Monday, 13 April 2015

I get by with a little help from my friends

I have so many wonderful friends and family and I’d like to thank each and every one of you for your offers of assistance.  When I was in Australia recently it felt like my 21st or our wedding all over again.  I remember saying at my wedding that “the only time a group of people this special to me will ever get together again is at my funeral”....but I wasn’t factoring in a brain cancer diagnosis!  

Catching up with 30 of my closest Australian friends
People react in different ways to finding out you have cancer.  Most people are upbeat and want to get the latest update.  Others want to know how they can help, even if they are on the other side of the world.  I’ve had friends send over books, audiobooks, meditation tracks, meditation mats and cushions, videos, vouchers, recipes, cards, baked goods (hello monthly brownie club addressed to Baron Brown), fruit baskets and more, with parcels travelling all the way from the US and Australia.

There are other things that people around the world can do to help and, surprisingly, most of it is desk based.  One of the hardest things I have had to get my head around is cancer itself – what it is, treatments, latest research and how the whole cancer ecosystem works. After 5 months, I’m now a cancer expert. But there’s so much to know and keep on top of – and I could use some help! If you come across news articles on brain tumour treatments please send the link to me, don’t assume that I have seen it or know of it. Or, if you are interested in giving me a hand to research trials that are being run in Europe and the USA on glioblastoma, please let me know! The more brains the better :)

When people ask how they can help, it’s hard to know what to say. I absolutely love getting the presents and letters – they remind me that I have so much to enjoy in life. But most of the things that are the front of our minds are about making sure that we get access to cutting edge treatments that might extend my life expectancy. For instance, I’m taking an anti-viral drug called valgancyclovir which has been shown in clinical studies to extend the lives of those who take it by several years.  I’m also taking 20+ supplements and off-label drugs (drugs being used for a use other that the original one they were designed/approved for) on a daily basis.  This strategy gets referred to as the cocktail approach to treating cancer and it is based on the strategy that was pioneered for the treatment of HIV/AIDS in the 1970s/80s. The third weapon in my arsenal is a trial run by the Care Oncology Clinic here in London who are testing a new approach to treating cancer using four different off-label drugs.

The wonderful thing about the NHS here in the UK is that is provides world-class health care for every single person who lives and works here – regardless of their income. If there is to be a downside with this system it is that in some sense you are lulled into a false sense of security. It turns out that even with a terminal diagnosis everybody gets a standard type of care and nothing else is available. It’s up to you to find out ways to prolong your life and to fund it privately. We’re still investing in our future – but it’s in a completely different way to what we had dreamed. 

One of the most amazing acts of generosity has come from all the people who have donated money to a GoFundMe site created by my good friends Stephen Roux and Nik Devidas. I have always had a hard time asking for help so it is moving to see so many friends and family – and strangers! – donating money to help me to buy medications and fund other activities and therapies that might save my life.  Thank you to Stephen and Nik for setting up and promoting the campaign – and a huge thank you to everyone who has donated.  I promise to live for many years to come and do something incredible with my life. 

Nik "the Godfather" Devidas
Stephen "The Rock" Roux

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