From the heart: Separated by a window as I said goodbye
Despite all the heartbreak he and his family have been through, Nick Harris considers himself a lucky man
Ican’t recall most of what the consultant said, only the howling wind outside, the rain on his window and a few of the phrases: ‘It doesn’t look brilliant… About the size of a lemon…’
It was 19 August 2016. Earlier that day, we’d been for a ‘precautionary’ MRI scan of my wife Helen’s brain to find the cause of the mild numbness in the fingers and toes on her right side that she’d had since June.
Helen was fit, slim, a healthy eater, a lifelong non-smoker. She was 43, with no previous serious illnesses. Now, however, she had a brain tumour.
The doctor wanted to admit Helen immediately. ‘Our girls are 13 and 15. I need to tell them myself,’ she said.
‘OK, but I want you admitted tonight, even if it’s late,’ he stressed.
Driving home, we kept asking each other: ‘What are we going to tell them?’
By the time we pulled into the drive, we’d made the decision that we’d tell them the truth together.
‘Mum has a brain tumour,’ I said. ‘She has to go into hospital, now.’
Daisy, our 15-year-old, asked: ‘Is Mum going to die?’ I told her that we’re all going to die, but that hopefully Mum wasn’t going to die any time soon.
Helen went under the knife at about 8am on 1 September for surgery that lasted six hours. It was some time after 3pm that I got the news that she was awake and the operation had gone well. There are lots of different types of malignant brain tumour, and in the week or so that it took to analyse the excised tissue, I knew far too much about them all.
The night before we were scheduled to meet the surgeon to receive the next piece of news, ‘Which tumour do you have?’, I prayed that it would be the one that gave her a 40% chance of living for five years. Instead, we got glioblastoma, the one with which just 9% of patients live longer than five years, and half of those diagnosed with it die within six months.
The surgeon said that the upside of Helen’s successful operation, a ‘debulking’ of about 85% of the tumour, meant that
THE BEST YEAR
‘MUM HAS TO GO TO HOSPITAL, NOW’
follow-up treatment would be possible, with concurrent chemo and radiotherapy starting in a few weeks. Life as a brain-tumour patient is lived in three-month scan cycles. In the year after Helen’s diagnosis, our cycles went thus: January 2017, post-surgery the remnant of tumour had shrunk, and we felt disbelief, then elation; April, same; July, same.
Later, Helen would describe this as the best year of her life. We went on holiday in Rhosneigr, a village on Anglesey where we went each year, and spent days on the beach at Aberffraw. In the autumn, we went on a mini-break to London.
Then, in October, there were two tiny specks, almost certainly rogue bloodvessel shadows. By November, the specks were two new tumours, growing fast. By December, Helen was having seizures.
Helen was put on steroids and, when it was deemed that all the conventional treatment options for the brain cancer
had been exhausted, two drug trials.
By the end of May 2018, both had failed and we were told that she had three months to live. By late that year, Helen could no longer manage the stairs and we took delivery of a hospital bed for the living room.
TURN FOR THE WORSE
In late January 2019, we stared down the barrel at Helen’s death for the first time. Daisy had left for an interview at university on a Tuesday, and Helen took what looked like a sudden, serious turn for the worse. But she didn’t die.
This was the first of seven occasions when it seemed medically probable that Helen wouldn’t make it. It was absolutely draining. I was Helen’s 24/7 carer, sleeping on the sofa next to her bed, dishing out dozens of pills daily, routinely getting up two or three times each night to help her or give morphine.
In July, a triple whammy of a bad chest infection, a fungal infection in one foot and a nasty skin situation because of the steroids led to Helen being admitted to hospital for 20 weeks. It was clear that she wouldn’t come home again.
We found a place at a hospice, and I visited every day from late morning to early evening. In February last year, we went to Helen’s favourite restaurant
LOCKDOWN VISITS
on her 47th birthday. Although paralysed down her right side, she could manage two to three hours in a wheelchair. Nobody had a clue how Helen was managing to keep on living. And then there was COVID-19. For a short time after the first national lockdown, the hospice was still allowing one person per resident inside for an hour a day. Yet, on a Sunday in late March, this all stopped.
That’s when the outdoor visits started. I would sit on a plastic chair a few metres from an open window to the bedroom, where Helen’s bed had been moved so that she was looking out, with the sun on her face.
By late summer and through the autumn, every visit required a warm coat and an umbrella. To visit Helen during lockdown, I drove a great distance to sit in a muddy flowerbed, usually in rain, and spend an hour or three talking to her. It was, by turns, really rough, absolutely uplifting, mundane, painful, full of love and life-affirming.
In the end, her death was brutally quick. She was poorly, then responding to treatment, laughing with the staff, dipping drastically, and gone.
Among her belongings at the hospice was her laptop, and on it were lots of notes. ‘Advice for my girls’, written in 2018, included ‘Be nice to Dad. He will be brave and good at standing up for you’ and ‘If you have a partner, make sure that he/she can cook a bit.’ She also wrote gorgeous goodbye letters. I gave them to the girls on the morning she died, on Sunday 20 December. I found mine in our wardrobe the next day.
Helen was extraordinary. And that’s before she got diagnosed with terminal brain cancer at 43 and lived with it with a stoicism and lust for life beyond belief.
I’m not heartbroken by the events of her final weeks; I was heartbroken in 2016 and 2019. I’m a lucky man. Sometimes you find life’s riches the hard way.
Nick Harris hopes to raise £40,000 to donate to three charities in honour of Helen’s memory. Visit his page at justgiving.com/ crowdfunding/nick-harris-2020