Managing life with a brain tumour during lockdown

29th April 2020

Ambassador Oliver Highway discusses how coronavirus has impacted him and his family and how he is coping during this time.

My name is Oliver Highway and I am an Ambassador for The Lewis Moody Foundation. To those that may not know, I was diagnosed with a Grade 4 Glioblastoma in 2012 and my brain tumour is with me for life.

A bit of background on my situation. I have regular cycles of chemotherapy, which I will have to undergo continually to manage my brain tumour. My surgeons were able to take out a large portion of the tumour, however with this I lost some language skills and had to undertake 12 months of speech therapy to be where I am today.

With lots of support and help I tried to get back to normality following my operation and tried to return to work. Unfortunately, that was not possible for me. Since meeting Lewis and Annie at a Family Day with my son Elliott, I have found being a volunteer for The Lewis Moody Foundation has been extremely rewarding and I consider myself to be very, very lucky to part of the team.

How Coronavirus has impacted my life

Over the last few weeks, following the Coronavirus outbreak, there have been a number of things that the family and I have had to specially change due to my ongoing chemotherapy treatment. Thankfully my treatment can continue, although some restrcitions are in place, but I know others have not been so fortunate with this.

I was sent a form which identified me as a person at risk of severe illness, should I catch COVID-19.  So, in addition to the changes everyone is currently undertaking, myself and my family are faced with many other restrictions aswell.

I am not allowed to leave my home at all and so I have been in complete lockdown since this started 6 weeks ago. I’ve been advised to aim to keep 2 metres apart from others, including my wife Sharon and son Elliot, and where possible sleep in a different bed and use a separate bathroom from them.  We are extremely lucky that I am able to sleep and wash in a different place at the moment and we do our best to keep the distance between ourselves at home. I am very fortunate to be able to be with them both in the garden and have fun playing indoor and outdoor games, whilst keeping the best distance possible. It is, however, very difficult.

The thing that Sharon, myself and our son Elliot are finding particularly hard at the moment, is not being able to have a big family hug! When the time comes it really is going to be a massive hug indeed!!

My Advice

What I have realised is that there is a lot I can do to support and push myself to cope with my brain tumour diagnosis. The support from The Foundation and The Brain Tumour Charity have all helped me realise this and have helped me to improve my mental and physical strength with something I have put together called My Triangle, which I hope will help you too.

 My Triangle

The corners of the triangle are;

1. RESPECT – the tumour and regular chemotherapy, but do not be afraid of either of them.

2. ACCEPT – the constant Physical and Mental ups and downs of living with a brain tumour.

3. LEARN and IMPROVE- my Techniques to remain as strong and positive as I can.

In the middle of the Triangle is what I am fighting for, Option A.  Options B, C, D etc do not exist in my mind.  I understand that I will not always be feeling good enough or able to focus on Option A, but the aim is to get back to it as quickly as I can by using My Triangle.

Option A is: Live life as long and as enjoyable as possible with my wonderful family. Support others and remember my Motto, Look Forward, Be Positive and Keep Smiling. I live by this daily and it’s helping me now, especially through this time and I hope it can help you too.

If anyone would like to know more about my story or my techniques, which I need to get stronger as the battle gets harder, please get in touch with The Foundation and I would of course be very happy to have a chat with you!

Wishing the very best to everyone in a similar situation, stay safe.

Oliver Highway- Ambassador of The Lewis Moody Foundation.