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Saturday 17 August 2013
It's weird when you are dying. You are suddenly filled with a sense of urgency to get things sorted out and you know you only have a finite time to do it. I have written letters and books to HWISO and the children and am still sorting out my funeral stuff but most things here are sorted, organised and more or less up to date.
So I have turned my life to the internet to talk about cancer treatment and to try and make a difference to the treatment of eating disorders. I know I have a wide ranging audience who know little about either but have been affected in some way by one or other, or, in cases, both.
I have been corresponding with Julie O'Toole at the Kartini Clinic. She and her husband, Steve, saw me through one of the worst nights of my life a couple of years ago, when I was lying in a hospital bed with a BP of 50/23 and on every drip imaginable but completely conscious. Steve chatted to me on FB all night - he gets it.
I sent her an email saying something along the lines of the first paragraph and that I was buggered if I wasn't going to use my time left to expose the terrible treatment protocols at places like Sheppard Pratt - there are more to come about different facilities.
She replied thus:
Perhaps we should. However, there is some comfort in actually knowing that your time is finite, that you have x number of weeks left. It leaves you in the "now or never" situation. If I don't somehow reach people in both the Cancer World - cancer treatment protocols have NOT changed for 30 years, due to the inability to experiment and the inertia perpetuated by the myth that cancer is "mostly" curable - and Eating Disorders World - get with the programme. ED patients are deeply frightened people, not wilful vain idiots who want to be a supermodel - within the next few months, my opportunity will be gone.
I will be dead. I will not be able to "regret" this and "wish" that I could have "done something". So I will continue to try and hope that next year, other people will pick up my colours and flutter them in the breeze.
The t-shirts should arrive this morning.
We are thinking of getting some ones printed to sell for an Eating Disorder project we are hoping to launch in the UK within the next few weeks. Instead of the FUC, we thought about "FED UP" - Fuck Eating Disorders, U Poo" - a nice play on words. Anyone interested?