The Wight Brainy Bunch!

The Wight Brainy Bunch!

The Wight Brainy Bunch

Mark is now Fully Operational!

The Wessex Nerological Centre (courtesy of the Daily Echo)

The Wight Brainy Bunch!

The Wight Brainy Bunch are a small Island based charity, initially set up by Ryde Fire Fighter, Mark Grimes and his wife Kathryn, following Mark's own diagnosis of a brain tumour in February 2015.  The Charity aims to help raise awareness and funds for brain tumour research.

The 'Bunch' are now working hard towards providing a support network for patients and their families who have been affected by brain tumours here on the Isle of Wight.

This year, the main beneficiary will be The Wessex Neurological Centre in Southampton. They are one of the most highly regarded neurological centres in the UK, and they provide acute and specialist neurological care to patients across the Isle of Wight for for a variety of conditions such as Brain Tumour, Brain Injury, Stroke, Alzheimer’s, Epilepsy, Brain Haemorrhage, Motor Neurone Disease and Dementia.

In addition to supporting the Wessex Neurological Centre, a percentage of the monies raised will remain on the Isle of Wight to support families who have been affected by brain tumours.   The bunch have already started a support group and are working with GP Practices and Primary Schools to raise awareness and early diagnosis in children on the Island.

Brain tumours are the biggest cancer killer of children and the under 40's, yet they only receive less than 2% of cancer research funding! Early and accurate diagnosis is essential to save lives and reduce long term disabilities.

The Wight Brainy Bunch have several fund-raising events already planned for this year and they hope to be able to support many Island families coping with this devastating disease. 

Please find out more about them by visiting their website: http://www.thewightbrainybunch.org.uk/

 

A personal letter from Mark follows...

Our journey started in February last year.... After 6 months of Mark having what can only be described as "funny turns", we spent his birthday in hospital waiting for a CT scan. What we had assumed for weeks would turn out to be an inner ear problem, in reality could be life threatening.

Following an MRI scan and multiple appointments at the Wessex Neurological Centre, we finally had our diagnosis and prognosis explained to us .... and our world fell apart!

The MRI had confirmed what was believed to be a low grade Oligodendroglioma; one of the rarer tumours, approximately 5x5cm in size, that had probably been growing for many years. We were told in no uncertain terms that whilst the tumour could be surgically removed, this was not a cure and that over time it would be likely to recur. We were also told that because of the tumours location, the 4 hour craniotomy would need to be performed while Mark was awake, so they could test his speech and motor skills throughout the procedure, as to do it under general anaesthetic would be too dangerous.

Research on the internet was scary and not something I would recommend... But ... a few stark facts became very apparent:

 

  • 16,000 people each year are diagnosed with a brain tumour.

  • More children and adults under 40 die of a brain tumour than from any other form of cancer.

  • With more than 120 different types of tumour, the brain tumour is notoriously difficult to diagnose.

  • Brain tumours kill more children than Leukaemia or any other cancer.

  • Brain tumours kill more women under the age of 35 than breast or any other cancer and 65% more women than cervical cancer.

  • Brain tumours kill more men under the age of 45 than prostate or any other cancer. 

    YET... Brain tumours receive just 1-2% of the national spend on cancer research!

     

    The weeks that followed became a roller coaster ride of every possible emotion, as we prepared ourselves each week for surgery, only to be told " it's not this week". We always thought of ourselves as quite strong people, but I think (actually I know), we both cried together (and many times alone, when no-one could hear) more in those few weeks than any other time in our entire lives.

    And then "the call came" and it was Marks week, and it all became a reality. He wanted to make sure he had seen everyone he loved, and I think in his own way had said his goodbyes (just in case).

    Mark returned to the ward following surgery in tears. Initially I thought because the whole procedure had been so traumatic for him, but he managed to just say ... he was happy! 

    The days that followed were hard! Harder than I had anticipated. Feeding, bathing, dressing and pumping him full of many medications every couple of hours.... alongside school runs, kid’s teatimes, a young baby and general housework. He was there in body and the scar was healing well but it was not the Mark I knew. His speech had been badly affected; he tried to text friends and family but made no sense and he spoke in monotone with no expression or personality... nothing like the OCD, fitness freak, Jack the lad that I had married.

    Mark was previously a fit and healthy 34 year old and we had everything we wanted in life... good jobs, a new house and a nine month old baby boy who doted on his daddy! You never think things like this will happen to you.... but things can change so quickly.

    We are now several month’s post op and Mark is progressing well. He is not yet back to his old self but is doing a little more each day and is keen to return to work, fitness and "normal life".

    We realise that Mark was lucky in that he developed symptoms and sought treatment. These ticking time bombs can go undetected and grow to a significant size before displaying any symptoms so many sufferers are not so fortunate.

    Marks tumour is not curable... but controllable. Given his age it is likely he will need to be treated again in the future with either further surgery, chemotherapy and/or Radiotherapy. But for now we can't sit worrying about what might happen or what could have happened. It is our intention to live life to the full and do all we can to enjoy our family and make lots of memories .... None of us know what the future holds.....

    We kick started our fund-raising with plans to take part in the Great South Run in October 2015! For those of you that know Mark.... this was a personal challenge for him to get back to fitness and move on to a much greater goal. For those of you that know me (and have ever seen me run), you'll know how hard I was going to find this. But it is something that we agreed to do together to help raise funds and awareness for this debilitating disease, that has changed our lives forever! Along the way, we also held a Pop up Pub Quiz, Vintage Garden Party, a Road and Trail (RAT) Race and a Music Concert; raising in excess of £10,000 in 2015.

    As well as the lack of funding nationally for brain tumour research, we soon realised that locally on the Isle of Wight, there is little support for brain tumour patients. Moving forward, The Wight Brainy Bunch will continue to support the Brain Tumour Charity and Smile4Wessex but are also committed to helping families affected by this disease, here on the Island.

    We have several events planned for this year including a Murder Mystery night, a Mad Hatters Teaparty, a Blue Light Black Tie Ball and a Comedy Night.

    We are grateful for all your support

    Kat & Mark

    xx