The words brain tumour were first mentioned to me at the age of 26. Sudden hearing loss in my right ear prompted a referral to ENT. After a hearing test the ENT consultant said the words, “I’m afraid I have bad news, you have complete hearing loss in the right ear, the hearing nerve is completely damaged, I think you may have a benign brain tumour called an Acoustic Neuroma”. Not at all what I expected and quite a shock!
I had an MRI a week later and to my relief came back as normal, the hearing loss blamed on a virus.
7 years later, shortly after my youngest was born I started to have some new symptoms. I had a few episodes of vertigo where the room would suddenly start spinning and I would have to sit still until it passed. This was scary, especially one day when it happened on the stairs, luckily I wasn’t carrying Scott, my newborn baby.
Other symptoms also started, blurred vision, balance/co-ordination issues, weakness in my limbs, fatigue, difficulty concentrating. A visit to my GP prompted a referral to a neurologist.
An MRI shortly after seeing the neurologist confirmed a 13mm Acoustic Neuroma brain tumour. This suddenly explained the hearing loss nearly 8 years prior. It also explained other things, like when I lost my balance and fell head first down a flight of stairs around the same time as the hearing loss, thankfully only ending up with a broken wrist!
It was decided by my consultant team that I should be placed on “Wait & Watch” as the tumour was small and may not grow anymore rather than risk surgery. So a scan was planned for 6 months time.
It was difficult getting on with life as normal knowing it was there in my head but I did my best. Nausea due to the balance issues became a near constant companion. During this time whilst training for a marathon, my balance issues contributed to a fall and I broke my tibia and fibula in 3 places near my ankle on 31st Dec 2009, I had surgery a few days later to patch me up with a metal plate and a few screws and bolts.
In April 2010, my 6 month MRI showed more tumour growth, so with my increasing symptoms, the fact that my hearing and balance nerves were already dead and at my relatively young age of 34, it was decided I should go for surgery.
I had my 11.5 hour surgery on the 20th September 2010 at the Royal Victoria Hospital in Belfast. I was lucky to initially make a good recovery, as my balance and hearing nerves were already destroyed by the tumour.
I had no issues with walking etc soon after surgery. My facial nerve had been slightly affected and I ended up with an ulcer on my cornea due to my eye not closing properly at night. Thankfully the ulcer healed up and eye sight came back to normal. I taped my eye closed at night for a month or so and had to use plenty of eye drops and ointments to deal with the severe dryness, an after effect of the surgery.
Recovery from surgery was a long slow process, the neuro-fatigue meant returning to my normal work hours was difficult. It took 18 months to get back to normal work hours. My GP recommended getting out on plenty of walks and this helped immensely. I decided to start training again for that marathon and finally completed the Dublin Marathon in Oct 2014.
An MRI after surgery revealed a very small remnant. This was monitored closely and remained stable for 10 years. I had learned to manage my symptoms which were mainly balance problems, fatigue, nausea and trigeminal neuralgia. I increased my hours at work and began to study for my accountancy exams. Life was good. Then out of the blue on the 4th January 2021 I got a phone call to say that my latest scan showed that the tumour was growing again. I was devastated. It was decided that whilst it was still small I would have a dose of radiation by a Gamma Knife Machine (Stereotactic RadioSurgery).
I had the Gamma Knife treatment in St James’s in Leeds on the 29th June 2021. The procedure was painless, apart from the fitting of the frame to the head.
Unfortunately I found recovery nearly as difficult as after surgery, the fatigue was crippling. My neurosurgeon believes it was due to me having had the prior surgery as usually it’s an easier recovery.
Returning to work was made difficult with fatigue, concentration and cognitive difficulties. My MRI 18 months after treatment showed that the tumour had more than doubled in size and that I needed another scan 6 months later to determine the next course of action. That was a very stressful time, I just thought I’m never going to get my life back and the fear of needing surgery again was unbearable.
At this stage I was dealing with more headaches and new symptoms like hemi-facial spasms. It was such a relief when the 24 month scan showed no significant change and I wouldn’t need to be scanned for another 12 months.
After the stress and hopelessness of these past few years I felt I needed a new challenge to get my life back on track. I had heard about The Beyond Recovery Project and Team Toubkal and was delighted when I got a place on the team.
I felt this was my chance to turn my life around. I had felt lost and depressed after the sudden regrowth 10 years post surgery and then devastated when it looked like the radiation hadn’t worked. I had become unfit after the radiation and lost the motivation to do anything about it, not knowing if I’d ever be free to enjoy life fully again, without worrying if the next scan would indicate the need for surgery again.
Training for Toubkal is definitely one of the most difficult things I’ve ever done, but the support from The Beyond Recovery Project team has been phenomenal. Whether it’s just cheering each other on, sharing balance exercises or tips on dealing fatigue.
Living with a brain tumour can be a lonely place but being involved with The Beyond Recovery Project has been life-changing. Facing a challenge like Toubkal with others who have had brain tumours and have had similar difficulties is an amazing opportunity.
The physical and mental benefits are plenty. I now know that whatever my next scan in July reveals, I’ll be fit to cope, knowing I’ve conquered the highest mountain in North Africa in June and that I’ll have the support of The Beyond Recovery Team no matter what.
The Beyond Recovery Project is a not-for-profit community interest company which supports brain tumour survivors like Wendy.
It is funded entirely by donations and run by volunteers. Please support if you can, so that we can continue to provide this support to the brain tumour community.
The Beyond Recovery Project CIC 