I got home late last night after two days at the Macmillan cancer voices conference at the Hilton London Gatwick hotel. I feel a mixture of huge enthusiasm and sadness that the conference is so much about survivors and what happens after cancer treatment.
If anyone has actually read this blog, or noticed the title, I have Stage IV breast cancer - this is considered incurable and my hospital is only giving me palliative treatment with a view to easing symptons. My cancer is ER+ and HER2+ which is supposed to be one of the more agressive forms and the average survival after diagnosis is 3 years. I was diagnosed in September 2007, although they didn't finally 'discover' that I had mets all along in January 2008 (so try listening to the patient...) when I was 47 years old.
Cancer charities raise money on the back of people like me, and by using the fact that so many thousands of people are dying of cancers of all kinds. When they get the money what do they spend it on? Admin, prevention, education, raising awareness, research to prevent cancer and stopping it spreading in the first place. But what about us, the people whose cancer has spread and are considered to be incurable? How big a bite of the cherry do we get? A couple of years ago I asked Cancer Research UK, one of the biggest cancer research charities in the world, just how much of the £100,000,000 a year they invest in research was send on researching metastatic cancer; the kind of cancer that kills. The answer? 4%. Yes you did read it correctly. FOUR percent. That is not much of a bite, and when it is it a bit of the pit, not the juicy flesh. This is actually about the average anywhere in the world.
There were times at the conference I really wanted to shout out about this. What about the people who are likely to die from this disease? Why is everything seemingly about supporting people in their cancer journey and 'after' their treatment. I have a 2% chance of being alive in 6 years time. Anyone who thinks that these are good odds please raise your hands now...no I don't think they are too great either.
Not one of us who are Stage IV want to burst anyone's bubble of confidence that they will survive, but we also should not be ignored and not spoken about in hushed tones. At one of the workshops a lady asked what secondary cancer was and I had to explain to her. It turned out that she was about to start working for Macmillan, a cancer support charity which is 100 years old this year, and she had no idea what secondary cancer is.
The enthusiasm came from some of the grass roots initiatives that they are trying to start up of support being available in local communities to help with taking people to hospital and doing shopping, gardening etc. Sounds like a really great idea, but a massive task. I know that there are changes going on concerning the website and their search for volunteering opportunities doesn't seem to be working at the moment so I can't have a look at what they have going on around here at the moment. The trouble is that a lot of these things are based in cities and not small towns.