In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Rachael Harris, from York, was just 30 when, in July 2017, she was diagnosed with an astrocytoma brain tumour. Rachael underwent brain surgery, radiotherapy and chemotherapy but in January 2021, she received the devastating news that her tumour was growing aggressively. Three months later, Rachael died in A&E, following several heart failures. The 34-year-old RSPCA animal carer left behind her heart-broken parents Sally and Alan, her older brother Chris and her partner, Steve.
Rachael’s mum Sally tells her story…
My dad died on 7 July 2017 and it was just nine days later when Rachael had her first seizure, which led to her brain tumour diagnosis. Rachael and her partner Steve were living with us at the time. At around 5am on the morning of Sunday 16 July, Steve came to wake me and my husband Alan, to tell us Rachael was having a seizure in bed. We quickly got up and called for an ambulance. The paramedics came and managed to get her seizures under control, before transferring her to York Hospital. When we arrived, she was having more seizures, so they had to stabilise her before taking her for a CT scan.
“At first they thought she’d had a stroke. She’d lost movement on her right side and her speech was poor. She had the CT scan, but the images weren’t very clear, as her brain was so swollen.”
Rachael was admitted to the stroke ward, where all the other patients appeared to be much older than her, most of them elderly. I found it hard to believe she’d had a stroke at her age. She was slim, didn’t drink a lot, ate a healthy vegetarian diet and had never smoked.
The following day, the consultants came to see her and said they wanted to do more tests. She was sent for an MRI, which petrified her, as she had a terrible needle phobia. She knew she’d need a cannula for the contrast dye, so she asked if I could go in with her and they agreed. As I sat by her side, I saw the young man doing the scan reach for the telephone. Shortly afterwards, two doctors came in and my heart sank, as I knew they were oncologists. I recognised them from the breast cancer treatment I had received at the same hospital eight years previously.
After the scan, we were back on the ward when the same doctors came to tell us they’d found a brain tumour. They weren’t able to tell us much more, other than that it was ‘quite large’. We were all so shocked. Rachael’s speech had come back by now and she immediately asked if she’d have to give up work. She loved her job as an animal carer at the York RSPCA Animal Home. It was her dream career. She’d worked there for eight years and was passionate about the important work she did.
Rachael’s scan images and medical history were transferred to Hull Royal Infirmary and she was discharged from York Hospital. A multi-disciplinary meeting (MDT) took place, during which her case was discussed and a few days later, we were invited to Hull to meet Rachael’s surgeon, Dr Chittoor Rajaraman, or “Dr Raj”, as we were encouraged to call him. He explained that they wouldn’t be able to remove all of the tumour, due to its location in her left temporal lobe and the fact that it was diffuse. The good news was that it was operable and he’d take out as much of it as possible.
“Rachael’s surgery was on 16 Aug 2017 – my birthday. The craniotomy was six-and-a-half hours long. I spent all of that time sitting outside recovery waiting for news.”
By the time they wheeled her out, my legs had gone numb and I couldn’t stand up. None of that mattered, however, when I got the best birthday present possible – a smile from my daughter when she came out of theatre. The fact that she recognised us straight away was an encouraging sign. Later, we found out that Dr Raj had managed to remove around 60% of the tumour.
The histology report from Rachael’s operation revealed her tumour was a grade 2 astrocytoma. Although they are initially slow-growing, they have a tendency to progress to a higher grade over time, usually over a number of years. We were told Rachael was likely to need further brain surgery in the future. They didn’t give a prognosis but left us under no illusion that it was incurable and that it would eventually kill her.
Rachael was transferred to the care of an oncologist and began 30 sessions of radiotherapy. Five days a week, for six weeks, we drove her to and from Castle Hill Hospital in Hull to receive the treatment. It’s an 80-mile round-trip but we were lucky to be able to share the driving between various family members, who all wanted to muck in and help.
Rachael suffered from really bad headaches during the radiotherapy and had to be put on a high dose of steroids to try to keep them at bay. She lost her hair in the area they were targeting but rather than let this get her down, she invested in an amazing selection of wigs. She sourced many of them on eBay, usually from retailers selling wigs for fantasy role-play characters. She didn’t let her treatment dull her sparkle and even bought a bright purple wig, which she wore on Halloween.
“After the radiotherapy, she had a break of three weeks or so before starting on PCV chemotherapy. It made her violently sick from the first dose.”
We had to drive her back to Hull to get stronger anti-sickness drugs and eventually they managed to get it under control but the treatment completely wiped her out; she was extremely tired and unable to work during this time. As well as this, Rachael had to deal with the fact that the treatment would make her infertile. They’d attempted to freeze her eggs beforehand but it was unsuccessful and they didn’t have time to try again. In any case, getting pregnant would’ve been very risky, she was told, as the pregnancy hormones were likely to cause the tumour to grow. It was such a great shame, as she and Steve would have loved to start a family.
After her chemotherapy finished, Rachael was able to go back to work and to get back to some kind of normality. She went out with friends and colleagues, she and Steve enjoyed a break to North Wales and she even took part in a charity Relay for Life, twice. She has so strong and brave, you would never have guessed that she was living with a terminal disease. She had an incredible group of friends from work, who were always there for her and encouraging her to go out and do things. Together, they did a wonderful photoshoot, which I know Rachael really enjoyed.
“In March 2020, when the UK went into lockdown at the start of the COVID-19 pandemic, it was a worrying time. We knew that Rachael was vulnerable and we wanted to protect her from the virus.”
At first, the RSPCA put her on furlough leave but she was desperate to be back doing what she loved. Her colleagues were more like family members than co-workers and she missed them terribly, as well as all of the animals, of course. Rachael always fell for the older dogs that nobody else wanted and she rescued a cross-breed called Mabel, who was nine. She’s a much-loved Staffordshire Bull Terrier cross German shepherd, who we continue to spoil now she’s at the ripe old age of 15.
Eventually, with her doctor’s support, Rachael returned to work. Even though we were still in the midst of the pandemic, he said she was very safe being around animals, rather than humans! She was being scanned regularly, to monitor the tumour. While we were in lockdown, her check-ups and post-scan appointments were over the phone, rather than in person. Towards the end of 2020, Rachael’s headaches were getting worse.
“They brought forward a scan she was due to have in the new year to Christmas 2020. In the first week of 2021, her consultant got in touch to say the images showed her tumour had grown.”
The decision was to re-start Rachael on chemotherapy, this time Temozolomide (TMZ), which could be taken in tablet form at home. By February, however, her headaches were no better and were becoming really debilitating. She was off work again and Alan and I noticed that she would spend most of the afternoon sleeping. They did another scan, which confirmed more growth and they said it was growing deep into her brain, so they were unable to operate. Rachael and Steve were in the process of buying a house. When Rachael’s consultant found out, he urged her not to go ahead with the purchase. We knew what this meant and they pulled out of the sale. It was very upsetting. They’d been saving for a long time and had even started to buy little bits for their first home together. The consultant advised them to take their savings and go on holiday. Rachael replied: ‘where?!’. At this stage in February, we were still in the throes of a major national lockdown and even a trip within the UK was illegal. In normal times, I’m sure she would’ve taken his advice.
One night at the end of March, not long after her 34th birthday, Alan found Rachael collapsed at the top of the stairs. We got her back into bed and rang her nurse in Hull, who told us to bring her in. When we got there, we discovered her blood pressure was incredibly low and the medics were also concerned about her headaches. They did more scans and kept her in for three nights. Rachael hated that stay in hospital and was desperate to get home. Unfortunately, due to the coronavirus restrictions, only one of us could visit her for one hour at a time, wearing full PPE.
Before she was discharged, we met with her consultant, who said the latest scan images showed the tumour was growing very aggressively. He said they would discuss it at their MDT but that he was keen to get her back on PCV chemotherapy. On Monday 29 March, we brought her home.
“We noticed she was having frequent seizures, which were causing her to lose consciousness. She didn’t seem to realise she was having them, unlike the seizures she’d had before.”
On 31 March, Steve had to go to work very early, so I went to sit in bed with Rachael and watch TV with her. We snuggled up watched re-runs of The Great British Bake Off for SU2C. Rachael and I loved baking; it was a shared hobby and we had a giggle watching the programme together. It was so lovely. She and I were extremely close. I felt a couple of times that she’d had one or two more seizures but nothing too serious. But that evening, she had another seizure and Steve came to tell me that she wasn’t coming out of it. We called for an ambulance and when the paramedics came and tried to get her out of bed. she stopped breathing. They managed to get her breathing again but said they couldn’t get an accurate blood pressure reading, as the equipment was faulty. With hindsight, I wonder whether they were protecting our feelings, as it later transpired in hospital that her blood pressure was so low that it wasn’t registering on their equipment either.
The medics allowed me to go with her in the ambulance and when we arrived at York Hospital, she was taken straight into resus. I was given the option of waiting outside but I chose to go in with her. Rachael’s brother, Chris, works as a porter in York A&E and he was on duty that night. We managed to get a message to him to say we were on our way, in case he bumped into us and got a shock. After we arrived, however, he was taken off shift, as it soon became apparent just how critical Rachael’s condition was.
Shortly after arriving in resus, as a nurse was preparing Rachael to be taken for a scan, I noticed she looked as if she was going to swallow her tongue. I alerted the nurse and we then saw her lips turn blue. The emergency buzzer was hit and within moments the room filled with 20 or so people. It was terrifying. Rachael’s heart stopped several times in resus and the team kept bringing her back to life. Alan and Steve arrived and joined Chris and me, as we waited anxiously for news. The trauma consultant came to see us at one point, to tell us that although he knew she had a terminal illness, they weren’t giving up on her. Eventually, however, the time between each cardiac arrest was getting shorter and shorter and her brain was being starved of oxygen. With huge regret, they were left with no choice but to stop resuscitating her. She died at 2.31am on 1 April 2021.
“Although Rachael lived with her brain tumour for four years, it felt like we lost her so quickly in the end. It was so shocking and I’m still coming to terms with the huge sense of loss.”
We are all in so much pain but we are supporting one another through our grief. Rachael’s funeral was a beautiful occasion. It was a humanist service and although numbers within the crematorium had to be restricted, due to COVID, lots of people gathered outside, socially distanced, to pay their last respects. Rachael loved vivid colours, especially purple, so mourners came wearing bright colours, to pay tribute to her.
Rachael was so loved. Since she died, I have been inundated with messages from people I know and people I’ve never met, telling me how special Rachael was to them. She was a beautiful daughter, inside and out, who achieved her dream job and gave so much to the animals in her care. My friend Michelle set up a Facebook Fundraiser in her memory and raised £2,700, which was split between York Animal Home and Brain Tumour Research; two causes close to Rachael’s heart. I am continuing her legacy by organising a Brain Tumour Research Wear A Hat Day with Flowers event. Our local community pub, The Trafalgar Bay, will be the venue for the event on Friday 18 June. There’ll be cakes (a nod to Rachael’s love of baking), crafts including a flower crown-making workshop and, of course, flower-adorned hats. In the evening we’re doing a quiz.
“Through our own tragic experience, I’ve learned just how common brain tumours are among young people and how little funding goes into this area of cancer research.”
I was shocked to discover that brain tumours kill more children and adults under the age of 40, yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease. This just isn’t good enough. My daughter was young, with her whole life ahead of her and she, like too many other brain tumour patients, had her future torn away from her by this cruellest of diseases. I am also passionate about raising awareness of the need for kinder treatments. When a brain tumour patient is given a stark prognosis of just a few years, or worse, months, they should be able to live a good quality of life during that time. Instead, too many people are spending the final stages of their young lives ravaged by harsh, invasive treatments.
Losing Rachael is so painful and still so raw but I vow to continue to be inspired and motivated by her wonderful, caring nature and the bravery and strength with which she faced her illness. I admire her so much and will always be her adoring mum.
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.
Together we will find a cure.