualified teacher and so I tutored as a means of providing an income. Since then, I’ve had various jobs within the education sector and beyond which have always had to be part time and with limited commitments outside of the official working hours in order to ensure that I can care for my daughter and take her to appointments and, more importantly, look after the welfare of my family, ensuring that they are able to cope with all they have been asked to deal with. It shouldn’t go unremarked that this is my proudest achievement and my most rewarding work, as all three of them are growing up into wonderful people who are kind, caring and resilient beyond their years.
They are now nearly all teenagers and starting to go out in the world and forge their own paths. As a result, their reliance on me to provide that intensive, continual support and nurture has changed and gradually more space has developed over the years for me to start very, very slowly building some sort of career for myself. Until recently I worked as a learning support assistant in various schools, in order that I could work more closely with children with additional needs. Because of my experience as a mother to a child with medical needs and all that meant in the wider scheme of things, I recognised that I wanted teaching to be less of a focus and that my true passion lay in the field of psychology. As a result, I moved into a research position in the Department of Experimental Psychology at the University of Oxford and have been studying for a Masters in Psychology alongside my work.
My aim is to continue to develop my career in psychology by either training as a Clinical or Educational psychologist, or pursuing a career in academia and continuing to develop research and interventions that are relevant to my particular areas of interest, which are: the effect that cancer and other medical diagnoses can have on an individual and a family as a whole, with a particular focus on childhood illness. As a result of this, my research project for my Masters is focusing on the impact of parents’ psychosocial functioning in the longer term, if they have a child who has been diagnosed with Rb and this has come about because of my story and wanting to encourage research that looks at creating interventions and policies to give more support to families once the initial treatment period is finished.
Thanks for taking the time to read my blog and feel free to get in touch if you are interested in finding out more about my research project and what it involves by contacting me at CLARE.STOTHART@MAIL.BCU.AC.UK by the 8 December.