Unsuccessful IRL…

Keyboard warriors… people with nothing better to do… SJWs, unsuccessful IRL… not helping in the REAL world…

I quit one of my volunteer roles last week and cried hard about it. I will miss the people I work with, the fun we have, and the identity I held as a volunteer for that organisation. But one of the strangest reasons my volunteer work is important to me, is that as a feminist online the above phrases are used to undermine my comments. I am particularly sensitive to the idea of “simply bickering online” rather than getting out there and “really making a difference”. Frankly, it gets to me.

This is bizarre, because during the day I literally save lives, and since I was 16, I have always had a volunteer job as well as my paid role. I have no reason to feel vulnerable to any accusation of lack of action, and yet it gets to me.  Congrats Jerks.

In the future I may not always be well enough to do a paid job, let alone additional work on top of that. My wellness may deteriorate and I may be stuck at home, “just” online.

And to that I say THAT IS GOOD ENOUGH.

In fact, it’s not only good enough, the communication of equality, equity, fairness, and justice to your community is PIVOTAL. Without good marketing, the best brands fail, and we need a good comms team for the decency of humanity. The other side may not have particularly good communication, but they make up for it in the sheer amount of filth they spew onto the net each day.

When we look at the Violence pyramid above, far fewer people are actually assaulting and physical hurting people than there are making horrible jokes, degrading other people and using problematic language to perpetuate issues. So for every person out there literally saving lives, we need 100 at home explaining to Uncle Jack that his emails are gross and offensive and no one wants them. 50 people need to be online showing their friends that they CAN speak up to racist FB posts. 20 people should be on twitter, expecting more of allies, and speaking up for people being harassed and abused. 5 need to be brave enough at work to ask a colleague to explain how that offensive joke was funny.

The people working at the public face of activism are pivotal, they are important, and even if that IS all they do, it is of value.

To expect more of anyone is rude. It is ableist and objectionable. Most people have lives, families, jobs and health to take care of. The fact any of us have time for this, which we can do from bed, is an unpaid miracle and yes, we have things we would rather be doing!

So next time someone uses “they have nothing else in their lives” or “not really helping” as a critique –think twice about supporting them.

Alternative health from Alternative medicine.

I once had a patient that we needed to an insert a portacath into. A portacath is a catheter inserted into the large veins of the patient, to lower the risks of “thrombophlebitis” or inflammation of the veins during chemotherapy. Chemo-therapy is some nasty stuff, and the larger veins have thicker walls and a higher volume of blood, helping to dilute and protect against localised issues with chemo. This patient had secondary cancers throughout most of her systems, and was not having the port inserted for chemo use. She was having it inserted for ease of use when receiving her Vitamin C therapy.

I’m not going to explain how vit c therapy theoretically works, please go ahead and google it, but I will point out that even if you skim the surface of research, there are three prospectively randomized, placebo-controlled studies involving 367 patients documenting no consistent benefit from vitamin C among cancer patients with advanced disease.
On top of the lack of proven efficacy, high doses of vitamin C can have adverse effects. High oral doses can cause diarrhoea. High intravenous dosage has been reported to cause kidney failure due to clogging of the kidney tubules by oxalate crystals.

As you can tell from my lack of interest in the “facts” behind the therapy, and my disclosure of negative findings on it, this is a biased blog post! I am not a big fan of “alternative medicine”. For this reason…

"Alternative Medicine", I continue
"Has either not been proved to work,
Or been proved not to work.
Do you know what they call "alternative medicine"
That's been proved to work?
Medicine."
- Tim Minchen, “Storm”

But this post isn’t about debunking questionable therapy; it is about how our team responded to this. It probably isn’t what you would expect.

When I questioned the patient’s current state of condition and treatment, the surgeon informed the team why we were inserting the portacath, and the fact that the patient was receiving vit c in high dose transfusions from her GP.
There was a long pause, and then I asked the surgeon “what are your thoughts on vit c therapy for cancer?” The surgeon turned to the anaesthetist,
“What chance does this woman have of surviving these mets?” the anaesthetist glanced at the waiting nurses
“a snowballs chance in hell I’m afraid”. There was a heavy silence in the room. We joke about theatre staff being heartless “not people people” but the truth is, that everyone there cares deeply about the patient. The surgeon continued operating, and after a while he spoke.
“So the patient will not survive. There is nothing we can do. The patient obviously has a strong rapport with her GP. She believes that the vitamin C is improving her quality of life as well as her possible outcome, allowing her to live a fuller life for the time she has left… Who cares what MY thoughts are?”

I suddenly realised that for all that I worry that surgeons are outcome focused, there are a large number, like this one who respect that we are a small part of a bigger picture. We are an even smaller part for those patients whose cancer we cannot just cut out.

On one hand, it infuriates me that someone is making money out of this woman’s remaining months, for something which will have little, or no positive effect.
On the other hand, she believes that she feels better when she has it, and this in itself has an effect.

The problem is not in the patient, or the therapy.
It is in the fact that we allow the term “alternative medicine”, and yet it is not regulated in the same way as actual medicine.
Vitamin C is a dietary supplement, and until proven as such shouldn’t be marketed as cancer treatment.
If you would like to have your say on the way natural health products are regulated in NZ, now is your chance.

Public submissions are now being invited on the Natural Health Products Bill. The closing date for submissions is Friday, 24 February 2012.
This bill establishes a system for the regulation of low-risk natural health products in New Zealand.
The bill will require someone distributing “natural health products” to submit a product notification to the government. This notification must include health benefit claims made for the product and a declaration that the notifying person “holds evidence to support the health benefit claims.”
Unfortunately the term “evidence” is defined in the bill to include “substantial evidence” OR “evidence based on the traditional use of a substance or product.” Which opens a big ol’ can of worms in the way of anecdote, hearsay and myth being legally considered “evidence” of efficacy.

If and when this bill is passed, it can be a fantastic tool to allow the use of a wide range of proven therapies in conjunction with mainstream medicine to help people with their health, protecting the general public against the health and financial cost of unproven crud, pushed by those who should know better.
Because those who work in mainstream medicine know that patient outcomes are not just about survival, we understand the need for quality of life. We WANT people to have the best chance possible from wherever they receive it. But there is no reason that genuine proven therapy’s should be side-by-side on a shelf with unproven products all under the same title of “alternative medicine”.

Please, if you have an opinion, have your say.

We are on the same side...

“We are on the same side”.
A message received by me through twitter from one of the NZ girl editors.
No kidding!! Only an asshole is FOR breast cancer, that doesn’t give you carte blanche to do anything in the name of fundraising.

*deep calming breath*
Before I start – big props to the women who have the self control to write functionally while still pissed off (I waited ‘til today, so it wasn’t a jumbled spew of rage).
Rachael covers this whole thing very nicely; take a read of what she has to say here.
Boganette made into the news with her tweets, and her post combines her dark humour with a clear cut point.
For those who missed the memo, this post is regarding the NZ Girl website's warped idea of breast cancer awareness by asking women to post photos of their breasts, in exchange for money to be donated to the cause (this is a bit vague at this point).

One of the first computer lessons we teach young people is internet safety.
Don’t give out your phone number or address.
Don’t mention where you go to school.
Sure as heck don’t post photos of yourself that you may regret.
A good basic rule is to think of the person who scares you / creeps you out the most, and then consider if you would like THEM to see what you are about to post.

This is the one of the key issues about the latest "Breast cancer awareness campaign" – they are actively encouraging girls and women to send in photos of their breasts.
It may well be a good idea right now.
It might still feel like a good idea next week.
What about next year? Or in ten years?
Or when you realise the NZ girl site isn’t crashing because everyone thinks those pictures are ‘empowering.’
They just want to stare at real tits for free.
I find it very hard to believe that people marketing-savvy enough to run a successful site like this don’t realise that it’s not hordes of women leaping at the chance to rate breasts.
And I find it bloody irresponsible that a site aimed at ‘girls’ is exploiting them for ratings.

Secondly, and no less importantly. Breast cancer is NOT about breasts!
Breasts are lovely. Cancer is not.
Breast cancer affects men, and women whose breasts are barely discernable, it affects women who have already had their breasts removed.

As an exersize, I would like to suggest some other “cancer fundraiser” ideas.

‘Hit the Sack’ – submit an anonymous photo of a view of your gooch and ball sack in celebration of the preciousness of men’s prostates.

“Leggy ladies” – raise awareness for the 5th biggest in-patient killer in Oz – DVT, and the fact it is most prevalent in women. Send in photos of your legs.

“Don’t be an asshole – get a check up” - submit a photo of your O-Ring and raise Bowel and rectal cancer awareness.

"Feel the burn" – NZ has one of the highest rates of Chlamydia in the world – send in a pic of your swollen balls or discharging Vag, to raise awareness.
(Actually – at least that one is RELEVENT, as it would educate on what the symptoms look like)

If they seem stupid or irrelevant, maybe you need to ask why showing breasts aren’t.
Because they are fun?
Pretty? Hot? Sexy?

CANCER IS NOT!!!

I also find it thoughtless that they used the term “pair” when referring to sending your photos in. A fairly clear insight into the fact they were NOT thinking about cancer survivors when asking for submissions.

Urgh, there is so much wrong with this particular “fundraiser” that it is not even funny.
And putting a post up 24 hours later with info on detection and the NZ breast cancer foundation doesn’t really cut it.

This post is shite. I’m tired and frustrated, and tearful.
Sorry that the words aren’t fluent, I’m finding this one a little tricky.