When you receive a diagnosis it can be quite a shock.
The options for treatment may also be a lot to take in. You may have family and friends who are waiting for you to let them know how your child’s appointment has gone and what the doctors said to you.
Some people will find it easy to explain it all to family and will want the support from them immediately; others need time to digest the information before they explain things to family and friends.
As retinoblastoma and the treatment will be new to you we suggest you tell people what the diagnosis is and what treatments your child needs and ask you friends and family to look at our website. This way you will not need to repeat yourself many times especially if you find yourself getting upset the more times you tell people.
Some people find keeping a diary helps and a few people have started a blog about their child to let their friends and family know how treatment or checkups have gone.
You may find that there are a lot of people who want to know how you are getting on but also appreciate that you will not want to speak to everyone just after getting back from hospital. With a blog or even updates on Facebook, people can see how you are doing and let you know that they are thinking of you.
You may find that people offer to help you but they don’t know how to. It can be hard to ask for help or accept the help that has been offered but if you can give people practical things to do it can make it easier.
Things people could help you with could include: doing a supermarket shop for you, looking after your child’s sibling whilst you are in hospital, picking up siblings from school or possibly giving you a lift to hospital appointments.
It is very important to look after yourself so that you have the strength to support your child through this as best as possible. The Childhood Eye Cancer Trust support workers are always happy to listen to any concerns or difficulties you are having and we can put you in contact with another family affected by retinoblastoma if you think that would help you. If you are interested in doing this read our linking section.