Meet Neil...

Neil, medullablastoma

When were you diagnosed and what with?

I was diagnosed with a medullablastoma, which is a cancerous brain tumour, on the 21st of November 2016

 

How did you find out you had cancer?

I’d had three weeks of dizziness, vertigo and problems with my speech, coordination and lost a lot of strength in my right arm. I went to the doctors and at first they thought I had an ear infection but then they did an MRI and found the brain tumour.

 

What did you think and feel when you were diagnosed?

It was a massive shock. I was quite scared and I never thought this would happen to me. The most upsetting thing was calling my friends. When I told my best mate I couldn’t stop crying. And he told me he was crying for days when he found out. But I was glad in a way that they knew what was wrong and they said they could fix it. I blamed myself at first and thought it was my lifestyle that had done this, drinking too much or doing drugs when I was younger but it turns out I was just unlucky.

 

How did the people around you react?

My close friends were devastated, and tried to help as much as possible. My family helped me through it and my brothers were amazing. Also my extended family and parents’ friends really rallied around us as a family and helped massively. I was quite surprised to not hear much from a few people, but I’ve since learned that is quite normal, and it’s a good way of knowing who really cares about you.

 

What treatment did you have?

I had brain surgery, then radiotherapy of my brain and spine for six and a half weeks.

 

How did you feel through treatment?

The treatment was really hard. I started the radiotherapy just as I was getting better from the surgery and it made me quite tired. I lost my hair and had to go back on steroids. But I knew it was worth it and I would just have to soldier on and get through it.

 

What happened after treatment finished?

After treatment finished I had almost every symptom you could imagine! It’s 8 months since it finished and the recovery has been long. I was told it would take a year to reach my new normal and it’s damaged my hearing a little bit.

 

How did you get involved with Shine?

My mum told me about Shine. I didn’t really fit into Maggie’s which I’d gone to a few times and my Mum suggested I go to one of the Shine meet ups and talk with other people who are going through or have had been through a similar thing.

 

What difference has Shine made to you?

It’s helped me a lot with my confidence. It’s a great way to talk to like-minded people and really nice to socialise after just being with my mum and dad for nearly a year!

 

How do you feel now about your experiences? What‘s been the biggest change you’ve faced?

I feel lucky. I am in remission and I always say to people that it could have been worse. I’m quite angry though; I was a bar manager before and have been told by doctors I can’t do that any more because of the stress and long hours. I’m less confident, but I think that will slowly come back.

 

If you could give one piece of advice to yourself before your what would it be?

I would say try not to be impatient and get yourself upset. Your going to have a crap year, but it will pass. Just be patient and trust me it will be a distant memory.