Who can I talk to?
If you have questions there are lots of different people you can talk to. Below is a list of places where you can find some answers or just to talk and share your experiences.
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The closest people you might like to talk to about how retinoblastoma affected you as a baby or young child are your parents. You might be able to find out a lot if you ask them about your diagnosis and treatment. This can sometimes be difficult for parents to talk about though as it may bring back memories of a difficult time.
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Your teacher can be a good person to talk to if something is worrying you.
- The retinoblastoma team at the Royal London Hospital and Birmingham Children's Hospital will be able to answer medical questions for you. You can ask them the next time you go to clinic or ask you can contact the team and ask to be seen sooner at clinic. If you contact the Rb team the best person to talk to in the beginning is the clinical nurse specialist. The Royal London Hospital Rb Team contact details are here: www.bartsandthelondon.nhs.uk and Birmingham Children's Hospital Rb Team contact details are here: www.bch.nhs.uk
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If you want to talk to someone about how Rb or how the treatment has made you feel about yourself then people you can talk to are the clinical nurse specialist, or the play specialist at the hospital or the Childhood Eye Cancer Trust support worker. You can find your support worker here.
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You can talk with people who had Rb at the Childhood Eye Cancer Trust Annual Members' Day or regional meet-ups. You can ask a support worker to link you with someone else who might feel the same or you can talk to people on our Facebook page.
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An organisation for anyone aged 11-24 who is dealing with a visual difference or disfigurement is I Face www.iface.org.uk
