Speaking to The Brain Tumour Charity during the pandemic in 2020 and ahead of Harriet passing away last August, she and her sister Bea have shared their story and the family’s motivations to help find a cure for the awful disease which tore them apart.
A young woman who was diagnosed with a brain tumour when she was just 27-years-old and has faced grueling treatment ever since has, along with her friends and family, raised over £200,000 for The Brain Tumour Charity to invest in potentially life-changing research.
In May 2017, Harriet Downing from Surrey was living and working in London when she began having headaches which got progressively worse over the following six months. She initially thought that they may be migraines, which run in the family, but she noticed that they got worse when she was moving, lifting things or exercising.
So, she kept a headache diary to note down what she had eaten each day as well as the activities that she had done. She then went to her GP who prescribed migraine medication and referred her for an MRI scan which was booked for August – a few months away at the time.
However, with a big family holiday to California coming up, Harriet had an MRI scan carried out privately instead in April. On the same day as the scan, the specialist called her and told her to go to Hammersmith A&E by taxi – not the tube. Further scans revealed the mass on Harriet’s brain.
Harriet said: “No one really tells you what’s happening at that early stage – the word ‘cancer’ isn’t really used. The medical teams were all tip toeing around me but in the back of my mind I knew what it was. Deep down, as I knew that it something bad, when I was actually told that it was cancer, it wasn’t such a huge surprise.
“My family were sitting next to me and sobbing which was so difficult. In a way, it’s easier when it’s happening to you because you can control it. But it also impacts on those around you and I was holding their hands and telling them that I would be OK.”
Further scans and tests confirmed that the mass was a primary high grade medulloblastoma. She had surgery 10 days later which removed most of the tumour. This was followed by six and a half weeks of daily chemotherapy and radiotherapy as well as further chemotherapy for another six months after that. Harriet also had fertility treatment to freeze some of her eggs in the hope that she may become a mother in the future.
A few months later, in February 2018, Harriet had every reason to celebrate with her family – it was her 28th birthday and her chemotherapy had come to an end alongside confirmation that there was no evidence of any tumour remaining in her brain.
Harriet went back to work full time after a break over the summer and began living a happy life again by seeing friends, spending time with family and just trying to return to normal.
However, just six months later, Harriet’s jubilation would come crashing down around her. She found a lump in her neck which her GP said was likely to be a reactive lymph node due to her treatment. However, a routine check-up with her oncologist and follow-up surgery led to confirmation that the medulloblastoma had spread to the lymph nodes in her neck. This awful news that the cancer had returned and Harriet would need more cancer treatment came just two days before Christmas.
The family were left in shock that Harriet’s health was threatened once again, particularly as primary brain tumours rarely spread outside the Central Nervous System, yet hers had unfortunately done so.
At the beginning of 2019, Harriet had surgery to remove 160 lymph nodes from her neck. But scans after the surgery also showed that the cancer had spread elsewhere. Harriet’s life was once again put on hold and, since then, she has had a variety of chemotherapies in further attempts to keep the cancer at bay.
In June 2020, in the midst of the Coronavirus pandemic, Harriet and her family were given the devastating news that the treatment was no longer working. She had begun treatment with a view to having a stem cell transplant and she had completed Phase 1 for this where 4 million stem cells were harvested. But, as she underwent the high-dose chemotherapy she required ahead of the second phase, Harriet was told that her cancer was no longer responding to any treatment. She is now terminally unwell yet determined to enjoy the time she has with her family, friends and a glass of wine in her hand.
Harriet said: “I began 2020 by partying in Cape Town for my 30th birthday and then travelling to Miami for work. Then, the pandemic hit and the doctors told me that there was nothing else that they could do for me.
“Usually, when you hear something like that, I think most people would make the most of their time by hopping on a plane to go on holiday or seeing their friends as much as possible. But obviously we haven’t been able to do any of that.
“We have just made the most of what we do have and enjoyed socially distanced gatherings at my garden flat. Really, people think that lockdown has made it all so much worse for me but that’s not been the case. Instead, the pause on life as we used to know it has given us quality time together as a family which we may not have had otherwise.”
Harriet has always has a very pragmatic approach to her situation – not once has she asked ‘why me’ or felt sorry for herself. Instead, she and her family have found admirable inner strength to channel their energies into fundraising for The Brain Tumour Charity.
Just eight weeks after Harriet’s first diagnosis, the family held a fundraising Rounders tournament, barbeque and raffle which raised an amazing £20,000 – smashing their target of £5,000.
The fundraising didn’t stop there – over the last few years, Harriet’s family and friends have held a whole host of fundraising activities including a Charity black tie auction, annual Christmas carol services, a second hand clothing sale, a treasure hunt, a prosecco and bake sale, a music gig, wine tastings and several sporting events. They have raised a huge amount of money so far – over £200,000 – which is to be spent on research into treatment options and finding a cure for brain tumours.
Harriet said: “We are a pragmatic family so very quickly we knew we wanted to funnel our energies into something positive. Really, it was a coping mechanism for us all – fundraising became a distraction.
“The first Rounders tournament was on the hottest day of that year and I had to stay out of the sun because of the treatment I was having. So, I umpired instead. I had someone holding an umbrella above me to create shade and I shouted at the players – it was great. It really was so nice to have everyone coming together for a good cause and we really did feel the love on that day.
“I am fortunate because the chemotherapy didn’t impact on me as badly as it does for other people. That summer, of course, wasn’t the best of times to be going through it but I could have felt worse. The good weather helped to keep my spirits up – as did the amount of time I spent with Bea watching Love Island!”
In 2017 when the family first searched online for a charity to fundraise for, they were immediately struck by The Brain Tumour Charity. The organisation is the world’s leading brain tumour charity and the largest dedicated funder of research into brain tumours globally. It is because of Harriet’s specific tumour type, how it rarely presents in adults and how it is unusual for it to spread that the family want the money they raise to be funneled directly into research.
Harriet’s sister, Bea, said: “Back in 2017, The Brain Tumour Charity was an even smaller charity than it is now which is exactly what we were looking for. We wanted the opportunity to build a relationship with the people at the organisation and we have absolutely done that with the wonderful team who have supported us over the last five years. When we attended the charity’s flagship event, The Twilight Walk, we were amazed that people knew who we were.
“We also wanted a specific focus on research into brain tumours, which is such a neglected and underfunded area of cancer research.”
Harriet added: “The oncologist told me that only a handful of people in the world receive my diagnosis and so treatment is almost guesswork because of that. I am the type of person who wants to know all of the facts so my diagnosis, and the little information known about it, was particularly difficult for me.
“Even in the early days, my diagnosis was almost a relief as it answered the questions I had about what was happening to me in the time leading up to that day.”
In another cruel twist of fate, Bea and Harriet’s mum, Christine, was also diagnosed with cancer in January 2019, which had spread to her brain. She also needed brain surgery – just two and a half years after Harriet had first been operated on.
Harriet said: “Everyone just wants their mum when they are going through a tough time. There’s a type of comfort and support that you can only get from your mum. But, my mum was also going through it all herself too.
“It is very difficult to have this common ground with her. On the one hand, it helped with all of the terminology and knowing what the surgery would be like. But on the other, there’s no blueprint to how someone’s body reacts to a tumour and the subsequent treatment either so we didn’t know all of what to expect.”
Christine’s treatment is currently paused after she responded to the immunotherapy which she has been having over the last two years since her diagnosis. She has regular scans to monitor her condition.
The family have continued holding virtual fundraising events throughout the pandemic which has raised a further £16,000 for The Brain Tumour Charity. Harriet has also had further treatment including two operations to have her lungs drained and surgery to have a stent fitted in her liver.
Bea said: “We wanted to make our fundraising events an enjoyable experience for people who have been supporting us and have helped us to raise such an amazing amount of money. But, it is also important for us to raise awareness of the signs and symptoms of brain tumours amongst those who have been there for us too and their friends and family.”
Harried added: “Sadly, a number of close family and friends have since also received diagnoses and it’s a very small silver lining being able to offer them support, understanding and knowledge about the process and different parts of cancer treatment.” Further details of the family’s fundraising plans will be announced soon. To find out more, or make a donation to Harriet’s Fund, visit here.