In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Mum-of-two Helen Harris, from Helensburgh, Argyll and Bute, was 47 when she died from a brain tumour in December 2020, just a few days before Christmas. Having been diagnosed with the disease in 2016, Helen was given three months to live in 2018, after her last treatment failed – but defied medics to live for another 30 months. The former journalist and press officer spent the final year of her life in a hospice, where her family could only carry out window visits during the coronavirus lockdown.
Helen’s widower Nick tells her story…
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 Helen’s brain. They were trying to find out the cause of the mild numbness in her fingers and toes, which she’d been experiencing since June. Prior to the numbness in her extremities, there had also been a strange episode where she’d been out walking our dog, Lottie, when she realised she couldn’t call out Lottie’s name. She saw the GP and was misdiagnosed with stress.
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.
“He said it didn’t look brilliant. It was ‘about the size of a lemon’ and that the images suggested it was high-grade. What was certain was that it was a brain tumour.”
It didn’t make sense. Helen was fit, slim, a healthy eater, a lifelong non-smoker. She was 43 with no previous serious illnesses. It was the worst day of my life. The consultant wanted to admit Helen immediately but we made the case for going home; our girls, Isabel and Daisy were 13 and 15 at the time and Helen wanted to tell them herself. He agreed but wanted her back at the hospital that night, even if it was late.
We drove home. Our mobiles were ringing every few minutes. It was the girls, and then Helen’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?’. By the time we pulled onto the drive, at about 5pm, we’d decided: the truth. We told the girls that Mum had been diagnosed with a brain tumour, probably high-grade, but not definitely.
“We explained that she had to go straight to hospital, as there was a risk of seizure or brain haemorrhage at any time.”
Daisy, then 15, asked: ‘Is mum going to die?’. My response was that we’re all going to die eventually and that hopefully Mum wasn’t going to die any time soon. I don’t remember how Isabel, then 13, reacted. But, now 17, she recalls the moment that Helen and I came into the lounge and she could tell that we’d been crying. She put her hands over her ears, as she didn’t want to listen.
Helen packed a bag and we all drove to the hospital together. The girls wanted to see where their mum would be. The nursing staff were so compassionate, they might as well have been angels. Helen was admitted at about 8pm. The nurses said I could sleep in her room, given the circumstances. I drove the girls 45 minutes back to Helen’s mum and dad, then turned round and drove back to the hospital. I was wiped out, physically and emotionally. I pulled onto that forecourt. Team GB women won gold in the hockey and I was bawling my eyes out.
“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 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 Maggie’s, a charity providing free cancer support and information in centres across the UK and online. A few months after her long-term contract there expired, she was diagnosed with cancer.
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. At 1pm she still wasn’t out, nor at 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, had rarely had a longer walk.
There are lots of different types of high-grade 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 biopsy results, 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 multiforme (GBM), the one with a devastatingly short average survival time of just 12 to 18 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 chemotherapy and radiotherapy starting within a few weeks. I’ll be candid: I’d had better mornings.
We got home and broke the news, to Helen’s parents and the girls. We told them the tumour was high-grade and it was “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. We thought that Helen should do better than many because she was young and fit, had had ‘successful surgery’, and had been well at the point of diagnosis. But we also said the average life expectancy was just 15 months. Isabel was in the armchair in the corner, just watching us, and I could see her cogs whirring. She was hesitant. I walked towards her. She said: ‘But not Mum?’. I told her that I didn’t know. That nobody knew but that Mum had treatment options so on we would go, looking after each other every step of the way.
“My heart was breaking but I resolved we could do this. We couldn’t stop Helen dying but I could do my best to protect her and the girls.”
In 2017, even though she was terminally ill, we did so much and made so many wonderful memories. We went on nice holidays, squeezed in as many gigs as we could and ate out at all the restaurants she liked. How many people in what may have been the last year of their life look back and say it was the best year of their life? Her favourite memories of 2017 were from a holiday in Rhosneigr (a village on Anglesey in North Wales where we went each year), days spent on Aberffraw’s magnificent beach and dunes and hanging out in London during an autumn mini-break that included biking around the Olympic Park and going to see Camille at the Barbican theatre.
We spent 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. She saw American rock band The National in Edinburgh and singer-songwriter Laura Veirs in Glasgow and Icelandic post-rock Sigur Rós at the SEC Armadillo in Glasgow.
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. The oncologist decided to scan again in six weeks’ time.
“November: those pesky ‘specks’ were two new tumours, growing fast and threatening. The end was nigh. Except it wasn’t.”
The seizures 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 whole day. That’s when the steroids started. She took cannabis oil, which seemed to dampen the seizures but Helen was terrified 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 the Michelin-starred restaurant 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, sleepless and suffering from joint pain. 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 see 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 2019. 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 was actually going to die in the next day or two. My head was spinning. 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.
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 but her long-term memory never went awry. I’d talk 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.
In July, 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 meant that Helen had to be admitted to hospital. I was shattered that I hadn’t been able to continue looking after her at home. I felt that I had ‘failed’. The care at the local NHS hospital 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 to be several hours’ drive 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 St Margaret of Scotland Hospice in Clydebank, West Dunbartonshire, 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 podcast 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. (Helen had been right-handed but taught herself to do everything with her left hand).
She 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 had been the previous December.
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 manage to 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, Ox and Finch in Glasgow, on Helen’s 47th birthday, in early February. Two to three hours in a wheelchair was Helen’s maximum by this stage, but it was Helen’s favourite place to eat and for good food, it was 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 the first national lockdown, 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, typically responded well to treatment, laughing with the staff, then dipping drastically. On Sunday 20 December 2020, having tested positive for COVID-19, she died.
Before she passed away, Helen and I had discussed her dying wishes, which included her desire to donate her brain to medical science. I was keen to ensure that her wish could be fulfilled but unfortunately, another impact of coronavirus was that the morgues were full and they weren’t able to take her brain for research. She also wasn’t able to have the coffin she’d chosen, which was re-cyclable, as it wasn’t COVID-compliant. And only 18 mourners, including the girls and myself were allowed to attend the crematorium for her funeral, due to social-distancing rules.
“Helen wrote gorgeous goodbye letters to Daisy and Isabel in late 2017. I gave them to the girls on the morning she died.”
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. To summarise, it read: ‘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 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 in her 2017 card but could never have been sure of – I stepped up. I was the best husband and dad for those four-and-a-half years, in a way that was contrasting to the 60-65 percent 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.
“On Christmas Day 2020, the girls and I decided to set up a fundraiser in memory of Helen, and Isabel made a touching video compiled of family photographs and home movies as a tribute.”
So far it has raised more than £39,500 from generous donors, funds which will be shared equally between Maggie's, the wonderful charity where Helen worked in her final job, Brain Tumour Research and the hospice where Helen spent the last year of her life. The response has been amazing. We set out to raise a few thousand pounds. We always hoped it would be more. Every single donation is massively appreciated. Every message. Every gesture of goodwill.
Helen would be part-mortified and part-thrilled. She would be embarrassed by the fuss and absolutely loving that charities she cared about so much were going to receive a windfall. Helen was helped by so many brilliant people and organisations, we wanted to raise a bit of money, and pass some love on, and help a few people in her memory.
I love and miss her more than words can express. Helen was my best friend. She made me a better person. I wasn’t heartbroken by her death. I was heartbroken in 2016 and 2019. I’m a lucky man. Sometimes you find life’s riches the hard way.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
If you have been touched by Helen’s tragic story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.