YOU NEVER THINK it’s going to be you. When I was diagnosed with a brain tumour in August 2021, I was only 20, fresh out of college and starting my career. It really was a ‘why me?’, ‘why now?’ moment.
I was devastated, not only for myself but for my family. I was never a big fan of change, so you can imagine the thoughts running around in my head when I got the news.
For a month before I got diagnosed, which was during the pandemic, I was experiencing extreme headaches and, some days, was physically getting sick with the pain in my head. I went to my GP a number of times but was told it was probably down to the stress of starting a new job. The doctor gave me some painkillers the first time around.
The second time, he gave me some stronger migraine medication and something for the nausea. After coming back a third time, he sent me off for a Covid test. Little did I know that, after a month of constant headaches, I would end up collapsing at work and would be rushed into A&E.
After a scan showed a mass on my brain, I was admitted to hospital. This was peak Covid so I couldn’t have anyone stay with me. I know I was 20, but to not have my mam right beside me was really hard.
When my mam left, she was told she “might” be allowed back in the next morning.
The following day, a neurosurgeon came in to tell me that the MRI showed a tumour the size of an orange. To get this news on your own was not ideal. Looking back now, I don’t even know how I felt. I just went into autopilot. All I could think about was getting mam into see me as quickly as possible. Once she got in, we just didn’t let go of one another.
I would have surgery two days later to remove as much of the tumour as they could without affecting the tissue around it. Further tests would show if the tumour was cancerous or benign. Unfortunately, they weren’t able to remove all of the tumour as they said some of it was in an area that could affect my physical abilities.
The day I was being discharged, my mam and I sat on the hospital bed and made a promise that no matter what lay ahead we were going to live life to the fullest
and stay positive. To this day, we have maintained this to the best of our ability.
Don’t get me wrong. We have all had our moments and there have been tears. I remember walking out of the hospital two days after the surgery, seeing my dad for the first time standing there with his arms open wide. I rushed home to my three younger siblings and boyfriend Jack.
We have always been a close family, but in those few hours after being home I knew, no matter what was thrown my way, I had them all by my side.
While recovering from surgery, I was asked to come in for a chat about my results and I arrived with my parents alongside. When the doctor came into the room, I realised this wasn’t going to be good news. I had been diagnosed with a glioblastoma stage 4 brain cancer. Hearing the word “cancer” was a shock but then to hear the word “incurable” was a whole other level. In that moment, I felt so many emotions, yet I was emotionless. I heard what was said, but I couldn’t process it.
I began 30 sessions of radiotherapy and six months of oral chemotherapy. Losing my hair concerned me but, thankfully in the end, I only lost hair around the area treated. The major side effects were tiredness and, sometimes, nausea. Unfortunately, my first scan after finishing treatment in June last year showed that it hadn’t worked.
At that moment of the doctor telling me the news, it hit me again, that feeling I got after being diagnosed. I was told I would be starting a new treatment, an immunotherapy called Avastin. I now get this intravenously every three weeks.
Since starting this, my last four scans have been stable, which I’m delighted about. This is the best you can ask for with a brain tumour, as you’re never going to fully get the “all-clear”. Now that this has been keeping it at bay so far, I haven’t really asked them if, or what, treatment is available to me if something new were to grow. My motto is “one day at a time” and that’s how I keep it.
Once you’re over 18, I feel that young adults can be forgotten in an adult hospital. It just feels frustrating when I know that there are so many young adults in the same if not similar, situations to me. A hospital or section for young adults to come and get their treatment together is something that I believe needs to happen in the future.
Since being diagnosed, I’m definitely more conscious about what I’m putting into my body. I became vegetarian over a year ago and have cracked down on my sugar intake. Juicing has also become a major thing in my daily life. I’m a person who doesn’t want to sit back and just let things be or rely on the doctors to do all the work. Alongside my treatment, I want to do what I can to prolong my life for as long as that may be.
I still love going out, socialising with my family and friends, because that’s living.
I’m so grateful to still be kicking, able to get up and out every day to walk, run, socialise and do some of the things I had planned. Without a doubt, the biggest achievement to date has been running the VHI Women’s Mini-Marathon with my ‘Brain Buster Girls’. We raised €36,545 for Brain Tumour Ireland. I was so lucky to have had an amazing group of women to run with me.
I don’t dwell on the future too much but, when I do, I get upset thinking of not seeing my younger siblings grow up and what they will make of their lives. I know I’m only 22, but I’ve always wanted to be a mother and have a family of my own. I’ve always wanted to marry the love of my life (I’m talking about you, Jack!).
I definitely have FOMO on my “soul sisters” lives – my gang of four cousins and sister Anna – and all their future crazy adventures together. Lastly, the thought of leaving behind my two rocks, my mam and dad, also breaks my heart. But, for now, I’m not going anywhere, so here’s to living my best life.
Katie Sweeney is 22 and from Clontarf in Dublin. International Brain Tumour Awareness Week takes place from 28 October to 4 November. A free webinar “Brain Wise: Living Well with a Brain Tumour”, organised by Brain Tumour Ireland, will take place on Tuesday 31 October at 6.30 pm, with special guest, Wild Youth’s Conor O’Donohoe. To register, visit www.braintumourireland.com.
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