I GOT THE phone call on June 2nd 2020. I remember it so well. I was sitting at my kitchen table, laptop open, trying to work with my little girl, who was only one year, attempting to stand at the table leg. I answered a private number and knew straight away that it was from the GP.
She said that they had found something called a meningioma and that, typically, you can have them for years and not know. She was going to refer me to a specialist and send me some details on email. When the email came through, it featured information from Cancer Research UK and that’s when the panic set in. I started Googling and realised that it was a brain tumour.
A few weeks’ earlier, I had been experiencing headaches and something just made me go to see my GP. I don’t know what it was. I just had a feeling that I needed to go.
To say that I went into overdrive mode is an understatement. I was sobbing crying, thinking, what is this? Is this it? Is it cancer? What am I going to do? The next two weeks were hell on earth waiting to see a consultant. I spent far too much time looking online, driving myself insane, wanting to know more about brain tumours, and self-diagnosing. This would continue over the coming months despite me trying not to. I’m the type of person that needs to know all of the details. I lost plenty of sleep sitting on medical journals at 4am, reading everything possible about meningiomas.
The first appointment with my consultant was really to chat about what they had seen on my scan and what the next steps were. At that point, he explained where the tumour was located – near the speech area of the brain – and that we would watch and wait, meaning I would have another scan in three months to see how it behaved.
I was absolutely terrified of the unknown. I really tried to convince myself that it might not grow, just stay exactly as it was, and that I would avoid surgery. We talked about all the really scary risks of surgery, from seizures to stroke and death. I was petrified.
Skip forward to August and I had another scan. I met my consultant again, and it looked like it had grown slightly. Surgery was back on the table as an option. Again, I really didn’t feel ready to do anything like that, so we agreed to another scan in November.
When that appointment came around, I remember so clearly walking into his office to see my scan on his computer screen, where you could clearly see that it had grown to double in size. I remember my consultant just saying, “It has to come out, Pamela”, and I broke down. Everything happened quite quickly from there and, by 23 November, I was walking into Beaumont Hospital on my own – due to Covid – to have brain surgery.
It’s an awful experience for everyone to have to go through. For me, going into such a major surgery. For my family, watching on the sidelines, powerless to help. I remember being worried that I would lose the power of my speech after the surgery, or that I would wake up not knowing who I was. The worst thing I kept imagining was that I wouldn’t remember my daughter’s name when I woke up.
As with everything we Irish do, we try to find the light in the dark. I’ll always remember one of the porters, as he was wheeling me down to the theatre, joking about my sobbing, which he likened to reactions to his Tinder profile from women. He really did make me laugh.
Thankfully, I had a successful surgery in that they could completely remove my tumour. After testing, I found out that it was a grade two tumour, meaning non-cancerous, but has a higher percentage recurrence rate. It means I now undergo a scan every year.
I’d like to say that once the surgery was done, that was it, that I felt great. However, there would be an extremely long recovery and the next month would see me suffer from seizures every two to three days. I really underestimated how long it would take to feel good again. I was desperate to “get back to normal” whatever that normal is. I was forced to slow down because my body simply couldn’t go at the pace that it had been going.
For the first year, I had to go back to bed at least 3–4 times a day, because my brain was trying to repair at the same time as governing everything else in my body, from my thinking and creative side to simply helping me to get to sleep. We hugely underestimate just how critically important the brain is.
Having a brain tumour gives you a different perspective on life. Before all of this, I had only recently given birth to Alix, was working full-time, completing a Masters at nighttime, and gigging in a wedding band. Overnight, that all stopped. It’s made me realise where I really want to spend my time and energy. Family is obviously first and next is pursuing my own original music.
Back in 2021, I decided to reach out to the music producer, Stuart Gray, who has worked with such artists as Aslan and Ryan Sheridan, to see what I could do with my music ideas. I honestly didn’t think that he would even consider my efforts as actual songs, but it has gone really well. I have worked on my craft, taught myself how to independently release music and now I’m about to launch my fifth single Still be There on 25 October. I will also be performing it at the Tunes for Tumours gig in aid of Brain Tumour Ireland at the Hendrick Hotel in Dublin’s Smithfield that night.
This experience has taught me that life is so precious. We say it all the time but, when you’re faced with such life-threatening news, it really does take on new meaning. If something feels off, go and get it checked. Don’t bury your head. Imagine what the outcome would have been for me if I had back in 2020.
Put your time into the things that you really love. Hug your loved ones ever tighter, and think are those arguments really worth it? And go for your dreams. What’s the worst that can happen?
Pamela Tully is from Kilnamanagh in Dublin. She was diagnosed in June 2020 with a meningioma brain tumour. A webinar “Who cares for me? Challenging the carer to care for themselves too” will take place as part of National Brain Tumour Awareness Week, hosted by Brain Tumour Ireland, on Tuesday, 22 October at 6pm. For more information on this and other events taking place, or to register, visit www.braintumourireland.com.
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