'He urged us to continue his campaign to raise awareness of glioblastoma and raise funds for research for better outcomes for others.'
Raising money for The Brain Tumour Charity in memory of Peter
My husband Peter's brain tumour journey began on Monday 16th September 2013 and ended 34 months later on the 16th July 2016. He was 59.
Like everybody else who is diagnosed with a brain tumour it was to be a life changing moment. Peter worked in the City and cycled to work everyday from our home in Kingston upon Thames. On this day though he had a seizure whilst cycling and was fortunate not to be injured and he was helped by wonderful passers by. After a few days of uncertainty as to what had exactly happened he returned to work on Wednesday 18th September only to be rushed in an ambulance to UCLH because his colleagues became alarmed when he was unable to talk properly.
Initially a stroke was suspected but subsequent scans revealed a small mass on his left temporal lobe. Dangerously close to his speech centre his surgeons main concern was to ensure the tumour was safely removed without damaging his language or speech. So on the the 1st October 2013 Andrew McEvoy, his surgeon at UCLH performed a successful craniotomy and amazingly Pete from the operation after of a couple hours and he could speak. He recovered quickly and began the gruelling 9 months standard treatment for glioblastoma, a very aggressive tumour.
He coped admirably with the radiotherapy and ongoing chemotherapy treatment, which was completed in June 2014. He began to recover his strength and was resolute in his determination to beat this disease with its appalling prognosis. We chose as a couple to leave no stone unturned in our pursuit of treatments that would give him additional time with me and his four much treasured children.
After a month in August 2014 recuperating on a much anticipated family holiday island hopping in the Caribbean we returned back to London for his first post treatment scan. Wonderful news… it was clear. He then embarked upon a private self- funded immunotherapy treatment at Dr Nesselhuts clinic in Duderstadt, Germany. We believe the novel dendritic cell vaccines made a huge contribution to his amazing good health that year and he had clear scans throughout the rest of 2014 and up to summer 2015.
It gave us a year of wonderfully ordinary family life. Peter enjoyed daily long walks in his beloved Richmond Park. He returned to his running club Ranelagh Harriers and we enjoyed many more memorable family occasions, holidays and trips. What was paramount to Peter was being around long enough to see all his children continue to grow and develop their lives.
However, in Autumn 2015 after 2 months of uncertainty it became very apparent that the tumour had resurfaced. This time it had spread to three sites across the left side of the brain. There were no viable treatments available on the NHS. So began our challenge to enable Peter to have as much time as possible and to remain as well as possible too. His consultant at UCLH was Paul Mulholland who recommended a privately funded combination treatment of Avastin, Lomustine and Valganciclovir. Then began a desperate race to fund this treatment when his private health providers initially refused to support him.
We were overwhelmed by the tremendous support of family, friends, colleagues, neighbours and even strangers who worked tirelessly to ensure we had enough funds to pay the 6k monthly medical fees. A Facebook page called For Pete's Sake was set up to help raise awareness. Peter and I continued to search worldwide for other treatments, repurposed drugs and clinical trials that would help too.
Throughout his journey Peter was on a cocktail of supplements and drugs to enable him to stall the tumours rapid growth. However, by June 2016 it was increasingly evident that, in spite of the various new treatments the tumour was progressing at an alarming rate. By now he had lost his right field of vision and his motor function on the right side was weakening daily.
After 33 months of good quality life he could no longer read or walk, two big losses. We began hospice at home on the 16th June 2016 and Peter died peacefully at home with us all with him on Saturday 16th July 2016.
His legacy of courage and boldness will live on in the four young people Patrick, 31, Elizabeth, 30, Jordan, 19 and Conor, 14 who had the good fortune of calling him Dad. He also urged us to continue his campaign to raise awareness of glioblastoma and raise funds for research for better outcomes for others.