Angry and sad

Hello all

I’ve been doing my 10000 steps a day for brain tumour reseach and today everyone was full off sadness and anger https://m.facebook.com/nt/screen/?params=%7B%22fundraiser_campaign_id%22%3A322066129792805%7D&path=%2Ffundraiser%2F&_rdr

Sadness because for the 2nd time in as many weeks we’ve lost another member of our community and yet again they were only 5, Nate follows Isla to beautiful children who have died too young as well as my good friend Mathew who was an elderly 18, already a published poet

Mathew in the centre with his brothers

There are many advantages to outliving your prognosis, obviously still being alive, more time with the family and friends and myriad more. There are only 2 disadvantages I can think of. Firstly, I hadn’t budgeted to live this long. Secondly and most importantly are the people, albeit only introduced online in our close knit community and during these weird times of pandemics, you still become close to them, and then some of us die. It hits you like the loss of a life long friend. As I’ve not got long I would happily swap my position for any of those 3

But why am I angry? I’m angry because brain cancer is the biggest cancer killer of the under 40s in the UK, yet we receive 1% of the research funding, despite the best efforts of brain tumour reseach brain tumour charity and brain tumour trust. We are a minnow in the cancer world when it comes to reseach. Why? Because it’s a rare cancer and brains are very complicated. Essentially it’s a financial consideration, you don’t get much bang for you buck, not a good return on investment. We are a Pharma nightmare

Well, try telling Nate’s parents and siblings, Isla’s family, Mathews family. My children who in reality will lose their Dad at a difficult age, after losing their step brother 3 years ago. My wife / widow who not only lost her only Child but is going to lose her husband. My Dad after losing his best friend of 52 years in my Mum now his son, my brother and sister, my niece and nephew. Now I’m not a great Dad, husband, son or uncle but I try my best. What I’m getting at is for every tragic early death there is a ripple effect of devastated family and friends. All because we had a complicated cancer

Now I’m realistic, you can’t keep throwing money at things but successive governments have not invested.

Mind, wasting 2bn on PPE you can’t use and the wall paper business isn’t a good look. Another consideration is the billons we spend on maintaining trident and considering renewing it also seems to be a bit of waste. Why we feel we have to be one of the few countries to have a nuclear deterrent has always fixated me. Before I knew about the shortfall in cancer research. Let’s be honest if we ever have to use it we are all knackered

So that’s why I’m sad and angry, I will miss isla and Nate as I massively miss Mathew.

But mostly today I contemplate how lucky I am to make 50, compared to many in our community that is old, but I’m confused as ever about the priority of spending of successive governments