I started writing my Blog after a brain tumour surgery shattered my old life.
I wanted to raise awareness of brain tumours and reach out to others on similar journeys.
Through my writing I hope to show that whilst such tumours do, more often than not change lives, with tumours such as mine, you can still have a life. Even when, like me, they cause disabilities, fatigue and epilepsy.
As a result of reading my blog you may like to make a donation or do some fund raising for a Brain Tumour Charity. Two such charities who I have received support from are:
Brain Tumour Support ( previously called Hammer Out), they provide essential support to patients and carers
The Brain Tumour Charity - fund essential research into Brain Tumours as well as providing national support
In 2014 I was diagnosed with breast cancer too. During my diagnosis and treatment I have accessed support and advice from four UK charities:
Macmillan Cancer Support
Breast Cancer Care
Look Good Feel Better
Penny Brohn Cancer Care
My story...I was 45 when I was diagnosed with an aggressive Grade One (Low Grade or Benign) Meningioma brain tumour in November 2008 after an 'out of the blue' seizure in bed during the night.
My tumour was the size of a tangerine and had spread across my head like icing on a cake.
Most of the tumour was removed during the first 7 or so hour operation but a rare infection meant I required further emergency surgery.
During the second operation my 'sunroof' was created when a piece of my skull had to be removed.
I had my third operation in August 2009 to close my sunroof with a titanium plate.
After the surgeries I was unable to walk or use my left arm. My recovery has been slow but I now walk with a stick. I live in hope that my nerve pathways and muscles will respond to my continual drive for improvement.
My motto is never, ever give up.
I started one to one Pilates sessions, have learnt to swim again, not too embarrassed to share the baby pool because its warmth helps my leg!
I have developed epilepsy and continue to have focal (partial) seizures, despite a few changes in my drugs. I had a wonderful year back behind the wheel of my beautiful Mini before I lost my licence again due to these troublesome seizures.
I had to take ill health retirement from my 30 year nursing career in 2010 after attempts to return to my national role in Wales were thwarted by fatigue, distances I had to travel on public transport and ability to concentrate.
Before the tumour I was a keen walker and adored dancing so my life has truly changed...
The following poem sums up my approach to life before the tumour but even more so now:
Twenty years from now you will be
more disappointed by the things that you
didn't do than by the ones you did,
So throw off the bowlines,
Sail away from the safe harbour,
Catch the trade winds in your sails,
Explore. Dream. Discover.
My tumour was a Parasaggital Meningioma Grade 1, originating in the right frontal lobe but had spread across to the left occluding part of my main sinus. The affected part of my sinus was removed with the tumour. I had a Simpsons II procedure so, as I understand it, tumour cells still remain leaving a risk of regrowth.
I have undertaken a bit of research and in papers I have read on rates of regrowth, taking into account the specifics of my tumour and its aggressive growth; there is between 9% and up to 30% risk of recurrence. Papers I have seen have obviously varied in terms of patients, tumour, size and spread of tumour.
The risk of infection/brain abscess after removal of a brain tumour is less than 1 percent.
It would appear that my body is a greenhouse as in the early part of 2014 I was diagnosed with Grade 2 Invasive Ductal Carcinoma. So during the year I bungee jumped through surgery, plodded my way through chemotherapy and rambled slowly through radiotherapy.
I have reached the end of the treatment and now plan to get back to living!