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#braintumourwarrior

My diary of life with a low grade brain tumour and following my craniotomy.

Sharing experiences: My craniotomy.

I’m hoping that sharing the experience of my craniotomy (4th December 2015) will help others about to go through the same thing – if that’s you, you’re bound to have a lot of questions.

Continue reading “Sharing experiences: My craniotomy.”

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Accelerating change: our visit to the House of Commons with The Brain Tumour Charity.

Recently, my boyfriend Dan and I were invited to a private reception for supporters of The Brain Tumour Charity, hosted by Lord Adonis at the House of Commons. (Yes, Dan has joined me in this crazy world of fundraising and awareness raising!). Here, I give a low-down of the day, of progress made and of the exciting next steps in UK brain tumour strategy afforded to us by the legacy of Dame Tessa Jowell.

Continue reading “Accelerating change: our visit to the House of Commons with The Brain Tumour Charity.”

Talking the talk: coping with brain tumour-related communication difficulties.

Hi. It’s been a while since my last post. I’ve been busy getting back to work full time and less has been happening regarding new appointments, diagnosis updates or treatments. Recently though, I’ve addressed one of my symptoms in a more head-on way and wanted to write about it in case anyone out there identifies and finds that this course of action could help them.

Continue reading “Talking the talk: coping with brain tumour-related communication difficulties.”

Rehabilitating the whole self after brain injury – my visit to Walkergate Park.

I recently visited Walkergate Park, an outstanding centre for neurorehabilitation and neuropsychiatry in North East England. Walkergate Park’s wide ranging and holistic facilities are available to anyone with a disability caused by injury or disease to the brain, including those suffering from the effects of a brain tumour or its treatment. Today I talk about my visit to Walkergate, as they celebrate 10 years of providing forward-thinking services to their user base.

Continue reading “Rehabilitating the whole self after brain injury – my visit to Walkergate Park.”

Guest blog: Two kids, one brain tumour and a sandwich short of a shop.

Hi folks, it’s Angie. Today I’m honoured to share a guest post from another friend of mine, Lara. You might remember Lara and her beautiful daughter Amber from my post Benign isn’t fine, when at six years old Amber was going through chemotherapy to treat her low grade brain tumour. Sadly, in December this year, scans showed that Amber’s brain tumour had grown and developed multiple cysts causing further problems. Amber then needed a major operation to relieve growing pressure in her brain. Now, just over one year on, Lara’s family of four have flown to Oklahoma, USA on the recommendation of the NHS.

Continue reading “Guest blog: Two kids, one brain tumour and a sandwich short of a shop.”

Funding the breakthroughs: science to save lives.

This month I took a look at how our fundraising support for The Brain Tumour Charity is being used in practice at Newcastle University.

Continue reading “Funding the breakthroughs: science to save lives.”

Go on, get HeadSmart.

This past week, the team behind HeadSmart have relaunched their campaign to raise awareness of the signs and symptoms of brain tumours in children and young people. Having already seen incredible success in helping cut the average diagnosis time for a childhood brain tumour in the UK from more than 13 weeks to today’s figure of 6.5 weeks, the relaunch sees the start of a new drive to bring that figure to below four weeks in order to save lives and reduce likelihood of long term disability.

Continue reading “Go on, get HeadSmart.”

Ten things about brain tumour-related fatigue.

(* The pic is my pup Sky, her expressions often illustrate how I feel far better than I do!)

Fatigue is non-dramatic. Fatigue is unexciting. It is, more often than not, a day-to-day occurrence, plodding along in the background of the whirlwind that is illness, diagnosis and treatment. For those suffering its effects, it can become so run-of-the-mill that it is forgotten about by those surrounding you, while still having a major impact on your life as you try to regain a sense of self.

Over the past almost-year-since-my-surgery, I like many others have become rather familiar with the concept of fatigue. However, familiarity and understanding aren’t necessarily the same thing: and understanding something can bring you one big step closer to managing it.

I decided this month to devote some time to read up on this important issue for brain tumour patients. Here are ten key things I’ve learned.

Continue reading “Ten things about brain tumour-related fatigue.”

NHS Fab Change Day part 3: Making my HeadSmart pledge

Today – 19th October – is NHS Fab Change Day. Described as the biggest day of collective action for improvement within the NHS, Fab Change Day is a social movement, created by the frontline of healthcare to become a real force for change and sharing best practice. I’ve spent today getting involved and learning more about fab initiatives to improve the NHS in my local area.

Continue reading “NHS Fab Change Day part 3: Making my HeadSmart pledge”

NHS Fab Change Day part 2: Fab Changes across Northumbria.

Today – 19th October – is NHS Fab Change Day. Described as the biggest day of collective action for improvement within the NHS, Fab Change Day is a social movement, created by the frontline of healthcare to become a real force for change and sharing best practice. I’ve spent today getting involved and learning more about fab initiatives to improve the NHS in my local area.
Part 2 of my Fab Change Day spent with Northumbria Healthcare NHS Foundation Trust was spending the afternoon at the newly formed Northumberland Specialist Emergency Care Hospital (NSECH). Staff from across the trust had gathered at NSECH to shout about the improvements they’re making in their area of healthcare.

Continue reading “NHS Fab Change Day part 2: Fab Changes across Northumbria.”

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