When your child is diagnosed with retinoblastoma, so much energy goes into looking after them and the rest of the family that it can be easy to forget to take care of yourself. But, as Lesley Geen, CHECT support worker, explains, this is important too…

Finding out that your child has cancer is truly devastating. Coming to terms with learning that they will need difficult treatment when they, usually, are well and happy is not easy. But as parents you do whatever you have to, to look after your precious child.

However emotional and exhausted you are, you get up early for hospital appointments, wake in the night to check on your child when they call out, if they are unwell, or just need an extra cuddle. You just keep going.

You organise care for siblings, play dates, sleepovers, granny and grandad care, anything to help them also feel special and important to you, despite their day to day life changing too.

But what about you? How can you look after yourself? Do you even have the energy or desire to at this point?

You will have plenty of people to support you – hospital teams (play specialists, nurses, doctors to name a few), your CHECT support worker, other charities, as well as your family and friends. Accept help if you can, people like to help and sharing practical things can make life a little easier.

Talking therapies can be a great help. There are people that you can talk to, perhaps a counsellor or psychologist. But what if you don’t have the energy for that? Well, that’s fine. In fact, whatever works best for you and your family is fine.

There may come a time when it would really help to find someone to speak to about what you, your child and your family have been through and the impact of that. This can be during treatment or it could be well after treatment has ended, when you may experience waves of emotion about the diagnosis and treatment, or even feel as if you have been hit by a sledgehammer as it all comes back to you.

You may ask, why now? Why, when treatment is finished and my child is well, should I need to talk about it? Well, at the beginning you have to use your energy and emotions to get through the treatment phase. Now, you have the time to allow these feelings to surface. This is normal. It can be considered a strength to ask for help at this time. It’s certainly not a weakness.

You can talk to your CHECT support worker or Rb team about the best way to find this help. At the Royal London Hospital there is a psychologist on the Rb team who you can speak to on the telephone or meet at the hospital. Birmingham Children’s Hospital can also offer psychological support for parents – ask your Rb team for a referral.

You can speak to your GP, or your CHECT support worker can often help you to find counselling support locally. Please don’t be afraid to ask for help, at whatever stage you are.

This article first appeared in the Autumn/Winter 2018 edition of our InFocus newsletter. You can download the full newsletter here.

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