Angelina Jolie, cancer, and why you might have privilege too...

I got severely shitty with the large number of “check your privilege” tweets on twitter today about Angelina Jolie’s news that she had opted for preventative bilateral total mastectomies due to her genetic risk for breast cancer. My reasons for being so grumpy went deeper than 140 characters could explain, so I kept my mouth shut and waited until I got home to write this.
The fundamental issue I had is that there is only one reason to have a preventative mastectomy, and that is to avoid a condition that could KILL you. So if you are worried about anything other than survival, when you read about Angelina Jolie’s choice, Check YOUR privilege.

YES, that’s right. If you didn’t get a cold fucking chill down the back of your neck, and that little voice in your head saying “I know why she did that”. CHECK YOUR FUCKING PRIVILEGE.

I’m not saying that you haven’t had to think about death, dying, or risk to your life.

In fact, most people, by the time they hit 50 have probably had some form of lump or bump, or scary moment that has meant they have sat down and written a will, and thought about their life-span and how long it may be.

But MOST of us had those moments thrust upon us.

I didn’t go out looking for trouble. It came to me.

My friend didn’t expect to find a fatal cancer, it was caught by her lovely GP.

My Uncle didn’t expect to start having seizures for no reason – but he did.

And THEN, and only then, did we start to take action to do with our own mortality.

It takes courage to look death in the face and make sensible choices. To take steps to decide to fight. Perhaps even to stop fighting, and make the decision to turn and face it and make the most of time remaining.

It takes bravery.

It also takes time, and support and endless cups of tea and good people.

A lot of people don’t look.

They avoid check-ups.

They skip prostate exams.

They delay mammograms.

They don’t visit the doctor, because “everyone has blood in their poop sometimes.”*

They make excuses, they look the other way. They avoid the issue.

Because this shit is HARD people.

And this woman didn’t just deal with something when it came to her, she anticipated it, sought out the hard truth about her mother’s death and faced her own mortality. Took some MASSIVE steps to avoid a bad outcome in the future, and has reduced her risk.

But this took courage, and the insight that her body wasn’t in her control. That her genetic code could eventually turn against her.

A real understanding that she could die.

And that’s not a privilege, that’s life. But I think you missed the point if you are worried about who paid.

*they don’t. Always check with your doc if your poop has changed or you notice blood.

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.

4) Raising my hand for help.

Raising my hand for help. Written 1/8/11

I have four pages of scattered disjointed writing in my “latest blog” file in word.
It is all about my struggle with depression over the last few months.
I realised today when I sat down to start writing again properly that none of that was ever finalised and put into this blog.
So for all the people out there with depression, and for those who love people with depression; these posts are for you.
As the week progresses, more posts will go up, and they will be numbered, from earliest (furthest in the past) to most recent to make it easier to keep track.
I hope that they help you see light and hope, and possibility. Because even if it can’t be seen now, it is there, and you WILL find it. You just have to stick it out today. Tomorrow will come.

My depression has been hideous this year, so I went to the doctor today.
When the doctor asked me if I had been having suicidal thoughts I just looked at her and said “I can’t be bothered.”
That shocked me.
As soon as the words were out of my mouth I started back and stared at her.
“I think I need help, I can’t keep fighting this alone.” I said, and burst into (what was probably the 10th lot that day) tears.
I had expected her to question why I hadn’t been exercising, getting sun, getting sleep, eating well, keeping up with socialisation etc etc etc.
She didn’t.
When I raised it (hyperventilating as I listed the ways I had let myself down) she stopped me.
“If you haven’t been doing it, there is a reason; and you won’t start now you are this far along.”
Up until that point I felt like I was drowning. The cold water was making me shake and panic. I couldn’t breathe.
I was terrified.
I was so frightened that if I let go of tightly clutching myself and raised my hand above my head that I would sink completely under the water, and no one would ever find me.
The doctor’s sympathetic eyes and reassurance that I could do this made me realise that I could get help. A weight lifted off my shoulders. I wasn’t a failure. One winter of struggling in nearly TEN YEARS of maintaining a positive mental health with S.A.D. was a fucking victory.
And there are drugs, and professionals, and loving people just waiting for me to signal that they can step in and help.
It’s ok to raise my hand.

The stuff they don't show you in medical shows.

I’ve recently returned to nursing, if you are squeamish don’t read this one!



Stuff they don’t show you on the TV medical programmes.

As a person who works in the OR it is almost impossible to have a cup of tea without also having a wee straight after.
Working with long surgery a LOT I got into the habit of going to the bathroom on any and all breaks I got, because you never know when the next one will be. Fluid balance must be maintained at all times so that in the worst case scenario, you won’t need to un-scrub to dash to the loo.
On that note, specialist OR nurses and doctors have ALL seriously contemplated secretly catheterising themselves to avoid the shame of being the first one to crack when you are at the table all day!

We listen to music while we cut you up.
One of my surgeons loved Jack Johnson, an anaesthetist has a large collection of humorous music for operating time.
Arguments are had over radio station, volume and whether to have it at all.
8-12 hours stuck in a room with the same people and a machine that goes *bing* every day would be CRAP without music, so please don’t worry that your team is unprofessional if the radio is playing when you are wheeled in.

You probably know from the TV that we fight over the “cool” cases, but did you know we play paper scissors rock to avoid the cranky surgeons?
If you are a surgeon and you have a constantly rotating team, it’s because you are a jerk and we are trying to avoid you. Bring a cake, and stop being an asshole.

We still get grossed out.
I can be up to my elbows in someone’s bowel for a case, and afterwards flinch when the tube is taken out and there is a wee bit of mucus at the end. We are people too, and have stuff that we don’t like. Generally as a team we are open about stuff we don’t like and negotiate to swap for the stuff we don’t mind.

We have a life.
We look forward to leaving work as much as an accountant or receptionist. We love what we do, but for most of us, it isn’t our whole lives. Friday is still Friday and don’t love a Monday morning any more than you do.

As a scrub nurse you will eat roughly 1 litre of snot each winter.
It is something people don’t think about, but when you have a cold in the office next time, count how many times you blow your nose. Now imagine that you have a mask over your nose and mouth and can’t touch it for roughly 2-3 hours at a time.
Yes; each and every person you know who works in an operating room knows EXACTLY what snot tastes like, and has ploughed on working regardless.
And you thought the SAS was badass.

Organ donation. Not just the donor's decision...

There is a lot of mis-information outside the hospital about the organ donation stuff that people really care about beyond the medical jargon.
"Will the doctors be gentle?"
"Can we still have them for a funeral"
"Will they get less care if they can be used after death?"
"what about MY choice?"

I hope this is of help to someone, and if just one person takes steps to ensure that their organs will be available for donation, I am happy. A lot of the information on this page can be found at Organ donation NZ as well as being based on my own experience as an OR nurse (but not part of the transplant team).


There is plenty of heart wrenching information about those of our community who need a second chance by way of an organ donation. Enough information that I didn’t think twice about putting that I am an organ donor on my driver’s license.
It was an easy enough decision for an atheist like me, no rules from god, distaste from my family or concerns that the soul might in fact be stored in the heart. Just the idea that if I die young, the waste would not be so great if I could benefit someone else.
For the average Jo, there is not as much good strong information about what happens to the donor and equally importantly, the family of the donor.

An amazingly helpful link is this one here taking you through the donation process. Please read this before continuing on through my blog post.

In New Zealand if you wish to become an organ donor there are a lot of barriers between you saying yes, and the right thing happening when you die.

• Even if I say yes; if I die suddenly and my heart no longer pumps, there is a very high chance or organ death, and I can no longer be a donor.

• Even if I say yes, and I die of brain stem death whilst my heart continues pumping; my partner can say no.

• Even if I am a valid donor, and my partner and I say yes; any other family member can say no.

• Even if I am a valid donor, and everyone involved says yes; if they sign me off as brain dead, turn off the ventilator and I do not stop breathing within a certain amount of time, I will be put back on the ventilators to continue being cared for.

It is no wonder that the annual rate of deceased organ donors in NZ has always sat under 47 pa.
Not only do you need to be ok with it, but your family needs to be ok with it too.
Talk through the positives and the negatives.


The negatives.

Your family will be asked about this by an intensive care doctor, once the diagnosis of brain death is clear. They will be heartbroken and stressed and do not need to be making hard decisions at this time

Although the donor is brain dead, and would never survive without the machines helping them breathe, they appear very much alive, just asleep. – This can be hard to cope with.

The donor does not visibly ‘die’ (their cardiac and respiration stopping) in ICU. They are taken to theatre still breathing, with a heartbeat. - This can be hard to reconcile with the diagnosis of death.


The positives

There is more done for a donor patient to ensure a correct diagnosis of death, than is done on a non-donor patient.

If you have discussed donation with your family in advance and they understand what is involved and are happy for donation to take place, the idea that a positive is coming from it, can be a small ray of light in a horrible situation.

Once the patient is assessed to be a donor, and the family has been asked, donation is still very personal and the family can select what they are happy donating, e.g. My partner might be happy with donating my heart, but does not want my corneas taken – that is totally ok.

There is a donor coordinator whose only job is to help facilitate the smooth running of donations, and ensure the wellbeing of the donor and donor family.

The donor’s body is returned to the family for them to say their goodbyes in the same way as any patient who passes away in the OR.

The donor is treated just like any other patient in the OR. It is a surgical team working respectfully on them. Their wounds are sutured and dressed, just like they would normally be.

“Although confidentiality is maintained, recipients are able to write an anonymous letter of thanks to the donor family. These letters are forwarded through Organ Donation New Zealand to the family of the donor, if they wish to receive them. Donor families are also able to write to recipients and these letters are handled in the same way.” *“Each year in April or May, a service is held in Auckland in recognition of those who have donated organs and given the gift of life to others. A second service is also held on alternate years in Wellington and Christchurch.
Donor families, recipients and their families, and health professionals are invited to these services."

So PLEASE, if you do want to be an organ donor in NZ, don’t just ensure that it is written down. Talk to your loved ones about it and make sure everyone understands and agrees.
I have personally discussed this with my close family, to the point where my parent’s understand that I would still be breathing when I left them. They know as much as they can know so that if, FSM forbid something should happen, the decision has already been made and they can just go through the motions.

For more information on the limitations of NZ's current Organ Donor system please visit http://www.givelife.org.nz/ and take a look.