In May 2022, when I was 22 years old, my boyfriend Hugo was diagnosed with a brain tumour located on his brain stem. He had minimal symptoms including blurred vision and migraines. After going to the GP and not receiving much guidance he went to an optician who diagnosed him with papilledema, which is a build-up of pressure around the optic nerve potentially caused by a brain tumour.
10 days later, Hugo was taken to hospital for CT and MRI scans. Within two days he was admitted to hospital to have urgent brain surgery to take a biopsy and have a shunt fitted to reduce the pressure in his brain. The whole situation was a massive whirlwind and life got turned upside-down overnight! The biopsy confirmed that Hugo had a germinoma tumour. We were very lucky that the surgery was successful and we received the good news that the tumour was curable with radiotherapy treatment. The whole experience came out of the blue and has definitely taken its toll on my mental health.
How being a young adult carer affected my mental health
One of the main feelings I experienced during Hugo’s treatment was loneliness. I felt as though there was nobody else who was experiencing the same thing and nobody I could call who could relate to my situation.
Unfortunately, as a young adult carer, I fell through the gap at the hospital. I wasn’t made aware of the support groups that I could turn to when things were bad and I needed support. I was left on my own to manage – basically winging it!
A big side-effect of Hugo’s treatment was fatigue and this meant he spent a lot of time asleep. This added to my feeling of loneliness and isolation. The increased fatigue stopped us from going out very much during his treatment and recovery – it almost felt as though we had been grounded!
The treatment also had lots of other nasty side-effects such as nausea, vomiting and hair loss. Watching Hugo become so unwell was difficult to witness and definitely affected my mental health.
I was Hugo’s main carer, as we’d decided he should move into my house before he started treatment. I felt huge pressure to keep things together and to go into autopilot mode to carry on. At the end of Hugo’s treatment, we managed to go to a family gathering where a family friend who’d experienced being a carer told me that “no one protects the protector”. This resonated with me so much!
Being a young adult carer for somebody diagnosed with a brain tumour definitely had an impact on my mental health. But it was only after we got the good news that Hugo was better that I really noticed the full impact. About 14 months after he finished treatment, Hugo got his diving licence – and his independence – back. – Then it began to hit me what had actually happened and what we’d both lived through.
A big effect on my mental health was the paranoia I experienced around health issues. I’d be extremely worried that the treatment may not work or that someone else I cared about would be diagnosed with a brain tumour.
I’ve also experienced feelings of being trapped and so now I suffer from claustrophobia. This isn’t something that had ever bothered me before. I cannot be in small rooms with no windows as this is a trigger for me. This takes me back to those horrible, bleak little rooms in the hospital with no windows where they tell you the scary news.
My mental health has also been affected as I struggle going to busy places due to the fear of an anxiety attack. Before Hugo’s diagnosis I didn’t think twice about going out to places and someone only had to mention the word holiday and my bag was packed. So these fears have had a large impact on both my social and work life.
Finding ways to improve my mental health
As I’m now working through these issues, I’ve found some coping mechanisms that work for me. These include exercise. I recently ran the London Landmark Half Marathon for The Brain Tumour Charity. I find running to be a positive, although it may not feel like it at the time, it does make me feel good afterwards.
Another coping mechanism that I’ve found is sharing my concerns. Previously, I was not a sharer and told myself to carry on and pretend the worries weren’t there. I’ve found that speaking to family and sharing my concerns takes away the pressure of having to be 100% okay all the time.
I’ve also found becoming a Young Ambassador for The Brain Tumour Charity has been a massive positive. It’s helped me find people who understand what I’ve experienced and know exactly what that feels like. Chatting to fellow Young Ambassadors gave me a sense of relief and has definitely had a positive effect on my mental health.
And finally, I recently got a puppy called Peanut. I’ve found that pets can be a great tool for helping to relieve anxiety and help take your mind away from your worries. Peanut is constantly happy and loves life. This does help to cheer me up on days when I’m not feeling great. Even though he does eat every pair of shoes he can find!
One thing I’ve learnt is that there will always be certain scars left behind and to accept these. We‘re so lucky to have a chance at getting back to a new normal so I will never take ‘normal life’ for granted.
I’ll do my best to help raise awareness for brain tumours and the mental health effects they can cause.
