Our 2016 Charity

 

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About The Brain Tumour Charity
Registered Charity No. 1150054 (England and Wales) SC045081 (Scotland)

The Brain Tumour Charity is at the forefront of the fight to defeat brain tumours, making a difference every day to the lives of people with a brain tumour and their families. It funds pioneering research to increase survival, raises awareness of the symptoms and effects of brain tumours and provides support for everyone affected.

The Charity’s goals are to double survival within 10 years in the UK and to halve the negative impact that brain tumours have on quality of life.

It adheres to nationally-recognised accreditations and best practice guidelines for every area of its work.

The Charity funds an extensive and diverse portfolio of research across the UK with the aim of doubling survival and reducing long term harm through improving the understanding and complexities of brain tumours, better diagnostic techniques and new treatments.

The Brain Tumour Charity offers a comprehensive support and information service for anyone who is affected, including a support and information line, Information Standard accredited fact sheets, online peer-to-peer support and a dedicated Children and Families Service.

It funds and promotes the UK-wide HeadSmart campaign, raising awareness of the signs and symptoms of brain tumours in children and young people to make earlier diagnosis a reality. Earlier diagnosis will reduce long-term disabilities and save lives.

In just three years, HeadSmart has reduced averaged diagnosis time from 9.1 weeks to 6.7 weeks.

Find out more at: www.thebraintumourcharity.org

 

Why have we chosen The Brain Tumour Charity?

In December of 2015, just a few days before Christmas, a close friend of ours was diagnosed with a brain tumour. At the age of 28, Helen, was fit, health and full of life. 2015 was anything but an “anuss Horribilis” for Helen, having been promoted at work, finally climbing onto the London property ladder and, above all else, Helen married her childhood sweetheart Mark. Sadly, just one week from the end of the happiest year of her life, her world was turned upside down. Here is Helens Story;

 

In the beginning: –

I would almost go as far to say that 2015 was the best year of my life.   In 2015 I got married to Mark, the man I met at Sponne School growing up, I got promoted at work and we finally got our foot on the housing ladder in London.  Sadly, on 22nd December all of this changed.  We had been in our new house for a week and after a long day at work, a full on spinning session at the gym and with a hectic week ahead I was taken ill.  I had a seizure at home at around 10.30pm that evening.  Luckily Mark was there to catch my fall as a collapsed in the bathroom after being sick.  Within minutes the ambulance was at my door and I was taken to Hospital.  Following a further seizure in Hospital and numerous brain scans my worst fears were confirmed – a ‘mass’ had been found in my brain.

The news: –

Further scans were required and on Christmas Eve, with Mark and my family around me, I was told that I had a brain tumour and it was very serious due to the size.  As a fit 28-year-old I never believed I would be told I had cancer and that without treatment I would be dead in 5-6 weeks.

What is a brain tumour? –

It sounds like an obvious question but I did not know.  There are 130 known types of brain tumour and they are graded 1 – 4, with grades 1 & 2 regarded as benign slow growing and 3 & 4 as malignant fast growing.   Some are cancerous, some non cancerous and they can affect children and adults alike.  This is not an exhaustive list but some symptoms include:

  • Speaking
  • Hearing
  • Drowsiness
  • Co-ordination
  • Concentrating
  • Balance

Please look at The Brain Tumour Charity: Understanding Brain Tumours for a full list of symptoms.  If you do have symptoms I would urge you to go to the doctors as ask to be referred for a scan and further tests.

Background:-

The problem with brain tumours, and mine in particular, is that they can grow very quickly and relatively symptomless.  My first symptom was to do with my vision.  About 6-9 months prior to my seizure, I had peripheral vision problems and also ‘black spots’ in my vision.  Both of which are worrying at anytime, never mind commuting to work or walking around the office.  The optician carried out a full eye examination but nothing was picked up, other than it being referred to as a “Visual Migraine” that would just pass.  As December loomed closer I started to feel achy, a bit sick and have headaches.  These were mainly in the morning and at work.  Friends were quick to tell me it was morning sickness but I knew that this wasn’t correct.

In the time leading up to the seizures I had tried everything possible to make myself better from joining the gym (to relieve any stress making me feel ill), physiotherapy sessions in London, cranial osteopathy, wearing glasses, taking medication etc.  Nothing helped.  I had been to doctors on numerous occasions and the latest was early December 2015 when the doctor (who I had never met before) diagnosed me with depression within a very short appointment!  I certainly wasn’t depressed, we had just come off our honeymoon and moved house!  Quick to offer depression tablets I politely declined and continued to wonder why I felt so ill.  Days later I had an emergency admission to hospital and shortly after the diagnosis I met with my Neurosurgeon to discuss a brain operation.

My treatment plan:

Brain surgery:-

Early January 2016 I was admitted for brain surgery called a Craniotomy.  To spare you all the gory details, let’s just say that the operation involved opening my skull from ear to ear, removing as much tumour as possible and stitching me back up again.  The whole procedure took three neurosurgeons, anaesthetists, doctors and nurses a gruelling 7 hours to complete.  Biopsy results showed a sizable grade 3 Oligodendroglioma.

I recovered extremely well from the surgery.  I was always warned that I may not remember people, past events or that I may not be able to move all my body parts as I once did.  Thankfully I don’t seem to have suffered any memory issues and I was released from hospital just days after surgery, which I was grateful for.  It felt a little like ‘One Flew Over the Cuckoo’s Nest’ for those who have seen the film!

Fertility:-

The potential loss of fertility was something that was very casually slipped into conversation one day by my Oncologist and Cancer Nurse.  Before long I was injecting myself with hormones to generate eggs which would be collected in February.  These now sit in a freezer somewhere in London for use later down the line if we need them.

Radiotherapy:-

Once fully recovered from surgery it was recommended that I start radiotherapy.  This involved (almost) daily trips to hospital for 33 sessions of treatment over six and a half weeks.  Side effects differ from person to person but for me the main side effect was fatigue.  I also lost my hair in patches on my head, creating quite a unique look!

Chemotherapy:-

This is where I am now.  I am currently on my first cycle of PCV chemotherapy.  I have 6 sessions in total which will take around 9 months to complete.  The treatment involves one hospital trip for chemotherapy, following by 10 days of chemotherapy tablets and around 30 or so days to recover.

Reflection: –

Firstly I am grateful to be alive.  The 22nd December 2015 could have been my last day alive as could brain surgery on the 6th January 2016.

I question why this disease was not picked up sooner and how it would be now if it had been.

I wonder how my life will be in February/March 2017 when I finish my treatment.  Will the tumour have shrunk?  Will normal daily life resume?

However the situation pans out for me there is a need for more funding needs to put into brain tumour research (currently less than 2% of the £500m is spent on brain cancer research).

More awareness of the symptoms needs to be created with comprehensive support and information.

Where now:-

For this reason my friend, Jimmy Gillespie has chosen The Brain Tumour Charity to be the Charity of the Year for Everyday Performance Therapy.

The charity relies on 100% of donations for all of its work which includes funding research, providing information and support, as well as raising awareness of the topic.

Jimmy will be raising money by taking on the challenge of the Woburner 70.3 Half Ironman @ Woburn country park on September 10th this year.

 

Vist Jimmy’s Just Giving page HERE

 

What your money could do

£500 (our target figure for Jimmy’s 1/2 Ironman in september)

could pay for all pupils in a secondary school and their parents and teachers to receive a HeadSmart symptoms card, ensuring that brain tumours in children are diagnosed as early as possible.

£250

could fund a day of research for one of our leading brain tumour researchers to further the understanding of a particular type of brain tumour to provide more targeted treatments.

£100

could enable a researcher to purchase materials for testing new potential brain tumour treatments in the laboratory. The money could help fund vital equipment such as petri dishes which can be used to grow brain tumour cells to test drugs and monitor their effectiveness.

£50

could enable us to make 20 families ‘brain tumour aware’ through our HeadSmart campaign so that diagnosis is quicker and lives may be saved in the future.

£25

could cover the cost of providing an essential information pack and vital support online and over the phone, which is desperately needed by someone newly diagnosed with a brain tumour to reduce anxiety, depression and isolation.

£10

could enable us to give a Brainy Bag to a child who’s just been diagnosed with a brain tumour, giving them support and comfort and providing invaluable information for parents.

Thank you for your support