Cai

Cai,11, from Swansea, was diagnosed with a brain tumour when he was just eight years old. His mum Jo tells their story.

When I heard the news I just went numb.

Cai with social worker

The operation was the hardest time, waiting and thinking something major must’ve gone wrong. Cai spent three weeks in hospital, then went back to have his port put in. He’d had enough of hospital, and developed a needle phobia which made everything very stressful.

Cai started chemotherapy and it was really difficult. Then Jane, our CLIC Sargent Nurse, came along and things finally started getting better. She developed a relationship of trust with Cai, discussing his treatment choices. She came to the house, saving us a 50-mile trip, giving us more time. 

She was patient and helped Cai come round to the idea of having the needle. He would be mischievous with her, but I knew it meant he trusted her.

Before Jane, we didn’t feel like the different hospital teams were talking to each other and working together. We didn’t know who to talk to or to take questions to.

I had the sense Jane was talking to the doctors, explaining what we needed personally. That makes a real difference.

Cai’s treatment finished last December. He missed a lot of school and needed to catch up, and got upset that he didn’t understand some of the work. Jane has worked with the school to explain Cai’s situation so they can better support him.

I still go to Jane when I have questions or want to talk about anything. It is great to have that personal connection.

"Cai started chemotherapy and it was really difficult. Then Jane, our CLIC Sargent Nurse, came along and things finally started getting better."

Jennifer

Jennifer, from Blackburn, is 22. She was diagnosed with leukaemia when she was 20. 

I couldn't take it in – I was too upset.

Jennifer with her mum

The first week at hospital was scary. I was then in isolation for six weeks, including my 21st birthday. I had eight months of chemotherapy. I really hate needles.

My CLIC Sargent Young People’s Social Worker, James, was brilliant. He offered support and information every step of the way. Without James I would have lost my house, and probably my job.

I didn't know anything about housing benefit or Personal Independence Payment. James went through the whole thing. He also helped me get a mobility car so my parents could drive me to hospital appointments.

James told me about other charities that help people with cancer. It meant I could get a new bed as mine was falling to bits. I was so ill that I was in bed a lot.

Because I'm still off work, I'm now on Employment and Support Allowance. James helped me apply for that too.

I’m now in remission and have been clear for three months. My employers have been good, and are now asking when I'll be back at work.

I work in a nursery running around after 16 children and I get exhausted quite quickly. There's a lot of paperwork and my head is still fuzzy, thanks to ‘chemo-brain'. James wrote to my employers to explain and let them know I would be off work for longer than I’d thought.

James really helped me know what to do.

"James was brilliant. He offered support and information every step of the way. Without James I would have lost my house, and probably my job."

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