Monday, May 28, 2007

The nitty gritty

Finally, a little breathing space......
I am doing too much - I know I am, but most of it I'm committed to now and I can't get out of it/cut back. I've just got to ride it through and finish them (and then try not to pick up any more!). So I've done my talking (for now) and I've got Guide camp out of the way (yes, my guides made a spectacle of themselves and behaved less well than they could have - fantastic! (not))
So, where am I now?

Peru - one weekend away in the UK to go, some leaders meetings and then, in August - we finally go. Oh, injections, them too - I had my Yellow Fever last week - Rabies jabs start this week - Heps A&B to come later on. Today I go in search of new walking boots so I've got time to wear them in before we go. 3 weeks city walking until Scotland and then a week of outdoor walking there - should get them into shape.

Guides - only six weeks left until school breaks up and we finish and we're doing First Aid for about 4 of those.

So - my 'talk'. It went very well; I was quite nervous beforehand and I'd sat through about 7 presentations on various aspects of breast cancer which hadn't improved my state of mind. What did I say? Hmm, I can hardly remember now - it's as if standing there and saying it to all those people has dulled it all.
I talked about how difficult dealing with diagnosis is - from the perspective of having to take in what's happening but also about how confusing and difficult it is to negotiate the new 'foreign country' of hospitals and finding your way between all the different departments to make appointments and the waiting for results. I talked about how demoralising the treatment process is - about how you lose ownership of your body, about how my body had been looked at and handled by more people in that year than it ever had done in the whole of the rest of my life. About loss of independence -not being able to look after myself; about being 'apart' from the rest of the world; about being the walking embodiment of the potential of death; about being 'marked out' literally and figuratively from friends and family. About how difficult I've found the change in my body and about how people feel they have to right to comment about my appearance. I talked about the invasiveness of treatment - of having my body manipulated and things put into in and taken out. Then I talked about how difficult it has been/is to be without cancer - to find my way back into the world; about how it's not over when the treatment ends; about how difficult it is to live in the memories and to move out of that place. And I told them how having cancer has made me feel like I am hopeless and worthless and untrustworthy.

There was a moment of silence after I finished and then I did get some questions - some good questions like 'what could we do to make the time of investigation and diagnosis easier?' and about how to support people mentally and emotionally using counselling and the breast care nurses. Afterwards more people came up to me and spoke to me - one of the members of Cancerkin who has had breast cancer thanked me for putting into words some of the things she had also felt. Several doctors came and asked me more about what they could do and thanked me for being so honest and 'brutal'; one asked me about my portocath and about what difference it had made to my treatment - he then asked me if I would come and speak at his hospital if he asked me. I said 'yes' but I don't actually think it'll happen. Several people came and asked me if I had acting training/experience because of the way in which I had spoken; so I did have to own up to having studied some drama at university. But I wasn't really using those skills - I didn't need to; I was just speaking the truth in the best way I could, to try and help people to not just understand but also to feel some of what it had been like for me.

I'd like to put up the whole shebang for people to read but I think it's too long for a post and I don't think I have any other options on this site - plus, I don't think it will read as well as it 'speaks'. I'm toying with the idea of 'odeoing' it but I don't have a mic at the moment. Plus, I'm not sure if I want to put it out there for the whole world to look and potentially to take. It'd my story and I'm verging on the paranoid about keeping control of it. I don't want anyone else to claim my words and I don't want anyone else to change them. They are mine. However, if you'd like to read it then drop me an email, introduce yourself (if I don't already know you) and I'll send you the Word doc.

I will, once I have time, be condensing it into an article for the Cancerkin newsletter so maybe that will turn into something more readable - well, that's the plan anyway.

Right, enough for now - more things to do. Remember, even if I'm not emailing and commenting I still think about folk all the well, be whole, be loved.


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