Rick O

#BNOS 3 yrs ago - still in shock from losing Laura & trying desperately to understand this vile disease that steals so many young people #BNOS2025 & I’m proud to be part of the @ourbrainbankuk team -sharing our research project & fighting for more effective treatments 4Laura 🌈

@NICEComms Your methods should support delivery of crucial, life-extending treatments like Optune Tumour Treating Fields please

Your opportunity to shape NICE methods and processes: nice.org.uk/about/what-we-… Do you have valuable ideas or insights that could improve NICE manuals? The next modular updates selection round is now open. 📝Submit suggestions through our online form by 18 August.

Policy number 991BHQ

You covered a crucial treatment for my brain cancer for two years @AvivaUK and suddenly pull the plug - why?

@shitscaredmum Doing as well as can be thank you Nic! Back on chemo as my MRIs look iffy, but all is ok 👍

@RichardOrna How are you doing Richard? I hope things are going well and that you're taking good care xx

@clairyhawk @AvivaUK They stopped covering Optune! According to the data - the best treatment there is! And they say it's 'experimental' = bonkers! Hope you're both well Claire

@RichardOrna @AvivaUK Oh no Rich, what?!

@astrazenecauk in the US, you have AZ&ME. I'm in the UK, have brain cancer and cannot afford Tagrisso, which could help with my EGFR amplification - please can you help me?

Thank you so much for supporting the Rare Cancers Bill today @JoshFG My daughter died from #glioblastoma so I'm passionate about the bill & was so moved by your speech, Alex sounded like the best brother & I'm deeply sorry, sibling loss is always underestimated. #BeMoreLaura

@GenesisCare @PaulGearing1 In early 2023, Chris Herbert, smiling, told my wife and I that my GBM had progressed, stopped my TMZ and said I'd be dead within three months. He doesn't know what pseudoprogression is. He is an ignorant, heartless monster.

We’re so pleased to welcome Dr Chris Herbert as the newest Specialist Advisor within our UK Neuro Oncology Clinical Reference Group. Find out more about Dr Herbert's expertise in the treatment of primary brain tumours and brain metastases here 👉 bit.ly/3Xn4xgT

@shitscaredmum Yes!!!

The Rare Cancers Bill takes place in the House of Commons 14/3 – pls contact your MP & ask them to use their vote We desperately need greater accountability, improvements to regulation & more clinical trials for 'rare' cancers. Here's a letter template ... cdn.shopify.com/s/files/1/0615…

@shitscaredmum @GJBrainResearch You are NOT a broken record Nic - you are a glorious, essential symphony! Thank you for all that you are doing - please keep up the extraordinary work and let me know if I can help

I know I’m a broken record when it comes to the importance of brain tumour research but here’s an actual opportunity for healthy participants to get involved & potentially make a real difference for the future treatment of brain tumours. Pls help if you can. @GJBrainResearch

@braintumourrsch @BBCBristol @bbc5live @shitscaredmum @brainstrust

In December 2022, I was diagnosed with brain cancer. To raise funds for my treatment and awareness of the need for better research and treatments, I'll be taking part in the Bristol 10k on Sunday 11th May - please support if you can greatrun.org/events/great-b… justgiving.com/crowdfunding/h…

@shitscaredmum @netflix I will keep well away then! All OK here thank you Nic - hope all is OK with you and family xxx

@RichardOrna @netflix It would make your blood boil Richard! Hope you're doing ok xxx

Wasn’t sure I could stomach @netflix #applecidervinegar & it really is a tough watch. The idea that Belle Gibson faked a #Glioblastoma diagnosis for attention & then for profit and is utterly horrific. The acting is v good but sadly Laura wasn’t acting - this was her real life.

@ProfRAScolyer I hope this is pseudo-progression Richard - thinking of you and your family - take care

Unfortunately my recent scans show some new changes which could be an effect of my previous treatment or recurrent brain tumour. I might need surgery in a few weeks time to obtain some tissue so the smart neuropathology team can help to figure this out (which I know isn’t always easy)! @SydneyLHD @Sydney_Uni @NthSydHealth #Brainstorm #glioblastoma

@shitscaredmum @GJBrainResearch @HamerlikB Unbelievable! How exciting! ❤️

Just imagine being able to detect brain tumours using tear fluid! Such exciting work which could fundamentally change the diagnosis & treatment of brain cancer. Proud to support @GJBrainResearch @HamerlikB in Laura’s memory ❤️#BeMoreLaura

@shitscaredmum Big hugs back to you all! A bit of fresh air does wonders - enjoy and take care 😊

It takes a lot less time for 3 to open presents than it did for 5, so we took the advice & made a new tradition- a quick festive climb up Pendle & a warm in the pub before making dinner. Our lovely family got us through the day - big hugs to everyone finding the holidays tough x