'Sometimes life's riches are found the hard way'
By Nick Harris
10 January 2021
It was about 10pm on Friday 19 August 2016, and Great Britain’s women’s hockey team were playing in the Olympic final in Rio de Janeiro. I was in my car on the forecourt of a petrol station in the west of Scotland, crying.
Eight hours earlier we had been for a ‘precautionary’ MRI scan of my wife Helen's brain. That was to find out the cause of the mild numbness in the fingers and toes of Helen’s right hand and foot since June.
An hour after the scan, and nearly home, the consultant called my mobile and asked us to turn back. An hour after that, we were in his office. I can’t recall most of what he said. I remember the howling wind outside. The rain on his window. A few of the phrases.
“It doesn’t look brilliant ... About the size of a lemon ... Can’t be certain. But the dyes suggest malignant.”
It was a brain tumour.
Helen was fit, slim, a healthy eater, a lifelong non-smoker. She was 43. With no previous serious illnesses.
Did I mention this was the worst day of my life?
We made the case to the consultant for going home; he wanted Helen admitted immediately. “The girls are 13 and 15, I need to tell them myself,” Helen said.
“Okay, go and tell them, but I want you admitted tonight, even if it’s late.”
We drove home. Our mobiles were ringing every few minutes. It was the girls, and then H’s parents, then the girls again, trying to find out where on earth we were. We ignored every call.
As we drove, we repeated the same thing over and over to each other. What are we going to tell them?
As we pulled into the drive, about 5pm, we’d decided: the truth. “Mum has a brain tumour. Probably malignant, but not definitely. She has to go into hospital, now. There’s a risk of seizure or brain haemorrhage at any time. Hospital is safest. Over the next few days the doctors will decide what to do. Whatever happens, we’ll do it together.”
Daisy, then 15, asked: “Is mum going to die?” My response: “Daise, we’re all going to die. Hopefully mum isn’t going to die any time soon.” I don’t remember how Isabel, then 13, reacted. But, now 17, she recalls the moment: “You and mum came into the lounge. I could tell you’d been crying. I put my hands over my ears. I didn’t listen.”
Helen packed some stuff: pyjamas, toothbrush, knickers, a book, a notebook. We drove to the hospital and the girls came too. They wanted to see where Helen would be. The nursing staff were so compassionate they might as well have been … angels.
Helen was admitted, and it was about 8pm. The nurses said I could sleep in her room, given the circumstances. I drove the girls 45 minutes back to H’s mum and dad. I turned round and drove back to the hospital. I was wiped out, physically and emotionally. I pulled onto that forecourt. Team GB women won hockey gold, and I was bawling my eyes out.
You will realise by now why this website has mostly been mothballed these past four and a half years. I have a full-time job with a newspaper and previously I've done that while running this site. But since Helen's diagnosis I’ve been incapable of doing two full-time jobs. So the website has, largely, lain dormant.
Helen wasn’t a sportswriter, or even much interested in sport (or more accurately, most coverage of sport), a subject she discussed in this brilliant column. She also wrote pieces on the intrinsic sexism around sport and parenthood and a few other things on here.
Helen and I also co-wrote a book, published in 2012, about an ‘athlete’ who was, arguably, the world’s first trans-Atlantic sporting superstar, and certainly the first to be embroiled in a cocaine scandal. In 1876.
We met in September 1995 on a post-graduate journalism Diploma course in Glasgow. The first time I saw her, Helen was standing on a table, delivering some daft speech as part of a role-play exercise. There was a sparkle and she was cool.
We were both seeing other people but became good friends - just friends. My dad was really ill and I went home to Nottingham to see him for an extended Christmas break. The pipes in my flat burst while I was away. Helen, who lived nearby, saved all my stuff.
When I got back to Scotland my flat was uninhabitable for a while. Helen let me sleep on her floor that whole time. Still just friends. Dad died in March 1996 and Helen was so supportive.
I won airline tickets to anywhere in the world in a student journalism competition. I asked Helen if she fancied back-packing to India with me in the summer, as friends. She said yes.
In April we both did work placements. Helen went to Oxfam in Oxford. I went to the Daily Nation in Nairobi, Kenya. While there, I bumped into my best university mate, Zia, literally, in the street. He was now an aid worker.
He'd just got a new laptop and - this was incredible - a portable printer! Who would I write a letter to, to test drive it? My mate Helen.
"Dear Helen, you won't believe who I bumped into in the street" ... blah blah ... "hope Oxfam is going well" ... blah blah.
This was before mobile phones, for us at least, and pre-email. So I had to go to Nairobi central Post Office to fax it. (The fax is still in a box somewhere).
The evening I got back to Scotland, we went out for curry. My flat was ready to be lived in again. A few of my things were still at Helen's. We went back for me to get them. We were now both single.
"You don't have to go back to yours tonight," she said. "If you don't want."
And that was that.
That summer we went to India, and then moved together to London, where I had a job waiting. Helen wrote for local papers, then a trade magazine, then became a press officer for The Wildlife Trusts, a job she adored. Later she would work for another charity, Maggie's, and a few months after her long-term contract there expired, she was diagnosed with cancer.
Brain surgery to remove a tumour can take a lot of pre-op preparation. Scans, lengthy questionnaires, tests. The surgical team were clear from the start they wouldn't get it all - it was in a tricky spot, wrapped around sensitive parts of the frontal lobe. The more tumour they got out, the higher the potential risk of damage to, among other things, language function.
Helen was, by profession, a communicator. Language mattered.
She went under the knife on 1 September 2016. She FaceTimed me at home at about 8am to say she was being taken down to theatre. I was told to call the hospital after midday to see if she was out, but not to worry if she wasn't. She wasn't. Nor at 1pm. Or 2pm. Surgery lasted six hours and it was sometime after 3pm that I got the news she was awake and the operation had gone well.
Our dog, Lottie, has rarely had a longer walk.
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 and get the news - which tumour do you have? - I prayed to a God I don't believe in that Helen's tumour would be the one with the 40 per cent chance of her living for five years. That would have been good news.
Instead, we got glioblastoma, the one where just nine per cent live longer than five years. And half of those diagnosed with it die inside six months.
The surgeon said the upside of the successful operation - a tumour "de-bulking" of around 85 per cent - meant that follow-up treatment would be possible: concurrent chemo and radiotherapy starting in a few weeks.
I'll be candid: I've had better mornings.
We got home and broke the news, to H's parents and the girls. “It’s malignant and it’s the bad one.”
Helen’s mum actually gasped and put her hand to her mouth. She asked us how long Helen would live.
We said we didn't know. That Helen should do better than many because she was young and fit, had had "successful surgery", and had been well at diagnosis. But we also said the average life expectancy was 15 months.
Isabel, 13, was in the armchair in the corner, just watching us, and I can still see the cogs whirring. She was hesitant. I walked towards her. She said: “But not Mum?”
"I don't know, Izzy," I said. "Nobody knows. But Mum still has treatment options. So on we go, and we'll all look after each other."
"Yep," said Isabel.
It wasn't the most convincing yep I'd ever heard.
My heart was breaking.
But I resolved: we can do this. We can’t stop Helen dying but I can protect her and the girls.
I'm writing this bit late at night on 30 December 2020. Earlier today I went to collect H's belongings from the hospice.
Among her things was her laptop, and on her laptop were lots of notes. Clearly she intended for us to find and read them. 'Advice for my girls', written in 2018, was one, and in it Helen wrote how "2017 was the best year of my life."
Her favourite memories of 2017 were from a holiday in Rhosneigr (a village on Anglesey where we went each year); and days spent on Aberffraw's magnificent beach and dunes; and of "hanging around in London" during an autumn mini-break that included biking around the Olympic Park and going to see Camille at the Barbican.
They were from a "fun afternoon" at the University of Manchester, as Helen and Daisy scouted the latter's first-choice uni option and Helen got a glimpse of her little girl's grown-up future. They were from seeing The National in Edinburgh and Laura Veirs in Glasgow and Sigur Rós at the Armadillo.
After the joys of 2017, Helen moved onto her advice, including: "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."
There were tips on laundry and cooking, and men (avoid people who treat you badly).
And: "Go into the woods, it always makes me feel better. Every time I am walking in the woods, I always remember you, whatever the weather. In the sun, the bluebells and honeysuckle are scented with gorgeousness, don’t let it drift away."
Life as a brain tumour patient is lived in three-month scan cycles. Our 2017 cycles went thus. January: post-surgery remnant of tumour had shrunk. Disbelief, let it sink in, elation. April: same. July: same. October, sort of the same but there were two tiny specks, almost certainly rogue blood vessel shadows. "Let's scan again in six weeks this time, not three months," said the oncologist. November. Those pesky specks were two new tumours, growing fast and threatening. The end was nigh. Except it wasn't.
The seizures had started in December 2017. They were mostly small things - a twitchy arm or leg for a second or two, then a blankness in Helen that might last anything from a few minutes to a day. That's when the steroids started.
Helen was terrified now that a grand mal would be next, that one day soon she would be convulsing and choking and helpless.
Again the NHS came to the rescue, this time with counselling for anxiety. And then, when it was deemed that all the conventional treatment options for the brain cancer had run out, with two drug trials.
By the end of May, both had failed. Prognosis: three months to live.
Helen was dazed, and scared. All I could do was wrap her in a hug, and when this latest news had started to settle, a few days later, she said: "Right then, let's do some stuff."
That year we went to Rhosneigr, again. And the Lakes. And the Highlands, twice. We went to London in the summer specifically to eat at Gymkhana, which we reached via a long, slow walk across Green Park. Helen was getting much more tired by now, and struggling to move fast. Steroids are wonderful and terrible things. Life-savers that can leave you moon-faced and putting on weight, and sleepless. Long-term use leaves permanent striations on the skin, which in turn thins in places to tissue paper.
But Helen was stoic, and determined. We went to Edinburgh specifically to eat at Martin Wishart in Leith. We laughed a lot, at all kinds of stupid stuff, and particularly loudly when the four of us went to The Meg, a schlocky Jason Statham B-movie about a 75-foot megalodon shark, on a Hollywood budget. Truly so-bad-it's-good territory.
It was the only option that day at our local independent cinema - a converted church - and we had the place to ourselves. Almost precisely 19 years earlier, this same room had been packed with our family and friends, at our wedding.
Not long after The Meg, in late 2018, Helen could no longer manage the stairs. We'd reached the grim point when we had to take delivery of a hospital bed for the living room. I was certain that Christmas 2018 would be our last together. I was wrong.
We stared down the barrel at Helen's death for the first time in late January. I can safely say that 2019 wasn't close to being the best year of any of our lives, although there were still bright days, an inexplicable revival, and kindness from strangers that made all of us weep - except Helen.
Daisy left for an interview at Manchester University on Tuesday 29 January and Helen took what looked like a sudden, serious turn for the worse. It might have been a seizure or a bleed: we'll never know. But she became barely responsive. Her breathing was bad. She became unable to swallow. When conscious she was agitated and confused.
By the evening, a doctor and Helen's palliative care nurse were in agreement that time was short. They asked when Daisy was due back. I said Thursday. They said that might be too late.
After all this time, I told myself this is what it feels like. Helen is actually going to die in the next day or two. My head was spinning. What do I need to do now?
I went to Isabel's bedroom to tell her. My second heartbreak in this saga.
I called Daisy in Manchester to break the news. She was devastated. Goodness knows the inner strength she drew upon to attend her interview the next day. But she did. (And got in).
She planned to come back up to Scotland immediately afterwards. But Helen didn't die, and even as Daisy headed for her rebooked train, was starting to respond again. While not well at all, she would live until Thursday. Then she rallied further. And further.
This was the first of seven occasions between January 2019 and summer 2020 when it seemed medically probable that Helen wouldn't make it. There was another episode at home a month later, then two more during 20 weeks in hospital later in 2019 (pneumonia then sepsis). And three in the hospice (heart scare January 2020, then possible seizure / bleed, then persistent pulmonary embolism twinned with triple back-to-back chest infections). Helen rode them all much better than the rest of us.
It was absolutely draining. In every way. But always good to reach the other side and see her back.
January to July 2019, for me, was a slog. I was Helen's 24/7 carer, sleeping on the sofa next to her hospital bed, dishing out dozens of pills daily across seven time slots from 7am to 10pm, and routinely getting up two or three times in the night to help her, or give morphine.
One saving grace was that as her illness progressed, Helen's short-term memory went AWOL. If she had a terrible day, she couldn't remember it the next day. She watched all seven seasons of Parks and Recreation multiple times. Thank you, Ron Swanson and Leslie Knope.
Helen's long-term memory never went awry. Even in her last few days I'd be talking to her about our Finland adventure with the girls in 2007 or our jaunt around India in 1996 or the train to Barcelona in 2014 and she'd remember where we ate, and what we ate. But she couldn't remember what she'd had for lunch 20 minutes ago.
So to July, and a triple whammy of a bad chest infection, a fungal infection in a foot due to being bedbound, and a nasty skin situation due to the steroids. Helen had to be admitted to hospital.
I was shattered that I hadn't been able to keep looking after her at home. Shattered emotionally if not physically; and psychologically that I had "failed". (Later, I realised I hadn't failed, but, then, I was shattered, on the brink. Not depressed, not suicidal, but angry and self-loathing).
The care at the local hospital - the NHS again - was astonishing. For 20 weeks. It was clear Helen wouldn't come home again (bone-deep guilt again at having failed). But who knew that the vast majority of care homes in the UK won't take under-65s? And those few that do are likely hours from your home? And that 24-hour nursing at home just isn't a thing under our broken social care system, unless you're a gazillionaire?
Then out of the blue there was a place at a hospice. And Helen moved there, and I went there every day, from late morning to early evening. We ate lunch together, and maybe watched a film. She took a nap while I nipped out for a walk. I came back and worked until she woke. She watched TV or listened to a pod while I worked more but at least I was there.
Over weeks and then months up to Christmas, from nowhere Helen was starting to engage more, and, though paralysed down her right side, was up in a wheelchair for a few hours a day. Katie, one of Helen's oldest friends who is a professional artist, brought pastels and brushes and a sketch pad and suddenly Helen was painting squirrels and seascapes and flowers. (H had been right-handed but taught herself to do everything with her left).
Helen was also texting for the first time in five months. Nonsense texts (due to her aphasia) but texting, and occasionally taking photos of her feet or the ceiling. By early December 2019, Helen seemed in many respects better than she was in December 2018.
Residents who were able to spend a few hours in a wheelchair and arrange wheelchair transport were encouraged to go out for Christmas lunch. I'd left it too late to find a table for six (us and Helen's parents) anywhere within 30 miles, at any price.
I did find a table for two and a table for four at Miller and Carter in Glasgow, albeit at different times. It would cost north of £500 for the six of us but we'd be under the same roof. I booked. The next day I got an email from the restaurant asking if I’d intended to make two bookings for myself for different numbers of people at different times.
I replied, explaining the circumstances, and they said they'd do a table for six at the same time. They rang me the next morning and I had my credit card ready to pay. “It’s on us," they said. "You don’t need to pay anything. Just have a lovely day.”
When I told Helen about this wonderful act of generosity from strangers, she bunched her left fist like she was an eight-year-old scoring a worldie in a five-a-side and said: “Yessss!”
We went out to another restaurant, her favourite, on Helen's 47th birthday, in early February. Two to three hours in a wheelchair was Helen's maximum by this stage, but for good food: worth it.
In March we went to the cinema, to see 1917. And then for lunch at Nando's - the first time either of us had ever been.
Literally nobody had a clue how Helen was keeping on living. Almost two years after being discharged with three months to live, a fascinated brain tumour research consultant invited Helen for another scan and a meeting to see if he could learn anything.
The upshot: Helen was obviously extremely poorly and terminally ill but, for reasons unknown, and that will never be known, her tumours in early 2020 were not significantly bigger than in 2018, and perhaps overall slightly smaller.
And then there was Covid. For a short time after national lockdown 1.0, the hospice was still allowing one person per resident inside for one hour per day. But on a Sunday in late March, they said: “Sorry...”
And in the circumstances, I agreed with the policy.
That’s when the window visits started. At first, it was fine, if less than perfect. The weather was glorious. For months it seemed.
Window visits were, in this period, actually visits on plastic chairs a few metres away from an open patio door to the bedroom, where Helen's bed had been moved so she was looking out, with the sun on her face, and I was looking in.
Some days were better than others. In the west of Scotland it's wet and by late summer, and through the autumn, every visit required a warm coat and umbrella. In lockdown alone, to visit Helen I drove more than the distance from Scotland to Australia to sit in a muddy flowerbed, usually in the rain, to spend an hour or three talking to her.
It was, by turn, really rough, absolutely uplifting, mundane, painful, full of love, and life-affirming.
In the end, it was brutally quick. She was poorly, then typically responding to treatment, laughing with the staff, dipping drastically. And gone.
Isabel made this video. (But read below first)
Helen wrote gorgeous goodbye letters to Daisy and Isabel in late 2017. I gave them to the girls on the morning she died, Sunday 20 December.
Helen and I had agreed way back she didn't need to do one for me. But she did one anyway, and I found it in our wardrobe the day after the girls received theirs.
I'm sitting in our lounge now, in the early hours of 2 January 2021, and the card is on the arm of the chair.
Every sentence is .... amazing.
To summarise: "Life is going to get hard for us. You'll take care of me and the girls. I love you."
Helen was extraordinary. This genuinely isn't some sort of post-death revisionism. She really was.
Beautiful – in all senses – and mischievous and smart and poetic and funny and kind and .... (forgive me boasting about my wife).
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.
And then - as she predicted to me in her 2017 card but could never have been sure of - I stepped up.
I was the best husband and dad for these four and a half years, in a way that was contrasting to the 60-65 per cent best husband / dad I was before that. Because when life is just, ordinary, it's so easy to coast along at 60-65 per cent.
Helen was my best friend. She made me a better person.
I'm not heartbroken by recent weeks - I was heartbroken in 2016 and 2019.
I'm a lucky man. Sometimes you find life’s riches the hard way.
The girls set up the page linked here to help people who helped Helen. If you're able to donate, even a couple of quid, thanks SO much. And in these roughest of times, no problem if not. Instead go out of your way to tell someone you love them. Look after your people. xxx.