Andrew received an Acoustic Neuroma diagnosis at 40 and underwent surgery in 2017. It was upon returning to work that Andrew realised he needed support as fatigue proved incredibly hard to deal with. In this article Andrew has shared his experience of how opening up to the brain tumour community has helped him manage his fatigue in a way that allows him to live life to the full.
I want to tell my story because I know what it’s like and I like giving back and helping others. A lot of people feel isolated and joining meetups and groups helps a lot. Groups like brainstrust and BANA are great.
I was 40 when I got diagnosed, it was an Acoustic Neuroma, 3 ½ cm. Surgery was planned in May 2017. I had the surgery on the Monday and got discharged on the Friday.
Before the surgery, I was actually experiencing a lot of symptoms for months, but like other men, I ignored them. My hearing was slightly off on the right side. Doctors were saying there was nothing wrong. Then my balance was affected. And then I woke up after surgery with grade 6 facial palsy. I also lost my hearing and balance nerve on my right side. Salford Royal was fantastic with the aftercare and everything.
Reaching out for support
At first, I didn’t think I needed help from charities, but when I got back to work, I realised that I did need help. Fatigue was the biggest issue for me. I went to a conference by BANA and realised how important it is to talk to people. It is life changing. People with Acoustic Neuroma always get dismissed because it’s “benign”. It was through BANA that I discovered brainstrust – someone talked about the fatigue webinar as fatigue is something that affects me.
Feeling part of a community is massively important to me. Face to face meetups are really helpful too. You get to talk to people who are experiencing the same things and the people I meet inspire me.
Finding a new normal
It takes a bit of getting used to. I went back to running and playing football. When I get dizzy, I stop to rest and carry on again. I’ve always been really positive.
I recognise I’m not going back to my normal. It’s my new normal. As soon as you accept it, it becomes easier. I talk to other people who have been through it as well and it helps.
It took about 12 months for me to settle down. I recognise I’m lucky and I think my journey has been a lot easier than other people. One of my main motivators was getting back to work.
In 2021, I ran 12 marathons in 12 months. Nothing was going to stop me. I do volunteer work for BANA as well and I talk to other patients.
My advice for others experiencing fatigue.
- Power naps. I need my nap every afternoon and it helps a lot. You’ve got to be more selfish and think about yourself. Put yourself first.
- Listen to your body. When you feel tired, rest.
- Exercise. Pick something you enjoy and keep doing it. Make it a habit.
- Less is more. Prioritise your activities. You don’t have to do everything.
- Take life one day at a time. Be patient. A lot of people get frustrated when they don’t see progress, but you have to be patient. Patience is a big thing. I hear people saying getting fed up cause they’re not improving, or exercise isn’t helping, but you need to understand that these things may take a while.
- Self-discipline. This is especially important with exercise. Make it a habit. It’s unbelievable what your body is capable of.
Looking back on the past, I wouldn’t want to change a thing. I feel like this brain tumour diagnosis flipped my life around to the positive. I wasn’t always a positive person, but now I am. I also learned to let go of things that are not in my control.
So, get out there and make some memories.
If you or someone you love has been diagnosed with an Acoustic Neuroma, you can find tailored information, advice and support on our Acoustic Neuroma community page. Click here to visit the Acoustic Neuroma page. If Andrew’s struggle with fatigue resonates with you, brainstrust can support you. To find out more about fatigue management, visit our fatigue page here.