Family Contacts“When we heard that our 1 year old daughter had a tumour in her eye, we were devastated. We had never come across anybody with the same condition. We couldn't even say ‘retinoblastoma', let alone take in what it meant. It was such a relief to be able to chat it over with somebody who knew how I was feeling, who had been through the same thing.”
Liz, Surrey
If you would like to speak to another person with experience of retinoblastoma, or have someone call you, contact Julia Morris, Family Support Worker: tel 0121 708 0583 or email julia.morris@chect.org.uk or contct Juliette Carter, Support Worker & Information Officer: tel 020 7377 5578 or email juliette.carter@chect.org.uk
The doctors and nursing staff at your treatment centre will do all they can to care for your child and to give you information about their treatment. However, there can be no substitute for talking things over with somebody who has been through the experience of diagnosis and treatment; somebody who can show you there is light at the end of the tunnel; somebody who is there in the evenings or at weekends.
You may be a young adult coming to terms with your condition, or perhaps you are considering starting a family, or maybe your grandchild is affected.
Spread across Britain, we have members who act as Family Contacts. They are parents who have been through the diagnosis of Retinoblastoma, and treatment of their child. Some have children with bilateral retinoblastoma and have experienced many different treatments with their child. Others with unilateral retinoblastoma know what it is to be told their child must lose an eye …. next week…. and have learnt about the practicalities of living with an artificial eye. Some have had retinoblastoma themselves.
Retinoblastoma can occur in any child, so our Family Contacts come from every walk of life and age group. They are willing to share their experience with you, listen to you and your concerns, and give practical suggestions if they can. You may be feeling numb, angry, sad, or confused and want to explore your feelings and be reassured that they are normal, or need to find out how somebody else felt or coped in the same situation.
Our Support Workers will try to put you in touch with a Family Contact in your area. As this is a rare form of cancer, there may not be someone very local to you, but with telephone or e-mail this is not so important. In time, you may wish to meet up with a family whose child is of a similar age to yours, so that they too can share experiences and understand that they are not the only child with an artificial eye or visual impairment. |
