Before your appointment

There might be some questions you’d like to ask your doctor.

If you talk to your parents before your appointment about what you’d like to know, they can help you to get some questions ready.

During your appointment

Your family can help you to ask questions, and can talk to your doctor with you, but the doctor will always be interested to hear what you have to say too. 

Your doctors and nurses are there to help you. When you talk with them about having aplastic anaemia and your feelings, be honest. Whatever you say or feel won’t be a shock to them. Remember that although this is all new for you, they will have seen other children with aplastic anaemia just like you. 

Your doctor might use words you haven’t heard before. If you don’t understand something they say, it’s fine to say so. Your parents might be able to help you to understand what they are saying too.

If anything’s still not clear, or if you want to hear anything again, you can always ask your parents to explain it again to you after your appointment. 

I was included in all the meetings at hospital and was always given the opportunity to ask questions. It was a a lot to take in at first, but my consultant spoke to me in a way that I could understand.”

I just kept asking questions:

what are you doing? and why? 

I knew exactly what was going on.

I did feel angry when I was in hospital and just wanted to play, but my mum would help and the play workers helped in making me understand what was going to happen. It was scary, but keeping distracted by playing games helped me.”

I always remember having nice clothes or pyjamas to wear, and my mum doing my hair for me to make me feel better, even though we weren’t leaving the hospital. I really enjoyed arts and crafts, so we decorated the drip stand to make it look pretty.

“My family came and it was lovely to see my brother, who always had a bucket of chicken wings.

I loved chilling with him and beating him on PlayStation.”

When I was very tired, I did sleep a lot or I got tired a lot. My mum reassured me that I could say if I did not feel like seeing anyone, and that they would come back when I did feel like it.

My body sometimes struggled with some of my treatment and made me poorly. I remember wanting to have a private side room because I didn’t want others seeing me unwell and didn’t like the noise of the ward.

I had a worry teddy that I could whisper any worries to, as I did not like to talk much about how I was feeling, and it helped a lot. It made me feel better and helped me.

I used to take my Nintendo Switch, and my teacher gave me [an adventure card game], which kept me busy when I was having transfusions.

I took my favourite blanket and teddy bears with me to make it feel more like home.

I would have a bag that would come with me with all my favourite things. I would take my pillow from home when I had to go in for short stays when I had a fever, which made me feel safe and like I was still at home.

I would watch films, and the nurses were very lovely and made me feel better. Having my mum or dad stay with me helped also. 

I knew I had to be very careful with my Hickman line and there was lots I could not do, but my family was positive and focused on all that I could do.

It was a strange feeling leaving hospital. I felt relieved, but unsafe sometimes because I was so used to being in hospital, and being outside didn’t feel normal.

When I left hospital, all my family came. I made a lot of noise ringing the bell as I had finished my time there, and I loved being back with my brother and sister.