Brain tumour led to a long lingering illness which ultimately ended his life and wife will go on gruelling Peruvian trek for Marie Curie appeal
It was 20 minutes past six in the morning, Hogmanay 1999. Not before, not after, but precisely.
Julie Read distinctly remembers looking at the clock. The time it read is now burned forever into her memory, one of those moments that can never, ever be forgotten however much it haunts and hurts.
She was in bed, her husband Anthony, as usual, by her side.
But this morning, as the hours and seconds ticked away and everyone else was getting ready to welcome a whole new year, century and millennium, something was very wrong.
“He was in the bed beside me, he had been asleep when he started to have a grand mal seizure and he wasn’t coming out of it,” recalls Julie.
A grand mal seizure, in which the body jerks and the limbs twitch, when there’s nothing really that anyone can do – even Julie, a GP – other than try your best not to panic and to make them as safe as they can possibly be.
A phone call brought an ambulance. In hospital there was a CT scan. “It looked like it was some kind of tumour,” remembers Julie. “One that had been there for a long time.”
There was a biopsy to confirm the worst while Anthony – a highly successful corporate lawyer with a sharp mind for legal detail, in his 30s and with two young children at home – slurred his words and looked down at his right hand and tried but failed to tell it what to do.
Among so many conditions and diseases and illnesses, the two words – brain tumour – is one of those likely to strike most fear into any of us.
Anywhere else, and we hope the surgeon’s skill can slice the tumour away, when it’s deep in the brain with calcium deposits – a sign that it had been greedily expanding for some time – encroaching on places where no scalpel can safely go, then it’s the worst possible news: not ‘just’ cancer but cancer that’s not probably going to be defeated. Yet incredibly, Anthony survived for 12 more years. A death sentence on his shoulder, somehow he rallied, battled and with Julie by his side showing remarkable courage, soldiered on. Their two children grew up not really knowing what it was like for dad to be well.
In fact, so ‘normal’ did it become to live with a brain tumour in the family, that Julie, a GP at Liberton Medical Group, recalls it actually being a body blow shock when he finally died.
That was a hellish day last March. Now, with her Newington home quiet, her children moved on to university and Anthony gone, Julie is focussing on doing what she and her husband always said they’d one day like to try to do, a grand adventure, one that embraces life to the fullest.
Soon, in what will be an emotional and well as physical challenge, she will pay homage to her husband and the charity whose care and support provided a vital lifeline during their darkest days, pushing herself on a challenging fundraising trek through the Peruvian jungle.
The challenge will be bittersweet, her way of saying a warm ‘thank you’ to Marie Curie Cancer Care, a chance to stretch her own wings after so long living in the shadow of hospitals and dying, and all the time with memories of Anthony to spur her on.
He had staged a remarkable battle against the tumour that was destined to steal him away, aged just 49. In the end, it was a no-win contest.
“It was so sudden at the end,” she says. “He’d been going to Marie Curie’s hospice regularly since 2007 and one day they phoned and said he wasn’t right and I said, ‘no, he’s not’.
“He was sent to the Western for a scan. He went in walking and within days he couldn’t walk, his speech was going. He was still very cheerful and loved seeing people but over the next four weeks he went down.”
The scan had showed bleeding but because the tumour was so concealed and hard to properly analyse, it wasn’t clear just what was happening, other than it appeared to be, as Julie puts it “progressing.”
“It was awful to be suddenly discussing ‘do not resuscitate”, it felt completely out of the blue. Although we’d agreed on things like that, it was very hard. I knew he’d have a premature death, his kind of tumour has a 60 per cent ten-year survival and he’d survived for 12, so he did well. But we just didn’t expect him to one day just go.”
Anthony came home on a stretcher in mid-January last year, where a special bed had been set up, a bed hoist erected and carers in place to help with his care. Julia, craving normality and certain Anthony still had several months to live, made plans to work a couple of days a week. Everyone, she recalls, was still battling to come to terms with what was going to happen next, which meant his death on March 19 – although hardly unexpected – was still a huge shock.
“I really hadn’t come to terms with it all, the kids hadn’t either,” she remembers. “I expected things to continue for weeks and weeks, but he took a turn for the worse on the Friday and three days later he had died.”
It was 100 days before the couple’s silver anniversary, slap in the middle of son James’ higher exams and just before daughter Cathy’s 19th birthday.
“I look back now and realise how bad things were at the time,” she recalls. “I went back to work gradually but on the days I wasn’t working I’d just stay in bed. You think you are coping, but now I see how bad I was feeling and it’s only now that things are starting to come together again.”
Part of her own healing process has been to focus on the Machu Picchu trek next May, spending spare time training at the gym for the physical demands walking four days and camping out under the stars for three nights. “The longest stretch is 21km, but what makes it difficult is that it’s uphill and at altitude.
“But I know the scenery will be amazing, so I’ll try to focus on that and my target – I want to raise at least £3900.”
Anthony’s 50th birthday was spent in Canada, a fabulous holiday that turned out to be the couple’s last. For Julie’s birthday last week, she asked family and friends not to bother giving her presents, but to kindly donate to her JustGiving web page.
“One of the biggest things for me during that time was the fact that the staff at Marie Curie always asked the right questions and made sure they gave us the right answers in regards to his care at the end of his life,” adds Julie. “Without an insight into those things, it would have been extremely difficult for me to have been able to have my husband home during his final days.
“What’s so great about doing the Inca Trail for Marie Curie is not only will I raise money for such a great charity, but we’d always talked about doing it. It makes it that bit more special. When I found out about the trek – it was like it was supposed to happen.
“There’s always going to be that sadness there, but now I feel I can cope.”
• Julie Read is raising money for Marie Curie. To support her, go to www.justgiving.com/julie-read2.
Danger beneath the surface
Anthony Read survived 12 years after his brain tumour had been diagnosed in 1999, but it’s thought the growth was there much longer.
During much of the time he was able to function well and returned to work soon after diagnosis. By 2002, however, his speech had been affected and he underwent radiotherapy treatment.
He stopped work and progressed well for the following four years.
But his condition deteriorated in 2006 when a scan showed that part of the tumour deep in the brain seemed to have been missed by radiotherapy and had started to grow again, progressing from a low-grade tumour to a high-grade.
He endured further radiotherapy and chemotherapy however the tumour was affecting his day-to-day life – he often struggled with his short-term memory and would get disorientated.
Complex tasks were difficult and wife Julie recalls a challenging period between 2008 and 2009 when Anthony struggled to interact with his children and became quiet and withdrawn.
Julie recalls him enjoying New Year with friends last year, but within days his condition had changed for the worse. He spent several weeks in hospital before returning home where his condition deteriorated rapidly. He died last March.