Rachel Massey, a 50-year-old Primary School teacher from Ludlow in Shropshire, was diagnosed with an anaplastic astrocytoma after suffering a tonic-clonic seizure in her sleep in September 2018.
Rachel was given just three to five years to live. She underwent surgery at the Queen Elizabeth Hospital in Birmingham where it was found the tumour could not be fully removed due to its growth across the right and left frontal lobes.
Rachel tells her story…
In September 2018, I was feeling tired but I didn’t think anything about it because my husband Andrew and I are both teachers, and it was the beginning of the school year, so it was a busy time. I hadn't felt any symptoms prior and looking back there is still nothing that flags up to me as a concern.
It was a normal day, Andrew and I had a normal evening, and I retired to bed. Then during my sleep I had a seizure. It came as a complete shock. Andrew quickly called an ambulance; the paramedics initially thought I'd had a stroke.
Next thing, I woke not able to speak with paramedics looming over me. I knew something was seriously wrong.
My dad suffered from epilepsy, so my only thought was if I had epilepsy how would I be able to continue my job. I never once thought it was anything more than that. I was rushed to A&E at Hereford General Hospital. After a CT scan ruled out a stroke or bleed, I was told to rest and come back in a few weeks for an MRI, so I took a couple of days off work.
Due to the electrical activity from the seizure masking the parameters on my brain I couldn't have an MRI immediately, so I returned to work, but felt awful.
I went back to work and a colleague whose son has epilepsy said that a seizure is the equivalent to running a marathon. I felt slightly relieved, knowing that was possibly why I felt so tired. With the support of my boss, I went back to work part-time.
I went back to see a specialist at Queen Elizabeth Hospital in Birmingham. They warned us it could be a tumour and referred me to a neurosurgeon. I was devastated, what I thought was epilepsy could be something much worse. I was filled with questions: Would I ever teach again? Walk? Talk? The uncertainty was overwhelming, so I kept busy, arming myself with information and reading as much as I could.
Six weeks later I had another MRI which lasted over an hour. They were finally able to get a true diagnosis, which is when I received the devastating news.
It was a tumour, and I was given three to five years to live. At that moment everything changed, all our plans to retire and travel disappeared.
My surgeon said the tumour was operable, this gave us hope and that is what we held on to. In December 2018, I had my surgery at the Queen Elizabeth Hospital where it was found the tumour could not be fully removed due to its growth across the right and left frontal lobes.
Over the next few months, l underwent a gruelling 33 sessions of radiotherapy and a year of oral chemotherapy. Sadly, due to the tumour’s impact on my cognitive abilities, I’ve had to give up my beloved profession as a primary school teacher. And despite the initial life expectancy, I am living well with cancer six years later, thanks to the dedicated care from the neurological and oncology teams.
I found a source of comfort and strength through the Ludlow Cancer Support Group (LCSG), a friendly environment that quickly became a lifeline during my cancer journey. Rather than a place of sorrow, LCSG offered me companionship and solace.
I’ve chosen to embrace early retirement and now dedicate my time to volunteering and raising vital funds for charity.
Though cancer changed the course of my life, it didn't take away my purpose.
I know that one day my tumour will progress, so I make sure I live for the now and enjoy every day. I've embraced this new chapter with gratitude, finding fulfilment in volunteering and knowing that every day is a gift. I remain active in my community and am an active member of the LCSG. We are constantly fundraising to raise awareness of the life changing impact of cancer and recently raised £2740 for Wear A Hat Day. It’s not nearly enough, but it will fund one day of research.
I am passionate about spreading awareness of brain tumours and the importance of brain tumour research. I hope that by sharing my story, I can give hope to those who have just been diagnosed, showing them that they are not alone in their journey.
Brain tumours can be incredibly isolating, but through research, awareness, and support, there is always a chance for progress. I also hope my story inspires others to donate to Brain Tumour Research, as funding is crucial to finding better treatments and ultimately a cure. Every contribution, no matter how small, makes a difference.
Rachel Massey
April 2025
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Rachel’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.