“April 2019 would be my last time playing in a sport I loved!” – read Chae’s inspirational story

Chae, from Bude, Cornwall started playing rugby when he was 8 years old, reaching the heady heights of playing at Twickenham for Cornwall U20’s when he was 19.

When 12, Chae was diagnosed with an aneurysmal bone cyst on his femur, stunting the growth of his right leg. Effectively this meant that Chae’s leg had stopped growing. Initially, this was remedied by thickening the sole of his right shoe. Longer term, the plan was to operate to lengthen his leg in his late teens to enable him to pursue a career in rugby.

On reaching 19, in June 2019, Surgeons operated on Chae inserting a pin to secure his newly lengthened leg. The recovery time was anticipated at 12 to 18 months.

Typically, Chae worked hard on his rehabilitation and by January 2020 was able to run again, with a return to rugby in September 2020 firmly in his sights.

As soon as Chae started running again, he noticed that he could not lift his left leg properly and it was dragging behind him. Chae also experienced migraines and his speech changed. This, together with saliva trickling from his mouth was a clear sign that Chae was seriously unwell.

A few visits to the GP and two referrals to Barnstaple Hospital and a CT scan later, a lesion was discovered on Chae’s brain – either a cyst or a cancerous mass.

Chae took this news in his stride and really had no comprehension as to just how serious his illness was.

To enable an MRI scan of Chae’s head, doctors had to remove the metal pin from Chae’s leg earlier that anticipated.

After an agonising wait, a grade 1 pilocytic astrocytoma tumour 18mm in sizewas diagnosed – it was rare and inoperable. Six weeks of combined radiotherapy and chemotherapy and a further six months of chemotherapyensued. Chae’s last scan showed a slight improvement the tumour had shrunk slightly.

Chae’s mum, Maggie is now his full-time carer. She gave up her work following his diagnosis. Chae has had to give up playing rugby, the sport he loves. He lives with limited mobility along the left-hand side of his body, which sometimes moves involuntarily. Chae has to use walls and handrails to move about the house. When out and about he uses a wheelchair to get around. The placement of the tumour has caused sight problems and he has to wear glasses.

Chae lost many friends after his diagnosis. He would get funny looks, like they had seen a ghost. Friends did not know what to say, what to do, and he would often get asked ‘how are you?’ when he replied ‘fine, you?’ they would reply ‘no really, how are you?’ they only ever seemed to be interested in his brain tumour which Chae found very annoying.

Chae wants everyone to know that he is exactly the same person he was before his diagnosis. He is still Chae!

Chae’s diagnosis has impacted on his whole family, and it is only within the last six months that he has come to terms with it.

So, how has the RGF helped Chae?

Chae approached the RGF in September 2022 successfully applying for funds to assist with the purchase of a PC to enable him to carry out social media work for Launceston rugby club, writing match reports, helping to him to pass the time during days when he is capable of doing nothing else.

Chae told us: “The PC will help me in many ways, such as social media work for my beloved rugby club. This is something I have done since becoming ill. I started on my phone with little edits and write ups, but this now allows me to create bigger and better things for the club. The PC is important to me as it hasenabled me to interact easier with other people online and allowed me a wider range of attachments. Due to my inability to use my left side very well, as well as my eyesight being poor. I can now, not only do more, but also see more.

The PC also allows me to do fun activities when not working. Such as playing/interacting on computer games with friends and enjoying some downtime, something I have not been able to do in a very long time.

Currently, I spend an hour or two a day, working/playing games on my PC. Ithas also allowed me to join Zoom/Teams meetings where I have had volunteers’ interviews, quizzes etc!

The RGF was the first charity I contacted, and they have been very easy to deal with and have understood my needs when asking for help – thank you RGF from the bottom of my heart.

In response, RGF trustee, David Cant said: “What is so inspiring about Chae is his willingness to share his story, opening up on his feelings and telling us how it is. The often unspoken side effects of cancer and how to live with it – how some of his friends have deserted him, how his mum has had to give up her career to provide full-time care for him, having to give up playing the sport he loves, having to tolerate ignorance around others coping with his illness.

What resonates most of all to me about Chae’s story is his compelling message that despite everything he is still Chae and wants to be treated as such and to let people know that they are not alone during their diagnosis. And the message to everyone – do not desert your friends when they are ill. Support them, communicate with them, love and cherish them. And embrace them as the person they have always been.
It is also admirable that Chae now campaigns with Brain Tumour Research for an increase in the national investment into research.

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