David tells his story and provides advice for people newly diagnosed with a brain tumour.
In 1998 I had a seizure in the middle of the night, I did not have a history of seizures and so was sent for a scan to investigate. The scan showed a suspected brain tumour, however the decision was taken not to do a biopsy so this was not pathologically proven. My medical team decided to leave it and wait and see what happened.
Seven years later in 2005, following a haemorrhage I underwent neurosurgery, my tumour was confirmed and shown to be a high grade (grade 4) oligodendroglioma.
The tumour diagnosis has had a major impact on me and my family from both a personal and professional perspective. At the time of my initially diagnosed, I was running my own computer software business in London's West End and employing some 35 people. Myself and my wife were also expecting our second child, Jess, now 14. When Jess arrived she was diagnosed with Respiratory Deficit Syndrome (RDS) and was put into intensive care due to breathing difficulties. The combination of me being diagnosed with a brain tumour and Jess being diagnosed with RDS was extremely challenging for our family! But we were strong (as we had to be!) and family and friends helped us get through.
After my diagnosis I continued to work full time in London for as long as I could, and, following the merger of my business with an IT consulting business, I was now working for and employed by a large global accounting firm. However in September 2009, on the way into the office, I collapsed on the train. Since then I remain employed, but stay at home to focus 100% on improving my health, fighting the tumour and getting better. I am very fortunate that in my current job, I have permanent health insurance and I also benefit from private health care.
What kind of advice would I give to newly-diagnosed brain tumour patients?
- While the diagnosis of a brain tumour is pretty life shattering, I would say that you should try your best not to panic. I was diagnosed now some 15 years ago and initial feedback from consultants and people I knew was pretty bleak. I would say try to be positive; although I know that this is easier said than done
- I would also say that statistics give you averages but that no one is average and that initial assessments of your diagnosis are always based upon historical statistical information. Remember, new treatments are continuously being developed and are 're-writing' the statistics books! Also, remember the statistics curve; some people can live for a long time following diagnosis (I am currently 15 years and counting!)
- Remember, every tumour is unique and every individual is unique, so anything can happen… Why not approach things from a 'can-do' attitude?
- I firmly believe in a positive mental attitude and, as the song goes, “ always look on the bright side of life"! My daily mantra is something taken from the teaching of a positive mental attitude coach (Marcus Child – who has come to speak to our support group) – “every day, in every way I am getting better and better and better"!
- I also find it very helpful to attend a monthly brain tumour support group meeting where we share our experiences and have become very involved raising money for The Brain Tumour Charity to fund research in to brain tumours.
What are the first three things on my wish list in relation to my brain tumour diagnosis?
- First, for my two daughters, to see me disease-free.
- Second, that research currently underway finds a cure for brain cancer patients.
- Third, that the DVLA (the Driver and Vehicle Licensing Agency in the UK) reviews their policies for brain tumour patients and their right to drive. The stress losing your license can cause within the family can be a lot worse than the disease itself at times (especially when the children go through their teens!).
But life for me is certainly not only about my brain tumour. I enjoy playing bridge (which I have learned since being off work). I go for walks and I listen to music. I also enjoy photography, computing and when I'm able, I try to get back onto the golf course. I also try and help other people where I can (through business, support groups, cancer charities, etc). And of course, most of all, I enjoy being with my family.
My Treatment History:
- October 1998 – Diagnosis of 'lump in head following a seizure in middle of night.. – Decide to leave it in place and see what happens.
Following haemorrhage in October 05:
- October 2005 – Craniotomy # 1
- Jan 2006 - Radiotherapy #1
- March 2006 - Chemotherapy (Temozolimide #1)
- October 2008 - Craniotomy # 2
- November 2008 - Craniotomy #3
- November 2008 - Chemotherapy, insertion of eight Gliadel Wafer disks.
- Jan 2012 - Craniotomy # 4
- March 2012 - Radiotherapy #2 (RapidArc)
- October 2012 - Chemotherapy (Temozolimide #2)