Rob’s tumour and being diagnosed myself.. it brought home what was important
Gazing into each other’s eyes as they exchanged their wedding vows, Chrissie and Rob Brandon looked like any other happy pair of newlyweds.
But Chrissie was just weeks away from a 10-hour operation to remove a brain tumour – four years after Rob had been diagnosed with one.
Chrissie, who got engaged to Rob in 2014, says: “I wanted to have my operation knowing that we were married and that Rob knew I loved him enough to show him the ultimate commitment of being his wife.
“There was always an excuse not to get married and something else that needed to be paid for. But supporting Rob through his brain tumour diagnosis and being diagnosed myself made me face my own mortality.”
The couple’s rollercoaster journey began five years ago when Rob suddenly began to suffer from severe headaches and slurred speech. His mood also became very low. In January 2016 doctors prescribed him with anti-depressants.
By that October, with the headaches much worse, the couple knew something was seriously wrong.
Chrissie recalls: “Painkillers didn’t touch the pain and he was nauseous. He started fumbling for his words, feeling off-balance and had no spatial awareness. One day he came home from work and said he’d had to stop his motorbike because he felt like the road was moving.”
After GP visits and a trip to an A&E near their home in Eastbourne, East Sussex, Rob was blue-lighted to the Royal Sussex Hospital in Brighton.
Chrissie, who works as a school first aid and medical needs officer, confesses: “I was absolutely terrified.”
On October 28, 2016, surgeons removed a plum-sized tumour from Rob’s head. Biopsy tests confirmed it was a grade 1 non-cancerous haemangioblastoma. Three days after surgery, Rob was sent home but his life had been turned upside-down.
Chrissie says: “Rob was in shock. He’d had such a traumatic experience that it didn’t hit him until afterwards and he was very up and down as it sunk in what he’d been through.
“Luckily, I’d just left my job and could be at home with Rob before starting a new part-time job but I felt utterly out of my depth.”
Then Chrissie found the “lifeline” of The Brain Tumour Charity’s closed Facebook group for carers. She says of it: “I instantly felt less alone. Everyone had a common understanding and we supported each other. It was invaluable to have people I could turn to for advice or simply read the posts to feel less isolated.”
Now the couple are sharing their story through The Brain Tumour Charity, to raise awareness about brain tumours – the UK’s biggest cancer killer of people under 40 – and highlight the support services they found so vital.
Back at home, Rob suffered from fatigue.
He was also forced to adjust to not being such an active dad any more.
But after working with his occupational therapist, Rob, 50, went back to his job as a logistics manager in August 2018.
Just as the couple felt they could begin looking to the future, things took another devastating turn. Chrissie had suffered from headaches as a teen. While doctors at the time put them down to exam stress, the headaches returned in her 20s and she was prescribed migraine medication.
Then, in September 2019, they came back with a vengeance.
She recalls: “Although they only lasted for two to three seconds, they were so painful, I had to hold on to something. I was so frightened.”
She was sent for neurological tests and an MRI scan but says: “I genuinely thought there would be no way they’d find a brain tumour. What would be the odds of that happening after Rob’s diagnosis?”
Yet a scan on March 13, 2020, revealed a large tumour.
Chrissie, 40, says: “I was distraught and couldn’t believe it – I couldn’t help thinking ‘why us’?”
Two operations were cancelled in lockdown so Chrissie tried to get in the “right headspace” for surgery and made sure to enjoy some family time.
She and Rob got married on September 3 last year in front of friends and family including their son Connor, 13, and children from previous relationships, Megan, 20, Star, 23, and 29-year-old Amber.
Chrissie says: “I kept thinking, what if I don’t make it through surgery and haven’t made our dearest wish of being husband and wife come true?”
On November 16 last year Chrissie had her op and, despite the couple’s fears, she made an excellent recovery.
“I was up and about within days and back at work after three months,” she says. “We both now have scans
once a year. Everything we’ve been through has made us even closer.”
Rob adds: “When I was diagnosed with my tumour and had to have emergency surgery, it was very sudden and frightening. Chrissie’s strength and support got me through.
“After Chrissie’s diagnosis, it became my focus. I didn’t want her going for her surgery without being Mrs Brandon. I very much feel that we were meant to find each other to help each other through.”
Eve Kelleher, The Brain Tumour Charity’s head of services, said: “Our hearts go out to Chrissie and Rob having to navigate the incredibly difficult impact of both being diagnosed with brain tumours. Our relationship counselling service in partnership with Relate offers support to both couples and individuals.”
For support call 0808 800 0004 or visit thebraintumourcharity.org.
I kept thinking, what if I don’t make it through surgery?
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