Friday, January 27, 2012

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?
- 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.

Sunday, January 22, 2012

Feminism 101 - Spoons as a concept…

Before we start, head over to Christine Miserandino’s piece from which the “spoon theory” has stemmed. It’s a brilliant piece, and the depth of understanding about what it is to have a disability that she managed to convey with her explanation is wonderful.

When I first started reading feminist blogs it wasn’t long before I started hearing about “spoons”
“I haven’t got the spoons”
“Urgh, I’m getting low on spoons”
“Anyone got the spoons to help me out with this jerk?”
And so-on.
I ended up asking a feminist friend to find out WTF people were talking about, because when you Google “spoon theory” you are more likely to read about the “silver spoon” sort of thing.
The overwhelming understanding in feminist circles appears to be that we only have limited resources to deal with our daily battles, whether they are personal, professional, or online. At times when there are heated debates on topics which may trigger us, those resources get depleted at a higher rate than usual.
Christine’s writing equated resources with spoons in relation to her Lupus, and the fact that those who live with Lupus have a constant struggle to maintain their lives while their condition deteriorates.
When people on the feminist blogs talk about “not having enough spoons” it may mean that they feel like they can’t deal with whatever it is that has been happening, do not have the energy to continue to debate, or just cannot find it in themselves to explain for what feels like the millionth time a concept to someone who may or may not actually want to learn.
Sometimes it is used among friends to ask for help. i.e. “I’m running out of spoons – can you come help deal with this troll?”
Sometimes to display distain at someone asking stupid questions, or repeating the same points. i.e. “I really don’t have the spoons to deal with you anymore.”

What is important to realise is that the Spoons concept was driven by someone with a long term debilitating illness. It is much loved by squillions of people who also struggle with limited spoons.
Go to twitter and use the hash tag #spoonies and you will find a reel of men and women all trying to cope with a myriad of disabilities daily and nightly. Their spoons are so much more valued than mine, just simply because I have more to start with, and do (usually) not have to truly economise with them.
It is for this reason that I don’t use the term “spoons”, because I feel like it isn’t really mine to use. I like the phrase, and I sure as hell think that it is relevant to everyone at some point in time, but it just feels a little like I’m undermining the original meaning now that I am in the fullness of health.

Tea-spoons is another phrasing that is less commonly used (as I have noticed), and the origions of this seem to be Florynce Kennedy. Check out the lovely Melissa McEwan over at Shakesville who uses the term regularly.

Just by nobody doing nothing the old bullshit mountain just grows and grows. Chocolate-covered, of course. We must take our little teaspoons and get to work. We can't wait for shovels."

I hope that this helps out people looking to find out what the heck is being talked about on the blogs when someone refers to “spoons”. Let's grab our tea-spoons and start shoveling hey?

Below I have included what spoons mean to other people, because there seems to be a slightly wider range than just what I thought.

“spoons” is just such a nice, succinct way of expressing “a finite, slowly-renewable resource I have to consciously think about allocating.”

I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness.

Maya of “capitalism bad”
“Something that you might like to be aware of is that the person who wrote it, and others who have similar health issues (she has Lupus) are very critical of the way that it has been used much more broadly than originally intended...
There is an argument that the wide adoption of the metaphor for the lives of people under very different circumstances is a form of appropriation."

I always thought it referred to having the patience to spoon-feed information in small and easily digestible chunks. But I think that was an assumption or I made it up-recently read the spoon-theory some1 linked to on THM & it's very different.
I should've made it "patience, time & ability" I realise it's more than just about getting frustrated with newbies sometimes.

1. We, the community of people with invisible chronic illnesses, need a terminology that describes just our experiences to use amongst each other and with the outside world.
2. That terminology, so far, is mostly The Spoon Theory.
3. The spoon theory has been great in getting the message across that our pain and fatigue and other symptoms make our daily lives very different from people who don't have invisible chronic illnesses.
4. People have taken the terminology and run with it.
5. This is great when it's being used to describe the experiences of people with invisible chronic illnesses.
6. This is problematic when it gets used for other things.
8. Thank you.

I think of #spoons as an inverse of harmful culture, which is created by millions of small actions, each on their own trivial but collectively add up to something monstrous. #Spoons is the neutralizing of harmful culture in the same way - in tiny steps.
And the great benefit of #spoons is that the big problem is too big to comprehend fully, or to try to address. Whereas #spoons allows us to deal with small actions, one isn't overwhelmed by the enormity of the problem.

there's this, though it doesn't add anything. :)

Can't find the post, but short answer: pick the fights that are worth winning, and self-care is really important. No point trying to be any kind of activist if you're too tired for the fight.

There's another spoon concept, of using a teaspoon to empty an ocean, of misogyny usually. A huge and impossible task for one person, but little bit by little bit, as feminists from all over the world work on a issue, each wielding a teaspoon, the ocean is lowered.

NB: I have found Christine Miserandino very approachable and there may well be a response from her updated to this page in the next few days... fingers and toes crossed :)

Tuesday, January 17, 2012

I hope this makes you laugh...

This is what happens when I get over excited about an idea.
The words get jumbled in the frenzy of awesome.

enjoy the laugh...

I’m definitely a theatre nurse.

When some-one stabs you with a sharp needle covered in a strangers blood, because they aren’t concentrating, and your response is... Oh, don’t feel bad, these things happen.
You are probably a theatre nurse.

When you walk into a house you are thinking about buying and you automatically check the ceiling…
You are probably a theatre nurse.

When you can talk for hours about topics that don’t involve anything controversial, or go for days without speaking until spoken to…

If it is a choice to brush your hair before work, because no-one will know if you don’t…
You are probably a theatre nurse.

If your nails never grow long enough to bite because of the chemicals you rub on them hundreds of times a day…
You are probably a theatre nurse.

If you can hold around 5 kilos of weight in a strange position for hours at a time…
You are probably a theatre nurse.

If, when your foot starts getting warm and wet, you just assume it has fallen asleep rather than checking if something warm and wet is leaking on it…
You are probably a theatre nurse.

If your idea of funny is body fluids in someone’s shoe…
You are probably a theatre nurse.

All my love to all you OR nurses out there.
Kia Kaha.

A new year.

A wise man stood in the middle of a crowded room and told a joke. The
audience laughed like crazy. After a moment he cracked the same joke again and a little less people laughed this time.
He cracked the same joke again and again, when there was no laughter in the crowd, he smiled and said,
“When you can’t laugh on the same joke again and again, then why do you keep crying over the same thing over and over again”

I realised last night as I read through some of the fervently angry, or frustrated, or heated replies to Rachel’s post on the hand mirror, that if people can get that angry at cupcakes… I hate to think what actual stressors are like.
This year is year of the dragon, and I will be trying to let trouble run off me like water off a dragon’s back. Consequently, this blog will be monitored tightly, and I will continue to only be dealing with trouble in my own posts, not borrowing from others, or fighting battles with people I know don’t want to learn.
If this makes me lazy, or limited, or privileged or whatever, I don’t care.
Because the internet isn’t everything.
That I wake in the morning with a smile for my loved ones, THAT matters.
That I can deal in a functional manner with conflict and challenges at my job… That matters.
That I continue to work outside my usual paid job as a volunteer, giving back to my community – that matters.
That I have effort left for me, the people I love, and the communities I contribute to… That MATTERS!!

So by all means, let’s meet up in the real world. Grab a drink, do some knitting, go hiking, go down and scuba-dive.
But I am done wasting time repeating the same motions, for the same negativity.

Happy new year.

Insanity: doing the same thing over and over again and expecting different results.
- Albert Einstein