Pete's story 

"This was a very aggressive form of cancer that causes multiple tumour sites throughout the brain – this news was about as bad as it gets."

My name is Pete and I have lived in Welwyn Garden City for nearly 25 years, having worked for a large multinational IT company for the last ten. I am married to a wonderful woman and have two children, one in primary school and the other in secondary.

My brain tumour became unavoidably apparent to me when I suffered a loss of consciousness and violent muscle contractions (what was later diagnosed as a grand mal seizure) in the middle of serving Sunday lunch in June 2016. Prior to this I had noticed symptoms that I manfully ignored - my left arm moving without me directing it, or being able to prevent movement. In retrospect, I would also say that my temper had taken a turn for the angry during those 6-12 months.

I was taken to my local Emergency Department and given a preliminary CT scan to try to identify the cause of the seizure. This did not indicate anything urgent like a stroke or aneurysm, and the following day I was sent for an MRI which indicated I had a relatively large egg-shaped tumour on the right side of my brain, which at the time, was believed to be low-grade.

I was referred to the National Hospital for Neurology and Neurosurgery (NHNN) for surgical treatment of the tumour. This involved a few more MRI scans (they are very noisy) to get more precise and up-to-date information about the size and location of the tumour as several weeks had passed since my original scans.

The surgery was performed by a consultant neurosurgeon and team in late August. The operation went well, but you cannot cut a big piece of the brain out without causing some bruising. So, when I awoke I was not able to move either of my left limbs.

I spent the next week flat on my back recovering from the surgery. The staff on Bernard Sunley Ward gave me wonderful care and I worked closely with the excellent physiotherapist team and occupational therapy team (particularly Laura). I developed a strong positive mental attitude which I became well known for on the ward. Thanks to all of these factors my left side steadily increased to the point where I was able to use my left arm well enough to type really slowly and move my left leg a small amount.

Most tumours can be accurately diagnosed by taking a biopsy (small sample) of the tumour prior to removal. However, because they were always going to remove the main tumour, the decision was made to analyse the tumour after it had been removed from the skull. This analysis takes around a week to complete. So, early in September I had a very serious discussion with one of the surgical team and an enormously sympathetic oncology nurse.

They explained to me that although my original diagnosis was a low grade tumour, the analysis showed that the tumour had been a glioblastoma multiforme (GBM) grade 4. This is a very aggressive form of cancer that causes multiple tumour sites throughout the brain – this news was about as bad as it gets.

"I’m still fighting my conditions and am more determined than ever to survive, as well as I can for as long as I can."

My median (average) survival estimate was originally indicated as between 12-14 months. This is a difficult thing to hear, but I didn’t allow it to affect my positivity. Neither did I allow my positivity to be affected by the news that there was an additional, more central cancer site, which would not be possible to remove surgically.

By the following Friday (9th September 2016) I was able to walk a few metres and could manage to climb stairs, so was allowed to go home before further outpatient treatment. Before my discharge I was given an appointment to meet the oncology team at the University College Hospital Macmillan Cancer Centre who would be taking over my care, and to have my radiotherapy mask created by the team.

My next treatment phase was an intensive six weeks. This consisted of five days per week of radiotherapy combined with seven days per week of oral chemotherapy. Although this involved me travelling into London every weekday, the radiotherapy and oncology teams were very supportive and friendly. My clinical nurse specialist (CNS) Eileen was very encouraging of my continued speedy recovery following my initial limb impairment. I know that my experience may have been unusual, but I didn’t feel nauseous at any point during my radiotherapy course.

I had a setback in November where an unnoticed deep vein thrombosis (DVT) in my impaired leg moved into the arteries in my lung and turned into a pulmonary embolism (PE). This could not be treated in the usual ways because of my recent brain surgery.

I am currently halfway through my next phase of treatment, which is one week in four of oral chemotherapy at a higher dose than I had been on previously. This has been more tiring than the radio-chemotherapy, which has certainly had an impact on my ability to exercise my impairment away, although I can’t rule out an additional fatigue effect from the pulmonary embolism.

I’m still fighting my conditions and am more determined than ever to survive, as well as I can for as long as I can.