Chaos to Cosmos
The path from chaos to cosmos was discovered by telling one's life story

Monday, 28 April 2014

Breast cancer mammograms: overrated, overhyped and over-diagnosing, compounded by evidence of harm

Is it time to radically re-think the flawed philosophy behind the 'early detection' tenet of the breast cancer awareness movement? They go against the Hippocratic Oath (they do harm)! At last somebody else is saying it. It's why I've been refusing mammograms (and NOT supporting pink-ribbon "awareness" campaigns) for years; that and the pain of them (unbearable pain when you have fibromyalgia) and having had a false positive diagnosis of breast cancer myself back in the 1990's, with all the accompanying stress that brought. I cannot adequately describe how that diagnosis affected me (severely compounded by the fact that it was delivered with a total lack of tact and compassion, publicly in the busy corridor of a Spanish hospital), but I 'lost' several days where I could not function, could not speak, could not think, could not sleep, could not eat ... was enough to cause PTSD.

Yes, undoubtedly, this is not as bad as actually having cancer, but there was no way for me to know that at the time and, by then the harm was done.
"In calculating the role of population-based screening, the absence of benefit is only compounded by evidence of harm: 21.9% of breast cancers found through mammography screening represented over-diagnosis, according to the Swiss Medical Board. This means that one in five women who was told she had breast cancer after mammography screening received unnecessary treatment."
It's lucky I was sceptical and rejected the (barbaric) treatment offered me as the only option, or the end of this tale might have been very much worse indeed.

Breast cancer mammograms: overrated – and over-diagnosing women

Tuesday, 15 April 2014

What is 'disabled enough' for some people?

What is it that makes some people think that they're entitled to their ill-informed opinions, which, when voiced, are clearly a cause of abuse and harm? 

This is something that happened to me, when another attendee at a yoga class - I would mention this was a gentle yoga class aimed at old folk and those of us with chronic conditions - saw that I'd parked in a nearby disabled space. She told me - in that haughty tone that people like her use - that I was 'not disabled enough'. When I told her I have a Blue Badge, she more or less accused me of fraud.

(Let's not even mention the "Have you tried yoga?" brigade. They can STFU! Isn't it enough I was pushing myself to try this in the first place? Shouldn't have.)

Anyway, knowing she would be likely to gossip to others in the group and slander me, I decided to write an open letter and hopefully nip it in the bud. At least make it clear to her that I was not about to let it go. This is what I wrote: 
You probably won’t realise just how upsetting your words were last week, but I was so upset I was unable to formulate a proper response at the time and instead went home flattened and emotionally spent. What I want you to know is that it’s precisely because I have a Blue Badge - and because my husband is able to provide me with a car - that I seem to be able to do things. It is only because I have these things that I now have some independence. I’m still only able to do something for a couple of hours on one or two days a week.

You certainly have seen on various occasions when I have had to sit out during yoga because I’m feeling too dizzy or unwell to continue. 

The whole point of coming to yoga is to try to help some of my symptoms and it is imperative that I am able do this in a friendly, non-judgemental environment. 

But you don’t see me for the other 166+ hours per week, most of which I have to spend either in bed or reclining on the sofa because I am too ill or exhausted to do anything else. 

This is profound, unrelenting, medical fatigue and weakness - not just feeling a bit tired - that means I may appear able to do things, but even when I can do them, I can usually only do them once before being exhausted. You can’t see that even the minor effort of walking a few yards causes me to feel exhausted, sick and dizzy. You can’t see my symptoms, but that does not mean they are not there or that I’m entirely able and not in need of help. In fact, it takes countless aids and adaptions for me to be able to have anything vaguely approaching a normal life – which is the whole point of these assistance aids.

You also weren’t there when I was diagnosed by GPs, rheumatologist, the pain clinic, the ME Clinic, or with those who carried out the assessments for my benefits and Blue Badge … 

You haven’t had to live with my chronic illnesses – and learned that pacing to avoid doing too much so I don’t exacerbate my symptoms is the only “treatment” available – for 41 years, since I was 16.  
Some days, I can’t do anything at all. Nobody sees me on those days.

So when you suggest that I am ‘not disabled enough’ to have a Blue Badge, or that the system is wrong for me to be able to get one, please consider these facts, along with the knowledge that I’ve crawled my way up from previously being constantly bed-bound to being able to do what I can today, precisely because I have help like a Blue Badge, but I could easily find myself back in that position if I did not. 
Maybe that would be disabled enough for you? 
(NB: I've since deteriorated, no longer drive and don't go out alone.)