Brain Tumour Info-Dump

On the 17th September, just after I started this blog, and on her 70th birthday, the former Labour MP Tessa Jowell announced she has a rare form of brain cancer. Today, she was on the radio talking about it – I haven’t yet listened to the programme but I thought I would take the opportunity to share some links and talk a little more than I have done about the illness. I’ll be sharing UK based links because, as with most things, treatment available can vary according to where in the world you happen to be!

Brain tumours are complex, vary a lot in severity and comparatively underfunded, particularly compared to other types of cancer. Because they have different symptoms depending on where in the brain the tumour is, there can be a wide variety of things which happen – from mobility and balance being affected, to memory and cognition. I hadn’t quite realised before just how much of our day to day lives are controlled by the brain – turns out it’s most of it!

The brain is a complicated organ, and I’m not a scientist or a medical professional, so mostly I’ve been steering clear of the medical side of things! I realised that if everyone did that, though, there won’t be enough improvement in treatment and survival rates – I have many complicated feelings about how much good ‘awareness’ can do, particularly because I think those of us who live with cancer (whether ourselves or someone close to us) are far too painfully aware of it!

As I said in my first post, I was diagnosed with a grade 4 glioblastoma (I think this is how you spell it!) – this sounds fairly terrifying, and it is. Fortunately despite the relatively low level of research that is invested in brain tumours, there’s a lot of helpful and reliable information online – I’ve tried to stick with reputable websites, because it’s very easy to work yourself up and become misinformed in an attempt to educate yourself!

Here are some links to more information:

https://www.thebraintumourcharity.org/get-support/young-adult-service/

I haven’t yet made use of this, but I intend to (although this is something I’ve been saying for a while!) – often services are aimed at either older or younger people, and those of us who fall in between sometimes fall through the gaps. The Brain Tumour Charity also has lots of useful information, so if you want to find out more you can do a lot worse! (And despite not being very scientific, I managed to understand it, so I think it’s fairly accessible regardless of how much background you have or don’t have!) They also have a twitter – @BrainTumourOrg

http://scienceblog.cancerresearchuk.org/2016/07/19/making-a-special-case-how-to-boost-brain-tumour-research/amp/

The Cancer Research website has a few useful links, with some of the latest research and treatments on it. I’ve just posted one here, but there’s more and if you have the time or interest it’s worth looking into.

https://amp.theguardian.com/politics/2018/jan/24/tessa-jowell-experimental-cancer-treatment-nhs

Here’s an article from the Guardian about Tessa Jowell.

https://www.nhs.uk/conditions/brain-tumours/

This is what the NHS has to say about brain tumours, symptoms and treatments available.

https://www.macmillan.org.uk/information-and-support/brain-tumours/understanding-cancer

And, finally, a link to the Macmillan page.

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