In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
When Elaine Lee-Tubby, 47, was diagnosed with a brain tumour, she was taken back to the dark days of losing her dad to the disease just three years before. Now, 20 months on from her own diagnosis, she is determined to prove that living with a low-grade meningioma doesn’t stop her from leading a happy life. Having married her childhood sweetheart Shawn last August, she’s looking forward to a relaxed Christmas with her husband and their four daughters, Emma, 31, Carla, 26, Symone, 22, and Leah, 13, and will soon take on a festive fundraising frenzy for the Brain Tumour Research charity.
“Shawn was my tower of strength. After 33 years of being together and having spent two years planning our wedding, nothing was going to stop us getting married; not even a brain tumour. The day itself was beautiful and everything I could have dreamed of. It was such a positive occasion in light of a negative couple of years. I didn’t think about my tumour at all.”
Here is Elaine’s story…
Having suffered the painful loss of my dad to a metastatic brain tumour three years before, I can’t begin to express how gut-wrenching it was to be told that I was suffering from the same disease. At the time, I didn’t have the faintest idea about the different types of brain tumours and immediately assumed I would have the same bleak prognosis as him. Looking back, I’m extremely fortunate that my tumour has subsequently been diagnosed as low-grade. I’m able to live a happy life and, while it’s been a difficult year, marrying the love of my life Shawn was the greatest positive amidst the troubled times.
My diagnosis in March 2018 came completely out of the blue and, had it not been for a freak road accident, I wouldn’t have known that I was living with the disease. It all began when I was driving to work and was shunted at a junction. I was seen at the hospital for soft tissue damage and given physiotherapy. But a few weeks later, I suffered from an extremely intense pain in the back of my head, known as a ‘thunderclap headache’. It was like a sudden, intense brain freeze; the worst headache I’ve ever had.
I’d told my GP about my symptoms and she was concerned the car accident may have caused brain damage. Shawn rushed me to A&E at Torbay Hospital, where I had a CT scan, an MRI and a lumbar puncture, and we were both very anxious. I couldn’t have asked for better service from the medical staff who stayed late to care for me.
The following morning, I was stunned when I got the results. I was told that I had a brain tumour. Immediately, I was taken back to losing my dad. I heard the doctors talking but nothing was going in. I thought I was going to die.
My thoughts then turned to how I would tell my mum, sister and girls. Mum had not only endured the painful loss of her husband, but my sister Michelle was also going through treatment for breast cancer. I dreaded to think how I could break the news that I was also unwell.
My tumour was classified as a low-grade meningioma and it had probably been growing for a number of years. I summoned the strength to tell my relatives and they helped me through the initial shock. Michelle works as a community nurse, so she knew quite a lot about my diagnosis and reassured me that things would be okay.
I was taken to Derriford Hospital to meet a neurosurgeon and then given three treatment options: gamma knife radiotherapy; surgery or to ‘watch and wait’ with routine MRI scans. My tumour is located behind my right eye, meaning surgery is very risky, so I opted to ‘watch and wait’ and was told I would need to go back for an MRI in nine months.
Throughout those months, Shawn was understandably worried, but also my tower of strength. After 33 years of being together and having spent two years planning our wedding, nothing was going to stop us getting married that August; not even a brain tumour. The day itself was beautiful and everything I could have dreamed of. More than 200 guests came along and it was such a positive occasion in light of a negative couple of years. I didn’t think about my tumour at all. It reminded me of how grateful I was to Shawn as, for some partners, the situation would have been too much. The wedding gave us the fresh start we needed.
I’m grateful that I’ve been well enough to continue my work at Wiltshire Farm Foods throughout the year, and I even took up another position as a brand ambassador for a local hospice, connected with Derriford Hospital. I also found a great comfort in an online support group for brain tumour patients and made a fantastic friend through the site, who has the same tumour type as me and two daughters, so we share a lot of similarities. We also attended a lab tour at the Brain Tumour Research charity’s Centre of Excellence at the University of Plymouth, where research is taking place into low-grade brain tumours like mine – it was really insightful.
I’ve recently had my nine-month scan which showed no growth of my tumour and, thankfully, now I don’t need to have another scan for 12 months. As Christmas approaches, I’m reflecting on this past year and feeling fortunate that my tumour is low-grade. Since my diagnosis, I have met two other brain tumour patients; one of which has a very aggressive tumour and a devastating prognosis. I’ve realised how lucky I was that a freak car accident led to my diagnosis – I dread to think what could have happened if it had been left undetected – and I’m looking forward to an extra special Christmas with Shawn and our girls this year. As my three eldest daughters have moved out, it’s one of the few times we all get together as a family and we are relieved to have regained a sense of normality after a chaotic year.
This Christmas I will also be fundraising for Brain Tumour Research. I’ve challenged myself, with the help of family and friends to raise the £2,740 it costs to fund a day of research, so I can place a tile on a Wall of Hope. We’ll be holding a stall with my mum and her friends at the Buckfastleigh Christmas Fayre and we’ve already generously received lots of handmade gifts to sell from friends and relatives. Wiltshire Farm Foods have also donated £500 to kick-start my fundraising and Emma has signed up to run a half marathon with her colleagues at JMC recruitment. My aim is to help raise awareness of brain tumours in my local community and to encourage everyone to donate to the charity at this reflective time of year.
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.
If you have been inspired by Elaine’s story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.