As many people reading this will know, I was diagnosed and treated for a rare Medullablastoma tumour last year. I’ve aligned myself quite closely with The Brain Tumour Charity as I strongly believe in the work that they do, and most importantly, the support that they provide.
I know that some people may find this hard to believe but throughout my initial ordeal I was overlooked and received zero support from a certain well established and embedded Cancer charity or otherwise. Many people must have just assumed “28-year-old kid, he’ll be fine”. My family and I were pretty much left to do stuff on our own. Of course, the NHS staff were brilliant, but they exist to try to fix you – they are not oncology experts. Around this time I stumbled across The Brain Tumour Charity and found that there was such a wealth of information and that people were prepared to engage with me in multiple ways (including through social media), which felt brilliant. Suddenly I started to understand the bigger picture and feel like I was part of a community.
The Brain Tumour Charity runs Information Days with that purpose – bringing together a local community and sharing ideas and information in a way that I’ve seen no other charity do.
As an example, the colleague of one of the surgeons who operated on me spoke and discussed what it’s like to be a brain surgeon. She was visibly moved and you could see that she really took each patient to heart. Despite what you’d think, she only performs about 150 operations a year – so it really isn’t a case of one-in-one-out, she really does have the time to plan, operate and follow-up – there’s a lot more than just cutting in to someone’s head and debulking a tumour. I’ve encountered this surgeon before, when I was brought back in for life threatening dehydration, and I’ll admit, she terrified me. Seeing her in this light has definitely made her more human to me and helped me to understand her role a lot more thoroughly.
There was also the opportunity to ask questions at the end, which is a pretty rare opportunity in the world of oncology. You think that ‘cancer’ automatically gets you 20 questions – with the NHS it doesn’t. That’s where brilliant sessions like these come in.
I had the opportunity to meet some really wonderful people on the day, both staff who have supported me, and fellow people who’ve been blighted with a brain tumour. It’s additionally great to hear from the ‘partners’ – it gave me, as the guy with the tumour, a much more rounded view of the situation.
Next time they hold an event local to Manchester – hope to see some of you there maybe? 🙂
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Below is a link to the ‘main’ Jake video which was introduced to the group and which I saw a while ago and think is fantastic.
(there are others too – see them via the YouTube page. GREAT for adults or kids and explaining to friends and family)