Saturday, September 20, 2008

Where are all the survivors

Why don't you hear about them?

Steve Kelley makes a good point in this blog I touch on it here and throughout this blog the one thing that Steve has highlighted and that I support is there just isn't enough out there that explains what it is all about and what it is like to have BC. Maybe that book in me ought to become reality - probably next year when there is more news?

I became aware recently that a number of quite inspirational blogs were inspirational as the author was rapidly approaching the end of their lives and had insights into somewhere I don't want to go for a long time.

When I look at the number of people who took the journey with me and were diagnosed around about the same time as me, there are only 2 who are cured, me in almost remission and another who has a recurrence that medically shouldn't happen! All the rest are dead. Gulp! I'm not counting the ones that have been diagnosed recently. there are 3 others and 1 who is terminal. However, hundreds of other people I know are fine.

A lot of Cancers are treatable, a lot of cancers are still in the realms of if you are diagnosed you will need a small miracle to walk away although I do know Lung Cancer survivors but some of these are pretty nasty things and there isn't much you can do.

Where are all the survivors? What are their stories? Is it just like getting Flu and after a while you get over it and that is it? Is it that, dying and suffering a lot are better press? It is difficult to know. I wonder if there is still a stigma attached to being diagnosed with Cancer. I feel it from people when I tell them and many don't know how to talk to you. They are lucid and interesting conversationalist until you mention the big C and then they get tongue tied and awkward.

Don't get me wrong, I'd find it difficult to strike up a conversation with someone who is dying of something, I mean what do you ask them? I'm British so - of course - I can discuss the weather :-) but for all sensible people out in the world - what are you going to say? How long have you got? What does it feel like? Aren't you going to miss your wife and kids? It is difficult n'est pas? So perhaps when people talk to me - "You look great", "How are you feeling?", "You haven't lost your hair?" , "never heard of it!". It isn't that they are being insensitive it is that it isn't within their experience, the only thing they know is that people generally die from cancer. They treat you warily.

The trouble is that people do survive, those who do survive don't tend to be telling everyone, apparently my Grandparents both had two lots of Cancer each and survived. It got my Grandfather eventually but my Uncle told me that - my parents never did, although I do remember vaguely being told something. There isn't a lot out there about surviving, they say it is on the increase and occasionally you get a story - Kylie Minogue, Ewan McGregor, Patrick Swazy etc. What I am talking about though are the massive amount of people who actually survive. Prostate cancer for example is something, if known about you can die with and not from! Bladder Cancer, as long as it isn't invasive you have a good chance of surviving it. You can walk away from many of these and yet for some reason, as Steve rightly says, you cannot find those stories out there and those are the ones you need.

Survival figures are OK but they are just statistics. I am going to generalise here and repeat something I said a long time ago. The places on the Internet where you find the most information and stories about BC are in fact the places you go when you need to tell your story and get an audience. There was nothing uplifting there apart from people's humanity to their fellow sufferers - there was pain and tears and death and disfigurement and it was all in all a depressing (there - I've said it) experience. I wanted to be uplifted, get some hope and try and work out which way was up and help myself to grasp onto something that no one seemed to be able to help me with. What was going to happen? how am I going to feel? What is it like? That is what I needed not "my treatment has gone wrong", "It didn't work for me", "I've got 3 months left to live" and so on.

I now realise that there are other reasons that you don't see such stuff. It isn't good copy and once you are on the road to recovery you don't need the therapy of writing it down anymore. I see it as my own way of getting the baggage that this cruel little disease causes amongst my family and friends and of course what it does to me off of my chest but at the same time to capture it, it sometimes is trivial ramblings, other times it is what actually happens, no reason to imagine that it doesn't hurt, that it isn't degrading to have things shoved up your privates, no reason to believe that some days it is as boring as life can be and that other days you are glad you are alive - just like normal really.

Maybe then that is it. Do many people just treat Cancer as part of anything else that happens to them and treat it as normal, get on with their lives, don't think too deeply about it, don't feel the need to write about it, research it or do anything else?

It appears that I have asked more questions than provided answers on the subject. I really ought to stop writing this and go and do some work.

The title sounds like an Airplane crash - "Where are all the survivors", they have to be out there somewhere, there just aren't many using the Internet - perhaps you are denied broadband access if you get the Big C??

Have a good weekend.

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