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Alfie’s story: “I get tired a lot”

Three years ago, Alfie Tinney had a grade 1 pilocytic astrocytoma completely removed during a 12-hour surgery at Sheffield Children’s Hospital.

Although Alfie’s tumour was low-grade, he still regularly experiences side-effects – particularly fatigue – and it affects his day-to-day life quite a lot.

We spoke to Alfie, now 9, and his mum Caroline to understand a little more about his story and how we copes with the ongoing fatigue – a side effect that we know affects a lot of our community.

Headaches and dizziness

Alfie started having symptoms around three years ago. “I was getting headaches and was really dizzy. I was also really tired, but was struggling to sleep.

“My mum took me to the doctor three times, before he sent me to the Northern General Hospital in Sheffield. They checked me over and then I was sent straight to Sheffield Children’s Hospital where I had an operation.

“I’ve had two more smaller operations since to sort out an infection caused by an abscess.”

How fatigue affects Alfie

Although Alfie’s tumour was removed successfully, he still gets side effects, most notably fatigue.

“Since I’ve had the tumour, I get really tired, even though they took it all out. I’m having to take the week off school at the moment, because I’m so tired.

“That’s really difficult, because I like going to school, but if I have a really busy week then the one after is usually quite bad.

“I also get quite emotional. I’ll cry at things really easily – even something silly like if I drop my coat. When I feel like that, I just want to get away from all sorts of noise.”

What Alfie does to help his fatigue

Alfie does certain things when his fatigue hits to try and make it better: “I often go for a nap, if I’m really bad. Or else, I like to curl up on the sofa under a blanket and watch one of the Toy Story movies – that’s my favourite.”

“Sometimes, though, I know I need to go out and run around, so I’ll go into the back garden and jump on the trampoline for a few minutes. It means I get some fresh air and exercise is good for me.”

For Alfie, football is also an important part of his life. “Alfie finds it helpful staying fit and playing football for his local team Hoyland Magpies,” says Caroline. “His team-mates have been really helpful and supportive.”

How mum Caroline helps Alfie

“As he’s got older, Alfie has definitely got better at managing his fatigue,” admits Caroline. “That said, I still notice the signs that he’s struggling before he does.

“I also manage his activity levels, if I know he’s got something coming up he won’t want to miss. I’ll suggest that he needs to have an early night at home, rather than spending time at a club. Otherwise, he’ll be good for nothing the next day.”

“I do worry for Alfie as he gets older. If it’s the lifelong condition that it appears to be, I worry about how he’ll get through his GCSEs and other things in his life. He’ll get better at managing it, but it’s a concern.

Fatigue

Fatigue is the most common side-effect of brain tumours and their treatment.

Coping with fatigue

Fatigue can be debilitating so we have put together some tips to help you cope day to day.

Research into fatigue

Dr Rooney is researching how changes in lifestyle and behaviour may help to manage fatigue.