In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
“We lost my mother in eight months but the tumour took hold before any of us were aware what was happening. Life can change at any moment.”
Here is Janet’s story, as told by her daughter Caroline Copland…
Moo, as we all called her, never liked to sit still. She was a doer; very sociable and chatty, she loved being around people and keeping herself busy and involved with life. My mother cooked lunches for the elderly residents of Abbeyfield in Fulham and helped in the shop at the Royal Brompton Hospital, where she would tell customers off if she thought they were buying too much junk food – such was her nature! Most significantly she was recognised for thirty-five years of tireless work for the RNLI with the Gold award, the highest honour given to those who didn’t actually go to sea.
She wasn’t a huge fan of the modern world really. I remember Moo saying that computers were a passing fad and should someone email her, my father (Sandy) had been known to print out the document, put it in an envelope and post it through the letterbox to appease her distaste for such things. My parents were very much in love, rarely apart, living life to the full together and looking forward to their fiftieth wedding anniversary in October 2014.
The first hints that anything might be wrong came in the run up to Christmas 2013. Moo was a brainbox, mental arithmetic her party piece, so my father was stunned when, in mid-December, while working out a rudimentary measurement she announced that 7x7 was 77. This was his first alert. Mine was on 22nd December when I was a passenger in the car and Moo, who was driving, couldn’t find the brake while approaching a red light. It was suddenly more significant that we had a shop-bought Christmas pudding within our festive provisions, as the homemade version had been binned a few weeks earlier due to Moo leaving out a crucial ingredient. She was a great cook and had made the Christmas pud every year I can remember – Daddy would sneak into the kitchen to add more brandy – and not knowing she would add more herself to address his pleas anyway. It was a sober Christmas and Christmas pudding in 2013.
My parents were due to go away to New Zealand soon after New Year, which gave my growing concerns more focus. I was starting to suspect warning signs of dementia and had shared my worries with my father and sister, Jo. If it did turn out to be dementia, then being on the other side of the world wasn’t going to be the best idea. My father could see that Moo wasn’t her normal self but he hoped she was just tired and needed a holiday.
Moo was always the designated driver in our family because she drank very little – she was far more diligent than the rest of us in looking after herself and staying fit and well. Christmas was strained, with all the unspoken tensions around, and Jo and I were particularly concerned about Moo driving. Jo cleverly and generously gave us all (tucked into Christmas stockings) a voucher for a night in a hotel in the New Forest where we were due to be seeing friends on 26th December. We still weren’t absolutely sure that she was becoming ill and didn’t want to hurt her feelings by taking away her driving privileges. Our Boxing Day hosts, old family friends who happen to include two GPs in their number, commented to us that Moo was much more withdrawn than usual.
By New Year’s Eve, my fabulous mother had deteriorated rapidly. The lady who had handwritten nearly 200 Christmas cards, each full of personal news, at the start of the month now couldn’t write her own name. Her speech was muddled and she was getting more and more confused. It was like she was a different person from just a few weeks earlier and my parents decided that the time had come to get her checked out. My father confided that he thought there was a chance they may not fly out as planned but, of course, it’s a terrible time of year to try to get a doctor’s appointment.
The dreadful search for a diagnosis started on 2nd January. The GP was fully booked until 6th Jan so my father contacted my mother’s consultant cardiologist whose secretary made a special appointment for her at 1pm on the 6th. No better after the weekend, my mother saw the GP on the Monday morning who diagnosed a minor urinary infection and gave her antibiotics – and huge relief. Feeling discourteous to cancel with the consultant my parents also attended the Brompton that afternoon. After many penetrating questions Mr Davies concluded that this was no urinary infection but more likely to be the after effects of a TIA or minor stroke. He arranged for an immediate ECG and provided the names of three neurologists with the advice that my mother should secure an emergency appointment. A frenetic couple of hours then ensued as my father desperately tried to make an appointment with a neurologist that same afternoon or later in the evening, ahead of their flight the following day. After interminable ‘hanging on’ on a number of calls it was clear that no one was available. At one point when a call was cut off my elderly parents actually ran from one hospital to another, only to find there were no neurologists there. Eventually a message came through that a Dr Mendoza might have an appointment – listening to telephone hold music all the way home in a cab (it was now raining) the call was answered as my parents walked through their front door, but then discovered that Dr Mendoza was a neurosurgeon not a neurologist and so not appropriate. My father went back to an earlier contact explaining he was desperate and didn’t know what to do. Neurologist Dr Malik had a clinic in progress at the Cromwell Hospital and, although his list was fully booked, he had agreed to see my mother at 6.30pm that night. After some confusion around which Dr Malik they were trying to see, my parents were at last in the right place for a diagnosis – albeit at a hospital not covered by their health insurance and facing very large bills while still not knowing what they were dealing with medically. Thankfully, Dr Malik could not have been more helpful. An MRI scan was required to confirm if the problem was a TIA or something else – either way flying the next day was not an option. By then it was well after 7pm and the MRI was arranged for the morning at Charing Cross Hospital.
This duly took place and while waiting for the results my mother was asked to go back down to the MRI department for more images to be taken, but Dr Malik invited them to talk to him first. In the consulting room my parents were shown evidence of a modest-sized tumour on the part of the brain that controls numerates and manners of expression which was entirely consistent with her symptoms. On Wednesday 8th January, Mr Kevin O’Neill, one of country’s leading specialists in brain tumours, met my mother. He confirmed Dr Malik’s diagnosis but seemed entirely confident that an operation – to be carried out as soon as possible – would lead to a full recovery. Nonetheless my mother was terrified. She was always a bit of a worrier and this was cancer, in her brain.
Despite her vivacity Moo was a very private person and her way of dealing with the news was to think of it as a period of time to just get through, and then life would get back to normal. She had seen friends go through treatment for breast cancer and get better. She didn’t like a lot of fuss. In fact, Jo and I were sworn to secrecy about her diagnosis, she didn’t want anyone outside our immediate family to know anything. Things moved fast and surgery was scheduled for Saturday 11th January. Jo was due to hold a house-warming party that evening, and Moo insisted it went ahead, as perfect cover. I remember during those first six weeks, Moo travelled to a different supermarket and changed her routine so as not to be spotted by friends in her usual locations when she was supposed to be in New Zealand.
My sister’s party was probably one of the most surreal evenings of my life. Jo and I were topping up glasses of Champagne and putting on a good show of having a happy time, responding with merry mutterings when others asked how the happy holidaymakers were doing. All the time Moo had been undergoing brain surgery less than four miles away since the early afternoon and we were waiting for the all clear to come through. It was a major operation and it was risky, not least as my mother had an existing heart condition and had had to come off Warfarin five days before to ensure her blood would be thick enough to operate. I had my phone in my pocket the whole evening but I actually didn’t hear the call above the party noise – perhaps there was some denial there too – but it was with sense of dread I called my father when I saw four missed calls, Jo and I both choked back tears of relief while excusing ourselves “to check on the cocktail sausages”.
Moo had been indulging in her greatest passion – horseracing – on the hospital TV when the nurse came to take her down to theatre. Shotgun Paddy was in the lead, trained by a great friend and a regular recipient of Moo’s pocket Polo mints reserved for the horses. With another circuit to go my father turned off the television as he knew my mother would have kept the whole surgery team waiting if she had the chance. The very first thing she asked when she woke up was whether Shotgun Paddy had won… he had and it was a very good sign. When Jo and I visited on the Sunday morning, we had ‘our Moo’ back. All of the confusion and jumbled-up words of the previous week had gone. The operation had successfully relieved the pressure off her brain and, despite being tired, her behaviour was instantly back to normal. Our relief was enormous and the hardest part seemed to be over. I can’t tell you how grateful I felt. When you ‘lose’ someone you love so quickly it is quite extraordinary to get them back, to giggle together about some of the confused moments, and to be able to give and receive such huge love and emotion, instead of wondering what’s going on for a silent confused invalid for whom you can do so little.
We knew we still had to wait for the histology report, after they had analysed the resected tumour, but we were all very hopeful – the doctors had said it was near the surface and now it was out. Life carried on. Moo came home and I was back at work after the festive break - keen to catch up and have a good start to the year after my own health problems had set me back in 2013.
It was 16th January, I was working late when I noticed a couple of missed calls from Dad. He sounded a bit out of sorts and said he needed both Jo and I to come over but I wasn’t expecting any more bad news. I was confident that the surgery had dealt with everything.
That evening my parents broke the news that the results were back, the tumour was more significant than previously thought. It had developed roots into the brain, so not all had been removed. Now the tumour had a name – an aggressive glioblastoma multiforme – but it didn’t mean anything to any of us. No one said the words “terminally ill”, but my mother’s prognosis was three months to three years. This was clearly serious, yet we still seemed to collectively feel we could win. Moo was such a strong and determined character but there was a strange, sad calm when we went our separate ways that evening.
I expect we all went through our most painful private moments then. For me, I’d walked for about five minutes before the awful news fully hit me. I remember sinking down on to the ground on a London street and sobbing, utterly devastated. I had been through a tough year personally already and this seemed like the greatest injustice – another battle to fight – and apparently without much hope.
Radiotherapy started on a weekly basis at Charing Cross Hospital in London. Moo was determined to stay as independent as possible, usually going alone on the bus. Sometimes my father would take her. Occasionally I would pop over to surprise her while she waited. No one expects to become a cancer patient and it was jarring to see her sitting in the hospital waiting room, surrounded by those women wearing headscarves after losing their hair. As Moo started to lose her own hair I, after much discussion, persuaded her to have a wig fitted. I was not aware that there were very good and empathetic organisations fitting wigs for cancer patients and somehow we wound up in a seedy theatrical wig department in Bloomsbury paying a lot of money for something she never really felt comfortable with. It pained me when working near Guys Hospital a couple of years later to walk past a whole window of fabulous scarves and hair pieces designed with people just like my mother in mind. After the wig appointment we lay on the grass in Lincoln’s Inn Fields, chatting until Moo fell asleep.
In May we took an impromptu week in Madeira as a family. The tumour was growing again and this was clear not just from the scans, but from the decline in my mother’s mental faculties since the post-op high in January, Nonetheless, Moo made us all laugh by dancing the Conga around the hotel restaurant with the waiters. It was a special time.
Things worsened as soon as we returned home. Within weeks Moo was virtually house-bound and by July she had suffered some bad falls including one when she smashed her head on the basin and was hospitalised for three weeks. The medical team was clearly worried, she needed 24-hour care as her balance had gone and she would fall out of bed, her speech was not good either.
Moo made a definite choice that she didn’t want another operation. It wasn’t possible to resect where the tumour’s roots were embedded so another operation would only buy a little more time – if she survived the surgery. She bravely accepted a new drug that was offered but it left her very unwell. She was desperate to fight the cancer but her body was just exhausted. She wasn’t a young woman but among her last coherent words were: “I’m not ready to die”. Another agonising moment for all of us, and particularly so for my father who would never be ready to lose her.
Things came to a head in a family meeting with her oncologist, Dr Matt Williams, in late July. Moo wanted to come home and Jo was reassuring her that the hospital was the best place for her to be treated and looked after. We were both taken aback, when Dr Williams asked: “Is she really in the best place? I don’t know if there’s any more we can do here.” After the initial shock, we knew he was right. Sometimes it’s kindest to just come out and say it and I’m glad he was straightforward about it. My poor 79-year-old father who had been stuck in gridlocked traffic had not only missed the meeting but had also just climbed 15 flights of stairs, due to a broken hospital lift, was met with the devastating reality that he was to take his wife home to die.
We were kept busy sorting out practical things like equipment, arranging nurses to come in and converting the flat to be suitable for her needs. It soon became clear that my father was on a very steep learning curve in shopping and cooking too. It was important to him to get Moo out of bed and sat at the table together for meals. The idea of her in bed in her nightie all day was too painful for him - so unlike how she used to be. I am certain she appreciated the efforts he went to to ensure she lived as she had done for as long as she could. Sadly, in a matter of weeks, she would be bed-bound and having to be spoon-fed. Her weight plummeted and she didn’t have the strength to stand.
We would try to get her out every day wheeling the chair in the park, we would stimulate her by bringing my sister’s new puppy over to visit, or put the television on for the horse racing. Moo would stare into space, not engaging with anything or anyone much anymore. There were still rare flashes of her old self. I vividly remember, the week before she died, that we were all having a curry, which wasn’t one of her favourite meals but I thought she’d like it, and spoon fed her some of the sauce. Hardly able to speak, it required a massive effort for her to, she opened her eyes wide and with a glint in them she asked: “Are you trying to kill me?!”
It was 5th September 2014 when she died. I was on my way from the office to have a sandwich with her at lunchtime, I said I’d be there by midday but there was a succession of unusual incidents. I got lost, despite having made the same journey frequently around streets I had lived in all my life. I had agreed to pick up sandwiches for everyone but for some reason struggled to make the choices causing further delay. It was as if the day was going in slow motion. As I crossed the zebra crossing underneath Moo’s bedroom window, I paused very briefly to take a difficult work call – it was four minutes past twelve. As the lift reached my parents floor, Jo was yanking the doors open and pulling me out saying ‘quick quick’. I ran into Moo’s bedroom and she was lying still on the bed.
“Is she gone?” I asked the nurse. “Yes, about two minutes ago” she answered. The time of death was registered as 12.04. I felt dreadful that I hadn’t got there in time, but grateful that Jo had been holding her hand. My father had been with her moments before she died, then changed into a smart blazer and tie and sat with his memories and love as she left us. I lay on the bed next to her for quite some time and kissed her warm cheek. She smelt of washing powder from the fresh sheets and she was peaceful, no longer struggling but the desperate loss of all the things she was still looking forward to in life seemed to cling around her.
By 3pm, the GP had been called, my incredible father had already been out to register the death and the undertakers had arrived. I had anticipated her being wheeled out on a stretcher, as they do in crime dramas on the TV, but Jo and I both felt a gut wrench as she was wheeled past us in a body bag, slumped upright on a trolley like a sack of potatoes (to fit into the lift). We stood squeezing hands as she went past and tried to take it all in while also looking at a photograph of Moo with the puppy to refocus those final moments.
My father was waiting downstairs, he gave the undertakers her childhood bear ‘Tedda’ who had sat dusty on a shelf for as long as I could remember and also her wedding dress, which she had made herself. His instructions were that she should be cremated with the bear and she should be wearing the dress. Moo died just a month before their fiftieth wedding anniversary.
On what would have been their Golden Wedding Day, we scattered some of her ashes in the churchyard where she worshipped and had been a history guide for visitors. We also scattered them from the RNLI’s central London Tower station where the Lifeboats left their moorings to give her a near-shore salute. Four days later we had a fabulous celebration of her life with over 300 of her friends attending.
Just a few weeks later Jo saw a poster advertising Wear a Hat Day, Brain Tumour Research’s annual fundraiser. The chosen date that year was 26th March – by amazing coincidence Moo’s birthday. As is Jo’s style she bought us all a Brain Tumour Research baseball cap and of course we all wore them on the day. That was my introduction to the charity.
The brain tumour was so unfair; being indiscriminate there were no risk factors to manage – she always managed health problems so well and overcame them – there are no preventative measures that people can take to protect themselves, and of course very few effective treatment options.
For the next two years I painted and had printed my own Christmas card and donated the money I might have spent on cards to Brain Tumour Research, so this year, with a little bit of practise behind me and inspired by the charity’s Hope Tree Christmas appeal, I offered to design one for the charity to sell commercially. I was surprised and thrilled when they accepted my offer and also suggested including a dedication to my mother inside.
Would she be proud? Honestly, Moo would be horribly embarrassed but she would certainly be proud of the efforts I’ve made to fundraise for vital research to save others from the same fate. My father works with a smaller charity specifically focused on fund raising for research into brain tumours at Charing Cross Hospital and Jo’s volunteer work includes a well-known cancer charity linked to the world of horse racing. We had a powerful teacher!
I really believe in this cause to beat brain tumours. We lost Moo in eight months but the tumour took hold before any of us were aware what was happening. Life can change at any moment so you have to do what you love and always what you think is right. Since Moo died I set up my own business to focus on what I do best and give more time to that which I love most.
Brain tumours are indiscriminate; they can affect anyone, at any age, at any time. 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.
If you have been inspired by Janet’s 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.
The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.