Jane's story

Belle had just turned two when a tumour was discovered in her abdomen and was diagnosed with a neuroblastoma stage 3-4. She had the most aggressive form and had to start treatment straight away. 

Having a child diagnosed with cancer affects the whole family. Belle’s mum, Jane, explains the mental and emotional impact it had on her.

Jane's story

“I remember almost rocking back and forth and thinking ‘should I be reacting like this? What do I do?’ It felt like all of the eyes of the room were on me and I was just there in shock. I was in a full state of shock.

“At this point, I wasn’t working. I had just been thinking that this was the time that I could look into going back to work and Belle could start pre-school. Then, of course, it all changed.

“My husband was in full-time employment, but luckily his work was just absolutely brilliant and they helped him have a lot of time off. It was important for me personally for him to have time off as I needed him here with me. I felt selfish, but I did need him there to keep me sane.

“I was incredibly low. My husband would then be the one to be positive and pick me up. You end up taking it in turns. One day he is low and I do what I can for him, then it’s the other way round. 

“Then we got to the stage once out of treatment when we started to believe Belle would be ok and that we would have some normality. That was when things really hit me.

I just felt like I needed to escape 

“We were moved out of the children’s cancer ward, which was unexpectedly a really positive and nice place. We went into surgery recovery and it was so oppressive and cold that I started feeling all of it pressing in on me. I just felt like I needed to escape – I felt like I was going to explode. At that point, I thought ‘I could just jump off the top of this hospital’. I just wanted to get away from it all. Then I felt incredibly selfish that I could be thinking like that and got angry with myself.

“You just have to keep going through it all, so that is what you do. You’re wrestling with your emotions as you carry on and put your child first. But it definitely takes a toll on you.

“I suffered with what I can only describe as post-traumatic stress. I had cognitive behavioural therapy to help me with that and get me through it. I took anti-depressants and I just couldn’t talk about the experience. I would just cry. The cognitive behavioural therapy eventually helped me open up about things. I had to write down and go through everything from the start, which I hated doing, but it made me confront it.

Living from one moment to the next 

“It has been an ongoing process and it affects me even now. I now suffer from anxiety and it has been hard to relax into the thought that she is well and not going to get sick again. Suddenly there is no plan. You have been living from one moment to the next. Then you have to change your way of thinking. 

“Belle has been amazing through all of this. I don’t know that she really understands that she could’ve died, but she enjoys going to the hospital and seeing the nurses and she has confidence. She is 10 now and it really helps to see her doing so well. 

A letter from a complete stranger 

“I actually received a letter from a complete stranger telling me that their child went through something similar and they are 21 and doing well. I never knew who did that for me, but that letter was very important. I used to keep it with me and look at it when I was low at the ward, to give me that lift.

“We have actually done the same in that we have seen other children at the ward at check-up and I have told other parents how well she is doing and I can see it’s a source of relief for them. They want something positive to hold on to.

Hidden costs

63% of parents experienced depression during their child’s treatment and only 37% of parents accessed support for managing stress and anxiety during this time. It’s tough seeing your child go through cancer. It devastates families emotionally. But we’re here to help the whole family cope. Find out how you can help this Childhood Cancer Awareness Month.

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