In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
In August 2019, mum-of-two Michelle Noakes, from Bow in East London, had her ultimate dream wedding to her beloved husband, Simon. They were surrounded by their friends and family, with their young children Otto and Poppy there to take part in their special day. Only a few months later, however, their world would come crashing down when Michelle was diagnosed with an aggressive and inoperable brain tumour. Determined to defy her stark prognosis, Michelle underwent standard of care NHS treatment, as well as private therapies, but sadly her condition worsened and eventually, her options ran out. She died at home in June 2021, aged 39, leaving her loved ones devastated. Her family feel strongly that there needs to be more funding for research to find better treatments so that other young children do not lose their mum in this way.
Michelle’s sister Samantha Williams tells her story…
Michelle and I were very close as sisters. She was more than a sister; she was my best friend and the first person I’d go to for advice. We come from a close-knit family and had a happy childhood; growing up near Honiton, Devon, with our younger brother Simon and our parents David and Julia. When she left home, Michelle moved to London, where she carved a very successful career in public relations. I also spent seven years living in London and Michelle and I would see a lot of each other, socialising often. Even when I moved back to the South West of England, to Taunton in Somerset, we continued to visit one another regularly and retained our close relationship.
In March 2015 Michelle started a family with her partner, Simon, giving birth to a little boy, Otto. Three years later Michelle was pregnant again and in August 2017 they welcomed a daughter, Poppy. In August 2019, Michelle and Simon cemented their family when they got married. Their wedding day was such a happy occasion, full of love.
“We feel grateful that we didn’t know about Michelle’s brain tumour on her wedding day.”
On the morning of her wedding, Michelle mentioned having a tingly feeling in her face a bit like pins and needles. I remember Mum encouraging her not to worry about it and she advised her to see a GP once the wedding was over. A few days later, she went to the doctor and had some blood tests, which didn’t reveal anything of concern. But her symptoms were getting worse. As well as the tingling sensation in her face, her hands were tingly and she was experiencing dizziness. She went back to the GP a few times and eventually she said to the doctor that she was really worried, so, in November, they finally sent her for an MRI scan.
Immediately after her scan, she was told to go to the nearest A&E which was at The Royal London Hospital. Simon went with her and they let the rest of the family know what was happening, so we were all on tenterhooks, waiting for news. When they got there, they spoke to a trauma surgeon, who told them they’d found a brain tumour and that, due to its location in the brain stem, it was too deep within the brain to operate. The only treatment available to her would be radiotherapy and chemotherapy.
Michelle was very health-conscious, so to learn that she had cancer felt so unjust, but we soon realised just how indiscriminate brains tumours are. It just seemed so unfair.
A week after receiving this devastating news, Michelle and Simon went to see clinical oncologist Dr Nick Plowman at St Bartholomew's Hospital (Barts) in the City of London. Dr Plowman confirmed to them that she had a brain stem glioma. Although surgery was considered too difficult to undertake because of the high risk of complications, he made us feel a little more positive, explaining that it wasn’t the end of the road, rather the beginning of a journey. He said it wouldn’t lead to other tumours in the brain because it was a primary brain tumour, but that it could grow bigger.
Michelle had 30 sessions of radiotherapy over the course of six weeks, which included the Christmas period. She coped well and was determined not to let it ruin the kids Christmas, but it made her feel progressively worse and seemed to make her pins and needles and dizziness worse. Despite that, she was incredibly positive and strong throughout the whole thing. She had always been very conscious of the environment, and even in her greatest time of need she would travel to appointments on the bus or via a pedal power taxi. Simon accompanied her to every appointment and sometimes other family members did too. Everyone pitched in. She lost some of her hair but it did grow back.
“When we got the results from the post-radiotherapy MRI scan, we were gutted. They showed that the tumour had grown.”
Eight weeks after radiotherapy, Michelle went back for an MRI scan where we learnt that the radiotherapy had not been as effective as we’d hoped. It was devastating but there were still other treatment options available. In March 2020, she began a course of temozolomide (TMZ) chemotherapy, which thankfully didn’t make her feel as terrible as the radiotherapy did. That said, it made her extremely tired. Before her diagnosis, Michelle was such an energetic person, fun-natured and excitable. It was so hard to see her lose that energy and enthusiasm, which usually defined her character.
Meanwhile, the COVID-19 pandemic, which was affecting the lives of everyone throughout the UK and beyond, meant that we couldn’t see as much of each other as we would’ve liked. Michelle, Simon and the children moved down to Devon to be in a ‘bubble’ with Mum and Dad, which was a nice place for them to be during lockdown, but it was such a shame that our brother Simon and I were restricted in terms of visiting her, until the rules eventually eased and allowed for outdoor get-togethers.
Michelle had two rounds of the TMZ chemotherapy and continued to have three-monthly scans, but the scans showed that TMZ didn’t seem to work to shrink the tumour, as we’d desperately hoped it would. She only had one stable scan in the summer of 2020 but that was the only bit of good news we had throughout her brain tumour journey.
Towards the end of 2020 her consultant decided to try her with another type of oral chemotherapy, this time Lomustine.
In early 2021, she was still able to go for short walks but she was very unsteady on her feet and her eyesight was getting progressively worse too. One of her eyes had started to turn in and she was suffering from double vision as well as the dizziness. Added to that, she was extremely tired all the time. She lay in bed a lot with her eyes shut. It was no way to live. The children adapted amazingly well, though. They got used to Mum doing less and Dad doing more.
She had two rounds of Lomustine and then the doctors decided to stop chemotherapy in March 2021 after scans showed this ‘last resort’ treatment was not helping either.
“Essentially, the NHS had run out of options.”
Knowing how limited the NHS treatments were, we had been searching for clinical trials or privately funded treatments from the minute Michelle was diagnosed. Family and friends had searched tirelessly for a magic cure. I was working as a charity communications manager but the researching became like a second job for me. This is the desperate situation that many families affected by brain tumours find themselves in.
Everything we suggested to Michelle’s doctors had been advised against, but once the NHS treatments available had been exhausted, we took matters into our own hands.
“You have to become your own doctor when the tools that the NHS has to work with are so limited. We now wish we had done it sooner.”
We paid privately for a blood biopsy from Datar Cancer Genetics to find out whether Michelle had the right genetic mutation to have a drug called ONC201. Unfortunately the results showed this was not the case. But in the meantime, we had already been looking into another possible option in the form of a pioneering treatment from Germany, available privately, involving a type of immunotherapy known as dendritic cell vaccine.
This was one glimmer of hope on the horizon.
We knew that it was early days in terms of the clinical research investigating this treatment, but it still seemed a better, more innovative option than what she’d tried so far. We believed it may have offered Michelle her last hope of seeing Poppy turn four and making it to her first day at school.
The German vaccines didn’t come cheap, so we set up a JustGiving page, asking everyone we knew to consider donating to help pay for the treatment. We were overwhelmed by people’s generosity and support. They donated in their droves and shared Michelle’s story to help raise awareness, which meant that we raised the tens of thousands that we needed. The fact that so many people wanted to help gave Michelle a real boost. She felt very loved and that was exactly what she needed when everything else seemed so bleak. The money enabled her to have one round of the treatment but even in the short time between raising the funds and starting the treatment in April 2021, her condition had continued to decline.
Michelle’s husband Simon took time off from his busy finance job to care for Michelle at home, with the support of the local hospice. He was absolutely amazing with her and held it together so well. By this time they were back in London as the lockdown had ended and the children were back in school. Simon’s brother Tim moved back from Thailand temporarily to help Simon with the children, and Mum visited a lot to help care for Michelle, especially towards the end, when we knew she didn’t have long left. It was awful seeing how we lost a bit of her every day.
In June 2021, my brother and I took some time off work and went to be with Michelle and the family in London. Mum and Dad were there too. She was aware that she was dying. I asked her if she wanted to talk about anything and she spoke about how unfair the situation was. She said she dreamt about cuddling her children but she physically couldn’t.
I told her to try not to be afraid of dying. She said she wasn’t, but she didn’t want to go. She fought for every last breath but eventually, there was no fight left in her and she slipped away peacefully on 26 June 2021. Mum and her husband Simon were in the room with her when she died. My brother Simon had said his goodbyes the day before. My dad and I were in the flat around the corner, where we were staying, when we got the call to say it was near the end and we rushed over. We arrived just as she’d gone.
“Even in her final days, when the disease had taken away her ability to speak, eat and drink, she was really fighting.”
She’d already bought a dress and organised afternoon tea in Victoria park for her milestone birthday but sadly died before that date. Victoria Park was a special place because it’s where she had spent so much family time with her kids so we decided to go ahead with the afternoon tea she’d arranged. Her funeral ended up being the next day – the day after her 40th birthday.
“It's almost a year since we lost Michelle and it still feels really raw and so hard to come to terms with. She was desperate to reach her 40th birthday but that didn’t happen.”
For her funeral she was dressed in the beautiful long green dress she’d chosen for her birthday; green was her favourite colour.
The children were three and six when Michelle died. She hadn’t made it to Poppy’s fourth birthday or to see her start school. I think the reality that their mum is never going to come back really kicked in later on. It’s a delayed reaction. Thankfully, Simon has been amazing and so have their friends and school. The school has provided counselling for the kids and the teachers continue to keep an eye on them.
She had always wanted to be a mum and she was the happiest she had ever been in the years she was with Simon and the children. Even in her final weeks and days she was a good mum, always asking what the children were having for their dinner, telling me which books Poppy liked, and listening as we read out their school reports to her. She loved them unconditionally and that love will stay with them forever.
Simon is doing well with fantastic support from friends, family and the local community in Bow. He has become even closer to the children, as he’s had to take on the role of mum and dad. He’s managing brilliantly with the practical side of single parenting but it’s hard in the evenings, once the children have gone to bed and he’s left in a quiet house surrounded by all the memories.
Michelle was the loveliest, kindest person; thoughtful, fun-natured and loved by everyone who knew her. She became passionate about raising awareness of brain tumours after her own diagnosis, so I feel privileged to be able to help do that in her memory and for others facing this awful disease.
As a family we feel it’s absolutely essential that there is more funding for research into treatments for brain tumours, so that ultimately the NHS can do more to help people who face this stark diagnosis, and families do not find themselves having to desperately search for private or alternative treatments.
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.