Chelsea Spencer, 29, originally from Liverpool but living in Portslade, started a new job as an Employment Coach Trainee for the Education Development Trust in May. She had to take a career break from her job as a Work Experience Coordinator at London Skills for Growth in 2018 when she was diagnosed with a brain tumour.
Her treatment actually ended at the end of 2019 and Chelsea recovered well but the Covid pandemic meant that she had to shield so her return to work was delayed. Since her diagnosis, she also moved out of London to her first home with her partner, Simon, so she found a new role closer to her new home.
Her new employer is fully aware of Chelsea’s diagnosis and her need to have regular MRI scans to monitor her condition and they have been supportive and accommodating of her requirements.
Chelsea said: “Because of my diagnosis, I had to be so careful during the pandemic. It felt like last year was just an extension of my treatment as I couldn’t get back to doing what I enjoyed for even longer. But, now I am ready, I am really proud of myself for what I have been through and I can’t wait to get started.”
It was in March 2018 that Chelsea first began to feel incredibly tired at the end of every day at work. She also started waking up in the middle of the night to find herself sitting bolt upright. She also got intense feelings of pins and needles in her head which would last for around a minute before she was able to go back to sleep. This was happening every few weeks and, unbeknown to Chelsea at the time, they were an early warning sign of the brain tumour.
Chelsea said: “I would come home from work at 5pm and flop straight onto my bed and stay there for the entire night. I knew that I wasn’t feeling right but I thought that maybe I just wasn’t coping with my new workload. I told my manager that it was all a bit too much for me but I couldn’t explain why.”
Chelsea visited her GP and she was signed off work for a week due to stress. She went back to her family home in Staffordshire to stay with her mum and step-dad Colin. But her mum encouraged her to return to the GP for a second opinion. Her mum had also noticed changes in Chelsea’s behaviour including reduced tolerance and a short, snappy and aggressive nature which was out of character for her daughter. So, Chelsea went back to the doctor and she had blood tests and an ECG carried out but they all came back clear.
It was around a fortnight later when Chelsea was staying with her boyfriend Simon that she had her first seizure. An ambulance was called and Chelsea was taken to the Princess Royal Hospital in Hayward’s Heath. Yet, she was not offered a CT or MRI scan.
Just two weeks later, Chelsea had another seizure when she was with Simon. This time, she fell and hit her head so the hospital carried out a CT and MRI scan which revealed the mass on her brain. She was kept in overnight and then told to come back the following day for an appointment with the neurology team at Hurstwood Park.
Chelsea decided to have surgery and she was signed off work immediately due to concerns over having a seizure whilst on the tube. She moved in with Simon and his mum and she was also given anti-seizure medication and steroids to help with swelling. Chelsea had surgery two months later in June and the 12-hour operation successfully removed around 70% of the tumour. She recovered well from the operation but she spent a week in hospital to recover and to assess any impact on her memory and coordination skills, which were minimal.
Chelsea said: “As the operation had been successful, we were celebrating afterwards – and why wouldn’t we when it seemed like the worst was behind us? I wasn’t worried about attending the follow-up appointment but, as soon as I walked into the consultation room, I knew something wasn’t quite right.”
Chelsea, her mum and step-dad found out that the tumour was cancerous as it was a higher grade than the neurology team had first thought. It was confirmed to be a Grade 3 Anaplastic Astrocytoma. They had removed more of the tumour than they had first thought they would be able to but she was told that she would need further treatment including radiotherapy and chemotherapy. Chelsea was booked in for another appointment in a couple of days to discuss her options.
She said: “This news was so out of the blue – I was scared and upset but I struggled to process it. But I also wanted to keep it together to help my mum. We’re so close – like two peas in a pod – so I didn’t want her to be hurt. I knew that my mum would rather be the one to have it than me.
“I was trying to be strong then a nurse said to me: “Chelsea, you have to understand that this will shorten your life.” My step-dad is very stoic and he told me that it would be tough but that we could get through this, which really helped.
“I totally understand that the medical team didn’t intentionally mislead me but I was under the wrong impression about just how serious the tumour was until that follow-up appointment. This is why more research into brain tumours is so desperately needed – so that we all have more understanding of what they mean and what impact they can have on people.”
Chelsea had radiotherapy and 12 courses of chemotherapy at Preston Park Hospital in Brighton, which finished in September 2019. Chelsea credits her surgeon, oncologist Dr Creak and Macmillan nurse Gill Walsh for their fantastic work which made the experience easier for them all to go through.
As her treatment got underway, she and Simon had just moved into their first home together and Chelsea’s mum temporarily moved in with them too so that she could care for her daughter, help manage any side-effects of the treatment and attend the appointments with her when Simon was at work.
During that time, Chelsea attended exercise classes with a Brighton-based charity, ‘Brighter Outlook’ which supports people living with or after cancer. She credits these classes, along with a healthy meal plan which Simon provided for her, with getting through the grueling treatment.
Chelsea said: “I convinced myself that I would be OK and that through the treatment I was attacking the tumour. It was tough but I was determined. I told myself that I could do this so often that I just started to think of it as a fact. There were bad days – the perpetual “what ifs” were difficult to shake off. But I tried to remember that people live with different medical conditions all of the time – including brain tumours – so I could be like that.
“I vividly remember when I began to lose my hair. I was brushing it and a clump just came out. I looked down and there was lots of it on the floor, it looked like there was a hamster there. Then handfuls just kept coming out.
“It was a big deal to me – my hair was one of my favourite part of me and such a strong part of my visual identity. But I am lucky that, because it was very long and thick, that I didn’t lose all of it so it’s just shorter and thinner now.”
Chelsea’s emotional rollercoaster was far from over. She had a scan six weeks after her treatment was over and, at an appointment to discuss the results of the scan, she was told that they thought that the tumour could have grown. Her scans were to be shown to another neurosurgeon for a second opinion.
She said: “I thought that, after all that I had been through, I would have to do it all again. I felt exhausted but I knew that I didn’t have a choice. This was the first time that I really thought that I was going to die. As further treatment was discussed, I asked the medical team if they thought that I would make it to my 30th birthday in a couple of years’ time. They said that they were optimistic about the treatment but that everyone responds differently.”
However, a week later, Chelsea was told to return to the hospital in Hayward’s Heath that day for an urgent appointment. It was then that she was told that what they had thought was the tumour growth was actually scar tissue and therefore no cause for concern as the treatment had, in fact, been successful.
Cheslea and her mum have a close relationship which they both valued following her diagnosis.
Chelsea’s family have done some amazing fundraising for The Brain Tumour Charity following her diagnosis.
Chelsea said losing some of her long hair was a difficult part of her experience.
Chelsea credits her friends and family for providing her support network since her diagnosis, including her sister Rebecca who found out about The Brain Tumour Charity online. This opened the family’s eyes to the issue of underfunding around brain tumours – of the £500m spent on cancer research every year only 2% of that is on brain tumours.
The family have been fundraising for the organisation over the last couple of years including her sister Rebecca and brother William completing The Three Peaks Challenge which raised around £3,000 for the Charity. This is in addition to further fundraising including William shaving his head, Colin doing motorcross trial fundraisers and Simon’s friends Ryan and Sam completing the Rat Race challenge in Scotland which raised £1,619.
Chelsea said: “My brain tumour is just part of all of our lives now so we’re all so very passionate about The Brain Tumour Charity now. The statistics about brain tumours and the research into them are shocking so this is our way of helping other people like me who are affected by the disease.”
Chelsea now has scans every four months to monitor her condition which is currently stable. She also takes anti-seizure medication. She will also celebrate her 30th birthday on 19 September 2021 – a date which she was previously unsure she would reach.
Chelsea said: “I think if it hadn’t been for my diagnosis then I may have been freaking out about turning 30. But, because I am here, I am happy about it and I can celebrate it. I am a lot more excited about it than a lot of my friends are. I asked the doctor if I would still be here and here I am.
“There are still days when I am worried or I am scared about what may happen – but I know that I don’t have to be happy and positive all of the time, either. It is OK to not be OK – it just means that I am human and I can feel positive or I can be frightened or worried instead.
“I do wonder what my path will be – I am in a healthy place in my own body now and I am looking forward to getting back to being ‘me’. Cancer will always be part of my life but I am proud of how far I have come. I have learnt a lot about myself – I am more capable and resilient than I gave myself credit for. I, of course, wish that this had never happened but it has shown me my own strength.
“I have just two hopes – I hope that there will be a cure for brain tumours in my lifetime and I hope that my condition continues to remain stable. That’s all I wish for.”
Help to find a cure.
You can help us to defeat brain tumours and find a cure for the killer disease.