Just 1% of the national research spend has been allocated to this devastating disease
The diagnosis of a brain tumour is devastating, however there is hope. We have been fortunate to meet some very brave people who have survived to tell the tale and who want to share their story to give hope to others.
“From not sleeping through worrying about my illness, I now lie awake thinking about how I can help raise awareness of the desperate need for charitable fundraising for research into brain tumours… I am getting weaker and I know I cannot be helped, but there must surely be a cure for future generations.”
I was born in Malaysia and came to England for further education in 1978, aged 17, with all my family back in Malaysia supporting me financially. Having successfully passed A’ levels, I then studied medicine at the University of Sheffield, qualifying in 1986. Since this time I have worked as a GP in Rotherham.
I married Susan, a senior midwifery sister, and we have three wonderful children – Matthew - 20, Thomas - 16 and Katherine – 14.
Over the years we have had some wonderful family holidays together going to Malaysia, Singapore, Thailand, Oman, Kefalonia and Menorca as well as in the UK and especially in Scotland and Wales. However, in the summer of 2009 whilst on holiday in Spain, my family noticed that my mood had subtly altered, although I wasn’t aware of this myself until after my diagnosis was made.
All through 2009 my vision was deteriorating and I was having difficulty reading fine print at night. I started buying reading glasses, but it just kept getting worse. I went to the opticians at least twice that year and I just needed stronger prescriptions.
By the time I booked a day off to go Christmas shopping, I had double vision so I went into Specsavers in Rotherham to have my eyes examined. Having looked at my retinae, the optician sent me over to Rotherham A&E. I was sure they had seen papilloedema (optic disc swelling caused by increased intracranial pressure). CT and MRI scans confirmed a brain mass and after scanning the whole body it was concluded that I had a Glioblastoma Multiforme in the Corpus Callosum.
My life and my family’s lives came tumbling down that day. I have not worked since and neither has my wife.
I was admitted to hospital where I spent my first and only night in the hospital where I worked as a junior doctor and referred my patients to as a GP and where my wife worked as a midwifery sister. I was discharged the next day, having been prescribed a high dose of Dexamethasone tablets and tablets for gastric protection.
I was referred to the nearest Oncology Unit at Weston Park Hospital in Sheffield and to a Consultant Neurosurgeon at the Royal Hallamshire Hospital who confirmed the diagnosis.
It was recommended that I had radical radiotherapy and concomitant Temozolamide. In the meantime, the dexamethasone had caused me to put on weight and I became a Type 2 diabetic. On top of the chemotherapy I had to take oral anti-diabetic drugs. The diabetes caused my lipids to rise and I started passing high amounts of microalbumin in my urine. Not surprisingly, the stress sent my blood pressure up.
Now I was also on a high dose of a statin to reduce my lipids, as well as Ramipril (to counteract the passage of microalbumin through my kidneys and my raised blood pressure). Whilst the statin was fine, the Ramipril made me feel dizzy even at the lowest dose. As the dexamethasone was decreased my blood sugars, microalbuminuria and raised blood pressure settled.
It was a real blow to us all to discover at my next MRI scan that the radiotherapy and chemo had not improved matters. In fact, quite the opposite - it showed progression of the tumour.
I was asked to make a choice between a wait and see approach (in other words, wait for a stroke) or go for another course of chemotherapy called PCV, which would be for six cycles, six weeks apart. I chose the latter and after and an MRI scan following completion of the course showed a reduction in the size of the tumour.
There is no further treatment available to me and I am unable to have any more chemotherapy as my bone marrow is depressed. I have also discovered that there is now a national shortage of one of the oral chemotherapy agents that I was taking, which is potentially disturbing for other cancer patients.
In the meantime, Susan has found out some facts about brain tumours that most of the public and doctors (including me) don’t know. For these facts, please visit Brain Tumour Research www.braintumourresearch.org
From not sleeping through worrying about my illness, I now lie awake thinking about how I can help raise awareness of the desperate need for charitable fundraising for research into brain tumours. Less than 1% of national cancer research spending goes on brain tumours and yet more children and people under the age of 40 die of a brain tumour than from any other cancer.
Personally, I think that funds for research should be provided by the government. Furthermore, recent research undertaken by the World Health Organisation has shown a 40% increase in gliomas over the last 10 years. Should we wait like we did with smoking and lung cancer and the exposure of soldiers to atomic explosions?
I am getting weaker and I know I cannot be helped, but there must surely be a cure for future generations.
I have arranged post-mortem donation of my brain and sorted out my finances with the help of a truly marvellous Independent Financial Advisor at Facts Financial in Sheffield who took on one of my Critical Insurance companies when they decided to withhold £50,000. Alison King took my case all the way to the Financial Services Ombudsman and won, along with compensation as well as interest. Whilst I still can, I am writing to as many influential people as I can to highlight the crucial need for much more research to find a cure for brain tumours.
In the meantime, I am overwhelmed by the wonderful support of friends, family and business colleagues, many of whom are doing what they can to raise awareness of this terrible disease, as well as fundraising for Brain Tumour Research.