An unexpected diagnosis
Paul was diagnosed with a rare type of brain cancer in August 2017. He had been feeling unwell for about six months and booked an appointment for a scan at Homerton University Hospital.
The doctors at Homerton immediately sent the scan to The Royal London Hospital (RLH) for further investigation.
“The immortal words of the consultant were ‘this is treatable.’ Which I didn’t really appreciate at the time how significant that is, when dealing with cancer.”Paul
The team at RLH found a golf ball-sized tumour at the base of his skull, near his spinal cord. He had Ependymoma, a rare type of brain tumour making up only 2% of all brain cancer diagnoses in the UK.
Ten days after his scan at Homerton, Paul was undergoing nine hour’s of surgery. The entire tumour was successfully removed but that was just the beginning of Paul’s recovery journey.
“Because of the location of the tumour, one thing the surgeons made quite clear to me was that my nervous system could possibly be damaged. So I was pretty scared by that.
“I remember waking up in the recovery room, and initially, I had lost all sensation in the right-hand side of my body, completely. I still was able to move but I couldn’t feel anything below my neck on that side.”
Paul is a professional architect, so being able to move yet not feel anything was frightening. And while he could move, he had issues with balance and full motor control.
Following his surgery, Paul underwent radiation treatment. He remembers, “Literally every sense started giving up on me. I had double vision, my taste disappeared, then my hearing went almost completely in my left ear. It just kind of systematically went through each one of my senses. It degraded them fairly significantly and it just got worse and worse for six months after the radiotherapy.”
On the path to recovery
Slowly, but surely, things started turning around. Paul’s senses began coming back and he started physical therapy. Paul likens regaining his proper balance and motor skills to a toddler learning to walk. “It has taken the whole five years, bit by bit. But I kept challenging myself. I took up yoga for balance improvement and that was transformational.”
Running was also a large part of his recovery. After initially only being able to walk very cautiously with two sticks, it became a big goal for Paul to get running again – and a huge motivation.
“I started running about 18 months after the operation. My son, who is an excellent runner, took me out a few times. I started with the couch to 5k strategy: run a bit, walk a bit and build it up slowly. It took me a year to get to 5K, but the benefits in terms of mental health and physical health were huge.”Paul
Eventually a friend started taking him to the Saturday Parkrun in the local park and they’ve hit the 50 Parkrun milestone together.
While still not 100% back to his pre-surgery self, Paul says: “I’m a long way from being what I was, but I’m perfectly functional. Very, very happy to be alive.”
Prior to his diagnosis, Paul had run a couple of half marathons. Post-surgery, he has run two half marathons. He says: “I ran one half marathon in two hours and 15 minutes, so that’s just about 15 minutes slower than I was before, so I have managed to regain where I once was.”
Gratitude for those who saved his life
This year, Paul is running for Barts Charity in the Hackney Half Marathon to give back to the team who cared for him at The Royal London Hospital.
“One of the things I thought was absolutely superb was my care. What I really noticed that stuck with me was literally everybody from the cleaner, all the way up to the surgeons, had a positive attitude. Everybody I met treated patients with positivity because it is better for them in terms of recovery if everybody around them is positive and encouraging. And they really were. I felt this surge of positive energy from everybody which I thought was great.”Paul