My Ramblings

It’s been a busy month. Another year older and wiser; Mother’s Day; Easter; My wife’s birthday; My anniversary of talking to my surgeons when they removed the gremlin…. and as of today…. news that my latest scan as seen further reduction :) What my wife and I were worried about having seen our world being turned update down a year ago has been totally changed (in a good way) by a simple meeting with the consultant saying the tumours have shrunk again It’s a tough journey, b

UP is currently beating DOWN It has been a year since finding my tumour and today I have completed my 87 th dose of chemo and 30 th Oncotherm treatment. I have another 3 sessions left and the look to see what the next plan is. It hasn’t all been easy and there have certainly been ups and downs physically and emotionally. For my own be benefit is keep a blog: https://www.braintumourdiaries.com/ For a good source of information and peer support: https://brainstrust.org.uk/b

In UK brain tumour groups, the same questions come up again and again: Why is there so little funding? Why are new treatments so slow? Why are some treatments available abroad but not on the NHS? Why does care sometimes feel like a postcode lottery? These are completely understandable questions. When time feels precious, delays feel unbearable. I’ve personally received excellent care and feel very grateful. But I’ve also been wondering whether some of the delays are more abou

Trials in the UK currently require you to search or have helpful medical teams. This should be changing with new legislation and processes coming out from Government - proof will be in the pudding, but its going the right way at the moment. If you are looking for trials, I was put towards this for the UK. NIHR, associated with the NHS https://bepartofresearch.nihr.ac.uk/results/search-results?query=&location= If you are looking for Glioblastoma, try these steps to short list

I read and listened to several people recently who all talked about the body being a “battery”. It was something I had not thought of before, but it was a great and simple analogy. “If you have an event coming up, be it a scan, birthday party etc, think about your current battery level and make sure you get your rest in for a few days before. This is not being lazy, this is making sure your battery is full for the event so that you can manage, enjoy or both. After your event

Some calls and forums this week really opened my eyes as to how different people’s experiences with Glioblastoma are…. …the UK variance from hospital to hospital and from consultant to consultant seems so extreme as to how patients feel. I know that we are all different, type of glioblastoma, location, methylated, unmethylated etc which makes it even harder. Combine this as well with what works one of us may not work for another despite all other factors seeming to be the sa