Social Media – will it get our message out?
As I am over 50 the whole social media ‘thing’ is a bit of a mystery to me. Yes, I am on Twitter, but the abbreviations make it difficult for me to understand what is going on most of the time. Yes, I have a facebook page, but I use it more to get information fed to me from organisations I am interested in, though increasingly I have been using it to keep up with friends as well as the latest news from my selected ‘likes’. But it does seem to be everywhere. How many times have you been talking to someone, or having lunch with a group and everyone seems to be paying more attention to their mobile phones than they are to the conversation? iPads, iPods, iPhones … iProtest, or at least I hope that is what we can do so we can raise the profile of metastatic breast cancer; until it achieves the same status as primary breast cancer as being just another part of the cancer experience. Not one of us would wish that the primary breast cancer survivors join us on the advanced Stage (IV), let them have the spotlight on the first few Stages (0 – III) but we would like our share of the spotlight; not to mention the research money that is being used to find the elusive cure for breast cancer.
It is all very well trying to prevent breast cancer, or its spread, but what about finding something to prevent death from breast cancer? A Stage I breast cancer patient is not going to die of the disease until it progresses to Stage IV. Once you are here there seems to be very little that is focused on death prevention because that is what we need. There is no point in telling us now that if we do ‘x’ we won’t get cancer. We have been there, done that, and we have the cancer; we just don’t want to die of it, PLEASE.
Someone in our facebook group has put together a collage of photos of people we have known who have died. The sad thing is that I never met any of them, but I have shared their journey and I recognise their faces from their avatars on the forum that we all belonged to. The saddest thing is that these are just the ones we know about. There are others who join and remain silent, or only contribute once in a while so we have not had the opportunity to get to know them, and you can never be sure that someone who joins just doesn’t find that the forum is the right place for them. How many of them have died without us realising.
Notice that I used the D word there – DIED. It is a word that we all shy away from using, but it is what will happen to us unless we can get a fair share of the attention, research money and support that being 30% of the breast cancer community should entitle us to.
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