In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Fifty-year-old Madi Ruby, from Oswestry in Shropshire, has lived with a brain tumour for more than half of her life after being diagnosed with a grade 1 meningioma when she was 23 years-old. Surgeons successfully removed the 6cm tumour. Madi and her husband, Neil, went on to raise their now 16-year-old son, after Madi enjoyed a career in television airtime sales and IT. When her headaches returned in 2013, a CT scan revealed the tumour had re-grown and she had surgery for the second time, during which surgeons removed one of multiple tumours on her brain. Madi is now keen to share her story to show others how it’s possible to live with a life-limiting disease.
Madi tells her story…
There’s something about entering my fifties and living with an incurable disease, that has spurred me on when it comes to my life choices and doing things that truly make me happy.
As well as having a curious mind and an interest in medical research, I certainly think that my diagnosis has made me resilient and given me the attitude to carve my own path in life when it comes to having a family and a career.
I grew up in North Wales and moved to the south of England for university, working there briefly in TV airtime sales before moving into IT strategic alliances for 15 years.
My brain tumour journey began in summer 1995, when I was 23. I remember having this odd sensation and numbness in my right hand and arm. I’ve always thought that people tend to ‘explain their problems’ away and that’s what I did, thinking that maybe I was leaning on that side of my body in a funny way.
Things soon escalated. I remember taking a message for someone over the phone and my writing came out backwards, which I found bizarre. I had increasingly bad headaches and spells of vomiting where I’d need to lay down until it passed. I was still driving but after numbness in my foot caused me to not be able to feel the brake pedal, I had a minor car accident, and decided to get checked out.
“My GP referred me for a CT scan at St Peter’s Hospital in Chertsey and said it was unlikely to be anything serious, because I was young. Deep down I knew it was something concerning, and as soon as I got back to my car, I cried.”
I remember feeling incredibly nauseated during the scan. Nausea was one of my main symptoms at the time.
Days later, I had a call from the GP with my results and was told I had a 6cm tumour, likely to be a low-grade meningioma and I was being booked in for an operation.
Within a couple of weeks, I walked into an appointment with my consultant before the operation, saw a scan image on the wall and thought to myself: ‘that looks bad, whoever that belongs to’. Then I realised it was my scan.
“The surgeons commented on the fact that I walked in, which they didn’t expect from someone with a tumour that big.”
The surgery was a success and the whole tumour was removed. My medical team at the time was convinced it wouldn’t grow back. I had annual scans for the next five years and was discharged after the scans were all clear.
After my first surgery, I developed partial epilepsy on my right-hand side and had occasional grand mal seizures. Although having a seizure for the first time was terrifying, being alone and feeling this pulling and twitching sensation in my abdomen, was also fascinating.
In 2006 I had my son, Luca, and when he was four months old, I had 14 partial seizures in one afternoon, which was put down to being a sleep-deprived new mother. It was no longer safe for me to drive so I lost my driving licence, which led me into a depression.
It was hard to deal with the lack of independence. My driving licence had to be re-approved every three years and I went through periods of having a licence and periods of not having it.
My plan was to go back to work when Luca was one but with everything that had happened, I wanted to make every moment count and for Luca to know he was safe and that despite my illness, I was there.
The same year Luca was born, we moved to Shropshire to be closer to my family and my mum was a huge support for me emotionally and practically when it came to childcare. I was fortunate to be able to take five years away from work to focus on being a mum and felt grateful that I could do so.
I received counselling for my depression and realised that having come from a career which involved being in control, everything was now totally out of my hands, notably my brain tumour.
I came to realise that I craved doing something for myself that engaged a different part of my brain to anything I had ever done before.
With the support of my husband, Neil, I enrolled on a 10-week counselling course, which I loved. I wanted to be able to help others come to terms with their diagnosis the way my counsellor helped me.
In 2011 I graduated with a masters in clinical counselling from the University of Chester, a qualification I achieved whilst working part-time in retail, to help support myself and my family financially.
Fast forward to 2013 and I started to get headaches again. I’d been in a new role as programme leader/senior lecturer in counselling and psychotherapy at Wrexham Glyndŵr University for a year and found myself ‘explaining my headaches away’, assuming they were the result of having a young family, being tired and working on my career.
That’s when I was asked a very important question by my GP. He said: ‘have you ever had headaches like this before?’ and I thought back to my twenties.
I was sent for a CT scan at Robert Jones and Agnes Hunt Hospital in Oswestry and afterwards, I received a call asking me to come in for the results. They told me they had found multiple tumours, including a 4cm meningioma. I never thought I would be told I had another tumour, let alone, multiple tumours.
Surgeons at the Walton Centre in Liverpool removed the 4cm tumour which unfortunately turned out to have progressed to a grade 2. For now, the smaller growths are being monitored with regular scans. My next one is later this month. I was considered for a targeted form of radiotherapy called stereotactic radiosurgery but due to the location of the tumours, it wasn’t suitable for me and I may need further surgery in the future.
My diagnosis has meant I’ve had to be agile and adjust to things, such as losing and re-gaining my driving licence due to being at high risk of seizures, which left me feeling low and wanting to do something meaningful as a career and within my life.
In 2016 I completed a post-graduate certificate in education (PGCE) at Staffordshire University so I could help even more people by teaching future counsellors.
Since my treatment, I often feel the need to complete certain tasks quickly, as I fear I will run out of time, be that because I’ll need surgery again or, worse, something more final. I also am always keen to develop and learn, so I decided to undertake a PhD at Lancaster University, in which I focused on understanding better ways of managing and leading people so they can experience dignity and wellbeing at work. Towards the end of my studies, I had to have a three-month break because I had chronic migraines and couldn’t read anything, which is another side effect of my brain tumour.
I’ve not let it stop me and after coming back from my second brain surgery I was promoted after a few years. Now I’m an associate dean, responsible for nursing and allied health professions at Glyndŵr University, where I have been involved in the successful bid for a contract to educate future nurses and health professionals like speech and language therapists, physiotherapists and occupational therapists worth £98m. These healthcare workers of the future will support patients who have suffered from a wide variety of illnesses, which could include brain tumours. I really feel that this is part of the meaning I’ve made from having brain tumours, by making a contribution and giving something back.
I want to show people that I’m very much living with my brain tumours. I acknowledge they are part of me and feel that in a way it has given me the privilege of understanding what matters and helped me prioritise.
My hope is that by sharing my story and getting involved in fundraising through the 10,000 Steps a Day in February challenge and campaigning, that I can make my diagnosis mean something and empower other people.
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 Madi’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