brainstrust Lifeline


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brainstrust

Julia Somerville presents an appeal on behalf of brainstrust, a charity that supports adults and children with brain tumours.


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This is Phoebe.

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She's six years old.

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When I draw a picture, I feel happy.

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It reminds me of nice things.

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Since she had an operation to remove a malignant brain tumour

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in 2015, Phoebe and her mum Rachel have found ways to talk about it.

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I'm a happy person,

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even when we go through hard things, like my cancer.

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SHE PLAYS: Twinkle, Twinkle, Little Star

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There was a big lump inside my head, about the size of a tennis ball.

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And what happened to the lump?

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It got taken out by the doctors.

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Phoebe's dad Matthew

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will never forget the call that came with news of Phoebe's diagnosis.

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She'd been taken to hospital the day before with repeated vomiting

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and headaches.

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My phone rang and it was Rach.

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It was terrifying and, although Rach didn't tell me on the phone

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that it was a tumour, I could hear the fear in her voice.

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25 years ago, I too heard the words, "You have a brain tumour,"

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and I know how really frightening that is.

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At the time, I had two young children aged eight and four

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and, in fact, it was my daughter who came into the room and found me

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in the throes of an epileptic fit, and that was how I was diagnosed.

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I know that my brain tumour will get me eventually

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but not for a long while yet.

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Chris is 29 and, today, he's come to hospital for an MRI scan to

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make sure his brain tumour isn't growing back.

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Since having surgery to remove it two years ago,

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he's had to come here for scans every four months.

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It's extremely stressful.

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I'm convinced that it's bad news every time.

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It isn't every time so, hopefully, today's no different.

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Chris discovered he had a tumour when his partner Holly

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found him having a seizure in his sleep.

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For Chris, today's scan is especially important.

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At Christmas, me and my partner Holly

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are going to head over to San Francisco.

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It's going to be great family time but if I did get terrible news

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on Monday, based on this scan, then who knows?

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So, fingers crossed.

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Having a brain tumour is a terrifying experience and

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it can leave you feeling very alone and disoriented.

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That's why I want to tell you about the work of Brainstrust.

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It's the only charity in the UK

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that offers personalised support

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for people with brain tumours

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and their families,

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24 hours a day, seven days a week.

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Every few weeks, all round Britain, Brainstrust organises events

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like this one, for people who've experienced a brain tumour.

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When I come here, I meet people that are in a similar boat.

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They know what it is to have brain surgery.

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Over dinner, funded by the charity, meet-ups provide

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an opportunity for everyone here to stay connected and feel less alone.

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My hair's not as long as it was,

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I'm not drinking as much.

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SHE LAUGHS

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I've been to maybe seven, eight of these in the last two years,

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and I know that I'll be the guy that's coming back

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in 20 years, because I have to believe that.

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It has been so wonderful to hear so much chatter and conversation

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and laughter tonight. It really warms our hearts.

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But, sadly, it's not just adults who need help from Brainstrust.

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Brain tumours are the deadliest form of cancer for children in the UK,

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and 500 are diagnosed each year.

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Think about it - that's 500 families

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having to come to terms with the news

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that their child has a brain tumour.

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Now Brainstrust has set up Little Brainstrust,

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specifically for these families.

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When Phoebe's tumour was diagnosed,

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her parents had no idea what to expect or how to cope.

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I wanted to know as much I could about the stats,

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because you're trying to claw at a little bit of control, I think.

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You've lost all control,

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so, for me, statistics and information

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was a bit of that control.

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A social worker at the hospital

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put Rachel in contact with Brainstrust.

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Brainstrust gave me the brain box,

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which contained loads of really useful stuff.

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It has a lot of information, from very easy-to-understand material,

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right through to sort of a book written by a former consultant.

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Finding reliable information has meant

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that you are able to prepare yourself, I think, emotionally

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for whatever might be next.

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Phoebe's brain box included a diary called My Brain Book

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that the family used to keep information given by their doctors.

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It's really handy to have,

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because being emotional is exhausting,

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you're permanently just so tired

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as you're coming to terms with your child's diagnosis.

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As well as the brain box,

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the charity offers 24-hour support and advice by phone and online.

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Something like Brainstrust,

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it's really, really key to just coping emotionally,

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and not feeling that you're on your own.

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The Brainstrust meet-ups aren't just for adults.

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Here in Sheffield, the charity has brought

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children and their families together

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to share their experiences.

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I like it here because they've been through

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the same thing as me.

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Brainstrust have been brilliant in supporting us

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along this unexpected journey that we've found ourselves on.

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It's offered a chance to connect with other families

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going through something similar.

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I get to know them through cancer.

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Brainstrust is offering something that's quite unlike

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anything else that's out there -

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special, tailor-made support

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for anyone who's undergoing the stress

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of living with a brain tumour,

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and Brainstrust needs our help

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to carry on doing its wonderful work.

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In London, after an anxious weekend,

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Chris is due to get the results of his MRI scan.

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If his tumour is still stable,

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he and Holly can go ahead with their trip to the USA

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to spend Christmas with his family.

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I'm terrified, but hopefully, in ten minutes' time, I won't be.

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I don't know what I would do

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if it were bad news,

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other than I know the first thing I would do

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would be go and speak to Brainstrust.

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Well, I've had a good look at your scans,

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and actually they're stable.

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So that's really good.

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It's a huge relief.

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Not just for today, it feels...

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like a bigger relief than it has before.

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It feels like we can... get on a bit

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and...enjoy life?

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Around 60,000 people with brain tumours in the UK

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are living with the anxiety of regular scans.

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Brainstrust makes people feel strong enough to tackle life with a tumour.

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So, next time, instead of going out and spending money on having dinner,

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why not put that money towards helping someone with a brain tumour?

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A brain box like the one sent to little Phoebe

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costs just £40 to put together,

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so perhaps you could think in terms of contributing to one of those,

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but just please give whatever you can.

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To give by phone, call 0800 011 011.

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Calls are free from mobiles and landlines.

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You can also donate £10,

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by texting DONATE to 70121.

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Texts cost £10, plus your standard network message charge,

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and the whole £10 goes to Brainstrust.

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For full terms and conditions,

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or to make a donation online,

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visit the Lifeline website at bbc.co.uk/lifeline.

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Or, if you'd like to post a donation,

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please make your cheque payable to Brainstrust

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and send it to Freepost, BBC Lifeline Appeal,

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writing "Brainstrust" on the back of the envelope.

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Whatever and however you donate,

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thank you so much.

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Julia Somerville presents an appeal on behalf of brainstrust, a charity that supports adults and children with brain tumours. To help relieve the stress of such a frightening diagnosis, brainstrust offers 24-hour support and much-needed information.

For six-year-old Phoebe and her family, brainstrust has provided emotional and practical support since Phoebe was diagnosed with a malignant tumour.

Julia is all too familiar with this cause, as she had a benign brain tumour removed some years ago.