Do it your own way …
because no one walks in your shoes … just saw a picture on facebook with this saying on it and it is so true! After all, who else can do it for you? Everyone has their own opinion on how things should be done – it’s my way or the Highway.
Think how awful it must be to be average. Normal. Standard. Regular. Middling. Typical. Mediocre.
I am beginning to think that it is a bit like that with Advocacy. I may be able to fit in with some campaigns, but I have yet to find an organisation that I agree with 100%, and I’m not likely to. So I pick and choose the bits I like of each one, and do my own thing as well. Even just answering an article on-line can help to start to get someone to think differently. Then if that one person gets another to think differently then a chain reaction is going to start. There are few causes which can really take flight and ignite interest, and I am beginning to think that there is quite a lot of Pink Fatigue going on out there. Quite rightly those with other forms of cancer are fed up with Pink Ribbons and the amount of money that the cause gets, but for those of us with Metastatic Breast Cancer the point is that virtually none of this is for us!
As I have bored my readers before, only about 3% of research funding goes to Metastatic research, look at any of the big breast cancer charities here in the UK or any other major country and it is Pink, Survivor, After Treatment which is shoved into your face. You have to hunt for Metastatic / Advanced / Secondary breast cancer somewhere at the bottom tucked out of the way in the hope that no one will notice it. I have gone back to one UK forum recently which was the only one that really even tried to do anything about MBC Awareness and the awareness day in October. Again it is tucked away and as far as I can see nothing has really changed in a couple of years. No new ideas, and no news on how things are actually progressing. It feels a bit like they want to be seen to be doing something, and the other BC charities in the UK are not really doing anything at all, but they don’t really want to push anything or make the Early Stage Breast Cancer community feel uncomfortable. The don’t want to upset people with those who something like 98% of not making it to 10 years post-diagnosis, unless it is to raise money. Then the numbers who die each year are quoted with ‘we must find a cure’ but then what … it all goes to Early Stage Breast Cancer for which a patient can be successfully treated and have an 80% chance of being alive in 10 years after diagnosis.
The problem is that not enough of us, the people with Metastatic Breast Cancer, actually come forward and will do anything about it. It is a bit like Male Breast cancer – they don’t want to talk about it. The trouble is who else is going to do it for us? But where to start?