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Saturday, 17 August 2013

Courage?

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:

well...we should all display the bravery that comes with the consciousness of dying, for after all, we are all on a trajectory aimed at our personal deaths.

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?



3 comments:

  1. Fuck Eating Disorders United Peoples

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  2. Charlotte, I so admire your determination to leave your mark. I cannot agree that Cancer protocols have not changed in 30 years though. I graduated 26 years ago, and they have changed markedly in that time. Treatments for leukaemia, breast cancer, prostate cancer, ovarian cancer and melanoma have all changed over that time, and survival rates have altered significantly. Cervical cancer prevention and treatment has also changed. Surgical treatments have altered, chemotherapies have altered and there are new medications. There has been the new onset of immunotherapies for some leukaemias and melanomas. There is now a vaccine for HPV to reduce the risk of cervical cancer. Change is however very slow, and needs to continue.

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  3. rosesarered

    Perhaps what I should have said is there have no been no big innovations in the way cancers are treated. The prescription of surgery, chemo, radio is the same. There have been improvements in the actual treatments but no real big breakthroughs. Research is stiffled by the lack of money - the PR and advertising budgets of the big drugs companies are 3 or 4 times that (at least) of R&D. The treatment regime is brutal. It really is. It is faceless, mechanised brutality on a cattle to the slaughterhouse scale. This is no one's fault but unless you have been through this somewhat dehumanising process, you cannot begin to imagine the psychological effects of it all.

    Whereas I applaud the advances you mention, the sad fact is that Breast Cancer is now perceived by the general public as a "easily curable" cancer and somehow a patient's responsibility is to get better and not die. The fluffy pink campaign has gone too far. Cancer is shite - all cancer. The younger you are, the more shite it is because it grows so fast. People need to realise that it is not all brave people jumping out of aeroplanes, getting back to "normal" life. There are, quite frankly, very very few who are not scarred mentally and physically by the brutal painful treatment.

    ReplyDelete